Thursday, August 31, 2006
Elizabeth Archives - August 2006
August 2006 Email Updates
Email Update Sent August 4, 2006:
We are writing again to ask for your prayers for Elizabeth and our family. Since our return from Memphis, Elizabeth has not been herself, eating about half her usual amount, sleeping for short periods of time, grunting a lot, and generally fussy. We had hoped she was just getting ready to pop another tooth, but last night, despite still being on very strong antibiotics designed to kill many different kinds of infection, she began having very high fevers again (about 103 or so). We took her to urgent care today, where tests have revealed that her portal vein has clotted off.
In the tradition of Elizabeth's ICU days, here's a more medically detailed explanation of what's going on:
This vein gathers the blood from the intestines and brings it to the liver for processing (detoxification and extraction of nutrients). If it is filled with a blood clot, those functions cannot be carried out. The toxins can build up leading to sleepiness and poor brain function. Without the extraction of nutrients, malnutrition and growth retardation are inevitable. Additionally, when the blood cannot take its usual route through this vein, the pressure builds up in the abdomen. That pressure causes the spleen to swell (Elizabeth's is twice its normal size right now), and puts her at risk for rupture blood vessels leading to massive bleeding into the stomach. Fluid leaks out of the blood vessels into the space around the intestines to form something called ascites (that's why her abdomen is so swollen). That fluid contains lots of nutrients and is the ideal place for bacteria to set up shop and grow. The leading theory now is that is what has happened and that Elizabeth's infection is of that fluid.
The in-hospital doctors have just now started seeing her to plan what steps to take next. At the very least, they will try to drain some of the abdominal fluid (ascites) to verify the infection, start her on even more powerful (and therefore more dangerous) antibiotics, and then begin the search for a cause for all this.
Tonight's brief list of requests:
1. That her infection would be quickly killed before it becomes more severe.
2. That her portal vein would be miraculously reopened before our very eyes
3. That Elizabeth's little brain would forget all the things that are being done to her to get these answers
4. That Sara and I would be strong in our faith
Thank you for joining with us.
Matt
Email Update Sent August 5, 2006:
Thank you all for your kind expressions of thoughts, encouragement and prayers. Despite a nearly sleepless night, we're doing alright. Elizabeth's night was certainly rougher than ours. Around midnight, she began having much more difficulty breathing. She was moved to the ICU for closer observation, and though she has improved a little, the doctors are working extremely hard to keep her from going onto the ventilator.
One of the the fourteen doctors who have taken care of Elizabeth in the last 24 hours said, "Elizabeth is a very complex case." Though she her medical condition is certainly complex, the way before us seems simple- hold on to our faith in God's perfect plan and rely on your generous love and support.
As more information becomes available, we'll pass it along.
Thanks,
Matt
Email Update Sent August 6, 2006:
Hi everyone,
Thanks for continuing to pray, and for your calls and emails. It means so much to know you're supporting us from near and far. Just to keep you from worrying in the absence of an update:
Elizabeth is stable today. She's breathing easier with the assistance of Oxygen in her nose, and they removed some of the fluid from her belly (ascites) to test for infection and that gave her a little relief as well. After multiple failed attempts at putting in IVs, they were able to get two good ones in her hands, so she is getting the labs she needs as well as the antibiotics.
They've taken a hiatus from testing, poking, or otherwise bugging Elizabeth today, so she'll rest up in preparation for what will be a busy week to try to figure out the source of the blood clot and how to treat it without harming Elizabeth with the side effects of treatment.
Matt and I are hanging in there. Matt's working (albeit just one floor up from Ej - so he's quickly available) and I'm at Elizabeth's bedside. I know my stable emotions and relatively alert state of mind are only the result of God's grace. We are so grateful for you.
Love,
Sara (for all of us)
Email Update Sent August 7, 2006:
Hi everyone,
Matt's working, so it falls to me to send the update today. It's a nice distraction from the ICU and it's something I can DO which is a change of pace from just sitting around watching things happen to Elizabeth. She did well overnight and when a VERY competent nurse came on and gave her morphine last night, we felt assured that she would be ok if we both slept at home. My parents arrived and have given Grandma and Grandpa Harms a break from their round the clock help, so we're falling into a little bit of routine. I was writing in Elizabeth's journal this morning and telling her that this ICU routine feels really familiar. That is both sad and comforting. We don't want to feel comfortable in the hospital, but this isn't as scary as the first time. We know many of the Dr.s, Nurses, Attendings and Fellows so at least I'm not trying to get to know the world here at the same time I'm watching Elizabeth go through this.
The hard part is, she's a different baby than she was during her first stay. We know her now, and she knows us in a deeper way...so that makes it harder to leave her, and harder (if it's possible) to watch her experience the pain and fear. That also makes it easier for us to comfort her, we know her and know what she likes and doesn't like. She LOVES her kiki - that beautiful pink blanket she kept with her during her 1st hospitalization and has slept with since. Having a comfort tool has helped tremendously.
Today the Team is regrouping, collecting input from the various specialists and trying to formulate a plan. The goals for the next day or two are to:
1) wean her from her oxygen
2) increase her feeds. Unfortunately she's back to her foul tasting no-fat diet, fortunately we can bypass her taste buds and put it directly into her g-tube.
3) get an echo to make sure she doesn't have a heart infection that's contributing to her illness
4) get a few more tests to give us a clearer picture for dealing with her clot. We still need to find out if Elizabeth has a clotting disorder which led to this portal vein clot in the first place, which would complicate the plans for her treatment.
Right now she's pretty comfy with the help of some morphine and a Baby Einstein video.
Thanks for your continued prayers and encouragement.
Love,
Sara
Email Update Sent August 9, 2006:
Dear Faithful Supporters,
Today has been a whirlwind of activity and studies for Elizabeth, and sadly, the resulting news is very disappointing.
Increasingly, it looks like Elizabeth's portal vein thrombosis began a long time ago, possibly as far back as her first abdominal surgery in November. I don't want to play Monday morning quarterback. But in retrospect, there were many signs pointing to her portal vein condition that Elizabeth's doctors should have noticed and acted upon. They are very apologetic about missing the signs and signals. God has given us the forgiveness we need to keep from being angry with them, but it is frustrating to think that this turn of events might have been prevented.
This afternoon, Elizabeth was placed on the ventilator for two important tests- and MRI and an upper GI endoscopy (like a colonoscopy, only down the esophagus). The good news is- she tolerated both without problems (except they allowed her body temperature to fall to 33.8 C by leaving her uncovered too long). There was fear that her large abdomen pressing on her lungs would make getting of the ventilator difficult. But Elizabeth handled it like a champ and is now breathing comfortably for herself.
The upper endoscopy shows that Elizabeth has developed varicose veins all along the inside of her esophagus. These vessels are not supposed to be dilated as large as they are, resulting in a very thin, easily ruptured wall. If ruptured, the bleeding can be life threatening, and because of location, very difficult to stop quickly. Elizabeth's veins looked on the verge of rupturing. The silver lining in this information is that we've hopefully caught this at a time when treatment might prevent her from having life-threatening bleeding into her stomach/intestines.
While the GI doctors could inject alcohol into each of the veins to help them clot and hopefully scar down, this requires frequent endoscopies (daily for a little while), each of which might require going on the ventilator. The only other treatment that would help prevent bleeding from these vessels is termed a "shunt." This consists of finding a way to divert the blood building up in the abdomen around the clot. This is where the MRI comes in. The best "shunt" surgery takes the open vein near the intestine and reattaches it to the open veins inside the liver. Today's MRI basically showed that there are NO portal veins in the liver to form that reattachment site. So we already know that Elizabeth will not be a candidate for the best surgery for her disease. Tomorrow, a liver surgeon specialist will see her and then meet with us to talk about the other options. As best as our reading has informed us, the side-effects of the other procedures are quite problematic, ranging from retardation of growth, removal of the spleen, mental slowing, etc...nothing resembling the picture of life in Holland we had begun to envision.
One of the harder things about this process is this: many of the praise reports we've sent out recently were ironically signs of her growing problems. For example, we mentioned her continued rapid weight gain, despite not meeting her goal for feeding volume. It's now clear that all that weight was fluid retention in her abdomen. She also appeared to be "fattening up," developing some chub in her arms, legs and face. Now that they have dehydrated her to try to get rid of her abdominal fluid, her "fat" has melted away leaving her very thin and almost malnourished appearing. That "fat" must have also been fluid retention.
We are also struggling with this fact: Sara and I had just started to accept our "life in Holland" (if you recall the story we sent out long ago). On our trip to Memphis, we interacted with several infants Elizabeth's age and could see in stark terms how far she was behind in several aspects. While we longed for Elizabeth to catch up, we were honestly able to rejoice in the health of these other children, and had relative contentment in Elizabeth's progress on our own special track. "Holland" was starting to feel normal. And now it feels like we're starting to pack for another move...to a place much less pleasant (not wanting to offend the residents of any country, I'll let you fill in your own idea of the worst place in the world to vacation). Life on the other side of shunt surgery looks very complicated and dominated by frequent visits to the doctor, many medications, and feeling always on the verge of another trip to the hospital.
More philosophical rambling can occur at a later date. For now, praise God that:
1) Elizabeth's "timebomb" varicose veins didn't rupture while she was on blood thinners yesterday
2) Elizabeth's varicose veins have been found prior to bleeding and there appears to be a surgical way to improve them
3) Elizabeth did so well with her ventilator event and is already breathing on her own
4) Despite the breathing machine again, Elizabeth's voice continues to be strong
5) Despite being in the hospital and unable to use her arms and legs due to IV's, Elizabeth was still smiling and trying to play this morning.
6) Elizabeth is hospitalized in my hospital, allowing me to help coordinate her care even while continuing my working responsibilities
Continue praying that:
1) Elizabeth's portal vein will miraculously re-open by the next time they look.
2) The liver surgeon's will have wisdom about which surgery to perform and when to perform it
3) Sara and I will continue to receive God's strength to make it through these straights
We love you all,
Matt (on behalf of us all)
Email Update Sent August 10, 2006:
Today was a quiet one, in which Elizabeth returned to being herself. It was a thrill to have her raspberry me when I entered the room this morning and to have her babble as I left. The liver surgeons stopped by today and think they may still be able to do the better surgery...but not until her abdominal infection is completely treated and she has regained some energy for the big operation (weeks?) This news is very encouraging, giving us hope that Elizabeth might even be able to return home for a brief period prior to her surgery. We're excitedly praising God for this change in opinion.
When major things seem to be going wrong, the minor ones somehow seem even more important. Tonight, we just about began hugging the nurse who suggested they swap Elizabeth to a room further from the Nursing Station. The drop in background noise level was immediately noticeable and will allow Sara (and probably Elizabeth) to sleep much more soundly. That's a praise report!
Thanks.
Matt
Email Update Sent August 12, 2006:
Hi everyone,
It's been a few days, so here's a quick update to let you know everything is alright. Matt will send a more substantial one tomorrow filled with specifics, but here are the basics:
-Elizabeth was transferred to the Pediatric ward today. They removed one of her IVs (only 2 more to go!) and removed the nasal cannula as well because she doesn't need extra oxygen anymore.
-My mom (affectionately called "the saint") slept up in the hospital with Elizabeth last night so both Matt and I could get some good solid sleep. We did. She did not. Unfortunately, some sicker kids came into the PICU in the evening, so they transferred us (because Ej was doing so well) to an "open unit"...still part of the PICU, but a shared room with 3 other babies...needless to say, sleep was not on the agenda for either Elizabeth or Mom.
-Matt has this weekend off, so my Dad drove over and all 4 Grandparents pitched in today to give Matt and I a much needed day off to rest, spend time together and recuperate a little. We had a WONDERFUL time and feel recharged for sure.
-We have a few days left of IV antibiotics and are counting down to Ej's discharge...it could be in the next few days...we'll see. She's doing really well and is at her feeding goal. We praise God daily that we didn't remove the g-tube when the surgeons encouraged us to. It has been and will continue to be VITAL to Elizabeth's recovery.
-Surgery is still on the horizon once she gets bulked up a bit and the infection and all inflammation is gone. Here's a short article about her condition and the upcoming surgery: http://www.childrensmemorial.org/depts/gastroenterology/liver/portalHypertension.asp
Amazingly, Elizabeth is such a brave little girl and is continuing to be cheerful and delightful despite all the chaos going on around her.
Thank you for your continued prayers...
Love,
Sara (for all of us)
Email Update Sent August 15, 2006 (AM): "Elizabeth's 10 Month Update"
Dear Friends and Family,
I hope that Sara has not independently written to update you about Elizabeth. Our time for communicating such details is very limited these days, so if she has, just disregard this message.
Elizabeth turned 10 months old yesterday!
We were reminded today that the vast majority of babies conceived with Turner's do NOT survive to birth (either due to in utero death or their parents' choice to terminate). So despite all of her medical problems and the what they mean for the future, we consider ourselves blessed just to have her smiling face around and her cheeks to kiss.
Elizabeth is doing much better, with some of the expect ups and downs of being medically challenging- needing a new IV, getting severe diarrhea from medications or a virus going around the hospital, starting to throw-up again when one of her medication dose got too high for her to handle. Despite this, she remains engaging and cheerful, playing as best she can with one arm and leg strapped to IV boards!
As the doctors have gotten some of her extra fluid off, she has become a VERY skinny little one. In fact, while in the hospital, she has lost an entire kilogram (2.20462262 lbs if you never joined us in the Metric Age), now showing all her ribs and feeling MUCH lighter in our arms. How those of you with normal sized babies manage to hold them is a mystery to us!
The plans for the next phase are starting to come together. She will likely have her surgery at the beginning of Sept. There is a raging debate among our caregivers as to whether she should stay in the hospital until that date. Many are concerned that her varices (the dilated blood vessels in her esophagus and stomach) looked extremely "ready to bleed." If that were to happen at home, Elizabeth could theoretically lose enough blood to damage her brain or kidneys, even bleed to death, before anything could be done. Others feel like the risk is not that high and the bleeding rarely that severe. We are very torn. While we don't want to expose Elizabeth to any excess risk, staying in the hospital seems unbearable. Sara has been sleeping their with Elizabeth while I sleep at home. Both of them are awakened 4- 6 times per night by everything from IV malfunctions, overhead pages and even the janitor who insists on changing the trashcan liner at 5 am! Additionally, leaving Elizabeth alone at the hospital is very difficult to do. The nurses are nice, but stretched thin, meaning their response time to her crying is abysmal. Neither Sara or I can bear the thought of her sitting in her crib, alone in her hospital room, crying for us! Fortunately, our parents have been around and have allowed Sara to get home for showers and food. We are extremely grateful for that.
So here are the prayer requests:
1. That Elizabeth would put on weight (not in fluid) to strengthen her for surgery.
2. That the doctors would come to some conclusion about whether she should go home, and that God would give us wisdom to decide.
3. That Sara would get better sleep at the hospital.
4. That our marriage would survive and even grow in this season of stress, drastically reduced face time and infrequent communication opportunities.
5. And of course that nothing else untoward would happen to our little daughter from now on!
We love you guys,
Matt and Sara
Email Update Sent August 15, 2006 (PM):
Hi Everyone...I only have a second, (a hospital "snuggler" is hanging out with Elizabeth in the room so I could sneak away and send this)...
I just wanted to let you know that we're doing ok...well in fact! In the middle of all that's going on, God's grace is so apparent...it's really remarkable. I find myself feeling (not just telling myself to be, but actually feeling) grateful, peaceful, joyful and hopeful.
God is answering some of our prayers...Elizabeth is doing great....not gaining weight yet, but at least holding down her goal feeds for the first time in her entire life! I'm getting great sleep at the hospital (yes, I said great)...especially since Elizabeth is on overnight feeds through her g-tube, so she's not waking up to eat!! The dr.s have made a plan...a few tests this week and hopefully schedule surgery for next week...so that means 2 or 3 more weeks here...or more, we'll see. Matt and I are doing ok...not seeing enough of each other but surviving!
I have to go...they're closing the computers down, but I just wanted you to know how thankful we are for your prayers....we're hanging in there!
Much love,
Sara (for all three)
Email Update Sent August 17, 2006:
Dear Friends and Family,
Today has been one of the hardest yet. Elizabeth underwent two procedures today to help plan for surgery, with grim results. It looks like her entire portal system is clotted, making surgery they'd planned impossible. As a result, it looks like the only other option is a liver transplant.
We're feeling a little devastated right now and could use all the extra prayers you can muster (and probably then some).
Thanks,
Matt and Sara
Email Update Sent August 21, 2006 (AM) From Michael Easton: "Prayer for the Harms"
To: Everyone receiving updates regarding Elizabeth Harms
From: Michael and Sara Easton, Matt and Sara's good friends
What: An invitation to prayer and fasting for Elizabeth
I realize that many of you have no idea who I am (Michael), but I have come to know Matt and Sara though my wife who grew up as a close friend to Sara.
