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.
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.
Email Update Sent August 6, 2006:
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.
Sara (for all of us)
Email Update Sent August 7, 2006:
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.
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!
Email Update Sent August 12, 2006:
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...
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!
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).
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.
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!
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!
Email Update Sent August 25, 2006: "Good Days and Bad Days"
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,
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.
Sara (for all of us)