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
Saturday, December 31, 2005
Tuesday, December 6, 2005
Elizabeth Archives - Day 53
Keeping it brief tonight-
The Good News:
1. Elizabeth got her last doses of vancomycin and rifampin! She's currently not requiring any antibiotics.
2. Despite increasing her tube feeds to 16 cc/hr this morning, Elizabeth's puking has not increased.
3. A repeat ultrasound to look at the status of her venous blood clots showed good improvement, so much that they stopped her blood thinners altogether. These were requiring twice daily shots into her thighs, so she's really happy about it.
4. She spent most of the day awake and delightful again.
5. She's had no fevers for over 24 hours.
6. She seems to enjoy her oral stimulation exercises and she seems to be responding with decreased irritation at things being placed in her mouth.
The Prayer Requests:
1. Continued tolerance of her increasing tube feeds...just 1 cc/hour to go. We're hoping the daily antibiotics were contributing to her emesis and that their discontinuation will help.
2. Her chest tube output continues in the higher-than-we'd-like range. It's come back down to the 20cc/day range, but is nowhere near the 2cc/day it needs to be.
3. Sara and I are leaving Elizabeth under her mother's watchful eye on Thursday to go on a date! Pray that we'll be able to spend some time talking about something other than Elizabeth, and that we'll be able to have some true fun.
Thanks,
Matt and Sara
The Good News:
1. Elizabeth got her last doses of vancomycin and rifampin! She's currently not requiring any antibiotics.
2. Despite increasing her tube feeds to 16 cc/hr this morning, Elizabeth's puking has not increased.
3. A repeat ultrasound to look at the status of her venous blood clots showed good improvement, so much that they stopped her blood thinners altogether. These were requiring twice daily shots into her thighs, so she's really happy about it.
4. She spent most of the day awake and delightful again.
5. She's had no fevers for over 24 hours.
6. She seems to enjoy her oral stimulation exercises and she seems to be responding with decreased irritation at things being placed in her mouth.
The Prayer Requests:
1. Continued tolerance of her increasing tube feeds...just 1 cc/hour to go. We're hoping the daily antibiotics were contributing to her emesis and that their discontinuation will help.
2. Her chest tube output continues in the higher-than-we'd-like range. It's come back down to the 20cc/day range, but is nowhere near the 2cc/day it needs to be.
3. Sara and I are leaving Elizabeth under her mother's watchful eye on Thursday to go on a date! Pray that we'll be able to spend some time talking about something other than Elizabeth, and that we'll be able to have some true fun.
Thanks,
Matt and Sara
Monday, December 5, 2005
Elizabeth Archives - Day 52
Now that we're all caught up....
Elizabeth was more awake today that ever before. It seems like she spent 2/3 of the day awake, content and looking around. It was really good for our parent hearts to see her so bright and interactive, despite everything that's still going on:
- She was still having fevers today
- She's developed a whopping diaper rash that makes her cry anytime her bottom gets touched
- Her chest tube output has continued to climb and was up to 100 cc yesterday (Not good!) Fortunately, it's on target to be lower today after restarting her diuretics.
Tomorrow marks the end of her 6-week course of antibiotics for that nasty infection she developed in the ICU. Everyone is hoping that these two antibiotics might be upsetting her stomach and that their discontinuation will help her tummy issues. Today we increased her G-tube feedings by 1cc per hour. As of our leaving the hospital, she still hadn't vomited despite the increased rate. We only have to get to 17. If only we could get to 17!
Some thoughts from Sara ~ On a more personal note, Elizabeth and I had a few moments over the last few days that were pivotal in our bonding...or at least clear evidence that we are bonding. At one point, as a result of her fevers, she needed to give some blood for some labs and it couldn't be taken from one of her existing IVs. So, the nurse had to do an "arterial stick" to draw blood from her artery, which is very painful. She screamed and squirmed and it was all I could do not to bundle her up and run away with her. Afterwards, I leaned over her and nuzzled my face in the crook of her neck, our cheeks touching. I whispered my love for her. She instantly quieted and began rooting on my cheek...we were in our own little world. Then yesterday, she was fussing and after I swaddled her and picked her up (tubes and all) I let her face press against my shirt and again she rooted...literally taking in the scent and taste of me...it was amazing. On one hand, it was such an intimate moment, it seems strange to share it with so large a group...but I know that many of you have been praying for Elizabeth to bond with us...and I want you to know...despite tubes, despite scratchy hospital blankets, alarms and lights, our family is bonding...she is responding to us and her heart seems to have been protected in a special way.
Finally, as Holidays pass, and family comes and goes, Matt and I experience each moment with profound emotions...often our joy over seeing family and introducing our daughter to the world are mixed with the grief over what she has been denied in her short life..."tube-free" cuddling, nursing, quiet sleep, a safe warm crib near her mama and daddy...the list goes on. And while it has always been true, we are in this season more painfully aware that our future is unknown and will most likely be different than the hopes and dreams we've always had. Yet we are learning in small ways, to treasure what is and entrust our future to the only One who has ever known it. In that effort, we have been touched by an article, which I've copied below. It poignantly describes the experience of parents of children with special needs...It is at the same time - where we are, and where we long to be...
WELCOME TO HOLLANDby Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved. .
Will you join us in praying:
~That Elizabeth's chest tube would be able to be removed because her drainage has sufficiently dried up. Chest tubes are painful and it's removal would be a step toward going home, as well as a step toward more pain-free cuddling, and would decrease the possible sites for future infections.
~That she would continue to keep her 15 cc's/hour down and would be able to be bumped up to 16 tomorrow without vomiting!
~That she would be able to come home by Christmas...we're still holding out hope.
Thank you for your faithfulness to us.
Love,
Matt & Sara
Elizabeth was more awake today that ever before. It seems like she spent 2/3 of the day awake, content and looking around. It was really good for our parent hearts to see her so bright and interactive, despite everything that's still going on:
- She was still having fevers today
- She's developed a whopping diaper rash that makes her cry anytime her bottom gets touched
- Her chest tube output has continued to climb and was up to 100 cc yesterday (Not good!) Fortunately, it's on target to be lower today after restarting her diuretics.
Tomorrow marks the end of her 6-week course of antibiotics for that nasty infection she developed in the ICU. Everyone is hoping that these two antibiotics might be upsetting her stomach and that their discontinuation will help her tummy issues. Today we increased her G-tube feedings by 1cc per hour. As of our leaving the hospital, she still hadn't vomited despite the increased rate. We only have to get to 17. If only we could get to 17!
Some thoughts from Sara ~ On a more personal note, Elizabeth and I had a few moments over the last few days that were pivotal in our bonding...or at least clear evidence that we are bonding. At one point, as a result of her fevers, she needed to give some blood for some labs and it couldn't be taken from one of her existing IVs. So, the nurse had to do an "arterial stick" to draw blood from her artery, which is very painful. She screamed and squirmed and it was all I could do not to bundle her up and run away with her. Afterwards, I leaned over her and nuzzled my face in the crook of her neck, our cheeks touching. I whispered my love for her. She instantly quieted and began rooting on my cheek...we were in our own little world. Then yesterday, she was fussing and after I swaddled her and picked her up (tubes and all) I let her face press against my shirt and again she rooted...literally taking in the scent and taste of me...it was amazing. On one hand, it was such an intimate moment, it seems strange to share it with so large a group...but I know that many of you have been praying for Elizabeth to bond with us...and I want you to know...despite tubes, despite scratchy hospital blankets, alarms and lights, our family is bonding...she is responding to us and her heart seems to have been protected in a special way.