As you all already know, Elizabeth's medical condition is quite fragile, and in the next few days, Matt and Sara are faced with some of the hardest decisions that I can imagine parents having to make. On top of that, there are having to decide what to do about his fellowship in St. Louis as well.
I realize that we all come from various spiritual backgrounds, and that we all have thoughts on how to face these kinds of situations. But, in talking to Matt, we have both come to the conclusion that things like this are just hard to deal with, no matter what you believe.
At 7:30 pm today (Monday) and tomorrow (Tuesday) people in Clovis/Fresno will be getting together to pray. I would like to invite all of you to pray with them, wherever you are. If you feel so led, I would also encourage you to fast, that is, to skip a meal and take that time and dedicate it to prayer. This prayer and fasting is not meant to be a magic bullet, and how they work remains a mystery to me. But I know God hears our prayers and desires to answer them. I also know that the Bible says we should do this for those who have need - and Matt and Sara have great need right now.
Matt and Sara will be sending out an update tonight with specific prayer requests to focus on. Please continue to stand with them and pray that they would would have the peace of God laid on them.
Respectfully,
Michael and Sara Easton
Email Update Sent August 21, 2006 (PM):
Dear Family and Friends,
It has been a quiet few days for our family as we have awaited "The Return" of the liver surgeon from being out-of-town. Elizabeth has been her delightfully cheerful self. She has even learned to wave "hello" while hospitalized. We have gotten a little more rest thanks to Sara's mom's willingness to sleep at the hospital. And the number of patients I care for in the hospital has remained extra-ordinarily low, allowing me the time to spend with Sara and Elizabeth. We are extremely grateful for all of these things.
Today, we met with the liver surgeon to begin discussing the next steps. While the vessels running into Elizabeth's liver are shot, the liver tissue itself looks pretty healthy. So the liver surgeon believes we should delay liver transplant as long as possible. But in order to do that, there are several issues that need to be dealt with now, including the risk of hemorrhage from her esophagus, malnourishment and ongoing abdominal fluid. He would like to perform a shunt surgery of some sort (to be determined during the operation depending on what they find when they go in). The only remaining decision is when.
Elizabeth is much younger and smaller than the children who usually need this type of surgery. A shunt surgery on someone weighing only 15 lbs is very rare. As a result, there is some debate about whether to try and postpone even the shunt surgery until Elizabeth is bigger. Proceeding now makes the surgery much more complicated due to her size. Waiting until later increases her risk of bleeding, problems with abdominal fluid and malnourishment. We need real wisdom on how to proceed.
In other news, Sara and I have begun questioning the wisdom of moving to St. Louis next July. I have accepted a fellowship position there that is exactly what I wanted. We had plenty of peace about making that choice and have begun looking forward to the cheaper rents, warmer weather and change of pace (after 8 years in SF). However, as Elizabeth's medical care gets more complicated, we're concerned about moving far from family...these last two weeks have reminded us how much we need their presence and help! The folks here at UCSF have re-offered me the equivalent position here and we need to let everyone know our decision by Friday. We are very torn, primarily because we felt such peace about St. Louis when deciding two months ago. We don't want to act out of our panic and miss a move God had intended. Neither do we want to take on the added difficulty of Elizabeth's health care so far from family.
As you pray for us (and fast if you desire to join in), please focus on these requests:
1. That we would have clear indication how soon to have Elizabeth's surgery.
2. That God might still intervene and heal her without the need for additional surgery.
3. That Sara and I would have clear wisdom regarding where to do fellowship training.
Thank you again for supporting us!
Matt
Email Update Sent August 23, 2006:
Hello again...after your dedicated efforts in prayer on our behalf, we thought you at least deserved an update :-)
Elizabeth continues to do well. She is chipper despite cutting yet another tooth (eight in total now), and has started learning to give high-fives! And her abdominal fluid remains stable.
The wisdom we have been asking God for has begun to emerge in the form of consensus amongst our doctors and through peace in our hearts. First, Elizabeth's liver biopsy shows that there is no damage yet, meaning she will not need a liver transplant anytime soon! We are very happy about this fact, especially since I was her most likely liver donor (I'd be thrilled to give it to her, but just as happy to hold on to it)! Everyone agrees that the next step is a shunt surgery (which kind will only be decided once they open her up and take a look around in great detail). And everyone agrees that NOW is NOT the time to do that surgery. She is too small and still recovering from her severe infection. They would like to see her gaining good weight and growing prior to doing the surgery, and are keeping us in the hospital for several more days to optimize her feeding formulas and schedule.
In other words, it looks like Elizabeth will get to come home before returning for surgery! We are both excited and nervous about this prospect. Excited...because we're sick of the hospital. Nervous...because Elizabeth's varicose veins will be untreated and could rupture at any moment! The bleeding could be rapid and severe, and in a worst-case scenario, could be life-threatening despite how close we live to the hospital. If she did bleed, this would prompt them to move the surgery timetable up (something which we are NOT hoping for). Oddly, Sara and I are feeling quite peaceful about this plan. We thought we'd be freaking out about the possibility of Elizabeth bleeding. But we aren't. We feel like the risk of this is small enough and that God will either spare us this event or give us the grace we need to deal with it if it occurs.
As for my career plans, peace and consensus are also emerging. With Elizabeth's medical issues seeming more managable (no liver transplant in particular), we've begun hoping we can still make it to St. Louis. So are several of my most trusted academic advisors. Unless God changes our hearts between now and Friday, we're leaning toward planning to go...and if Elizabeth's condition worsens in the next months, a probable back-up plan has me getting a local job for a year and then heading to St. Louis.
So thank you all for your prayers, thoughts and fasting. God has begun answering your prayers (and ours)...not by direct and spectacular healing (keep asking for that!), but through peace and the begins of resolution.
Between now and our next update, please continue praying for:
1. Confirmation that our course of action for Elizabeth is God's course of action for her.
2. Confirmation that my career plan is God's career plan for me.
3. The miraculous, TV-crew at the bedside type of healing we've been asking for 1.5 years now!
Thanks again,
Matt
Email Update Sent August 25, 2006: "Good Days and Bad Days"
Hi Everyone,
Yesterday was a hard day! Elizabeth is teething so she's in pain and the Dr.s had switched her formula to include mineral oil (for extra fat). Unfortunately, the mineral oil slowed down her digestion, so she got backed up and nauseated and puked multiple times throughout the night and day. By the end of the day I was exhausted, she was exhausted, she'd missed both of her naps due to blood draws and puking and dr. visits, so we were both at the end of our rope. Fortunately, they figured out the cause of the puking pretty quickly and were able to remove the oil and after 24 hours, Elizabeth woke up this morning back to her cheerful self. In the middle of the hard stuff, it was helpful to remember, yesterday was an anomaly...We are so thankful for such a happy baby. It is one of the blessings we don't want to take for granted.
In other news, Elizabeth gained some weight! She's up from 6.95 kilos to 7.08 kilos this morning. (and that's with all the puking) We're not sure if it's "good weight" yet, so we'll keep watching her, but we're hopeful that since she's taking in through her g-tube more than twice what she's ever consumed, some of it is getting made into chubby baby thighs.
My mom will go home tomorrow since Mat is off this weekend, and it looks like we're finally on a departure track. Possibly by early next week! We'll see....
Thank you for your continued prayers...after yesterday, I'm aware that things could be a LOT worse on a day to day basis if Elizabeth was in more pain, or was fussy for other reasons.
Love you all,
Sara (for all of us)
Email Update Sent August 29, 2006: "Homeward Bound"
Yes, we are headed home today! 3 weeks and 4 days after checking in, we're checking out and couldn't be happier. Elizabeth got her last set of labs drawn this morning and handled it like a champ, and now we're just waiting for the team to get together all the things we'll need for going home. Mostly prescriptions (she'll go home on 4 meds) and supplies for her tube-feeds. We won't be going far (I think our departure was helped along by the fact that Matt is an MD and we live across the street) but being in our home will be wonderful.
She's going home with the clot and the vericies (sp?) and the plan is to keep her stable by using diuretics to keep fluid off. She's taking her goal feeds so she SHOULD gain weight (Please Lord!) and they'll watch her closely to try to determine if the weight is "good" or not. She'll be getting food 24 hours a day, (the best way to help her gain) so leaving the house will be tricky :) but you can pray that I'll go home with a can do attitude.
Thanks for your continued prayers and the meals and the cards and emails and the gifts and everything you're doing for us....
YOU have helped us survive this...
We love you all,
Sara
Email Update Sent August 25, 2006: "Daily Bread"
A line in the Lords Prayer allows us to ask God to give us "our daily bread." I've heard lots of sermons on this subject and have often asked for that very thing. I don't know that I have ever experienced it so profoundly as I am now.
Coming home is wonderful. Soft sheets for sleeping, clean floors for walking & playing (despite what you might think, hospital floors are NOT clean), NO vital checks at 2 am, no lab draws, no nap interruptions. Home is good. But being home by myself is a little complicated, and has given me the chance to reflect on what turned out to be a truly blessed hospital experience. One in which we experienced daily provision - probably the answer to some of your prayers! While we're grateful to be discharged (no doubt our health insurance would offer a hearty "AMEN!" about now) I'm so thankful for so many things about the last few weeks (and no, I'm not on drugs, it really was this good):
- The MIRACLE of Matt's schedule. Had you asked us ahead of time, in which month of this coming year we would LEAST like to have Elizabeth hospitalized, we would have picked August (maybe tying it with September). Matt's rotation this month is notoriously insane, lots of patients, tons of work, tons of late nights...really bad. Well to reiterate what he's already told you, for the greater part of the month, he only had ONE patient...and near the end he got 1 or 2 more! That fact alone allowed him to be available (both physically and emotionally) at the drop of a hat to support Elizabeth and I, to talk with Dr.s and to walk WITH us through this hospitalization, all while still working full time, two floors above us. The miracle of this was driven home by the fact that all heck broke loose (translation: lots of admissions of complicated patients resulting in lots of work!) the same afternoon we were discharged! Matt's still at work as I type and we are in awe that God held back the chaos to protect our family. Praise God!
- A fantastic Clinical Fellow, who was attentive, communicative, compassionate, available and overall, our favorite person on Elizabeth's team. If your child has to have a complicated medical problem, and you have to live in the hospital, the staff can greatly impact your life. Dr. Pickens was a true blessing.
- Family available at the drop of a hat...My mom living with us for most of the hospitalization, Matt's parents up most days and any time we needed them, always bringing goodies to bless us.
- Elizabeth actually reached THREE developmental milestones while in the hospital! This is practically unheard of. It just doesn't happen...kids regress while in the hospital...and while she's physically weaker (back to back UTI, pneumonia, bacterial peritonitis and a portal vein thrombosis will do that to you!) her mind is sharp as a tack. She's waving hello and goodbye, she's giving high fives, she's making new vowel sounds and she's used the sign language sign for "more" appropriately! (though not consistently yet) :) I actually think all of the social stimulation of nurses and doctors and med students (need I go on?), not to mention friends and family, was GOOD for Elizabeth.
So we are home, and the daily bread is continuing to arrive in the form of meals and care packages, phone calls and emails from friends which really encourage me, and I'm feeling a boost in that "can do" attitude I asked you to pray for.
Please keep praying...
*Matt's schedule is now insane and I'm alone a lot now, so I have to fight feeling overwhelmed.
*Elizabeth been puking more since she came home...don't know what that's about, but she needs to keep her calories down and grow!
Thank you thank you. you are part of our daily Bread...we are so grateful.
Love,
Sara (for all of us)
Monday, July 31, 2006
Elizabeth Archives - July 2006
July 2006 Email Updates
Email Update Sent July 15, 2006:
Dear Friends and Family,
Elizabeth turned 9 months old yesterday, and today we'd hoped to send a chipper update on all the progress she's been making. Unfortunately, she started getting sick overnight, and this morning, required hospitalization for a probable pneumonia. Last night, she started with a new hacking cough and a low grade fever. This morning, she looked great initially, but about 11am began having lots of trouble breathing (her lips, fingers and toes started turning dusky blue), started shaking all over, and scarily, stopped crying or responding to us. Thankfully, this turn for the worse occurred while we were in the car, returning from some errands. We were just a mile from the UC ER and able to get her there safely.
The staff acted very quickly to get her the extra oxygen and antibiotics her body needed, especially since her fever was almost 104.5 F! That first dose of antibiotics and some fever-reducers have really helped and she is doing MUCH better now. Elizabeth's doctors think she'll need to be in the hospital 24-48 hours for observation, putting our trip to Memphis for a family reunion in jeopardy (we're supposed to fly out on Monday AM).
Please be praying that:
1) This is just a pneumonia and that the bacteria haven't spread to her blood stream (which would lengthen her antibiotic course to weeks!).
2) she recovers quickly and without any hospital complications this time around.
3) we'll have wisdom about whether and when to go to Memphis.
4) we'll get a kind airline service agent that will allow us to rebook our tickets without re-purchasing.
Thank you for interceding on our behalves. We'll send out that more upbeat report once Elizabeth is home again.
-Matt
Email Update Sent July 16, 2006:
Talk about miraculous turn-arounds! Yesterday at noon, Elizabeth was on the verge of being admitted to the ICU. Today at noon, she was in her stroller, going for a walk around the neighborhood! Your prayers truly made a difference in getting her well. The pediatrician who released us from the hospital is convinced that this was NOT a pneumonia, but rather the very high fever that caused her system to react so badly. Her blood work looked great and all her cultures have been negative, supporting his theory.
Even better, she hasn't had any fever since going to the hospital. If she stays that way through the night, she'll be fine to travel. So for the time being, the trip to Memphis is ON. Good thing, too- we had started researching ticket changes and American Airlines was being less than customer service oriented in the process ("I'm sorry, but we don't make exceptions, even for medical emergencies").
Unfortunately for you, the last minute return to leaving on time means I need to pack instead of updating the website with new photos. When we return next week, we'll definitely get that together.
Thank you for your prayers!
Matt, Sara and Elizabeth
Email Update Sent July 30, 2006:
Dear friends and family,
Thanks for your response to our urgent update two weeks ago. Elizabeth continued to improve and was an absolute rock star on the plane and all throughout our time in Memphis. We had a wonderful time with family and felt so grateful that we were able to be there for the entire time.
A few highlights:
*Elizabeth enjoyed some Memphis BBQ at the famous Rendezvous and made her first trip into a swimming pool.
*She ate butterbeans and black eyed peas and LOVED them, and kept opening her mouth so I could give her more. This was a first and warmed my heart. I guess she's a true southern girl at heart.
Unfortunately, part of that yummy southern meal got into her lungs and she developed an aspiration pneumonia on Sunday night and a high fever by Monday morning so we had to make a detour to the ER at Le Bonheur Children's Hospital before being discharged hours before our flight back to SF. To make a long and exhausting story very short, We feel like God prevented the very kind attending in Memphis from seeing the pneumonia on her chest x-ray, so that we could get home and deal with it all on our own turf. We've had to tinker with her medications but we've found one that doesn't make her puke and she's finally started acting like herself again.
Tomorrow is the last day of Matt's vacation. Elizabeth and I have loved having Matt around all the time....so in about 36 hours, we'll BOTH be going through withdrawals!
We hope you're all surviving the heat! I'm embarrassed to admit it, but we're wearing sweats and enjoying an overcast week here in SF. But we're turning off all our lights, trying to conserve energy for the rest of you!
Blessings,
Sara (for all three of us)
Friday, June 30, 2006
Elizabeth Archives - June 2006
Week 35 (June 9 to June 15) Update
Email Update Sent June 18, 2006:
Hello Everyone,
Elizabeth turned 8 months old this week, meaning she's been out of the hospital for exactly 6 months. We wanted to let you know how things have been going.
Overall, Elizabeth continues to thrive. Everyday she's growing (almost 15 lbs. at her last appointment) & learning new tricks (her current fav's are blowing raspberries, playing with her feet, waving "Hi", saying "dadada" to anything and everything, and sitting up for some good long stretches with minimal support). She is social, happy and loves to sing while we take walks in the park, talk on the phone and basically do anything that I'm doing. This last week, Matt was working on the pediatric service and went to check on a patient in the Cardiac ICU- the same floor where Elizabeth spent her first 2 months. Instead of getting work done, he was inundated by nurses curious to hear all about Elizabeth's progress. Eventually, he was forced to call me and I have me bring Elizabeth up for show-and-tell. Everyone was thrilled with how healthy, happy and BIG she's become. It's really nice to stop every once in a while to remember how far Elizabeth has come. And we praise God for how far we've come.
Please continue to pray for:
Elizabeth's feeding: Miraculously, she's gaining great weight, despite never eating her "goal" amount, and continuing to puke intermittently. She has decided that she's not a fan of solid foods, (officially called a "feeding aversion" and we're starting some feeding therapy to help her learn to like to eat. Pray that she'll lose her distaste for anything on a spoon.
Elizabeth's muscle tone: Her floppy muscles are getting stronger, and she can now sit unassisted. She's just started physical therapy to try and prevent scoliosis and to give her the strength she'll need to roll-over, crawl and eventually walk.
The good news is I'm learning how to let go of all the things I cannot control, all the circumstances I cannot change. I'm learning to practice contentment, thankfulness and joy in the midst of daily life. It has only been by the grace of God that I feel truly at peace about the pace of Elizabeth's progress. I'm doing a better job of enjoying where Elizabeth is, and choosing not to fear what is ahead & unknown. (Does this sound familiar? have I been here before? Well, I feel like I'm making progress...and that's a relief.) Thank you for your prayers!
Love,
Sara (for all of us)
Wednesday, May 31, 2006
Elizabeth Archives - May 2006
Week 29 (April 28 to May 4) Update:
Sent on May 3, 2006:
Hi Everyone,
The last few weeks have been busy. Here are a few highlights from Sara...
Elizabeth was the belle of the ball...well, excluding the bride of course...at her Uncle Philip's wedding. We had a wonderful time introducing her to family and friends and she only made a few comments during Grandpa Sid's wedding message!
What we thought was a cold turned out to be a simple case of teething! This year on my birthday she gave me two teeth...a beautiful sight, and has since returned to her cheerful self.
Finally, she's growing and changing every day and provides us with countless opportunities to whip out the camera. She turns the pages when I read to her, and has moved from gurgling to blowing bubbles with her rice-cereal...not an easy trick! We're still working with her to help her gain the strength she'll need to eventually sit up. This is slow going but hopefully will be sped up with the aide of some Physical and Occupational Therapists that we'll meet with in the near future.
To update you on our prayer requests, last week we found out that Elizabeth will need to have another surgery to repair her hernia. Because of her history (lots of complications following her previous surgeries), what should be an outpatient operation, will have to take place at the hospital, where Elizabeth will be intubated again and admitted for 24 hours. The good news is, the surgery remains routine and complications aren't expected. Additionally, while they're fixing her right side, they can also go in and "shore up" her left side since many babies who have 1 hernia eventually develop a 2nd one.
This saves us from a future surgery and hopefully any more hernias! Please pray that the surgery can take place laproscopically and that she has no complications (a la lymphatic fluid drainage) like her previous surgeries.
The surgery will take place on May 15th, Matt's last day of work before a two week vacation. We've been planning to have some desperately needed family time on the coast, but we'll just wait and see how Elizabeth's recovery goes. Would you join us in praying that God will make a way for Elizabeth to heal quickly so that the three of us can get away for some respite?
Her feeding is...well, mostly the same. I pray often that God will multiply the nutrients she's getting and keep her growing and just give me the high sign when I don't need to stress about how much she's taking. I'm learning that my stress doesn't deliver food into her, so I'm getting better at rolling with the punches. After a visit to the feeding clinic, we're re-introducing solids and though she's still not a fan, I have more confidence that I'm not going to push her over the edge into hating food by pressing her to eat. If she can gain weight on the volume she's taking (about 60% of her goal) then we can relax a bit. We'll find out how she's doing at her pre-op appointment next Friday.
Thanks so much for your continued prayers.
Love,
Sara (for all three of us)
Week 31 (May 12-18) Update
Email Update sent May 16, 2006:
Well, we're home, and still picking up the pieces after only one day in the hospital. Once again, I realized just HOW much of a blessing it was that we lived only 1 block from the hospital through Elizabeth's time in the ICU...after last night, I don't think I could have survived sleeping over at the hospital night after night on top of all the other stress those first two months. Elizabeth came through surgery beautifully. She's still a little puffy (that's normal) and she's cranky and totally out of whack with her eating and sleeping (also normal) so we're going to try to get her a little more settled before we think about leaving the house for some family time. Thanks for your prayers. Elizabeth's pleasant demeanor leading up to the surgery was nothing short of a miracle. Se went 7 hours without food (no pacifier either) and even though our surgery was delayed an hour, she was delightful 'till the very end. THAT we can only thank God for.
Now we all desperately need sleep.
Love,
Sara (for all of us)
Sent on May 3, 2006:
Hi Everyone,
The last few weeks have been busy. Here are a few highlights from Sara...
Elizabeth was the belle of the ball...well, excluding the bride of course...at her Uncle Philip's wedding. We had a wonderful time introducing her to family and friends and she only made a few comments during Grandpa Sid's wedding message!
What we thought was a cold turned out to be a simple case of teething! This year on my birthday she gave me two teeth...a beautiful sight, and has since returned to her cheerful self.
Finally, she's growing and changing every day and provides us with countless opportunities to whip out the camera. She turns the pages when I read to her, and has moved from gurgling to blowing bubbles with her rice-cereal...not an easy trick! We're still working with her to help her gain the strength she'll need to eventually sit up. This is slow going but hopefully will be sped up with the aide of some Physical and Occupational Therapists that we'll meet with in the near future.
To update you on our prayer requests, last week we found out that Elizabeth will need to have another surgery to repair her hernia. Because of her history (lots of complications following her previous surgeries), what should be an outpatient operation, will have to take place at the hospital, where Elizabeth will be intubated again and admitted for 24 hours. The good news is, the surgery remains routine and complications aren't expected. Additionally, while they're fixing her right side, they can also go in and "shore up" her left side since many babies who have 1 hernia eventually develop a 2nd one.
This saves us from a future surgery and hopefully any more hernias! Please pray that the surgery can take place laproscopically and that she has no complications (a la lymphatic fluid drainage) like her previous surgeries.
The surgery will take place on May 15th, Matt's last day of work before a two week vacation. We've been planning to have some desperately needed family time on the coast, but we'll just wait and see how Elizabeth's recovery goes. Would you join us in praying that God will make a way for Elizabeth to heal quickly so that the three of us can get away for some respite?
Her feeding is...well, mostly the same. I pray often that God will multiply the nutrients she's getting and keep her growing and just give me the high sign when I don't need to stress about how much she's taking. I'm learning that my stress doesn't deliver food into her, so I'm getting better at rolling with the punches. After a visit to the feeding clinic, we're re-introducing solids and though she's still not a fan, I have more confidence that I'm not going to push her over the edge into hating food by pressing her to eat. If she can gain weight on the volume she's taking (about 60% of her goal) then we can relax a bit. We'll find out how she's doing at her pre-op appointment next Friday.
Thanks so much for your continued prayers.
Love,
Sara (for all three of us)
Week 31 (May 12-18) Update
Email Update sent May 16, 2006:
Well, we're home, and still picking up the pieces after only one day in the hospital. Once again, I realized just HOW much of a blessing it was that we lived only 1 block from the hospital through Elizabeth's time in the ICU...after last night, I don't think I could have survived sleeping over at the hospital night after night on top of all the other stress those first two months. Elizabeth came through surgery beautifully. She's still a little puffy (that's normal) and she's cranky and totally out of whack with her eating and sleeping (also normal) so we're going to try to get her a little more settled before we think about leaving the house for some family time. Thanks for your prayers. Elizabeth's pleasant demeanor leading up to the surgery was nothing short of a miracle. Se went 7 hours without food (no pacifier either) and even though our surgery was delayed an hour, she was delightful 'till the very end. THAT we can only thank God for.
Now we all desperately need sleep.
Love,
Sara (for all of us)
Sunday, April 30, 2006
Elizabeth Archives - April 2006
Week 27 (April 14-20) Update:
Sent on April 19, 2006
Dear Friends and Family,
We hope all of you had a wonderful Easter. Elizabeth certainly did! She celebrated by sitting attentively through the entire church service (Pastor Paul was in rare form) and later donned bunny ears to everyone’s delight. We managed to keep Grandma and Grandpa Harms from sneaking her chocolate. And it’s a good thing, too- because she has just come down with her very first cold. Being hospital-bound and then under house-arrest had allowed us to avoid most germs until now. She’s handling the sniffles like a champ, and now that we’ve established that Tylenol makes her loopy, we’re sticking with the Baby Motrin! This week, Elizabeth’s uncle Philip gets married, and we’re looking forward to introducing her to many on Matt’s side of the family.
In other news, last Friday, Elizabeth Turned 6 Months Old! (And yes, that means that an un-named Grandpa turned 55 years and 6 months old…but who’s counting?) It is amazing to look back over the last 26 weeks and see how far God has brought our little family- from the joy (and scares) of Elizabeth’s birth and our fears of losing her in the ICU, to the daily challenges of raising her at home. While He hasn’t always answered our prayers the way we’ve wanted, He has been faithful to sustain us through it ALL.
A lot has changed in 6 months, including the focus of our prayers. To give you a sense of what’s been going more recently, and the challenges we still face, here’s an update to the list of prayer requests that has been on the website (including answered prayers and new issues).
For those of you who don’t have time to read all the details, the short story is – Overall, Elizabeth is doing well at home. She’s growing (12 lbs. 13 oz. as of today!), learning new skills like blowing bubbles, peek-a-boo and rolling from her belly to her back. She is an absolute angel. She struggles to meet her nutritional goals and the whole “GI/Nutrition-arena” is a daily source of stress for Sara as she tries to encourage Elizabeth to eat. We’re still stuck in a 1-puke-a-day routine, but her growth encouragingly continues on track. The most recent round of doctors’ appointments revealed several areas of possible concern with her heart & muscle tone (see below). We are again reminded that unless God chooses to heal her completely, Elizabeth’s health will likely always be complicated. We need grace to face the unknown future with hope and courage.
Now for the nitty-gritty…
Elizabeth’s Heart: When the surgeon repaired the abnormal section of her aorta, he was unable to reach the furthest section of narrowing. We are praising God that her last echocardiogram revealed that this last section of narrowing has moved to a more favorable location- where it is less likely to cause problems and be easier to repair if need be. Unfortunately, that same echocardiogram showed two previously unseen abnormalities in Elizabeth’s heart, a thickened/stiff mitral valve and a small hole between the right and left ventricle (allowing small amounts of unoxygenated blood to bypass the lungs and directly enter the body’s circulation). Neither abnormality is causing symptoms currently, but will be followed very closely by her cardiologist. If either becomes a problem, open heart surgery would likely be required. Pray that these abnormalities would resolve spontaneously.
Elizabeth’s Inguinal Hernia: “What hernia?” you might be asking. We just discovered it last week during a Daddy-diaper change/physical examination (it’s hard to leave my job at work sometimes). It almost always needs to be repaired surgically. We are crushed at the thought of subjecting Elizabeth to yet another surgery! Just this month, Elizabeth’s age in months was finally larger than the number of surgeries she’s had (five!). Pray that the hernia would disappear (and quickly- our appointment with the surgeon is in 1 week).
Elizabeth's Infant Development: Two months on her back in the ICU and a poorly formed cerebellum have definitely slowed some areas of Elizabeth's development. Her social interaction, language, and fine motor development are "on-track." She is the smiley-est baby we’ve ever met and loves to sing/gurgle/blow spit bubbles. She has also learned to roll from her tummy to her back. However, her gross motor strength, head control and "tone" are behind. We have a physical therapist from the March of Dimes working with her to improve this area. Pray that her muscle tone will develop and that she will rapidly gain the strength she needs to keep her head up, roll over, sit up and eventually walk.
Elizabeth's ability to feed: Her suck and swallow reflexes were initially damaged by nerve injury during her surgery and by disuse while hospitalized. Since coming home, those problems have completely resolved. In fact, last week we introduced her to rice cereal. She seems to hate the taste and texture, but has already figured out how to swallow it down.
Elizabeth’s growth: Despite not eating the amount the nutritionist has set as her “goal,” Elizabeth continues to gain weight. Her legs have gotten a bit chubbier and she’s finally fitting into those 3 month-old clothes. If she continues to gain weight for 1 more month, her feeding tube will be able to come out! Praise God that we haven’t had a single one of the complications feeding tubes can produce (infection, skin breakdown, intestinal blockage, popping out, etc). Despite all the growth, we have to practically force Elizabeth to eat. Unless she is completely starving, she is almost completely disinterested in food- possibly due to the nasty taste of the special formula she started with. As a result, Sara spends too much of her day coaxing food into Elizabeth, and then fighting to help keep it down. Please pray that we would find a formula that Elizabeth actually enjoys, something that she finds both tasty and satisfying.
Elizabeth's reflux problems: Although her reflux problems were very severe initially and led to frequent vomiting, things have improved greatly in this area. We have even been able to reduce the number of reflux medications she requires from three to just one! Though she still vomits several times weekly, it no longer blocks off her airway. Pray that her reflux will continue to diminish and that her vomiting will cease entirely.
Elizabeth's voice: from the same nerve damage during surgery, Elizabeth's vocal cords didn't function properly initially, and we feared they might be permanently paralyzed. Their function continues to improve, and now she makes the cutest coos and babbling I’ve ever heard. Taking the bad with the good, she also cries much louder! We are so grateful that God has healed this area.
Elizabeth's Cerebellum: Somewhat lost in the emergency of her heart surgery is the fact that Elizabeth's cerebellum and adjacent brainstem region are incompletely formed. Continue to pray that her brainstem and cerebellum will continue developing past their normal time or that other areas of her brain will take over the vital functions and minimize any potential symptoms.
Elizabeth's Turner Syndrome: Turner syndrome is a condition caused by missing one of the usually-paired X chromosomes. How and why it happens is unknown. The end result includes many of the abnormalities Elizabeth has already suffered from. But there is a very long list of potential effects that could occur as she ages. These include poor growth, hormonal imbalances and learning disabilities, to name a few. Ask God to limit the boundaries of Turner Syndrome in her life, preventing it from doing any more damage than it already has. If you are interested in learning more about Turner Syndrome, check out www.turner-syndrome-us.org.
Thanks for hanging in there with us for the long haul. We covet and appreciate your prayers and support.
Much Love,
The Harms
Friday, March 31, 2006
Elizabeth Archives - March 2006
Week 22 (Mar 10 to Mar 16) Update:
Sent Mar 16, 2006
On Tuesday, March 14th, Elizabeth Joy celebrated her 5 month birthday in style- she got another immunization and had her first vomiting in 10 days! Not quite the cake and candles of years to come, but it's a start. Lest you think it's "all work and no play" around here...we've included some pictures. She's growing like a weed. She recently weighed in at 11 lbs. 3.8 oz! She's finally growing into her clothes! :)
The good news is, despite her "Birthday-puke", she went 10 days without a puke, and has since resumed her puke-free schedule. It seems like she is growing out of it just like the Doctors thought she would. All we can say is, Praise God!
We're off to visit Sara's parents in Clovis this weekend and look forward to introducing Elizabeth to many of her friends in the Valley.
Have a great weekend~
Love,
Matt & Sara
Week 24 (March 24 to March 30) Update:
Sent on March 26, 2006:
This morning, Sara and I threw Elizabeth into the Baby-Bjorn and went for a walk. Our trek began by walking up to UCSF, a path we took several times per day during Elizabeth's hospitalization. While our original purpose was to stop by my office mailbox, we ended up dropping into the ICU to say hello. Several of our favorite nurses happened to be on duty and were thrilled to see her progress. Each of them commented on her increasing size, her cheerful smiles and (surprisingly), how well-adjusted we seemed as parents!
Returning to the places that bore witness to Elizabeth's pain and close-calls was a necessary reminder of all God has done for us. Several times during that season, it seemed like we might not survive the stress. And yet God saw us through, supported by the faithful service and prayers of our family and friends. The fact that Elizabeth is growing, developing and thriving at home is further proof of God's mercy. And although each day continues to have its little struggles, evidence of His faithfulness is all around.
Elizabeth is eating like a champ (drinking 100 ml at time, up from those frustrating days of 5)! The physical therapist is thrilled with her strength progress, and it looks like Elizabeth might be rolling over any day now. She continues to cooing and sing, but just three days ago started laughing! What a delightful sound...
Love you all,
Matt
Week 27 (April 14-20) Update:
Sent on April 19, 2006
Dear Friends and Family,
We hope all of you had a wonderful Easter. Elizabeth certainly did! She celebrated by sitting attentively through the entire church service (Pastor Paul was in rare form) and later donned bunny ears to everyone’s delight. We managed to keep Grandma and Grandpa Harms from sneaking her chocolate. And it’s a good thing, too- because she has just come down with her very first cold. Being hospital-bound and then under house-arrest had allowed us to avoid most germs until now. She’s handling the sniffles like a champ, and now that we’ve established that Tylenol makes her loopy, we’re sticking with the Baby Motrin! This week, Elizabeth’s uncle Philip gets married, and we’re looking forward to introducing her to many on Matt’s side of the family.