Finally, as Holidays pass, and family comes and goes, Matt and I experience each moment with profound emotions...often our joy over seeing family and introducing our daughter to the world are mixed with the grief over what she has been denied in her short life..."tube-free" cuddling, nursing, quiet sleep, a safe warm crib near her mama and daddy...the list goes on. And while it has always been true, we are in this season more painfully aware that our future is unknown and will most likely be different than the hopes and dreams we've always had. Yet we are learning in small ways, to treasure what is and entrust our future to the only One who has ever known it. In that effort, we have been touched by an article, which I've copied below. It poignantly describes the experience of parents of children with special needs...It is at the same time - where we are, and where we long to be...
WELCOME TO HOLLANDby Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved. .
Will you join us in praying:
~That Elizabeth's chest tube would be able to be removed because her drainage has sufficiently dried up. Chest tubes are painful and it's removal would be a step toward going home, as well as a step toward more pain-free cuddling, and would decrease the possible sites for future infections.
~That she would continue to keep her 15 cc's/hour down and would be able to be bumped up to 16 tomorrow without vomiting!
~That she would be able to come home by Christmas...we're still holding out hope.
Thank you for your faithfulness to us.
Love,
Matt & Sara
Sunday, December 4, 2005
Elizabeth Archives - Day 51
Dear Friends and Family,
Apologies for the delay in sending out the Sunday, Day 51 (Dec 4) update. Hopefully, no one was worried that a huge set-back had been suffered. You can be sure that if things are going poorly, we'll find a way to get that prayer request out! A day of silence probably means things were relatively stable and we were busy in some other way.
There will be a separate Day 52 update, so this covers only the events of yesterday. I'll save all the prayer requests for the end of the Day 52 update. By the way, the Elizabeth Joy section of our website is pretty much up and functional at www.msharms.com (check it out for additional Elizabeth "Extras," like her official birth stats and Mom/Dad sanctioned Nicknames). Each day's update is available there, and as time permits, I'll be going back and filling in the archives.
Back to Elizabeth's Sunday...She continued to have fevers throughout the day, and no can figure out where they are coming from. Her chest tube fluid output over Saturday also doubled again :-( back up to 40 cc/hr. They had to restart her diuretics to try and dehydrate her to try and slow the fluid down again. Despite this, she was continuing to make more fluid than she had since her thoracic duct ligation.
Other than that, she slept a lot and managed to keep her food down rather well- only one or two episodes of vomiting.
Prayer Requests: See Day 52's update.
Thanks,
Matt
Apologies for the delay in sending out the Sunday, Day 51 (Dec 4) update. Hopefully, no one was worried that a huge set-back had been suffered. You can be sure that if things are going poorly, we'll find a way to get that prayer request out! A day of silence probably means things were relatively stable and we were busy in some other way.
There will be a separate Day 52 update, so this covers only the events of yesterday. I'll save all the prayer requests for the end of the Day 52 update. By the way, the Elizabeth Joy section of our website is pretty much up and functional at www.msharms.com (check it out for additional Elizabeth "Extras," like her official birth stats and Mom/Dad sanctioned Nicknames). Each day's update is available there, and as time permits, I'll be going back and filling in the archives.
Back to Elizabeth's Sunday...She continued to have fevers throughout the day, and no can figure out where they are coming from. Her chest tube fluid output over Saturday also doubled again :-( back up to 40 cc/hr. They had to restart her diuretics to try and dehydrate her to try and slow the fluid down again. Despite this, she was continuing to make more fluid than she had since her thoracic duct ligation.
Other than that, she slept a lot and managed to keep her food down rather well- only one or two episodes of vomiting.
Prayer Requests: See Day 52's update.
Thanks,
Matt
Saturday, December 3, 2005
Elizabeth Archives - Day 50
Hello again. It's hard to believe that we've been at this for 50 days. We're really grateful that each of you have chosen to walk this difficult road with us, holding us up when we're too tired to do it ourselves. Today, our nurse told us that Elizabeth was really lucky to have us as parents because we've stayed involved and present. Apparently, many parents, faced with repeated complications and prolonged hospital stays, become weary and stop spending as much time at the hospital. Our ability to stay engaged and present for Elizabeth is only because of God's mercies and your prayerful support.
Elizabeth had a pretty good day today, punctuated by two reminders of how quickly things can change. While I was holding her, she vomited, and for the first time, was unable to clear it from her throat. In the time it took to get her throat cleared with suctioning, she turned blue and gave me quite a scare. In the afternoon, she suddenly turned bright red from head to toe (except for her tummy) and became slightly swollen. It lasted about thirty minutes and then went away, leaving everyone to puzzle about the cause. Each of these events reminded us of how little separates Elizabeth from further complication. And it reminded us to be grateful for even the slowest progress.
Elizabeth also continued to have unexplained fevers today. Of course, fevers mean sending large blood samples to the lab for culture, worsening her anemia. When someone is anemic, their heart rate increases to circulate their remaining blood faster. When her blood count is normal, Elizabeth's heart rate is in the 130's. Today, it got as high as 215! We suspect they may want to give her a blood transfusion tomorrow or Monday.
Please pray for:
-These fevers...that they'd end or the culprit found and successfully treated.
-Her feeding issues to resolve.
-Protection from the usual complications that plague long hospital stays
Love you folks,
Matt and Sara
Elizabeth had a pretty good day today, punctuated by two reminders of how quickly things can change. While I was holding her, she vomited, and for the first time, was unable to clear it from her throat. In the time it took to get her throat cleared with suctioning, she turned blue and gave me quite a scare. In the afternoon, she suddenly turned bright red from head to toe (except for her tummy) and became slightly swollen. It lasted about thirty minutes and then went away, leaving everyone to puzzle about the cause. Each of these events reminded us of how little separates Elizabeth from further complication. And it reminded us to be grateful for even the slowest progress.
Elizabeth also continued to have unexplained fevers today. Of course, fevers mean sending large blood samples to the lab for culture, worsening her anemia. When someone is anemic, their heart rate increases to circulate their remaining blood faster. When her blood count is normal, Elizabeth's heart rate is in the 130's. Today, it got as high as 215! We suspect they may want to give her a blood transfusion tomorrow or Monday.
Please pray for:
-These fevers...that they'd end or the culprit found and successfully treated.
-Her feeding issues to resolve.
-Protection from the usual complications that plague long hospital stays
Love you folks,
Matt and Sara
Friday, December 2, 2005
Elizabeth Archives - Day 49
Dear Friends and Family,
Tonight we'll spare you the diet details in favor of delivering an email of unadulterated good news!
Elizabeth had a follow-up MRI this morning to assess the bleeding around her brain. We are praising God that it has completely healed! While her cerebellum and brainstem still appear abnormal, the radiologists were unable to find the other abnormal area they'd seen previously in the cortex. If you recall, the previous scan had shown some abnormal brain folding on the right side called polymicrogyria. The presence of this abnormality suggested a much higher chance of developmental problems and seizures. But to repeat, they couldn't find that area on this scan! We're doubly happy about that.
So yes, feedings are still going nowhere, she'll likely need another transfusion, and she has another fever, but tonight we're focusing on the very good news from her MRI. We even went out for sushi to celebrate.
Keep praying that:
-Elizabeth's reflux and vomiting will stop without requiring changing her feeding tube
-The fever she's having would end and NOT mean yet another infection requiring yet more antibiotics
-God would cause more good news to poor down on us
Matt and Sara
Tonight we'll spare you the diet details in favor of delivering an email of unadulterated good news!
Elizabeth had a follow-up MRI this morning to assess the bleeding around her brain. We are praising God that it has completely healed! While her cerebellum and brainstem still appear abnormal, the radiologists were unable to find the other abnormal area they'd seen previously in the cortex. If you recall, the previous scan had shown some abnormal brain folding on the right side called polymicrogyria. The presence of this abnormality suggested a much higher chance of developmental problems and seizures. But to repeat, they couldn't find that area on this scan! We're doubly happy about that.