In other news, last Friday, Elizabeth Turned 6 Months Old! (And yes, that means that an un-named Grandpa turned 55 years and 6 months old…but who’s counting?) It is amazing to look back over the last 26 weeks and see how far God has brought our little family- from the joy (and scares) of Elizabeth’s birth and our fears of losing her in the ICU, to the daily challenges of raising her at home. While He hasn’t always answered our prayers the way we’ve wanted, He has been faithful to sustain us through it ALL.
A lot has changed in 6 months, including the focus of our prayers. To give you a sense of what’s been going more recently, and the challenges we still face, here’s an update to the list of prayer requests that has been on the website (including answered prayers and new issues).
For those of you who don’t have time to read all the details, the short story is – Overall, Elizabeth is doing well at home. She’s growing (12 lbs. 13 oz. as of today!), learning new skills like blowing bubbles, peek-a-boo and rolling from her belly to her back. She is an absolute angel. She struggles to meet her nutritional goals and the whole “GI/Nutrition-arena” is a daily source of stress for Sara as she tries to encourage Elizabeth to eat. We’re still stuck in a 1-puke-a-day routine, but her growth encouragingly continues on track. The most recent round of doctors’ appointments revealed several areas of possible concern with her heart & muscle tone (see below). We are again reminded that unless God chooses to heal her completely, Elizabeth’s health will likely always be complicated. We need grace to face the unknown future with hope and courage.
Now for the nitty-gritty…
Elizabeth’s Heart: When the surgeon repaired the abnormal section of her aorta, he was unable to reach the furthest section of narrowing. We are praising God that her last echocardiogram revealed that this last section of narrowing has moved to a more favorable location- where it is less likely to cause problems and be easier to repair if need be. Unfortunately, that same echocardiogram showed two previously unseen abnormalities in Elizabeth’s heart, a thickened/stiff mitral valve and a small hole between the right and left ventricle (allowing small amounts of unoxygenated blood to bypass the lungs and directly enter the body’s circulation). Neither abnormality is causing symptoms currently, but will be followed very closely by her cardiologist. If either becomes a problem, open heart surgery would likely be required. Pray that these abnormalities would resolve spontaneously.
Elizabeth’s Inguinal Hernia: “What hernia?” you might be asking. We just discovered it last week during a Daddy-diaper change/physical examination (it’s hard to leave my job at work sometimes). It almost always needs to be repaired surgically. We are crushed at the thought of subjecting Elizabeth to yet another surgery! Just this month, Elizabeth’s age in months was finally larger than the number of surgeries she’s had (five!). Pray that the hernia would disappear (and quickly- our appointment with the surgeon is in 1 week).
Elizabeth's Infant Development: Two months on her back in the ICU and a poorly formed cerebellum have definitely slowed some areas of Elizabeth's development. Her social interaction, language, and fine motor development are "on-track." She is the smiley-est baby we’ve ever met and loves to sing/gurgle/blow spit bubbles. She has also learned to roll from her tummy to her back. However, her gross motor strength, head control and "tone" are behind. We have a physical therapist from the March of Dimes working with her to improve this area. Pray that her muscle tone will develop and that she will rapidly gain the strength she needs to keep her head up, roll over, sit up and eventually walk.
Elizabeth's ability to feed: Her suck and swallow reflexes were initially damaged by nerve injury during her surgery and by disuse while hospitalized. Since coming home, those problems have completely resolved. In fact, last week we introduced her to rice cereal. She seems to hate the taste and texture, but has already figured out how to swallow it down.
Elizabeth’s growth: Despite not eating the amount the nutritionist has set as her “goal,” Elizabeth continues to gain weight. Her legs have gotten a bit chubbier and she’s finally fitting into those 3 month-old clothes. If she continues to gain weight for 1 more month, her feeding tube will be able to come out! Praise God that we haven’t had a single one of the complications feeding tubes can produce (infection, skin breakdown, intestinal blockage, popping out, etc). Despite all the growth, we have to practically force Elizabeth to eat. Unless she is completely starving, she is almost completely disinterested in food- possibly due to the nasty taste of the special formula she started with. As a result, Sara spends too much of her day coaxing food into Elizabeth, and then fighting to help keep it down. Please pray that we would find a formula that Elizabeth actually enjoys, something that she finds both tasty and satisfying.
Elizabeth's reflux problems: Although her reflux problems were very severe initially and led to frequent vomiting, things have improved greatly in this area. We have even been able to reduce the number of reflux medications she requires from three to just one! Though she still vomits several times weekly, it no longer blocks off her airway. Pray that her reflux will continue to diminish and that her vomiting will cease entirely.
Elizabeth's voice: from the same nerve damage during surgery, Elizabeth's vocal cords didn't function properly initially, and we feared they might be permanently paralyzed. Their function continues to improve, and now she makes the cutest coos and babbling I’ve ever heard. Taking the bad with the good, she also cries much louder! We are so grateful that God has healed this area.
Elizabeth's Cerebellum: Somewhat lost in the emergency of her heart surgery is the fact that Elizabeth's cerebellum and adjacent brainstem region are incompletely formed. Continue to pray that her brainstem and cerebellum will continue developing past their normal time or that other areas of her brain will take over the vital functions and minimize any potential symptoms.
Elizabeth's Turner Syndrome: Turner syndrome is a condition caused by missing one of the usually-paired X chromosomes. How and why it happens is unknown. The end result includes many of the abnormalities Elizabeth has already suffered from. But there is a very long list of potential effects that could occur as she ages. These include poor growth, hormonal imbalances and learning disabilities, to name a few. Ask God to limit the boundaries of Turner Syndrome in her life, preventing it from doing any more damage than it already has. If you are interested in learning more about Turner Syndrome, check out www.turner-syndrome-us.org.
Thanks for hanging in there with us for the long haul. We covet and appreciate your prayers and support.
Much Love,
The Harms
Sent Mar 16, 2006
On Tuesday, March 14th, Elizabeth Joy celebrated her 5 month birthday in style- she got another immunization and had her first vomiting in 10 days! Not quite the cake and candles of years to come, but it's a start. Lest you think it's "all work and no play" around here...we've included some pictures. She's growing like a weed. She recently weighed in at 11 lbs. 3.8 oz! She's finally growing into her clothes! :)
The good news is, despite her "Birthday-puke", she went 10 days without a puke, and has since resumed her puke-free schedule. It seems like she is growing out of it just like the Doctors thought she would. All we can say is, Praise God!
We're off to visit Sara's parents in Clovis this weekend and look forward to introducing Elizabeth to many of her friends in the Valley.
Have a great weekend~
Love,
Matt & Sara
Week 24 (March 24 to March 30) Update:
Sent on March 26, 2006:
This morning, Sara and I threw Elizabeth into the Baby-Bjorn and went for a walk. Our trek began by walking up to UCSF, a path we took several times per day during Elizabeth's hospitalization. While our original purpose was to stop by my office mailbox, we ended up dropping into the ICU to say hello. Several of our favorite nurses happened to be on duty and were thrilled to see her progress. Each of them commented on her increasing size, her cheerful smiles and (surprisingly), how well-adjusted we seemed as parents!
Returning to the places that bore witness to Elizabeth's pain and close-calls was a necessary reminder of all God has done for us. Several times during that season, it seemed like we might not survive the stress. And yet God saw us through, supported by the faithful service and prayers of our family and friends. The fact that Elizabeth is growing, developing and thriving at home is further proof of God's mercy. And although each day continues to have its little struggles, evidence of His faithfulness is all around.
Elizabeth is eating like a champ (drinking 100 ml at time, up from those frustrating days of 5)! The physical therapist is thrilled with her strength progress, and it looks like Elizabeth might be rolling over any day now. She continues to cooing and sing, but just three days ago started laughing! What a delightful sound...
Love you all,
Matt
Week 27 (April 14-20) Update:
Sent on April 19, 2006
Dear Friends and Family,
We hope all of you had a wonderful Easter. Elizabeth certainly did! She celebrated by sitting attentively through the entire church service (Pastor Paul was in rare form) and later donned bunny ears to everyone’s delight. We managed to keep Grandma and Grandpa Harms from sneaking her chocolate. And it’s a good thing, too- because she has just come down with her very first cold. Being hospital-bound and then under house-arrest had allowed us to avoid most germs until now. She’s handling the sniffles like a champ, and now that we’ve established that Tylenol makes her loopy, we’re sticking with the Baby Motrin! This week, Elizabeth’s uncle Philip gets married, and we’re looking forward to introducing her to many on Matt’s side of the family.
In other news, last Friday, Elizabeth Turned 6 Months Old! (And yes, that means that an un-named Grandpa turned 55 years and 6 months old…but who’s counting?) It is amazing to look back over the last 26 weeks and see how far God has brought our little family- from the joy (and scares) of Elizabeth’s birth and our fears of losing her in the ICU, to the daily challenges of raising her at home. While He hasn’t always answered our prayers the way we’ve wanted, He has been faithful to sustain us through it ALL.
A lot has changed in 6 months, including the focus of our prayers. To give you a sense of what’s been going more recently, and the challenges we still face, here’s an update to the list of prayer requests that has been on the website (including answered prayers and new issues).
For those of you who don’t have time to read all the details, the short story is – Overall, Elizabeth is doing well at home. She’s growing (12 lbs. 13 oz. as of today!), learning new skills like blowing bubbles, peek-a-boo and rolling from her belly to her back. She is an absolute angel. She struggles to meet her nutritional goals and the whole “GI/Nutrition-arena” is a daily source of stress for Sara as she tries to encourage Elizabeth to eat. We’re still stuck in a 1-puke-a-day routine, but her growth encouragingly continues on track. The most recent round of doctors’ appointments revealed several areas of possible concern with her heart & muscle tone (see below). We are again reminded that unless God chooses to heal her completely, Elizabeth’s health will likely always be complicated. We need grace to face the unknown future with hope and courage.
Now for the nitty-gritty…
Elizabeth’s Heart: When the surgeon repaired the abnormal section of her aorta, he was unable to reach the furthest section of narrowing. We are praising God that her last echocardiogram revealed that this last section of narrowing has moved to a more favorable location- where it is less likely to cause problems and be easier to repair if need be. Unfortunately, that same echocardiogram showed two previously unseen abnormalities in Elizabeth’s heart, a thickened/stiff mitral valve and a small hole between the right and left ventricle (allowing small amounts of unoxygenated blood to bypass the lungs and directly enter the body’s circulation). Neither abnormality is causing symptoms currently, but will be followed very closely by her cardiologist. If either becomes a problem, open heart surgery would likely be required. Pray that these abnormalities would resolve spontaneously.
Elizabeth’s Inguinal Hernia: “What hernia?” you might be asking. We just discovered it last week during a Daddy-diaper change/physical examination (it’s hard to leave my job at work sometimes). It almost always needs to be repaired surgically. We are crushed at the thought of subjecting Elizabeth to yet another surgery! Just this month, Elizabeth’s age in months was finally larger than the number of surgeries she’s had (five!). Pray that the hernia would disappear (and quickly- our appointment with the surgeon is in 1 week).
Elizabeth's Infant Development: Two months on her back in the ICU and a poorly formed cerebellum have definitely slowed some areas of Elizabeth's development. Her social interaction, language, and fine motor development are "on-track." She is the smiley-est baby we’ve ever met and loves to sing/gurgle/blow spit bubbles. She has also learned to roll from her tummy to her back. However, her gross motor strength, head control and "tone" are behind. We have a physical therapist from the March of Dimes working with her to improve this area. Pray that her muscle tone will develop and that she will rapidly gain the strength she needs to keep her head up, roll over, sit up and eventually walk.
Elizabeth's ability to feed: Her suck and swallow reflexes were initially damaged by nerve injury during her surgery and by disuse while hospitalized. Since coming home, those problems have completely resolved. In fact, last week we introduced her to rice cereal. She seems to hate the taste and texture, but has already figured out how to swallow it down.
Elizabeth’s growth: Despite not eating the amount the nutritionist has set as her “goal,” Elizabeth continues to gain weight. Her legs have gotten a bit chubbier and she’s finally fitting into those 3 month-old clothes. If she continues to gain weight for 1 more month, her feeding tube will be able to come out! Praise God that we haven’t had a single one of the complications feeding tubes can produce (infection, skin breakdown, intestinal blockage, popping out, etc). Despite all the growth, we have to practically force Elizabeth to eat. Unless she is completely starving, she is almost completely disinterested in food- possibly due to the nasty taste of the special formula she started with. As a result, Sara spends too much of her day coaxing food into Elizabeth, and then fighting to help keep it down. Please pray that we would find a formula that Elizabeth actually enjoys, something that she finds both tasty and satisfying.
Elizabeth's reflux problems: Although her reflux problems were very severe initially and led to frequent vomiting, things have improved greatly in this area. We have even been able to reduce the number of reflux medications she requires from three to just one! Though she still vomits several times weekly, it no longer blocks off her airway. Pray that her reflux will continue to diminish and that her vomiting will cease entirely.
Elizabeth's voice: from the same nerve damage during surgery, Elizabeth's vocal cords didn't function properly initially, and we feared they might be permanently paralyzed. Their function continues to improve, and now she makes the cutest coos and babbling I’ve ever heard. Taking the bad with the good, she also cries much louder! We are so grateful that God has healed this area.
Elizabeth's Cerebellum: Somewhat lost in the emergency of her heart surgery is the fact that Elizabeth's cerebellum and adjacent brainstem region are incompletely formed. Continue to pray that her brainstem and cerebellum will continue developing past their normal time or that other areas of her brain will take over the vital functions and minimize any potential symptoms.
Elizabeth's Turner Syndrome: Turner syndrome is a condition caused by missing one of the usually-paired X chromosomes. How and why it happens is unknown. The end result includes many of the abnormalities Elizabeth has already suffered from. But there is a very long list of potential effects that could occur as she ages. These include poor growth, hormonal imbalances and learning disabilities, to name a few. Ask God to limit the boundaries of Turner Syndrome in her life, preventing it from doing any more damage than it already has. If you are interested in learning more about Turner Syndrome, check out www.turner-syndrome-us.org.
Thanks for hanging in there with us for the long haul. We covet and appreciate your prayers and support.
Much Love,
The Harms
Tuesday, February 28, 2006
Elizabeth Archives - February 2006
Week 17 (Feb 03 to Feb 09) Update:
It's been way too long. I realize we ask you to pray for us, and then don't keep you up to date on the outcomes! So here it goes...
We're seeing a slow and steady upward trend in Elizabeth's health. We're finally getting to slow down on all the doctor's appointments and home nurse visits (this week we had only TWO!), which means we can actually try to keep a similar eat/wake/sleep routine for more than a day at a time! This means Elizabeth is sleeping better, eating better and for the first time in her life, I feel like I have some idea of what to expect from day to day. (pukes excluded of course) :)
The update on the breastfeeding is a disappointing one. Last week, during our weekly home-nurse visit, we learned that Elizabeth had stopped gaining weight and was in fact losing weight in the transition to breast milk. (it's lower calorie than Portagen) That combined with the fact that we were doing all oral feeds meant that she wasn't getting what she needed to grow. So we had to backtrack in two ways. We restarted her overnight tube feeds, (thus delaying the timeline for removing the g-tube) and we had to start fortifying the breast milk with Portagen powder. The good news is, she gets all the benefits of breast milk AND the extra calories she needs. The frustrating part is, that means breastfeeding is not a viable option. Of course I am really disappointed. After 4 months of pumping, I can't help but wonder what exactly all that effort, energy, and time away from Elizabeth was for. I had a lot of hope that we could make it work, and even felt like we might see a miracle in this area...and to have invested all that time and hope only to see one more thing not work out at all like we'd planned...well lets just say it's working against me in my efforts to resist a feeling sorry for myself these days. However, it's what is best for Elizabeth that's important, so I'm doing my best to move on.
In other news, we had an intake appointment for the Regional Center last week, (they provide and coordinate resources free-of-charge for children and adults with developmental disabilities) and because of Elizabeth's gross motor weakness (we're still unclear whether it's related to her extended hospital stay, or her neurological deficits or some of both) she qualifies for early intervention, so we'll receive home-visits from an occupational therapist once a week to help her get on track. The good news from that visit is, she seems to be doing great in all the other developmental areas...so that's a blessing.
Finally, it's been 8 weeks since we brought Elizabeth home from the hospital and we haven't ever made the trip back to the 7th floor since we left it. So Monday we went to say "Hi" to all our friends up there, and they were thrilled with how well Elizabeth looks and is doing. In spite of all the bumps in the road, she really is thriving. When we take a few steps back it's hard to believe her short life has been so full. She's started cooing and talking all the time, she is beginning to put things into her mouth, she gets better at the head control thing every day and she continues to live up to her middle name. She is our joy for sure.
Matt and I are hanging in there. This month is a busy one for Matt with lots of hospital responsibilities and nights on-call, so I don't see much of him, but my mom will come over next week to help out for a few days and we continue to be encouraged and blessed by your meals, gifts, phone calls and emails. Thank you for hanging in there with us.
Love,
Sara (for all 3 of us)
Week 20 (Feb 24 to March 02) Update:
Sent Feb. 28, 2006
Hi friends and family,
February is over, March is coming and Elizabeth is 4 1/2 months old! Time seems to just fly by. The lesson for me this month has been acceptance. A while back we sent an email out containing a poem called "Welcome to Holland" (Day 52 for those of you who want to go read it again) Though it's been months since we sent it, it remains a daily battle to accept that "Holland" is where I am, and "Italy"
is not my final destination. 'Cause see, I really want to go to Italy. I want to be "normal". And normal means - the removal of Elizabeth's g-tube, full feeds, breastfeeding and the timely reaching of developmental milestones. And all of this I equate with my competence as a mom. I guess I've been exerting so much energy to get Elizabeth "on track" so that I could feel "like every other mom" and not like the incompetent mom who can't get her daughter to eat enough, stop puking, stop needing her g-tube, learn to breastfeed, sleep through the night, or keep the same schedule for more than a day. As it turns out, so many of my efforts have been so that I would feel better. But over the last few weeks, it has begun to sink in that Elizabeth's challenges are not a reflection of my lack of competence; our "Holland" may include g-tubes, puke, meds, and "low productivity" for a while, and the sooner I stop fighting it, the sooner I can receive the blessings that this season has to offer: endless hours playing with my daughter, minimal requirements for my time outside the home; numerous friends and family still helping us out in so many ways and a nice-size serving of humility - I can't do this on my own, and my value isn't based on my daughter's speedy recovery or my ability to get control.
also realized that I've been holding out on some of my acceptance of our situation because at root, I think I've been afraid that if I got too happy in Holland, God might think I want to stay here and that I didn't still desperately want him to heal Elizabeth. It's silly I know, but that fear has kept me from experiencing a full measure of contentment and joy here. Lots to think about. And lots to be joyful for.
Along those lines, here are a few answers to prayer (based on the prayer requests list on our website) and updates from the last few weeks.
On Feb 12, We made our first visit to church since Elizabeth was born. It was incredible to see so many of our friends at Abundant Life (www.alcf.net) and together praise God for what He's done. We had to get up at 7:30am to make it to the 11:00am service. ;) (we're still rookies at this) but it was worth it. God truly has done great things.
My mom came to help us out last week/end and took the overnight shift, so I got 3 good nights of sleep in a row! She on the other hand, went home with a sleep-deprivation-induced migraine, and we all agreed that God knew what he was doing in giving babies to young women. ;) She's a great blessing and our hero.
Future singer? - As far as we can tell, Elizabeth's voice is back...completely. I can't tell you what a relief this is. She's cooing, and mostly says, "aaaahhhhh" in a dozen pitches. :) She loves to sing along with me and I think she really enjoys hearing her own voice finally! So do we...
Feeding - she's got the suck/swallow thing down, and regularly drinks at least 2/3 of her goal and sometimes gets the 3 1/2 oz down at one time! Additionally, she's actually managed to nurse a few times! It's rare, and more often she gags, and cries, but we'll take what we can get. We're still fortifying her milk, but (in the spirit of acceptance) I've decided to continue to pump as long as I'm able...so Elizabeth will continue to get "the good stuff" a while longer and we can continue to practice nursing as she is willing and able. She continues to puke, but we're learning to "roll with it" and she now weighs over 10 1/2 lbs!
G-tube - friend or foe? With the help of a dose of perspective from a dear friend. We've decided it's our friend. As long as she has it, we're going to use it! It is really helpful for giving her meds, and "topping her off" when she won't eat a full feed...this allows her to go longer between feedings and sleep better...and gives her mama a little bit of the schedule I've been longing for. :) It's actually helpful that her muscle tone is down, because she can't get a good grip on it to pull it out yet! :)
Scarring - All of her scars are healing beautifully.
Kidney - though she's only got one, and it's horseshoe shaped, it's functioning perfectly and the appointment with the pediatric urologist went well...and they never need to see us again! :)
Continued prayer requests:
Elizabeth's gross motor development is way behind. She's getting stronger as the weeks go by but remains floppy. She's going to need to develop those muscles so she can sit up, crawl and eventually walk.
Elizabeth's mom & dad. We were able to have a wonderful date night while my mom was here, but that's just the tip of the iceberg. We really need to take advantage of the lighter schedule Matt will have in March to re-connect and invest in our relationship.
Thanks again for your friendship, prayers and encouragement.
much love,
Sara (for all of us)
Tuesday, January 31, 2006
Elizabeth Archives - January 2006
Week 12 - Jan 03 Update:
Happy New Year~
So Elizabeth has been home for over two weeks now. We're adjusting to her cycles and are less freaked out by her vomiting now that we have a suction pump at home...that way we know we can clear her airway if necessary. She's also vomiting less, and after two episodes yesterday morning, she hasn't puked at all! Thank you for your prayers for this area. We continue to ask for healing for her, and wisdom for us to know how to feed her to best address this. She's also doing well with oral feeds...baby steps.
Tonight is Matt's first night of call in over 2 months. We've had the blessing of a really low-key schedule since Elizabeth was born and from here on out, things will get more intense. Please pray for me - I'll be home alone with her overnight a bunch this month.
All in all, we're hanging in there...sleep deprived and still feeling a bit overwhelmed, but when she smiles...well, it all seems better.
Thanks for your prayers and support...though things are quieter from our end, we're still relying on a whole boat-load of prayers right now.
Love,
Sara (for all three of us)
Jan 7th Update:
HEADLINE NEWS! For the first time, I took a walk with Elizabeth this week. I just put her in her stroller, walked the 6 block round trip to the produce market, and bought some milk. I took a picture to prove it...WE WERE OUTSIDE! :-) And guess what? We both survived. It was a gust of encouragement to feel more comfortable just "going for it."
On another high note, Elizabeth now weighs 9 lbs 1 oz! Her weight gain is on-track, giving us more flexibility with her feedings. She has been having less vomiting and is getting much stronger in her ability to drink from a bottle. Right now, we're trying to only give her bottle feeds during the day to continue increasing that strength. Please pray for wisdom to know how best to feed her.
Elizabeth continues to live up to her middle name and is bringing us so much "Joy". She is vocalizing a lot (a raspy coo is one of our favorites) and she thoroughly enjoys her daddy's rendition of "I love you, a bushel and a peck." We've have follow-up appointments with our pediatrician and the gastroenterologist next week. We'd love to see a timeline for weaning her from her G-Tube, and would appreciate prayers to that end.
It has been almost 3 months since Elizabeth's birth, and almost a month since we've had her at home. As things have settled down, I'd love to report that I'm feeling energized and capable, but I often feel the exact opposite- exhausted and overwhelmed! Even though Elizabeth's health has stabilized, we're realizing the road ahead still holds the chronic issues of Turner's syndrome and our adjustment to them. We cannot walk this road alone and still need your prayers, support, and companionship more than ever. It's difficult for us to admit that we still need help, especially after all you have already done for us. For almost 90 days now, friends and family have brought us meals, cleaned our home, done our laundry and helped keep our lives running. Thank you for your practical outpouring of love. I literally begin to panic when I think about all that's been done for us. We will never be able to pay it back. Thank you notes have gone unwritten, emails and phone calls have not been returned, but please know that every single email, phone call, card, gift, meal, and expression of care has been a true ministry to us. We don't like being "needy" friends. We prefer envisioning ourselves as capable and self-sufficient. We feel more comfortable being the "givers" of support than we do being the "receivers."
On New Year's Eve, I was hit with the realization that Life is moving on. I'm well aware that Elizabeth is not the center of the world (except ours!). Many of you have also experienced challenges in 2005, and others will face them in 2006. Lives are moving on. And I have to confess, I'm afraid of being forgotten. So out of one side of my mouth I say "Thank you for all you have done," while the other side says "Please don't stop."
With humble gratitude,
Sara and Matt
Week 13 & 24 - Jan 18, 2005 Update:
It's hard to believe Elizabeth has been home for just over a month. She is growing and changing daily, and the task of just making it through the day has prevented us from emailing sooner!
Matt's email is down (thus the email from my account) and it's late (for us) so I'll be brief...
Our doctors appointments went well. Thank you for your prayers. The GI Doc. feels like Elizabeth's vomiting is within the range of normal for babies that have reflux and is hopeful that she'll outgrow it by the end of her first year. Overall, her vomiting has improved, which makes all of us happier. Today was tough, as she had a stomach bug which made her pukey all day (yes, pukey is a medical term now) ;) but she was able to hold down some food and is at the moment sleeping peacefully on her continuous feed...if you get this tonight, you can pray that she keeps it down! The one disappointment from our GI appt. was the information that she'll need to keep her g-tube for at least 2-3 months past the date when she's completely weaned from tube-feeds. Fortunately, when that day comes, it's something we can do at home.
On another GI note...we're looking forward to introducing Elizabeth to breastmilk on Monday. Without going into huge detail...I'll just say, we'd love your prayers for a smooth transition to breastfeeding, that Elizabeth would tolerate breastmilk (it's hard to imagine, I know, but her body may not be used to such a fatty diet, and could take some adjustment time), and that my expectations would be realistic. After 3 months of pumping, it's hard not to get my hopes up.
We had a Pediatrician appointment as well, and Dr. Miller was THRILLED with her progress...good weight gain (9 lbs 6 oz), progress with her vomiting, and she's started reaching for things! The therapy we've been doing at home with her hands (to relax the ligaments which cause her hands to clench) have been really successful, and her hands are more often in an open relaxed position, which makes gripping toys all the easier! She's thoroughly entertained by the colorful toys and every day her coordination gets better. (we'll post pictures of her reaching on the website) Because Turner Syndrome can cause clumsiness and trouble with visual-spatial coordination, the fact that she's doing so well with visual fixation and reaching encourages us.
Matt and I are doing pretty well. Matt's been on call quite a bit and I'm surviving at home (thanks to some wonderful meals and helpful visits from friends, family and a home health care nurse). It's a daily task to try to adjust my expectations for myself to somehow carve out "normal" for us...routine is a long way away I'm afraid.
Thanks for your continued love (and help and gifts) and prayers for our family...we're continually blessed.
Love,
Sara, Matt & Elizabeth
Week 15 & 16 - Jan 24, 2006:
So Elizabeth's transition to breast milk has officially begun. Believe it or not, she has actually become quite fond of the foul tasting Portagen (a blessing of babies' underdeveloped taste buds I guess) so she's actually NOT too fond of pure breast milk! As a result, we've been mixing it 50-50 and she does fine with that. The home nurse/lactation consultant visited us on Monday to give us some help and had some great suggestions. All in all, as many of you advised me, it's a process that will take time. So for now, we're sticking to the bottle and slowly getting her used to a new diet, and even more slowly, introducing her to her new method of food delivery. :) She's not thrilled with the changes, but we're all in it for the long haul....
We've got an appointment with her Cardiologist on Thursday...please pray that there will be no signs of fluid re-accumulation! This is the reason we held off on breast milk for so long - to give her lymphatics time to get all sealed up. We can't even begin to think about the consequences of re-accumulation.
Finally, we'll start attending a feeding clinic and working with a feeding therapist next week. Elizabeth needs to learn to suck for longer and take in more food orally. Her vomiting is down to about 1 a day and she's even getting better at gagging, but still holding down the food. We're eager to wean her off of her G-tube, but that's going to take some work on her part. Go Elizabeth!!
Matt's on call tonight and I'm heading to bed to try to get more sleep than he does tonight. (in recent weeks, he's slept better and in fact longer at San Francisco General than he has on other nights when he's at home!) :)
Thanks for keeping us in your prayers. We appreciate you. Goodnight from all of us,
Sara
Jan 28, 2006:
Be prepared for the frequent use of exclamation points...
Our appointments went really well this week! After 4 days on 50% breast milk, Elizabeth's chest x-ray showed NO signs of fluid re-accumulation! In fact, our Cardiologist said the x-ray looked "pristine." A word we like to hear. Elizabeth's progress means we can wean her off one of her meds and completely discontinue another one. Yeah!
She has continued to gain weight and now weighs a whopping 10 lbs! It's hard to believe some women deliver babies that weigh as much as Elizabeth does now at almost 3 1/2 months of age. Because of her weight gain, and her continued success at bottle feeding, we decided to completely wean her from her overnight G-tube feeds...so Elizabeth has gone for 60 hours feeding only from a bottle...and she's doing well! We have to go for 3 months without needing it before the tube can be removed, so as far as we're concerned, we'd like to get the clock ticking as soon as possible.
In the transition to breast milk, Elizabeth's reflux has improved and she hasn't vomited in 3 days! Go Girl!
I've got a cold right now, and so far, Elizabeth hasn't caught it...we'd appreciate your prayers that she'd be protected. The longer we can go without her catching something the better.
The transition to nursing is slow going, but I think we're seeing signs of progress, so if you think of it, pray for continued progress and for continued hope. I'm easily discouraged and don't want to take Elizabeth's resistance personally.
Matt and I could also use your prayers for strength, encouragement and grace. We're exhausted emotionally, spiritually and physically. We feel very much at the end of our rope, and as Pastor Paul always exhorts us - we've "tied a knot" and we're hanging on, but we could use some help.
Love,
Sara (for all of us)
Saturday, December 31, 2005
Elizabeth Archives - December 2005
Day 54 (Dec 07) Update:
Hello again,
As you'll see from the set of photos we've sent tonight, the common theme is "Elizabeth smiling!" Despite everything she's been through, it appears that deep down, she's just a happy baby- living up to her Joy-ful middle name.
Maybe she's smiling because her vomiting has been stable despite going up on her feeding rate. Besides less emesis, she's seems to be less gaggy and more comfortable throughout the day. As a result, she has tons of energy to interact, carry out her occupational therapy "exercises," and just grin away. Or perhaps, it's because today's chest tube output has been very low so far (after several days of increased amounts). It might also be the cute clothes her mother has started putting her in!
We are grateful to God that our prayer request list is simplifying:
-Pray for decreasing chest tube output. Right now, that is the single barrier to having Elizabeth home.
-It may seem premature, but start praying for our transition to life at home with a medically complicated infant.
-As we've started to dream again about her coming home, pray that our hearts will be protected against disappointment, while still being free to hope.
We love you all,
Matt and Sara
Day 55 (Dec 08) Update:
As the week grows older, these seem to be getting briefer.
We're still in the Two steps forward, one step backward phase of things.
The Two Steps Forward: First, Elizabeth is handling her goal tube feedings quite well. She had a small puke this morning, but otherwise kept everything down all day. She also was rooting around and smacking her lips all night. Sara and I snuck her a nipple filled with water and she went-to-town, managing to swallow some before she started coughing. She seemed super thirsty, which in not surprising, considering how dehydrated they're keeping her. They are using diuretics to drain off all extra fluid from her body, hoping that will reduce her chest tube output. Second, her chest tube output has been very low today. So far, there has not even been enough to suck out of the collection bottle to measure!
Now the One Step Backward: Elizabeth continues to have those mysterious fevers. Today, they were higher than in the last several days, leaving her somewhat listless at their peaks. Her white blood cell count (a marker of infection) began climbing as well. No one has any idea where the infection could be hiding, but our confidence in The Team has been shaken a bit by their lack of creativity. I've been suggesting several possibilities for several days and they are just now agreeing to investigate them. Foremost among the possibilities is an infection of the fluid coming from her chest, which I recommend they run tests on Sunday (when there was lots of fluid to send to the lab). Of course, now that they want to run the tests, the fluid amount is too small to send!
Our prayer requests tonight include some specific praises:
1. Thanksgiving for the dramatically reduced chest tube output and continued prayer that it would stay low.
2. Thanksgiving for the continued tolerance of feeds and prayer as we try to introduce some oral Portagen.
3. Prayer that the fevers would stop or a cause be found and treated, and that Elizabeth would not get sick in the interim.
4. Tomorrow is the eight week mark of Elizabeth's hospital stay. It's an anniversary we had hoped to avoid and ask that you would pray specifically for our stamina and perseverance.
Thanks,
Matt and Sara
Day 56 (Dec 09) Update:Hello friends and family,
Like her cousins, she's a natural cheese for the camera. When she's all dolled-up in adorable clothes and hair-bows, it's hard, even for us, to believe how much the last 56 days have held. Can she really have undergone three trips to the operating room, 11 (!!!!!) incisions, countless IV's, lab draws and hundreds of doses of medications? How has she stayed so cute!? And so full of joy!?