So yes, feedings are still going nowhere, she'll likely need another transfusion, and she has another fever, but tonight we're focusing on the very good news from her MRI. We even went out for sushi to celebrate.
Keep praying that:
-Elizabeth's reflux and vomiting will stop without requiring changing her feeding tube
-The fever she's having would end and NOT mean yet another infection requiring yet more antibiotics
-God would cause more good news to poor down on us
Matt and Sara
Thursday, December 1, 2005
Elizabeth Archives - Day 48
Thanks to my new residency rotation, I have thankfully returned to being at my daughter's bedside during the days! And already the rewards are being reaped in her smiles (see the photos)! Over the next month, I am on a lighter rotation that will involve lots of self-study and lecture-based learning. If I manage my time well, it should allow me to be with Elizabeth and Sara more each day. We're all looking forward to that.
As a result, I got to sit in on The Team's Morning Rounds, and heard some things I like: It's time to stop the anti-fungal medication because her urine has stopped growing fungus. It's time to stop the latest antibiotic because nothing came of the fever she had several days ago. Only 5 more days to go of the other antibiotics that were started over 6 weeks ago. We're all big fans of simplifying. We also discussed some bigger events coming up: Tomorrow morning, she will get sedated again and have a second MRI of her brain. This will hopefully show that the bleeding around her brain is healing and not getting larger while on blood thinners. If she isn't tolerating feeds better by Monday, we'll probably have a longer tube placed to put the feeding directly into her intestine (it uses the hole Elizabeth already has, but the part inside is longer).
Our wonderful pediatrician stopped by to say hello and she began preparing us mentally for the intensive medical needs Elizabeth is likely to have once coming home. It was both exciting and frightening to begin envisioning that day! The Occupational therapist came by to review the exercises to help Elizabeth suck and swallow. We didn't get to practice them though- the photos below were taken during the few minutes she spent awake. We were too enthralled by her smiling to worry about exercises!
Pray for:
-Insight for the those working with Elizabeth's eating issues: to spot the problems and have wisdom on how to treat them
-Diligence for me as I have more unstructured time to organize
-Good news from her MRI tomorrow morning
-Healing for any damage to her vocal cords or swallowing nerves
-Quiet from the patient next to her (a 24 year old who has a strained relationship with his mother and girlfriend and spent lots of tonight fighting with them)
Matt and Sara
As a result, I got to sit in on The Team's Morning Rounds, and heard some things I like: It's time to stop the anti-fungal medication because her urine has stopped growing fungus. It's time to stop the latest antibiotic because nothing came of the fever she had several days ago. Only 5 more days to go of the other antibiotics that were started over 6 weeks ago. We're all big fans of simplifying. We also discussed some bigger events coming up: Tomorrow morning, she will get sedated again and have a second MRI of her brain. This will hopefully show that the bleeding around her brain is healing and not getting larger while on blood thinners. If she isn't tolerating feeds better by Monday, we'll probably have a longer tube placed to put the feeding directly into her intestine (it uses the hole Elizabeth already has, but the part inside is longer).
Our wonderful pediatrician stopped by to say hello and she began preparing us mentally for the intensive medical needs Elizabeth is likely to have once coming home. It was both exciting and frightening to begin envisioning that day! The Occupational therapist came by to review the exercises to help Elizabeth suck and swallow. We didn't get to practice them though- the photos below were taken during the few minutes she spent awake. We were too enthralled by her smiling to worry about exercises!
Pray for:
-Insight for the those working with Elizabeth's eating issues: to spot the problems and have wisdom on how to treat them
-Diligence for me as I have more unstructured time to organize
-Good news from her MRI tomorrow morning
-Healing for any damage to her vocal cords or swallowing nerves
-Quiet from the patient next to her (a 24 year old who has a strained relationship with his mother and girlfriend and spent lots of tonight fighting with them)
Matt and Sara
Wednesday, November 30, 2005
Elizabeth Archives - Day 47
Today we were visited by the Occupational Therapist who gave me some tools to help Elizabeth relearn to suck and swallow and eventually eat. The suck/swallow part is a few days away but we've got a trajectory now and that is reassuring. All that oral stimulation caused Elizabeth to smile and bear her pearly gums. This caused Elizabeth's mom to interrupt our session and play paparazzi. (pictures attached)
We also got the official recommendation from the GI (gastroenterology) folks who are trying to solve Elizabeth's vomiting issues. They're recommending that her G-tube be pushed further in, to convert it to a GJ tube (see matt's previous distinctions between an NG and an NJ tubes...the same principals apply here). The thought is, if she really does have bad reflux, then sending food directly into her jejunum (sp?) and avoiding putting anything into the stomach is a possible solution. There are some drawbacks (maintenance and cleaning are more difficult, and she wouldn't be able to take anything by mouth for the duration, which is at least a month - making oral stimulation more complicated and breastfeeding an even more distant possibility) but if it works, then Elizabeth could get the much needed nutrition and could hopefully learn that vomiting is not a requirement of eating.
Finally, they had to take another blood draw today because of another Lab error - think back to the error with the sodium to understand how frustrating this is. Please God, no more mistakes that result in more needle sticks.
Along with that, please pray for:
~ complete healing of Elizabeth's vocal chords (her chords may have sustained damage during one of her surgeries and this could very easily explain her GI problems)
~ Elizabeth's ability to re-learn to suck and swallow
~ An explanation for and a solution to the vomiting issues
~ Grace for me as I spend my days at the hospital...I'm learning to know my daughter and how to be a mom in a most unnatural environment...pray for our bond, and that I would have confidence in advocating for Elizabeth and would not be unnecessarily paranoid about causing her more pain by holding her and playing with her.
~ Strength for Matt as he juggles work and being an amazing father and husband.
~ A decrease in Elizabeth's chest tube drainage - to ZERO.
Goodnight and thank you. We are humbled by your faithfulness in supporting us. We are praying for you that YOU would not grow weary in well-doing...We couldn't do this without you.
Love,
M, S & E
We also got the official recommendation from the GI (gastroenterology) folks who are trying to solve Elizabeth's vomiting issues. They're recommending that her G-tube be pushed further in, to convert it to a GJ tube (see matt's previous distinctions between an NG and an NJ tubes...the same principals apply here). The thought is, if she really does have bad reflux, then sending food directly into her jejunum (sp?) and avoiding putting anything into the stomach is a possible solution. There are some drawbacks (maintenance and cleaning are more difficult, and she wouldn't be able to take anything by mouth for the duration, which is at least a month - making oral stimulation more complicated and breastfeeding an even more distant possibility) but if it works, then Elizabeth could get the much needed nutrition and could hopefully learn that vomiting is not a requirement of eating.
Finally, they had to take another blood draw today because of another Lab error - think back to the error with the sodium to understand how frustrating this is. Please God, no more mistakes that result in more needle sticks.
Along with that, please pray for:
~ complete healing of Elizabeth's vocal chords (her chords may have sustained damage during one of her surgeries and this could very easily explain her GI problems)
~ Elizabeth's ability to re-learn to suck and swallow
~ An explanation for and a solution to the vomiting issues
~ Grace for me as I spend my days at the hospital...I'm learning to know my daughter and how to be a mom in a most unnatural environment...pray for our bond, and that I would have confidence in advocating for Elizabeth and would not be unnecessarily paranoid about causing her more pain by holding her and playing with her.
~ Strength for Matt as he juggles work and being an amazing father and husband.
~ A decrease in Elizabeth's chest tube drainage - to ZERO.
Goodnight and thank you. We are humbled by your faithfulness in supporting us. We are praying for you that YOU would not grow weary in well-doing...We couldn't do this without you.
Love,
M, S & E
Tuesday, November 29, 2005
Elizabeth Archives - Day 46
Today, Elizabeth had several tests to determine if there's anything we can do to speed up how her stomach processes food. Once the results are back, we'll write more. They did let Sara try to feed her some sugar water from a bottle today. One thing is clear- her memory for how to suck from a nipple and swallow is even rustier than before. Occupational therapy will be stopping by to try to help teach Elizabeth how to do these.
One of the nurse practitioners caring for Elizabeth shared with Sara what seems to be the long road ahead:
First, Elizabeth has to be on full Portagen feeds for several days (she's poorly tolerating 14 cc/hr and needs to be at 20).
At the same time, if her chest tube output falls below 5cc per day for two days in a row, they'll take the chest tube out (she's putting out 30 now). She could probably go home after this step occurs (barring other unresolved medical issues).
Then, she'll stay on Portagen for at least four more weeks, but more likely 6-8 weeks.
Then, if things are going well, we can transition slowly to breast milk from the Portagen by mixing them.
Pray requests: Pick your favorite step in that chain of events and ask God for his mercy.
Love,
Matt and Sara
One of the nurse practitioners caring for Elizabeth shared with Sara what seems to be the long road ahead:
First, Elizabeth has to be on full Portagen feeds for several days (she's poorly tolerating 14 cc/hr and needs to be at 20).
At the same time, if her chest tube output falls below 5cc per day for two days in a row, they'll take the chest tube out (she's putting out 30 now). She could probably go home after this step occurs (barring other unresolved medical issues).
Then, she'll stay on Portagen for at least four more weeks, but more likely 6-8 weeks.
Then, if things are going well, we can transition slowly to breast milk from the Portagen by mixing them.
Pray requests: Pick your favorite step in that chain of events and ask God for his mercy.
Love,
Matt and Sara
Monday, November 28, 2005
Elizabeth Archives - Day 45
Highlights from Elizabeth's day...
*at 7:00am, I ran up to the hospital before work to say "good morning" to Elizabeth. I learned that she had begun having fevers again overnight, and that her white blood cell count (an indication of infection) was climbing. They sent all of her body fluids to the lab to look for bacteria or fungus and started her on yet another antibiotic. The nurse also reported that overnight attempts to get her Broviak working had failed. Needless to say, I left for work pretty dejected.
*at 11:00am, a minor miracle occurred and the nurse practitioner was able to get the Broviak working again. Unfortunately, they had already placed a peripheral IV in her left hand thereby taking away her favorite hand for sucking. She's resorted to sucking on her IV tube...a sorry replacement to be sure.
*just about every hour thereafter, Elizabeth was visited by a medical student, resident, fellow or attending from a plethora of specialty services. After the long holiday weekend, it seems people are finally eager to get moving and get some issues addressed. The Infectious Disease team dropped by to investigate her fever. Hematology came to investigate why she seems to be forming blood clots at the drop of a hat. Gastroenterology came to see if they could figure out why she vomits so much (finally!). Nutrition weighed in, and another ultrasound of the brain was done. Whew. No wonder Elizabeth dropped off to sleep right after her bath.
Pray that:
- Elizabeth's potential new infection would disappear or that the cause would be quickly found and treated.
- The cause of all of Elizabeth's clotting issues would become apparent and be fixable.
- Continued insight and progress on her feeding issues
- Thanks that after that one day of lots of chest tube output, the output has been decreasing again
- Thanks that Elizabeth gained a little weight over yesterday (she's still looking skinnier to us, though).
Love,
Matt and Sara
*at 7:00am, I ran up to the hospital before work to say "good morning" to Elizabeth. I learned that she had begun having fevers again overnight, and that her white blood cell count (an indication of infection) was climbing. They sent all of her body fluids to the lab to look for bacteria or fungus and started her on yet another antibiotic. The nurse also reported that overnight attempts to get her Broviak working had failed. Needless to say, I left for work pretty dejected.
*at 11:00am, a minor miracle occurred and the nurse practitioner was able to get the Broviak working again. Unfortunately, they had already placed a peripheral IV in her left hand thereby taking away her favorite hand for sucking. She's resorted to sucking on her IV tube...a sorry replacement to be sure.
*just about every hour thereafter, Elizabeth was visited by a medical student, resident, fellow or attending from a plethora of specialty services. After the long holiday weekend, it seems people are finally eager to get moving and get some issues addressed. The Infectious Disease team dropped by to investigate her fever. Hematology came to investigate why she seems to be forming blood clots at the drop of a hat. Gastroenterology came to see if they could figure out why she vomits so much (finally!). Nutrition weighed in, and another ultrasound of the brain was done. Whew. No wonder Elizabeth dropped off to sleep right after her bath.
Pray that:
- Elizabeth's potential new infection would disappear or that the cause would be quickly found and treated.
- The cause of all of Elizabeth's clotting issues would become apparent and be fixable.
- Continued insight and progress on her feeding issues
- Thanks that after that one day of lots of chest tube output, the output has been decreasing again
- Thanks that Elizabeth gained a little weight over yesterday (she's still looking skinnier to us, though).
Love,
Matt and Sara
Sunday, November 27, 2005
Elizabeth Archives - Day 44
Dear Friends and Family,
After a night of restless sleep, Sara and I spent the day at the hospital with Elizabeth. Things were pretty much similar to yesterday (more vomiting, adjusting her feeding rates downward, followed by more vomiting). She seemed slightly more comfortable at a lower rate, but slowing down her feeds was far from the magic cure we'd hoped. Right now, she's at the lowest rate she can be on without supplementary sugar. If they have to decrease any further, she'll have to go back on some IV nutrition, increasing her risk for infection and complicating her IV access issues.
While we're on her IV issues, her Broviak catheter was inserted during surgery 12 days ago, and it is meant to last her months. Not only is it a route for fluids and medications to get it, but it is the route by which the nurses draw her laboratory studies and blood cultures. Tomorrow, Sara is to begin learning how to care for it, so that when we take Elizabeth home, we'll know what to do. I just got off the phone with Sara (who's still holding Elizabeth), and the Broviak just suddenly stopped working. They're going to be working hard to figure out why and try to correct it.
After a long day of design work yesterday, Sara and I are please to announce that a very early version of our website is up and running. If I don't fall asleep, an online version of this update should be available on Elizabeth's page. If things aren't working right, be patient...the website is far from our priority right now.
Please pray that:
-Elizabeth's Broviak catheter begins working again
-Elizabeth's stomach starts working properly
-No MORE complications occur
Love,
Matt and Sara
After a night of restless sleep, Sara and I spent the day at the hospital with Elizabeth. Things were pretty much similar to yesterday (more vomiting, adjusting her feeding rates downward, followed by more vomiting). She seemed slightly more comfortable at a lower rate, but slowing down her feeds was far from the magic cure we'd hoped. Right now, she's at the lowest rate she can be on without supplementary sugar. If they have to decrease any further, she'll have to go back on some IV nutrition, increasing her risk for infection and complicating her IV access issues.
While we're on her IV issues, her Broviak catheter was inserted during surgery 12 days ago, and it is meant to last her months. Not only is it a route for fluids and medications to get it, but it is the route by which the nurses draw her laboratory studies and blood cultures. Tomorrow, Sara is to begin learning how to care for it, so that when we take Elizabeth home, we'll know what to do. I just got off the phone with Sara (who's still holding Elizabeth), and the Broviak just suddenly stopped working. They're going to be working hard to figure out why and try to correct it.
After a long day of design work yesterday, Sara and I are please to announce that a very early version of our website is up and running. If I don't fall asleep, an online version of this update should be available on Elizabeth's page. If things aren't working right, be patient...the website is far from our priority right now.