Other exciting events from today:
Based on our reports of Elizabeth's championship-winning but covert sucking last night, the occupational therapist came to confirm our observation. It's official- Elizabeth can suck. Now, she just has to coordinate that part with the swallowing part...something we'll work on starting Monday. Because Elizabeth has tolerated 17cc/hr of Portagen, they've decided to increase her goal to 18 cc/hr. She did well on that amount today, vomiting only once.
Her chest tube output has also continued to be miniscule. If the low output continues through the weekend, there's talk of taking out the chest tube Sunday or Monday. At our superstitious worst, we hesitate even to hope. At our faith-filled best, we are thrilled at the prospect!
Prayers on our hearts right now:
- More time spent at our "faith-filled best"
- Continued lack of fevers and lack of chest tube drainage
- Sleep, rest, energy, grace, strength
- That our times at the hospital would coincide with Elizabeth's awake times
Thanks for your 56 days of support.
Matt, Sara and Elizabeth
Day 57 (Dec 10) Update:Good News Friends and Family,
We walked into our daughter's room this morning to find the X-ray technician in the middle of shooting an X-ray of Elizabeth. The nurse was assisting him and so we waited outside for them to finish. As the curtain was pulled back, the nurse called out, "Are you ready to hold your tubeless daughter?" I didn't even catch it. Sara thought she was joking. But we entered the room to see that indeed, her chest tube had been removed! Feel free to stop reading, let out a delighted shout and then continue. Because her output had been so low over the last two days, the surgeons decided to take advantage of this "window" and remove it. We are beside ourselves with gratefulness.
In addition to ridding her of the pesky chest tube, they also turned her from pale yellow back to pink with a blood transfusion! Her heart rate came right down to where it should be, and the added fluid helped to fill out her features. She hasn't had any fever in over 48 hours and she only vomited a tiny bit on one occasion today.
Coming home has suddenly started to look real, AND close. Someone even ventured a guess at early in the week. For that to be true, and we want it to be, several things have to happen:
1. Elizabeth's blood counts and electrolytes have to be stable.
2. Her chest X-rays have to show NO re-accumulation of fluid.
3. She has to be tolerating the feeds and gaining some weight.
4. All the arrangements for home equipment, home nursing visits and parent training have to be made
5. No more fevers
Put those items on your prayer lists, and add one more:
6. Elizabeth's parents need peace and preparation for the coming transition. We're both beginning to feel the weight of being completely responsible for our delightful daughter!
Love you all,
Matt and Sara
Day 58 (Dec 11) Update:Hello again,
Today was another day of progress. Elizabeth showed absolutely NO signs of fluid re-accumulation! And she continued tolerating her increased Portagen. She spent enough of the day awake and smiling to provide plenty of photos, and we even tried out some modified "tummy time." The feeding tube isn't mature enough to put her directly on her belly yet. But soon it will be, allowing us to begin working on her head control and combating the flat head/mullet problem.
In this photo, you'll notice Elizabeth's new boxing gloves! When babies are stressed, they clench their fists with thumbs curled under their fingers. If left this way, the thumb joints won't develop properly. So her new gloves are not a fashion accessory, but actually designed to keep her thumb out to help prevent this problem.
And they'll help her hitch-hike home...the Doc on call tonight said "I can't think of a medical reason not to have you home tomorrow. But we may need a day or so more to arrange your medical equipment and home nursing. Of course, a new attending starts tomorrow and she may feel differently..." So it would seem that we're VERY close to going home.
2 Simple Prayer Requests:
- That nothing would come up that would stand in the way of Elizabeth coming home early this week!
- That Sara and I would be at peace with the transition to having our daughter home!
Love you all,
Matt and Sara
Day 59 (Dec 12) Update:
Matt and I got to the hospital early this morning, hoping to catch the team on rounds. It worked, and we were able to talk with them about the possibility of Elizabeth's discharge. The team agrees that they should keep an eye on her for a few more days just to be sure she doesn't start to re-accumulate fluid. Because Elizabeth is known as "the baby who has had every possible complication" we don't blame them for being cautious. The last thing we want is an early discharge that results in a return visit. The good news is, it still looks like this week is a realistic possibility! Her chest x-ray shows no re-accumulation, even though they've decreased her diuretics, the blood transfusion did its trick and Elizabeth is pink and her vitals and oxygen level are good. We continue to ask God to protect her from further complications.
As we wait for her homecoming, things have been far from mundane. It's amazing how small things take on such value when you've been denied them. You fight so hard for every bit of progress...a "vomit free shift", a day without a fever, a developmental step like fixating her eyes, a clear vocal coo. Each step feels like such a gift now. Praise God from whom all blessings flow.
Today we took Elizabeth's first walk, free of machines and monitors. Tears came as I walked m our little one out of our bay and down the hall to explore...what else, the fish tank in the 7th floor waiting room! We then walked to an outdoor sitting area on the Pediatric floor and Elizabeth got her very first breath of "pure" outside air. (we realize we live in a city) We were ecstatic. We look forward to many long walks through Golden Gate Park and down the isle at church to introduce her to all her friends.
Our afternoon walk was made possible by a transition in Elizabeth's feeding schedule. Despite a rather large vomit mid-morning, we decided to go ahead and try to move forward in her feeding regimen. Because her stomach has not been able to tolerate large volumes of food, they spread her nutrition out over 24 hours using a pump, to provide a "continuous feed" (thus the 18cc/hr. goal). The next step in developing her digestive system is to stretch out her tummy so it will hold larger amounts and learn to digest meals. When working with tubes, this is called a "bolus feed". You hold her nutrition for 3 hours (that's when the walk took place), and then give her the equivalent amount more quickly (in her case, since she's still new at this - they spread it over an hour). So today she got her first bolus feed - 55cc's delivered over an hour! And she didn't throw up! Praise God. It's amazing how much joy we feel when our little one keeps her food down.
Another gift - today our Occupational Therapist gave me reason to hope that Elizabeth has not lost her suck and will most likely regain her ability to swallow as her vocal chord paralysis heals. Swallowing may be in her future. We continue to hope.
As we enjoyed dinner cooked by dear friends last night, we shared how blessed we feel to have been surrounded by such wonderful family and friends during this season. That, we believe, is one of the miracles already from Elizabeth's life. A friend of a friend wrote words that best express it - to describe her own experience of suffering this year.
"I remember hearing growing up that God never gives you anything more than you can handle. I do not believe my definition of that is true anymore, for if it were, who would need God? I believe that my entire family has had a year of more than we could ever possibly handle or imagine. And I think we are all just starting to realize what a toll it has been. But, that is where the healing begins. That is where you realize you were never meant to live life on your own...you were not meant to suffer alone...or to feel alone.
Over the past year and a half, I have felt my loneliest, the deepest sadness, and the most painful grief and fear in my life. I have also experienced the greatest joy, the most unconditional love, and the most heartfelt gratitude. Life does give you more than you can handle, and that is when we are brought to our knees before God. God is there to help carry the burden, and He provides us with people around us to help do the same."
Her words express what is in our hearts. Our hearts are full to overflowing.
With Love,
Sara & Matt
Day 60 (Dec 13) Update:
Today we finally got a "tentative timeline" from the team. As of now, Elizabeth is set to be discharged to home on Thursday! As you can imagine, our hearts are overwhelmed with joy...and a little bit of panic as we realize that we will be solely responsible for her care from here on out! I've warned the nurses that I'm thinking about spending my afternoons with Elizabeth in the ICU waiting room and flagging down someone to check her vitals every once in a while. They laugh...I think they think I'm joking.
In another step forward, Elizabeth had 4 bolus feeds today. She tolerated the first three brilliantly...no puking, minimal discomfort and she even showed signs of hunger prior to each of her feeds! This is encouraging since she hasn't done much "feeling hungry" since she was born...we pray that the next step is increased volume and eventually the incorporation of oral feeding.
The pictures we've attached show some of the highlights of our day...The first one is Elizabeth responding to the praying bear she has in her crib. The bear says "Now I lay me down to sleep, I pray the Lord my soul to keep, Angels watch me through the night (at which point Elizabeth predictably breaks into a grin) "Till I wake with morning light, Amen." (By now Elizabeth is bearing her gums and practically giggling with delight)...I think we've got a prayer warrior on our hands.
The 2nd documents a visit to the ICU from a few of the 49ers. So far we've had visits from Snoopy, Santa, Dancers from the Nutcracker Ballet and now Football players...and Elizabeth has slept through each one!!
The last one is just plain cute...so I had to include it.
Your prayers for no further complications are having their effect. Elizabeth's fevers have not returned. No one knows why they were there in the first place, but everyone seems happy that they're gone. She has also shown no signs of re-accumulation of lymphatic fluid, but will have a confirmatory chest x-ray tomorrow. Tomorrow we'll meet with the folks who will be involved in transitioning Elizabeth home, as well as working with her as an out-patient. As you can tell from the tone of our emails, we're beginning to get excited about how our family will change with Elizabeth's homecoming. We have no idea what to expect, but are praying and trusting that God will give us the grace we need to walk this next leg of the journey.
Thank you for journeying with us.
Love,
Sara & Matt
Day 61 (Dec 14) Update:
How to describe today? Hmmm. I think "stressful" about sums it up. As each person involved in Elizabeth's care began making the final arrangements for discharge, things seemed a little chaotic. Early in the day, it became apparent that her Broviak removal should take place in the operating room...which wouldn't be available until Friday, pushing discharge to Saturday. Then, for some reason, the surgeons abruptly decided they could do it in her room today. They showed up and tried to start before Elizabeth had been given any pain medication...and from there, things are a blur. There was a lot of arguing between the nurses and the surgeons, a lot of painful tears from our little girl, but they got it out. Whether it should have been pulled outside of the OR, and how much pain medication she should have gotten is still a matter of hot debate, but it's over. So the discharge for tomorrow is still on.
Tomorrow's list of things to learn and arrange is truly daunting! How to change the G-tube, how to mix up and store the Portagen, how to run the pump for the Portagen, how to change her dressings, when and where to show up for all her follow-up appointments and the list goes on. To boot, I'll be working the whole morning, compressing everything into the afternoon. It's do-able, but on this end, it seems intimidating!
With all the activity today, we only took a few photos. Tomorrow, I'm sure we'll take a million and more than make up for this photo-less email.
Pray that:
- Elizabeth is comfortable tonight and that her Broviak site and immunization sites aren't painful
- Sara and I can absorb all the information and learning we need to feel comfortable at home
- Our trip home and first hours with Elizabeth home would go smoothly (we'd like them to be pure MAGIC, but are trying to keep our expectations realistic)
Hoping we can fall asleep tonight,
Matt and Sara
Day 62 (Dec 15) Update:
God is Good! Simply put, Elizabeth came home today.
Day 63 (Dec 16) Update:
Hello all you compulsive email checkers! To prevent anyone from thinking we might have returned to the hospital, here's a brief note to let you know that: we're still at home and things are going well. Things have been SUPER BUSY, but tomorrow, we will find a break in the action long enough to bring you some details...and the latest photos of course.
Until then, pray that we would all settle into a routine...a sane one.
Love,
Matt, Sara and Elizabeth
Day 64 (Dec 17) Update:
We've left you "detail-free" since the night before we came home. Below, you're going to find all the details you could ever want, and possibly more. For those of you who are short on time, here's the abridged version: Although Elizabeth is 2 months old, Sara and I are brand new parents. And while we're free of the fatigue of birthing, everything is complicated by our baby's medical problems.
Keeping paging down...the much awaited photo gallery is at the bottom of this page.
Thursday:
Thursday was the day we brought Elizabeth home. The steps required before actually leaving the hospital were numerous. Elizabeth had to pass her "car seat challenge" by sitting strapped in for several hours without having her heart rate go up or her blood oxygen go down. She slept her way to success. While she was snoozing, Sara learned how to change Elizabeth's G-tube and how to replace it if it ever falls out. She also met with the occupational therapist and the discharge coordinator to go over all the appointments we'll have in the coming weeks: pediatrics, cardiology, gastroenterology, occupational therapy, nutrition, speech therapy etc. After my morning lectures, I joined Sara in time to learn about Elizabeth's home feeding pump (I should have asked more questions and paid closer attention- see below).
And then, it was time to pack up. We were amazed at how much stuff had accumulated during our two month stay. The syringes, tape, gauze, diapers, breast-pump supplies, blankets, stuffed animals and cards filled two large garbage bags! After I carted them home and returned to the hospital, we dolled Elizabeth up for a goodbye tour of the place. Having seen our rocky hospital course first-hand, the nurses and staff were so excited for us to be leaving.
We walked to the elevators, pressed "down," waited for one for what seemed like an eternity, climbed in and never looked back.
We filmed the brief walk home, noting many Elizabeth firsts: being truly outdoors, seeing the sunlight, watching the trolley care rumble by, seeing a homeless man and his cart, etc. I'm sure that the huge smiles on our faces told the story to everyone we passed. At the end of our two block journey, I carried Elizabeth across our threshold for the first time. Overcome by emotion and tears, Sara and I prayed right in our foyer and thanked God for allowing Elizabeth to survive to come home and for seeing us through to this day. Tears dried, we gave Elizabeth a tour of her new home. While we worked to unpack, set up the equipment and organize all the paraphernalia, the fact that our apartment tops out at 800 square feet was suddenly quite apparent.
The rest of the afternoon and evening were almost better than we'd dreamed. Elizabeth was delightfully cheerful and awake, and she tolerated all of her feedings with gusto. The very first feeding demonstrated how little I learned during our pump demo session. The end result of my mistake was Elizabeth receiving 30 minutes worth of food in 30 seconds! But she promptly went to sleep in a "food coma." Later in the evening, we let her watch her first TV and even managed to feed her some Portagen from a bottle. Even once we'd put her on her overnight continuous feeds, she seemed hungry, smacking her lips a ton. In fact, she didn't settle down until we'd given her another 1/2 bolus! The trip home had really peaked her appetite.
After that additional feeding, she went to sleep quite easily and only awoke briefly during the night. Sara and I, on the other hand, could hardly close our eyes...every little burp, cough, sneeze and change in her breathing had us up and investigating to make sure she was OK. I am usually a very deep sleeper (Sara gets up, out of bed and pumps right next to me without causing me to stir), but my new responsibilities have me sleeping quite lightly.
Friday:
Our first complete day home was an introduction to the intensity of our new life. While I headed off to work, Sara held down the fort, managing a very complicated cycle of bolus feeding, medication administration and pumping. I'm not sure she had time to use the bathroom, much less accomplish all the things she'd hoped! Our home nurse visited us for the first time and was very impressed with how well organized we had things (funny, considering we feel like we're flying by the seat of our pants). She had some great suggestions to help things run more smoothly (and after Sat, we're hoping she has many more where those came from). Based on Elizabeth's voracious eating on Thursday, we decided to increase her nightly continuous feeding rate from 18cc/hr to 20cc/hr. With that increased rate, Elizabeth slept more soundly, and so did we. Having spent the day listening to the range of Elizabeth noises, we were able to tune more of them out.
Saturday:
It's a good thing we slept more last night as today was a rough one. Probably because we'd increased her feeding rate last night, Elizabeth spent much of the day vomiting. The rest of the time was spent alternating between short bursts of restless sleep, crying and brief periods of uncontrolled smiling! A combination of severe gastric reflux (heart burn) and bad gas from the Portagen seems to be the problem. Watching over her and trying to soothe her was as tiring as doing the same in the ICU...only there are no nurses to take over when you want to go home and sleep! Additionally, all the things you would do for gas are not possible with Elizabeth (gripe water might interact with her medications, patting her back makes her vomit and rubbing her belly is nearly impossible with her scars and G-tube). So we opened all the fun toys she'd received, put them together and let her try them out.
Prayer Requests:
- STAMINA, STAMINA, AND MORE STAMINA
- That we would be patient with Elizabeth's recovery
- That we would be patient with each other and ourselves as we figure out this "Parenting" thing
- That we would have wisdom in raising her, medicating her and changing her feedings
- That her stomach would return to its "Thursday" self quickly
We love you and covet your continued support during this next phase!
Matt, Sara and Elizabeth
Day 65 (Dec 18) Update:
Hello again,
Last night, we prayed for what seems like the zillionth time since we started down this path, that God's mercies would be new every morning, Today, His mercy was evident.
Elizabeth tolerated her feedings much better today and seemed less uncomfortable between her naps. We "discovered" a different tube to hook up to her G-tube between feedings which allows the gas to escape better. With her stomach less full of air, she was able to concentrate on napping and playing. Her naps were long enough for Sara and I to get some things done around the house, including designing some time-saving systems for the weeks ahead.