Please pray that:
-Elizabeth's Broviak catheter begins working again
-Elizabeth's stomach starts working properly
-No MORE complications occur
Love,
Matt and Sara
Friday, November 25, 2005
Elizabeth Archives - Day 42
Elizabeth is six weeks old today! These last 42 days have lasted forever and flown by in an instant at the same time. We would have given her some cake to celebrate, but she's still having trouble keeping her tube feedings down. In addition to delaying her release, she's close enough to throwing up at most times that anything in her mouth (a pacifier, a bottle nipple, her own fingers) can tip her over into vomiting. So we haven't been able to keep her sucking skills up like we were hoping. Whether this will delay her learning how to eat remains to be seen.
Sara mentioned the swelling of Elizabeth's left leg in yesterday's note. It improved with elevation of the foot, but an ultrasound was done to look for clots anyway. Not surprisingly, she still has extensive clots, prompting The Team to reconsider blood thinners to prevent their growth. Unfortunately for poor Elizabeth, they want to give it as a twice daily shot into her belly fat (what little there is of it)! As if her belly hasn't already been through enough...
Elizabeth had to say goodbye today to some of her and her parents' favorite people. Svea (Sara's older sister) flew in from Canada with her new baby Eiley to meet Elizabeth and went home today. My younger sister Julia had been visiting from Germany and left too. We were very sad to see them go. And though she expressed it by sleeping soundly, so was Elizabeth. I'll tell you who Elizabeth would love to see leave- that poor kid in the crib next to hers! He cries ALL the time and loudly. Somehow, she manages to sleep though most of it.
The photo is of the "New Mommy Shuffle" and shows Sara's sister-in-law Tawni holding Svea's Eiley (7 months), Svea holding Elizabeth and Sara holding Tawni's Rachel (4 months). We are praying hard that God allows a re-shoot of that photo somewhere other than the hospital by Christmas.
Our prayer requests are nearly identical to yesterday's:
- Sara is still coughing enough to interfere with her sleep and complicate our time with Elizabeth
- Elizabeth being on blood thinners places her at risk for bleeding (around her brain as before or elsewhere)
- Before moving to take the chest tube out, Elizabeth needs to be getting 20 milliliters of food per hour, but so far vomits with anything over 15
- We'd love to be giving Elizabeth a bottle or pacifier to help her learn how to suck and swallow
- We want her HOME!
- A larger, quieter rooming situation would be nice.
Hope you're enjoying good left-overs,
Matt and Sara
Day 43 (Nov 26) Update:
We finally got moved to our long-awaited quiet, spacious room. The move happened today because the other two infants sharing our space took the only two routes out of Step-down. Little Shaun went home and little Alberto went back to the ICU. Shaun had a similar surgery to Elizabeth's, but without the complications of Turner's and at 14 days old was good enough to leave. Alberto has been in the hospital for all of his 6 months of life and because of a very high fever and trouble breathing had to return to the ICU for the umpteenth time. So our new digs are bittersweet as we think about these two babies. Obviously we're sad that Elizabeth didn't have the quick happy recovery that Shaun had. At the same time we're grateful that Elizabeth is stable and making small steps forward. We're also very aware that tomorrow might bring something new and we struggle not to fear more complications.
Elizabeth continues to be stuck at 15 cc of Portagen per hour. Today, even at that rate, she spent much of the day gagging and threw up multiple times. It's very hard to watch her struggle, and the baby dry-heaves are heart-wrenching. We know she needs food and nutrition but sometimes we just want them to turn off the Portagen altogether.
We haven't mentioned her chest tube output in quite awhile because it's been close to nothing each day since her surgery. Today however, she began putting out more fluid. None of the doctors were around to discuss this change, but we're concerned at what it might mean- mainly that going up on her feedings will prevent her chest tube from coming out and delay her homecoming indefinitely.
So please pray for:
- A reversal in her chest tube output trend back toward drying up.
- A breakthrough in her toleration of tube feedings.
- Stamina for Elizabeth and her parents to persevere as the days continue to drag on.
Love,
Matt and Sara
Sara mentioned the swelling of Elizabeth's left leg in yesterday's note. It improved with elevation of the foot, but an ultrasound was done to look for clots anyway. Not surprisingly, she still has extensive clots, prompting The Team to reconsider blood thinners to prevent their growth. Unfortunately for poor Elizabeth, they want to give it as a twice daily shot into her belly fat (what little there is of it)! As if her belly hasn't already been through enough...
Elizabeth had to say goodbye today to some of her and her parents' favorite people. Svea (Sara's older sister) flew in from Canada with her new baby Eiley to meet Elizabeth and went home today. My younger sister Julia had been visiting from Germany and left too. We were very sad to see them go. And though she expressed it by sleeping soundly, so was Elizabeth. I'll tell you who Elizabeth would love to see leave- that poor kid in the crib next to hers! He cries ALL the time and loudly. Somehow, she manages to sleep though most of it.
The photo is of the "New Mommy Shuffle" and shows Sara's sister-in-law Tawni holding Svea's Eiley (7 months), Svea holding Elizabeth and Sara holding Tawni's Rachel (4 months). We are praying hard that God allows a re-shoot of that photo somewhere other than the hospital by Christmas.
Our prayer requests are nearly identical to yesterday's:
- Sara is still coughing enough to interfere with her sleep and complicate our time with Elizabeth
- Elizabeth being on blood thinners places her at risk for bleeding (around her brain as before or elsewhere)
- Before moving to take the chest tube out, Elizabeth needs to be getting 20 milliliters of food per hour, but so far vomits with anything over 15
- We'd love to be giving Elizabeth a bottle or pacifier to help her learn how to suck and swallow
- We want her HOME!
- A larger, quieter rooming situation would be nice.
Hope you're enjoying good left-overs,
Matt and Sara
Day 43 (Nov 26) Update:
We finally got moved to our long-awaited quiet, spacious room. The move happened today because the other two infants sharing our space took the only two routes out of Step-down. Little Shaun went home and little Alberto went back to the ICU. Shaun had a similar surgery to Elizabeth's, but without the complications of Turner's and at 14 days old was good enough to leave. Alberto has been in the hospital for all of his 6 months of life and because of a very high fever and trouble breathing had to return to the ICU for the umpteenth time. So our new digs are bittersweet as we think about these two babies. Obviously we're sad that Elizabeth didn't have the quick happy recovery that Shaun had. At the same time we're grateful that Elizabeth is stable and making small steps forward. We're also very aware that tomorrow might bring something new and we struggle not to fear more complications.
Elizabeth continues to be stuck at 15 cc of Portagen per hour. Today, even at that rate, she spent much of the day gagging and threw up multiple times. It's very hard to watch her struggle, and the baby dry-heaves are heart-wrenching. We know she needs food and nutrition but sometimes we just want them to turn off the Portagen altogether.
We haven't mentioned her chest tube output in quite awhile because it's been close to nothing each day since her surgery. Today however, she began putting out more fluid. None of the doctors were around to discuss this change, but we're concerned at what it might mean- mainly that going up on her feedings will prevent her chest tube from coming out and delay her homecoming indefinitely.
So please pray for:
- A reversal in her chest tube output trend back toward drying up.
- A breakthrough in her toleration of tube feedings.
- Stamina for Elizabeth and her parents to persevere as the days continue to drag on.
Love,
Matt and Sara
Thursday, November 24, 2005
Elizabeth Archives - Day 41
Today Elizabeth and I spent Thanksgiving together in her room. The hospital provided a nice turkey dinner for the pediatric patients and their families and since I had my baby girl in my arms (I'm still wearing that mask of course) there was no place I'd rather have been. Matt is on-call at the county hospital tonight so we spent our first 24 hours apart in a long time.
Elizabeth had a good day. She's gaining weight - she weighs 8 lbs! She's still not able to tolerate too much food at a time but she's getting better at keeping what she is getting, down. She's up to 14cc's/hour and they're trying to see if they can ease her up to 15 without making her puke too much. They've decided to put her on a medication with fewer side effects for her fungus and she's tolerating it really well. She got that pesky oxygen tube out of her nose and she seemed to appreciate that (plus she's much cuter for her daily photo shoots!). She received visits from both sets of grandparents and bunches of aunts and uncles and even 2 cousins, and wasn't at all overwhelmed with the attention. In fact, she slept through most of it.
Please pray for:
-her left leg has become quite swollen and we're not sure why. It could be another clot, fluid retention or something more serious. Because of the holiday, we'll have to wait till tomorrow to get an ultrasound. Pray that it clears up and that the reason for the swelling becomes clear.
-continue to pray that she'll hold onto her food and that the nurses and the rest of the team will have wisdom about how quickly to keep increasing her feeds. We want her to get enough nutrition, but don't want to force-feed her beyond her tummy's ability to handle it. If we need to proceed more slowly, we want to do just that - regardless of the "goals".
-My cough continues and is wearing me out...and scaring my daughter (Since she has to see a pair of eyes and a big white blob where her mom used to be!)
Hope you enjoyed your Thanksgiving...we're so thankful for each of you.
Love,
Sara (for all of us)
Elizabeth had a good day. She's gaining weight - she weighs 8 lbs! She's still not able to tolerate too much food at a time but she's getting better at keeping what she is getting, down. She's up to 14cc's/hour and they're trying to see if they can ease her up to 15 without making her puke too much. They've decided to put her on a medication with fewer side effects for her fungus and she's tolerating it really well. She got that pesky oxygen tube out of her nose and she seemed to appreciate that (plus she's much cuter for her daily photo shoots!). She received visits from both sets of grandparents and bunches of aunts and uncles and even 2 cousins, and wasn't at all overwhelmed with the attention. In fact, she slept through most of it.
Please pray for:
-her left leg has become quite swollen and we're not sure why. It could be another clot, fluid retention or something more serious. Because of the holiday, we'll have to wait till tomorrow to get an ultrasound. Pray that it clears up and that the reason for the swelling becomes clear.
-continue to pray that she'll hold onto her food and that the nurses and the rest of the team will have wisdom about how quickly to keep increasing her feeds. We want her to get enough nutrition, but don't want to force-feed her beyond her tummy's ability to handle it. If we need to proceed more slowly, we want to do just that - regardless of the "goals".
-My cough continues and is wearing me out...and scaring my daughter (Since she has to see a pair of eyes and a big white blob where her mom used to be!)
Hope you enjoyed your Thanksgiving...we're so thankful for each of you.
Love,
Sara (for all of us)
Wednesday, November 23, 2005
Elizabeth Archives - Day 40
Today marks forty days and forty nights that Elizabeth has been in the World and in the Hospital. We are praying that this marks the end of her "flooding" and that there's a rainbow-promise of continued progress somewhere out there!
Several praises to report today: Sara was deemed "healthy enough" by the ICU staff to let her hold Elizabeth while wearing a mask. Both of my ladies seemed to have recharged their bonding batteries during those sweet hours. Elizabeth has also been tolerating her tube feedings quite well. She's already up to 15 ml per hour (and it seems equal amounts are emerging out the other end- let's just say Portagen by-products are a tad bit more smelly than those from breast milk). Her chest tube drainage continues to be low and an ultrasound of her chest yesterday showed that NO fluid is re-accumulating inside her lung cavity either. The doctors' progress notes have started ending with statements like "chest tube removal anticipated shortly."
As for the fungus in her urine...they gave her a dose of that anti-fungal medication last night and she tolerated it well. The pediatric infectious disease experts saw her today and they agree she should receive a week-long course. They argue that because she only has one kidney (actually it's two kidneys that failed to separate and therefore share connections), if the fungus went up her ureters and damaged the kidney, she'd require a kidney transplant. Given that my matching blood type makes me the likely kidney donor, I quickly dropped my objections. (Of course I'd gladly donate if necessary)
I also went back to "work" today. I say "work" because I really didn't get much done and spent most of my time showing pictures of Elizabeth to anyone with eyeballs! Actually, people came to me...seems everyone knows about our ordeal and wanted to express their sympathies and support. It was nice. Maybe I've gotten everyone caught up to speed and can get my job done more efficiently from here on out.
Since tomorrow is Thanksgiving, here are some things to rejoice with us about:
- Elizabeth herself- even with the ordeal of the last 6 weeks, we wouldn't trade her for anything.
- Elizabeth's progress- there have been times we've wondered if she'd survive and have come so far from that.
- God's faithfulness- though we haven't always understood His ways, He has given us the mercy and grace to survive this season
- Family and friends' faithfulness- here's where you thank God for yourself. Through your prayers, notes, emails, presents and meals, each of you has been a tool of God's mercy to us.
Continue praying for Sara's cough, Elizabeth's progress and my adjustment to working again. Sara and I already miss spending 24/7 at each others' side.
Love you all,
Matt and Sara
Several praises to report today: Sara was deemed "healthy enough" by the ICU staff to let her hold Elizabeth while wearing a mask. Both of my ladies seemed to have recharged their bonding batteries during those sweet hours. Elizabeth has also been tolerating her tube feedings quite well. She's already up to 15 ml per hour (and it seems equal amounts are emerging out the other end- let's just say Portagen by-products are a tad bit more smelly than those from breast milk). Her chest tube drainage continues to be low and an ultrasound of her chest yesterday showed that NO fluid is re-accumulating inside her lung cavity either. The doctors' progress notes have started ending with statements like "chest tube removal anticipated shortly."
As for the fungus in her urine...they gave her a dose of that anti-fungal medication last night and she tolerated it well. The pediatric infectious disease experts saw her today and they agree she should receive a week-long course. They argue that because she only has one kidney (actually it's two kidneys that failed to separate and therefore share connections), if the fungus went up her ureters and damaged the kidney, she'd require a kidney transplant. Given that my matching blood type makes me the likely kidney donor, I quickly dropped my objections. (Of course I'd gladly donate if necessary)
I also went back to "work" today. I say "work" because I really didn't get much done and spent most of my time showing pictures of Elizabeth to anyone with eyeballs! Actually, people came to me...seems everyone knows about our ordeal and wanted to express their sympathies and support. It was nice. Maybe I've gotten everyone caught up to speed and can get my job done more efficiently from here on out.
Since tomorrow is Thanksgiving, here are some things to rejoice with us about:
- Elizabeth herself- even with the ordeal of the last 6 weeks, we wouldn't trade her for anything.
- Elizabeth's progress- there have been times we've wondered if she'd survive and have come so far from that.
- God's faithfulness- though we haven't always understood His ways, He has given us the mercy and grace to survive this season
- Family and friends' faithfulness- here's where you thank God for yourself. Through your prayers, notes, emails, presents and meals, each of you has been a tool of God's mercy to us.
Continue praying for Sara's cough, Elizabeth's progress and my adjustment to working again. Sara and I already miss spending 24/7 at each others' side.
Love you all,
Matt and Sara
Tuesday, November 22, 2005
Elizabeth Archives - Day 39
As the pictures show, I was able to hold Elizabeth for quite awhile today for the first time in a week. It took her a few minutes to get used to the sensation, but then she slept like a...well, baby. She continues to need oxygen through tubes in her nose, but why she is requiring this isn't clear. Her feeding through the tube in her stomach is going reasonably well. She had some more vomiting in response to one of the antibiotics, which has kept them from advancing her feedings further.