As many of you know, Sara has been a faithful pumper in hopes that Elizabeth will one day be able to breast feed. In the last two days, two events have spurred on that hope. Yesterday, despite being hooked up to a bolus of Portagen, Elizabeth kept smacking her lips and looking hungry. Since the last thing we want to cause is more choking or vomiting, Sara and I are being extremely conservative with putting things in her mouth during feedings. But as Sara rubbed her lips with the pacifier, she suddenly sucked it into her mouth and went to town for 45 minutes. She has not done that since the day before her first surgery!
The second ray of light happened this morning. Before her second bolus feed of the day, she was again smacking her lips with hunger. Sara gave her some Portagen in a bottle (just 10cc's) and she took it right away! She took another 15cc's before this evening's bolus. From now on, when she's looking famished, we're hoping to incorporate some bottle feeding without causing problems.
As you can tell, we are clinging to small steps forward and asking God to give us realistic expectations for Elizabeth's progress. We also need His grace for her limitations. We know God's mercies are present to us even when we don't feel or experience them, so we're also asking for eyes of faith to both recognize His mercies and cling to hope when we're feeling overwhelmed. I work at least a half-day each day this week, so Sara is especially at risk for those overwhelming moments.
Thank you for your prayers...
Love you all,
Matt and Sara
Day 66 (Dec 19) Update:
Just another day of eating and sleeping. Oh...and a million and one visitors. Our second home-nurse visit went well. Elizabeth's blood pressure, heart rate and temperature are all normal. Here's a funny anxious first parent story: Last night, we found little white things in Elizabeth's hair. Our first thought was head lice! We were worried she'd gotten it from the blankets or hats at the hospital and were making plans to treat her. Then we realized they were just fuzz from one of her blankets. Just to be sure, we had the visiting home nurse confirm. She agrees...they're fuzz!
Join us in praising God for:
-Elizabeth's delightful spirit. Her sweet smile and joyful demeanor energize us throughout the long days
-Fewer vomits today than two days ago and even better napping
-A sign that her vocal chords are healing: 4 sessions of drinking from a bottle & a stronger cry
-A head lice-free daughter!
Love,
Matt and Sara
Day 69 (Dec 22) Update (covering Day 67, 68, 69):
Hello faithful friends and family,
As the Hit Counter on our website reminds me, many of you are faithfully visiting to check in on Elizabeth. And so before you head out to spend Christmas with your families, we wanted to quickly update you on how ours is doing.
Tonight marks the end of our first week having Elizabeth home. The last seven days blend into one another as we've entered a phase of Elizabeth's life that is very similar to that of the typical newborn. We're completely consumed by her- in particular, her eating, sleeping, pooping and peeing. Many of you have been there before and know exactly what we're talking about.
Today also marked Elizabeth's first trip out of the house...in the pouring rain. We took her out to the first round of follow-up visits to Elizabeth's doctors. All of them are pleased with the progress she has made. Some noteworthy PRAISES:
-Elizabeth is now weighing in a robust 8 lbs 9 oz, up from her nadir of 5 lbs and even her edema-inflated birth weight of 6 lbs 14 oz!
-Elizabeth is now routinely taking 15 to 20cc of Portagen from a bottle! That's right. Her sucking and swallowing are improving daily!
-A repeat ultrasound of her abdomen and chest today confirmed that NO fluid is reaccumulating anywhere!
-Her voice continues to strengthen and may soon be loud enough to annoy the neighbors. It's definitely loud enough to wake us up.
-With her progress, they are planning to start Elizabeth on breast milk in just 4 weeks! Sara's pumping days are numbered.
-She is doing well enough that the docs think she's strong enough to make a car trip to Fresno for the Christmas weekend.
Before signing off for the night, just a few other agenda items:
1. I made a trip to the 7th floor ICU to pick up a can of Portagen powder and saw some of the same names on the patient list that were there when Elizabeth was. I was reminded our merciful God was to allow us to bring Elizabeth home for Christmas. Our thankfulness is impossible to put into words. Would you "donate" a few minutes of the time you spend praying for Elizabeth to those kids and their families who didn't make it home to celebrate?
2. As things get busier here and Elizabeth's life grows more mundane, we're planning to make our updates less frequent, probably on the order of once per week. Of course, if her status changes for the worse, or something particularly exciting happens, we might write more frequently. In addition to weekly updates, we will also be posting a frequently updated prayer request list on Elizabeth's webpage that will help guide your prayers. And of course, there will be frequent photo gallery updates too. The photos we've sent to night are just a teaser!
3. Special thanks to those of you who have already responded with little notes to Elizabeth for her scrapbook. There is still plenty of time for those who haven't. If you've lost the form, it came with Part II of Day 65 and there's a similar form on the website that you can fill out and email to us.
We hope that your Christmases are filled with as much joy as ours will be. We also pray that God will bless each of you for your dedicated efforts in supporting us with prayer during this season.
Love,
Matt and Sara
Christmas Week (Dec 23 to Dec 29) Update:
Hello Friends and Family,
Yesterday, Sara, Elizabeth and I returned from Elizabeth's first Road Trip to Clovis, CA. Sara's family was gathering there (grandparents, parents, all the siblings with spouses, and their new kids) and we definitely didn't want to be the only ones missing. After being reassured by our doctors' visits last week, we decided to make the voyage. It took us about eight hours (with the constant help of my parents) to get all of our stuff together and packed into the car. All her paraphernalia barely fit in our large-trunked, four-door sedan!
Despite the Holiday traffic snarls slowing our travel time by two hours, Elizabeth handled the trip bravely. We found out that her car seat wasn't designed for kids with a G-tube sticking out of their abdomen, nor for babies prone to vomiting. After several stops for diaper changes, feedings and unexplained melt-downs, we arrived to the great excitement of the waiting family.
The next few days were great. It was fun to see the whole Peterson family together- to catch-up, play some games, eat good food, hold each others babies, and compare new parent notes. These highlights were interspersed with darting to the other room to clean up Elizabeth after yet another vomit. For some reason, she had a very hard time keeping food down. We tried everything: only G-tube feedings...only bottle feedings...a combination of the two...making the Portagen with a different brand of bottled water...etc...Frustratingly, nothing seemed to make a difference.
Despite all the stomach upset and vomiting, Elizabeth delighted all the family with her coy smiles and bright eyes. She also added sucking her own fingers and some very soft cooing (due to her vocal cord issues) to her "cuteness repertoire".
We came home yesterday afternoon, exhausted, but convinced our fatigue was worth the trip. We crashed immediately into napping and then were joined by my parents, who mercifully showed up with dinner and encouragement.
A longer list of our prayer requests is on the website, but we're particularly focused on Elizabeth's feeding right now. Pray that:
1) Her vomiting would stop and she would begin tolerating her feedings again.
2) Sara and I would have wisdom about how to alter her feedings to assist with that process.
We hope that your Christmas celebrations were wonderful,
Matt, Sara and Elizabeth
Hello again,
As you'll see from the set of photos we've sent tonight, the common theme is "Elizabeth smiling!" Despite everything she's been through, it appears that deep down, she's just a happy baby- living up to her Joy-ful middle name.
Maybe she's smiling because her vomiting has been stable despite going up on her feeding rate. Besides less emesis, she's seems to be less gaggy and more comfortable throughout the day. As a result, she has tons of energy to interact, carry out her occupational therapy "exercises," and just grin away. Or perhaps, it's because today's chest tube output has been very low so far (after several days of increased amounts). It might also be the cute clothes her mother has started putting her in!
We are grateful to God that our prayer request list is simplifying:
-Pray for decreasing chest tube output. Right now, that is the single barrier to having Elizabeth home.
-It may seem premature, but start praying for our transition to life at home with a medically complicated infant.
-As we've started to dream again about her coming home, pray that our hearts will be protected against disappointment, while still being free to hope.
We love you all,
Matt and Sara
Day 55 (Dec 08) Update:
As the week grows older, these seem to be getting briefer.
We're still in the Two steps forward, one step backward phase of things.
The Two Steps Forward: First, Elizabeth is handling her goal tube feedings quite well. She had a small puke this morning, but otherwise kept everything down all day. She also was rooting around and smacking her lips all night. Sara and I snuck her a nipple filled with water and she went-to-town, managing to swallow some before she started coughing. She seemed super thirsty, which in not surprising, considering how dehydrated they're keeping her. They are using diuretics to drain off all extra fluid from her body, hoping that will reduce her chest tube output. Second, her chest tube output has been very low today. So far, there has not even been enough to suck out of the collection bottle to measure!
Now the One Step Backward: Elizabeth continues to have those mysterious fevers. Today, they were higher than in the last several days, leaving her somewhat listless at their peaks. Her white blood cell count (a marker of infection) began climbing as well. No one has any idea where the infection could be hiding, but our confidence in The Team has been shaken a bit by their lack of creativity. I've been suggesting several possibilities for several days and they are just now agreeing to investigate them. Foremost among the possibilities is an infection of the fluid coming from her chest, which I recommend they run tests on Sunday (when there was lots of fluid to send to the lab). Of course, now that they want to run the tests, the fluid amount is too small to send!
Our prayer requests tonight include some specific praises:
1. Thanksgiving for the dramatically reduced chest tube output and continued prayer that it would stay low.
2. Thanksgiving for the continued tolerance of feeds and prayer as we try to introduce some oral Portagen.
3. Prayer that the fevers would stop or a cause be found and treated, and that Elizabeth would not get sick in the interim.
4. Tomorrow is the eight week mark of Elizabeth's hospital stay. It's an anniversary we had hoped to avoid and ask that you would pray specifically for our stamina and perseverance.
Thanks,
Matt and Sara
Day 56 (Dec 09) Update:Hello friends and family,
Like her cousins, she's a natural cheese for the camera. When she's all dolled-up in adorable clothes and hair-bows, it's hard, even for us, to believe how much the last 56 days have held. Can she really have undergone three trips to the operating room, 11 (!!!!!) incisions, countless IV's, lab draws and hundreds of doses of medications? How has she stayed so cute!? And so full of joy!?
Other exciting events from today:
Based on our reports of Elizabeth's championship-winning but covert sucking last night, the occupational therapist came to confirm our observation. It's official- Elizabeth can suck. Now, she just has to coordinate that part with the swallowing part...something we'll work on starting Monday. Because Elizabeth has tolerated 17cc/hr of Portagen, they've decided to increase her goal to 18 cc/hr. She did well on that amount today, vomiting only once.
Her chest tube output has also continued to be miniscule. If the low output continues through the weekend, there's talk of taking out the chest tube Sunday or Monday. At our superstitious worst, we hesitate even to hope. At our faith-filled best, we are thrilled at the prospect!
Prayers on our hearts right now:
- More time spent at our "faith-filled best"
- Continued lack of fevers and lack of chest tube drainage
- Sleep, rest, energy, grace, strength
- That our times at the hospital would coincide with Elizabeth's awake times
Thanks for your 56 days of support.
Matt, Sara and Elizabeth
Day 57 (Dec 10) Update:Good News Friends and Family,
We walked into our daughter's room this morning to find the X-ray technician in the middle of shooting an X-ray of Elizabeth. The nurse was assisting him and so we waited outside for them to finish. As the curtain was pulled back, the nurse called out, "Are you ready to hold your tubeless daughter?" I didn't even catch it. Sara thought she was joking. But we entered the room to see that indeed, her chest tube had been removed! Feel free to stop reading, let out a delighted shout and then continue. Because her output had been so low over the last two days, the surgeons decided to take advantage of this "window" and remove it. We are beside ourselves with gratefulness.
In addition to ridding her of the pesky chest tube, they also turned her from pale yellow back to pink with a blood transfusion! Her heart rate came right down to where it should be, and the added fluid helped to fill out her features. She hasn't had any fever in over 48 hours and she only vomited a tiny bit on one occasion today.
Coming home has suddenly started to look real, AND close. Someone even ventured a guess at early in the week. For that to be true, and we want it to be, several things have to happen:
1. Elizabeth's blood counts and electrolytes have to be stable.
2. Her chest X-rays have to show NO re-accumulation of fluid.
3. She has to be tolerating the feeds and gaining some weight.
4. All the arrangements for home equipment, home nursing visits and parent training have to be made
5. No more fevers
Put those items on your prayer lists, and add one more:
6. Elizabeth's parents need peace and preparation for the coming transition. We're both beginning to feel the weight of being completely responsible for our delightful daughter!
Love you all,
Matt and Sara
Day 58 (Dec 11) Update:Hello again,
Today was another day of progress. Elizabeth showed absolutely NO signs of fluid re-accumulation! And she continued tolerating her increased Portagen. She spent enough of the day awake and smiling to provide plenty of photos, and we even tried out some modified "tummy time." The feeding tube isn't mature enough to put her directly on her belly yet. But soon it will be, allowing us to begin working on her head control and combating the flat head/mullet problem.
In this photo, you'll notice Elizabeth's new boxing gloves! When babies are stressed, they clench their fists with thumbs curled under their fingers. If left this way, the thumb joints won't develop properly. So her new gloves are not a fashion accessory, but actually designed to keep her thumb out to help prevent this problem.
And they'll help her hitch-hike home...the Doc on call tonight said "I can't think of a medical reason not to have you home tomorrow. But we may need a day or so more to arrange your medical equipment and home nursing. Of course, a new attending starts tomorrow and she may feel differently..." So it would seem that we're VERY close to going home.
2 Simple Prayer Requests:
- That nothing would come up that would stand in the way of Elizabeth coming home early this week!
- That Sara and I would be at peace with the transition to having our daughter home!
Love you all,
Matt and Sara
Day 59 (Dec 12) Update:
Matt and I got to the hospital early this morning, hoping to catch the team on rounds. It worked, and we were able to talk with them about the possibility of Elizabeth's discharge. The team agrees that they should keep an eye on her for a few more days just to be sure she doesn't start to re-accumulate fluid. Because Elizabeth is known as "the baby who has had every possible complication" we don't blame them for being cautious. The last thing we want is an early discharge that results in a return visit. The good news is, it still looks like this week is a realistic possibility! Her chest x-ray shows no re-accumulation, even though they've decreased her diuretics, the blood transfusion did its trick and Elizabeth is pink and her vitals and oxygen level are good. We continue to ask God to protect her from further complications.
As we wait for her homecoming, things have been far from mundane. It's amazing how small things take on such value when you've been denied them. You fight so hard for every bit of progress...a "vomit free shift", a day without a fever, a developmental step like fixating her eyes, a clear vocal coo. Each step feels like such a gift now. Praise God from whom all blessings flow.
Today we took Elizabeth's first walk, free of machines and monitors. Tears came as I walked m our little one out of our bay and down the hall to explore...what else, the fish tank in the 7th floor waiting room! We then walked to an outdoor sitting area on the Pediatric floor and Elizabeth got her very first breath of "pure" outside air. (we realize we live in a city) We were ecstatic. We look forward to many long walks through Golden Gate Park and down the isle at church to introduce her to all her friends.
Our afternoon walk was made possible by a transition in Elizabeth's feeding schedule. Despite a rather large vomit mid-morning, we decided to go ahead and try to move forward in her feeding regimen. Because her stomach has not been able to tolerate large volumes of food, they spread her nutrition out over 24 hours using a pump, to provide a "continuous feed" (thus the 18cc/hr. goal). The next step in developing her digestive system is to stretch out her tummy so it will hold larger amounts and learn to digest meals. When working with tubes, this is called a "bolus feed". You hold her nutrition for 3 hours (that's when the walk took place), and then give her the equivalent amount more quickly (in her case, since she's still new at this - they spread it over an hour). So today she got her first bolus feed - 55cc's delivered over an hour! And she didn't throw up! Praise God. It's amazing how much joy we feel when our little one keeps her food down.
Another gift - today our Occupational Therapist gave me reason to hope that Elizabeth has not lost her suck and will most likely regain her ability to swallow as her vocal chord paralysis heals. Swallowing may be in her future. We continue to hope.
As we enjoyed dinner cooked by dear friends last night, we shared how blessed we feel to have been surrounded by such wonderful family and friends during this season. That, we believe, is one of the miracles already from Elizabeth's life. A friend of a friend wrote words that best express it - to describe her own experience of suffering this year.
"I remember hearing growing up that God never gives you anything more than you can handle. I do not believe my definition of that is true anymore, for if it were, who would need God? I believe that my entire family has had a year of more than we could ever possibly handle or imagine. And I think we are all just starting to realize what a toll it has been. But, that is where the healing begins. That is where you realize you were never meant to live life on your own...you were not meant to suffer alone...or to feel alone.