Elizabeth has started growing a species of fungus in her urine, and unlike my subject line, it's no laughing matter. This commonly happens in hospitalized adults and we never treat it unless it gets into the blood stream. There is absolutely NO evidence that the fungus has gotten into Elizabeth's blood stream at this point, but if it gets there, it can be very, very serious. To keep it from getting to the blood stream, The Team wants to start an anti-fungal medications called amphotericin B (nicknamed "ampho-terrible" because of its side-effects). Given the side-effects, we would obviously like to avoid needing this medication (it makes most people feel miserable, and can cause whole-body shaking, drops in potassium and kidney failure).
Sara is still battling her cough and with me returning to work tomorrow, we're struggling over how much time Sara should spend at the hospital.
Please pray for:
1. Wisdom for whether amphotericin B should be given at all, and if it should, that Elizabeth would be protected from its side-effects.
2. That God would place limits on the fungus and prevent it from spreading anywhere else.
3. That Elizabeth's lung function would improve, whatever is causing it to remain suboptimal
4. That Elizabeth's stomach and intestines would speed up in their processing of food and tolerate medications better
5. That Sara's cough would completely and quickly resolve to allow her to be with Elizabeth full time
6. That Sara would have resolve to continue pumping despite forecasts of another 6 to 8 weeks before breastfeeding
7. Increased energy and grace as I return to work yet again.
8. That I would be protected from Sara's cold.
Thank you all again for your prayers and encouraging emails, notes and cards. We are storing them all away and hope to someday put them together to show Elizabeth how our community rallied around our family!
Matt and Sara
Elizabeth has started growing a species of fungus in her urine, and unlike my subject line, it's no laughing matter. This commonly happens in hospitalized adults and we never treat it unless it gets into the blood stream. There is absolutely NO evidence that the fungus has gotten into Elizabeth's blood stream at this point, but if it gets there, it can be very, very serious. To keep it from getting to the blood stream, The Team wants to start an anti-fungal medications called amphotericin B (nicknamed "ampho-terrible" because of its side-effects). Given the side-effects, we would obviously like to avoid needing this medication (it makes most people feel miserable, and can cause whole-body shaking, drops in potassium and kidney failure).
Sara is still battling her cough and with me returning to work tomorrow, we're struggling over how much time Sara should spend at the hospital.
Please pray for:
1. Wisdom for whether amphotericin B should be given at all, and if it should, that Elizabeth would be protected from its side-effects.
2. That God would place limits on the fungus and prevent it from spreading anywhere else.
3. That Elizabeth's lung function would improve, whatever is causing it to remain suboptimal
4. That Elizabeth's stomach and intestines would speed up in their processing of food and tolerate medications better
5. That Sara's cough would completely and quickly resolve to allow her to be with Elizabeth full time
6. That Sara would have resolve to continue pumping despite forecasts of another 6 to 8 weeks before breastfeeding
7. Increased energy and grace as I return to work yet again.
8. That I would be protected from Sara's cold.
Thank you all again for your prayers and encouraging emails, notes and cards. We are storing them all away and hope to someday put them together to show Elizabeth how our community rallied around our family!
Matt and Sara
Monday, November 21, 2005
Elizabeth Archives - Day 38
Have you ever watched some people bowling? After they release their ball, they put their bodies through all sorts of contortions, somehow hoping to "help" the ball find its way to the pins. Sitting at Elizabeth's bedside is something like that. When she's coughing, you find yourself clearing your throat in assistance. When she's breathing rapidly, you find yourself also hyperventilating. When she's squirming, you find yourself feeling cooped up and uncomfortable too. And mostly, you find yourself all knotted up, tense, and after an hour or two, completely spent. I'm starting to think that going back to work Wednesday will be a much needed rest!
Elizabeth continues to do well. She is now almost at her goal feeding rate, with only three minor puking events (politely termed "emesis" in medical lingo). They pulled out her scalp IV and the arterial line that was in her femoral artery, all in preparation for moving her to "Step-down" tomorrow. Once again, we're going to miss our private room! Pray that we get one of the larger shared rooms and the bed furthest away from the sink.
Sara however, continues to cough. She has been very disciplined and only visits Elizabeth for a few minutes, wearing a mask and avoiding getting in close. It is very hard for her Mommy's heart to be separated from Elizabeth, so keep her spirits and health in your prayers.
Lastly, Sara and I have registered "msharms.com" as our new family website. Later this week (energy and tech savvy not withstanding), we're hoping to get it up and running and will soon be switching our photo posts and updates there. We're telling everyone this to light a fire under us to actually get it done. But we'll let you know officially when the switch has been made.
Sincerely,
Matt
Elizabeth continues to do well. She is now almost at her goal feeding rate, with only three minor puking events (politely termed "emesis" in medical lingo). They pulled out her scalp IV and the arterial line that was in her femoral artery, all in preparation for moving her to "Step-down" tomorrow. Once again, we're going to miss our private room! Pray that we get one of the larger shared rooms and the bed furthest away from the sink.
Sara however, continues to cough. She has been very disciplined and only visits Elizabeth for a few minutes, wearing a mask and avoiding getting in close. It is very hard for her Mommy's heart to be separated from Elizabeth, so keep her spirits and health in your prayers.
Lastly, Sara and I have registered "msharms.com" as our new family website. Later this week (energy and tech savvy not withstanding), we're hoping to get it up and running and will soon be switching our photo posts and updates there. We're telling everyone this to light a fire under us to actually get it done. But we'll let you know officially when the switch has been made.
Sincerely,
Matt
Sunday, November 20, 2005
Elizabeth Archives - Day 37
Elizabeth continued to make progress today. She was able to start and tolerate feedings through her G-tube. She's getting 1 tsp per hour already, which is triple what she was able to take when feeding through a bottle. And even better, it's staying down! Staff and friends who haven't seen Elizabeth in several days are stunned by how different/better she looks, especially when it comes to the reduction in her swelling.
Continue praying for:
1. Sara's cold- it's hanging on and keeping her from spending more than a few minutes with Elizabeth each day.
2. Continuing tolerance of increasing amounts of food without an increase in chest tube fluid output.
3. We have started dreaming of having Elizabeth home for Christmas time. We don't know whether this is realistic or not, but we want to put it out there as a specific request. We can't think of a better Christmas present anywhere.
Thanks again,
Matt and Sara
Continue praying for:
1. Sara's cold- it's hanging on and keeping her from spending more than a few minutes with Elizabeth each day.
2. Continuing tolerance of increasing amounts of food without an increase in chest tube fluid output.
3. We have started dreaming of having Elizabeth home for Christmas time. We don't know whether this is realistic or not, but we want to put it out there as a specific request. We can't think of a better Christmas present anywhere.
Thanks again,
Matt and Sara
Saturday, November 19, 2005
Elizabeth Archives - Day 36
If you're anything like Sara and me, you probably opened the photo attachment first AND are now reading the email. So you already know that Elizabeth got off the breathing machine today and lost her tape-mustache! Not only are we relieved to see her breathing on her own and free of the uncomfortable feeling of the tube down her throat, but we love being able to see her face again. And though it's considerably chubbier than before surgery, we still find extremely adorable. Once again, her crying is almost silent due to swelling of her vocal cords from the breathing tube, but we're confident it'll be much louder in a few days.
You also might be wondering what that big mass of tape and tubes on the side of her head is. Well, it's yet another scalp IV. Her third! Each of those three have been placed by the SAME nurse, who apparently feels magnetically attracted to Elizabeth's head. And it required shaving off some more of her hair- just as it was starting to grow back after the last assault on her noggin. If she had a bald spot on the top of her head, she'd look exactly like Friar Tuck. But really, it's nice to be in an emotional place where the biggest fish we're frying is the loss of some hair!