Over the past year and a half, I have felt my loneliest, the deepest sadness, and the most painful grief and fear in my life. I have also experienced the greatest joy, the most unconditional love, and the most heartfelt gratitude. Life does give you more than you can handle, and that is when we are brought to our knees before God. God is there to help carry the burden, and He provides us with people around us to help do the same."
Her words express what is in our hearts. Our hearts are full to overflowing.
With Love,
Sara & Matt
Day 60 (Dec 13) Update:
Today we finally got a "tentative timeline" from the team. As of now, Elizabeth is set to be discharged to home on Thursday! As you can imagine, our hearts are overwhelmed with joy...and a little bit of panic as we realize that we will be solely responsible for her care from here on out! I've warned the nurses that I'm thinking about spending my afternoons with Elizabeth in the ICU waiting room and flagging down someone to check her vitals every once in a while. They laugh...I think they think I'm joking.
In another step forward, Elizabeth had 4 bolus feeds today. She tolerated the first three brilliantly...no puking, minimal discomfort and she even showed signs of hunger prior to each of her feeds! This is encouraging since she hasn't done much "feeling hungry" since she was born...we pray that the next step is increased volume and eventually the incorporation of oral feeding.
The pictures we've attached show some of the highlights of our day...The first one is Elizabeth responding to the praying bear she has in her crib. The bear says "Now I lay me down to sleep, I pray the Lord my soul to keep, Angels watch me through the night (at which point Elizabeth predictably breaks into a grin) "Till I wake with morning light, Amen." (By now Elizabeth is bearing her gums and practically giggling with delight)...I think we've got a prayer warrior on our hands.
The 2nd documents a visit to the ICU from a few of the 49ers. So far we've had visits from Snoopy, Santa, Dancers from the Nutcracker Ballet and now Football players...and Elizabeth has slept through each one!!
The last one is just plain cute...so I had to include it.
Your prayers for no further complications are having their effect. Elizabeth's fevers have not returned. No one knows why they were there in the first place, but everyone seems happy that they're gone. She has also shown no signs of re-accumulation of lymphatic fluid, but will have a confirmatory chest x-ray tomorrow. Tomorrow we'll meet with the folks who will be involved in transitioning Elizabeth home, as well as working with her as an out-patient. As you can tell from the tone of our emails, we're beginning to get excited about how our family will change with Elizabeth's homecoming. We have no idea what to expect, but are praying and trusting that God will give us the grace we need to walk this next leg of the journey.
Thank you for journeying with us.
Love,
Sara & Matt
Day 61 (Dec 14) Update:
How to describe today? Hmmm. I think "stressful" about sums it up. As each person involved in Elizabeth's care began making the final arrangements for discharge, things seemed a little chaotic. Early in the day, it became apparent that her Broviak removal should take place in the operating room...which wouldn't be available until Friday, pushing discharge to Saturday. Then, for some reason, the surgeons abruptly decided they could do it in her room today. They showed up and tried to start before Elizabeth had been given any pain medication...and from there, things are a blur. There was a lot of arguing between the nurses and the surgeons, a lot of painful tears from our little girl, but they got it out. Whether it should have been pulled outside of the OR, and how much pain medication she should have gotten is still a matter of hot debate, but it's over. So the discharge for tomorrow is still on.
Tomorrow's list of things to learn and arrange is truly daunting! How to change the G-tube, how to mix up and store the Portagen, how to run the pump for the Portagen, how to change her dressings, when and where to show up for all her follow-up appointments and the list goes on. To boot, I'll be working the whole morning, compressing everything into the afternoon. It's do-able, but on this end, it seems intimidating!
With all the activity today, we only took a few photos. Tomorrow, I'm sure we'll take a million and more than make up for this photo-less email.
Pray that:
- Elizabeth is comfortable tonight and that her Broviak site and immunization sites aren't painful
- Sara and I can absorb all the information and learning we need to feel comfortable at home
- Our trip home and first hours with Elizabeth home would go smoothly (we'd like them to be pure MAGIC, but are trying to keep our expectations realistic)
Hoping we can fall asleep tonight,
Matt and Sara
Day 62 (Dec 15) Update:
God is Good! Simply put, Elizabeth came home today.
Day 63 (Dec 16) Update:
Hello all you compulsive email checkers! To prevent anyone from thinking we might have returned to the hospital, here's a brief note to let you know that: we're still at home and things are going well. Things have been SUPER BUSY, but tomorrow, we will find a break in the action long enough to bring you some details...and the latest photos of course.
Until then, pray that we would all settle into a routine...a sane one.
Love,
Matt, Sara and Elizabeth
Day 64 (Dec 17) Update:
We've left you "detail-free" since the night before we came home. Below, you're going to find all the details you could ever want, and possibly more. For those of you who are short on time, here's the abridged version: Although Elizabeth is 2 months old, Sara and I are brand new parents. And while we're free of the fatigue of birthing, everything is complicated by our baby's medical problems.
Keeping paging down...the much awaited photo gallery is at the bottom of this page.
Thursday:
Thursday was the day we brought Elizabeth home. The steps required before actually leaving the hospital were numerous. Elizabeth had to pass her "car seat challenge" by sitting strapped in for several hours without having her heart rate go up or her blood oxygen go down. She slept her way to success. While she was snoozing, Sara learned how to change Elizabeth's G-tube and how to replace it if it ever falls out. She also met with the occupational therapist and the discharge coordinator to go over all the appointments we'll have in the coming weeks: pediatrics, cardiology, gastroenterology, occupational therapy, nutrition, speech therapy etc. After my morning lectures, I joined Sara in time to learn about Elizabeth's home feeding pump (I should have asked more questions and paid closer attention- see below).
And then, it was time to pack up. We were amazed at how much stuff had accumulated during our two month stay. The syringes, tape, gauze, diapers, breast-pump supplies, blankets, stuffed animals and cards filled two large garbage bags! After I carted them home and returned to the hospital, we dolled Elizabeth up for a goodbye tour of the place. Having seen our rocky hospital course first-hand, the nurses and staff were so excited for us to be leaving.
We walked to the elevators, pressed "down," waited for one for what seemed like an eternity, climbed in and never looked back.
We filmed the brief walk home, noting many Elizabeth firsts: being truly outdoors, seeing the sunlight, watching the trolley care rumble by, seeing a homeless man and his cart, etc. I'm sure that the huge smiles on our faces told the story to everyone we passed. At the end of our two block journey, I carried Elizabeth across our threshold for the first time. Overcome by emotion and tears, Sara and I prayed right in our foyer and thanked God for allowing Elizabeth to survive to come home and for seeing us through to this day. Tears dried, we gave Elizabeth a tour of her new home. While we worked to unpack, set up the equipment and organize all the paraphernalia, the fact that our apartment tops out at 800 square feet was suddenly quite apparent.
The rest of the afternoon and evening were almost better than we'd dreamed. Elizabeth was delightfully cheerful and awake, and she tolerated all of her feedings with gusto. The very first feeding demonstrated how little I learned during our pump demo session. The end result of my mistake was Elizabeth receiving 30 minutes worth of food in 30 seconds! But she promptly went to sleep in a "food coma." Later in the evening, we let her watch her first TV and even managed to feed her some Portagen from a bottle. Even once we'd put her on her overnight continuous feeds, she seemed hungry, smacking her lips a ton. In fact, she didn't settle down until we'd given her another 1/2 bolus! The trip home had really peaked her appetite.
After that additional feeding, she went to sleep quite easily and only awoke briefly during the night. Sara and I, on the other hand, could hardly close our eyes...every little burp, cough, sneeze and change in her breathing had us up and investigating to make sure she was OK. I am usually a very deep sleeper (Sara gets up, out of bed and pumps right next to me without causing me to stir), but my new responsibilities have me sleeping quite lightly.
Friday:
Our first complete day home was an introduction to the intensity of our new life. While I headed off to work, Sara held down the fort, managing a very complicated cycle of bolus feeding, medication administration and pumping. I'm not sure she had time to use the bathroom, much less accomplish all the things she'd hoped! Our home nurse visited us for the first time and was very impressed with how well organized we had things (funny, considering we feel like we're flying by the seat of our pants). She had some great suggestions to help things run more smoothly (and after Sat, we're hoping she has many more where those came from). Based on Elizabeth's voracious eating on Thursday, we decided to increase her nightly continuous feeding rate from 18cc/hr to 20cc/hr. With that increased rate, Elizabeth slept more soundly, and so did we. Having spent the day listening to the range of Elizabeth noises, we were able to tune more of them out.
Saturday:
It's a good thing we slept more last night as today was a rough one. Probably because we'd increased her feeding rate last night, Elizabeth spent much of the day vomiting. The rest of the time was spent alternating between short bursts of restless sleep, crying and brief periods of uncontrolled smiling! A combination of severe gastric reflux (heart burn) and bad gas from the Portagen seems to be the problem. Watching over her and trying to soothe her was as tiring as doing the same in the ICU...only there are no nurses to take over when you want to go home and sleep! Additionally, all the things you would do for gas are not possible with Elizabeth (gripe water might interact with her medications, patting her back makes her vomit and rubbing her belly is nearly impossible with her scars and G-tube). So we opened all the fun toys she'd received, put them together and let her try them out.
Prayer Requests:
- STAMINA, STAMINA, AND MORE STAMINA
- That we would be patient with Elizabeth's recovery
- That we would be patient with each other and ourselves as we figure out this "Parenting" thing
- That we would have wisdom in raising her, medicating her and changing her feedings
- That her stomach would return to its "Thursday" self quickly
We love you and covet your continued support during this next phase!
Matt, Sara and Elizabeth
Day 65 (Dec 18) Update:
Hello again,
Last night, we prayed for what seems like the zillionth time since we started down this path, that God's mercies would be new every morning, Today, His mercy was evident.
Elizabeth tolerated her feedings much better today and seemed less uncomfortable between her naps. We "discovered" a different tube to hook up to her G-tube between feedings which allows the gas to escape better. With her stomach less full of air, she was able to concentrate on napping and playing. Her naps were long enough for Sara and I to get some things done around the house, including designing some time-saving systems for the weeks ahead.
As many of you know, Sara has been a faithful pumper in hopes that Elizabeth will one day be able to breast feed. In the last two days, two events have spurred on that hope. Yesterday, despite being hooked up to a bolus of Portagen, Elizabeth kept smacking her lips and looking hungry. Since the last thing we want to cause is more choking or vomiting, Sara and I are being extremely conservative with putting things in her mouth during feedings. But as Sara rubbed her lips with the pacifier, she suddenly sucked it into her mouth and went to town for 45 minutes. She has not done that since the day before her first surgery!
The second ray of light happened this morning. Before her second bolus feed of the day, she was again smacking her lips with hunger. Sara gave her some Portagen in a bottle (just 10cc's) and she took it right away! She took another 15cc's before this evening's bolus. From now on, when she's looking famished, we're hoping to incorporate some bottle feeding without causing problems.
As you can tell, we are clinging to small steps forward and asking God to give us realistic expectations for Elizabeth's progress. We also need His grace for her limitations. We know God's mercies are present to us even when we don't feel or experience them, so we're also asking for eyes of faith to both recognize His mercies and cling to hope when we're feeling overwhelmed. I work at least a half-day each day this week, so Sara is especially at risk for those overwhelming moments.
Thank you for your prayers...
Love you all,
Matt and Sara
Day 66 (Dec 19) Update:
Just another day of eating and sleeping. Oh...and a million and one visitors. Our second home-nurse visit went well. Elizabeth's blood pressure, heart rate and temperature are all normal. Here's a funny anxious first parent story: Last night, we found little white things in Elizabeth's hair. Our first thought was head lice! We were worried she'd gotten it from the blankets or hats at the hospital and were making plans to treat her. Then we realized they were just fuzz from one of her blankets. Just to be sure, we had the visiting home nurse confirm. She agrees...they're fuzz!
Join us in praising God for:
-Elizabeth's delightful spirit. Her sweet smile and joyful demeanor energize us throughout the long days
-Fewer vomits today than two days ago and even better napping
-A sign that her vocal chords are healing: 4 sessions of drinking from a bottle & a stronger cry
-A head lice-free daughter!
Love,
Matt and Sara
Day 69 (Dec 22) Update (covering Day 67, 68, 69):
Hello faithful friends and family,
As the Hit Counter on our website reminds me, many of you are faithfully visiting to check in on Elizabeth. And so before you head out to spend Christmas with your families, we wanted to quickly update you on how ours is doing.
Tonight marks the end of our first week having Elizabeth home. The last seven days blend into one another as we've entered a phase of Elizabeth's life that is very similar to that of the typical newborn. We're completely consumed by her- in particular, her eating, sleeping, pooping and peeing. Many of you have been there before and know exactly what we're talking about.
Today also marked Elizabeth's first trip out of the house...in the pouring rain. We took her out to the first round of follow-up visits to Elizabeth's doctors. All of them are pleased with the progress she has made. Some noteworthy PRAISES:
-Elizabeth is now weighing in a robust 8 lbs 9 oz, up from her nadir of 5 lbs and even her edema-inflated birth weight of 6 lbs 14 oz!
-Elizabeth is now routinely taking 15 to 20cc of Portagen from a bottle! That's right. Her sucking and swallowing are improving daily!
-A repeat ultrasound of her abdomen and chest today confirmed that NO fluid is reaccumulating anywhere!
-Her voice continues to strengthen and may soon be loud enough to annoy the neighbors. It's definitely loud enough to wake us up.
-With her progress, they are planning to start Elizabeth on breast milk in just 4 weeks! Sara's pumping days are numbered.
-She is doing well enough that the docs think she's strong enough to make a car trip to Fresno for the Christmas weekend.
Before signing off for the night, just a few other agenda items:
1. I made a trip to the 7th floor ICU to pick up a can of Portagen powder and saw some of the same names on the patient list that were there when Elizabeth was. I was reminded our merciful God was to allow us to bring Elizabeth home for Christmas. Our thankfulness is impossible to put into words. Would you "donate" a few minutes of the time you spend praying for Elizabeth to those kids and their families who didn't make it home to celebrate?
2. As things get busier here and Elizabeth's life grows more mundane, we're planning to make our updates less frequent, probably on the order of once per week. Of course, if her status changes for the worse, or something particularly exciting happens, we might write more frequently. In addition to weekly updates, we will also be posting a frequently updated prayer request list on Elizabeth's webpage that will help guide your prayers. And of course, there will be frequent photo gallery updates too. The photos we've sent to night are just a teaser!
3. Special thanks to those of you who have already responded with little notes to Elizabeth for her scrapbook. There is still plenty of time for those who haven't. If you've lost the form, it came with Part II of Day 65 and there's a similar form on the website that you can fill out and email to us.
We hope that your Christmases are filled with as much joy as ours will be. We also pray that God will bless each of you for your dedicated efforts in supporting us with prayer during this season.
Love,
Matt and Sara
Christmas Week (Dec 23 to Dec 29) Update:
Hello Friends and Family,
Yesterday, Sara, Elizabeth and I returned from Elizabeth's first Road Trip to Clovis, CA. Sara's family was gathering there (grandparents, parents, all the siblings with spouses, and their new kids) and we definitely didn't want to be the only ones missing. After being reassured by our doctors' visits last week, we decided to make the voyage. It took us about eight hours (with the constant help of my parents) to get all of our stuff together and packed into the car. All her paraphernalia barely fit in our large-trunked, four-door sedan!
Despite the Holiday traffic snarls slowing our travel time by two hours, Elizabeth handled the trip bravely. We found out that her car seat wasn't designed for kids with a G-tube sticking out of their abdomen, nor for babies prone to vomiting. After several stops for diaper changes, feedings and unexplained melt-downs, we arrived to the great excitement of the waiting family.
The next few days were great. It was fun to see the whole Peterson family together- to catch-up, play some games, eat good food, hold each others babies, and compare new parent notes. These highlights were interspersed with darting to the other room to clean up Elizabeth after yet another vomit. For some reason, she had a very hard time keeping food down. We tried everything: only G-tube feedings...only bottle feedings...a combination of the two...making the Portagen with a different brand of bottled water...etc...Frustratingly, nothing seemed to make a difference.
Despite all the stomach upset and vomiting, Elizabeth delighted all the family with her coy smiles and bright eyes. She also added sucking her own fingers and some very soft cooing (due to her vocal cord issues) to her "cuteness repertoire".
We came home yesterday afternoon, exhausted, but convinced our fatigue was worth the trip. We crashed immediately into napping and then were joined by my parents, who mercifully showed up with dinner and encouragement.
A longer list of our prayer requests is on the website, but we're particularly focused on Elizabeth's feeding right now. Pray that:
1) Her vomiting would stop and she would begin tolerating her feedings again.
2) Sara and I would have wisdom about how to alter her feedings to assist with that process.
We hope that your Christmas celebrations were wonderful,
Matt, Sara and Elizabeth
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