Now let's talk body fluids. Happily, Elizabeth's chest tube continues to drain very small amounts of fluid. And she continues to pee off all that additional fluid. Now that she's off the pain meds and more awake, she really notices those wet diapers. She'll be calmly looking around and suddenly burst into a crying/coughing fit. Our first thought is "Something inside her broke. Did her chest tube or G-tube fall out? Is she in excruciating pain? Where's the nurse for some more morphine?" After all the panic, she's just wet again (about once every 45 minutes). Because all that fluid is leaving her body, her abdomen is shrinking...down 4 cm since yesterday and 8 cm since her abdominal surgery. She has also started having bowel movements again- a good sign that her intestines are waking up and functioning after the stunning of the surgery and pain medications. The Team is hoping to start feeding her small amounts tomorrow or Monday.
Sara made brief (masked, just to be safe) appearance today and we gave Elizabeth a limited bath (arms, legs and top of her head since everything else seems to be covered with tape, gauze or tubing). It was nice to move toward reinstating our nightly rituals with Elizabeth.
Continue praying for:
- Resolution of Elizabeth's abdominal swelling and chest tube drainage
- Good healing for all of her incisions and her G-tube track
- Protection from infections of any incision and IV line
- Sara's rapid healing from her cold
- Successful initiation of feeding in the near future.
Thankfully,
Matt and Sara
You also might be wondering what that big mass of tape and tubes on the side of her head is. Well, it's yet another scalp IV. Her third! Each of those three have been placed by the SAME nurse, who apparently feels magnetically attracted to Elizabeth's head. And it required shaving off some more of her hair- just as it was starting to grow back after the last assault on her noggin. If she had a bald spot on the top of her head, she'd look exactly like Friar Tuck. But really, it's nice to be in an emotional place where the biggest fish we're frying is the loss of some hair!
Now let's talk body fluids. Happily, Elizabeth's chest tube continues to drain very small amounts of fluid. And she continues to pee off all that additional fluid. Now that she's off the pain meds and more awake, she really notices those wet diapers. She'll be calmly looking around and suddenly burst into a crying/coughing fit. Our first thought is "Something inside her broke. Did her chest tube or G-tube fall out? Is she in excruciating pain? Where's the nurse for some more morphine?" After all the panic, she's just wet again (about once every 45 minutes). Because all that fluid is leaving her body, her abdomen is shrinking...down 4 cm since yesterday and 8 cm since her abdominal surgery. She has also started having bowel movements again- a good sign that her intestines are waking up and functioning after the stunning of the surgery and pain medications. The Team is hoping to start feeding her small amounts tomorrow or Monday.
Sara made brief (masked, just to be safe) appearance today and we gave Elizabeth a limited bath (arms, legs and top of her head since everything else seems to be covered with tape, gauze or tubing). It was nice to move toward reinstating our nightly rituals with Elizabeth.
Continue praying for:
- Resolution of Elizabeth's abdominal swelling and chest tube drainage
- Good healing for all of her incisions and her G-tube track
- Protection from infections of any incision and IV line
- Sara's rapid healing from her cold
- Successful initiation of feeding in the near future.
Thankfully,
Matt and Sara
Friday, November 18, 2005
Elizabeth Archives - Day 35
Dear Friends and Family,
We hope that yesterday's email silence didn't cause you any additional anxiety. Sara has been battling a cold and I was just too tired. Nothing had changed much, so we took the night off.
Since emerging from her abdominal surgery on Wed, Elizabeth's condition has been "stable." She remains on the breathing machine and her swollen abdomen and legs have not gotten any larger. She needed another blood transfusion overnight, but otherwise her labs are looking good. Today was about decreasing the amount of morphine she receives each hour, allowing her to wake up and begin breathing on her own. She's seems to be tolerating this process well, and in the next day or two, they hope to be able to remove her breathing tube altogether. They also tried to start feeding her small amounts through her new G-tube, but the pressure in her abdomen is still too high and forced the formula back up the tube!
With all of the new surgeries, lines, tubes and issues, it's easy to overlook the one huge area of progress- Elizabeth's chest tube output has been miniscule since the surgery! So it would seem that the surgeons' goal was accomplished and now we're dealing the consequences of diverting all that fluid.
In other news (What? There's something other than Elizabeth happening on this planet?): Sara has been wrestling with a cold for two days now. Because Elizabeth has low infection-fighting proteins and cells, Sara has not wanted to risk exposing her to this virus. She has been hanging out at home, longingly watching the video footage and photos I've been taking. Obviously, she's missing Elizabeth terribly and it's been hard for her not to be with me at the bedside.
Returning to the list method of prayer requests:
-Pray that Elizabeth's veins and lymphatics take up the slack and help drain the excess fluid causing her to be so swollen.
-Pray that there would be no further complications that would slow down her progress!
-Pray that Sara recovers quickly to resume her daily presence with Elizabeth, and for the grace to be at home while unable to visit.
-Pray that Matt's return to work Tuesday would be smooth and that God would continue to give him wisdom about going/staying back, AND that his department would continue to be as graciously flexible as they've been to this point.
Thank you for your faithful prayers.
Matt and Sara
PS: Several of you have wondered how our daughter could have been through so much and still manage to look so good for her photos! The quick answer is, she's the cutest little girl in the whole world. But the real answer is, we're only sending out the cutest ones. Rest assured, we've photographically documented the toll her surgeries and procedures have taken on her little body, in case she wants to look back as she grows up. But we hesitate to mass-mail these more graphic photos, partially in deference to the queasy among you, and partially out of an attempt to preserve a bit of Elizabeth's privacy. Now, if the text of our emails seem dire in comparison to the photos, you'll understand why.
We hope that yesterday's email silence didn't cause you any additional anxiety. Sara has been battling a cold and I was just too tired. Nothing had changed much, so we took the night off.
Since emerging from her abdominal surgery on Wed, Elizabeth's condition has been "stable." She remains on the breathing machine and her swollen abdomen and legs have not gotten any larger. She needed another blood transfusion overnight, but otherwise her labs are looking good. Today was about decreasing the amount of morphine she receives each hour, allowing her to wake up and begin breathing on her own. She's seems to be tolerating this process well, and in the next day or two, they hope to be able to remove her breathing tube altogether. They also tried to start feeding her small amounts through her new G-tube, but the pressure in her abdomen is still too high and forced the formula back up the tube!
With all of the new surgeries, lines, tubes and issues, it's easy to overlook the one huge area of progress- Elizabeth's chest tube output has been miniscule since the surgery! So it would seem that the surgeons' goal was accomplished and now we're dealing the consequences of diverting all that fluid.
In other news (What? There's something other than Elizabeth happening on this planet?): Sara has been wrestling with a cold for two days now. Because Elizabeth has low infection-fighting proteins and cells, Sara has not wanted to risk exposing her to this virus. She has been hanging out at home, longingly watching the video footage and photos I've been taking. Obviously, she's missing Elizabeth terribly and it's been hard for her not to be with me at the bedside.
Returning to the list method of prayer requests:
-Pray that Elizabeth's veins and lymphatics take up the slack and help drain the excess fluid causing her to be so swollen.
-Pray that there would be no further complications that would slow down her progress!
-Pray that Sara recovers quickly to resume her daily presence with Elizabeth, and for the grace to be at home while unable to visit.
-Pray that Matt's return to work Tuesday would be smooth and that God would continue to give him wisdom about going/staying back, AND that his department would continue to be as graciously flexible as they've been to this point.
Thank you for your faithful prayers.
Matt and Sara
PS: Several of you have wondered how our daughter could have been through so much and still manage to look so good for her photos! The quick answer is, she's the cutest little girl in the whole world. But the real answer is, we're only sending out the cutest ones. Rest assured, we've photographically documented the toll her surgeries and procedures have taken on her little body, in case she wants to look back as she grows up. But we hesitate to mass-mail these more graphic photos, partially in deference to the queasy among you, and partially out of an attempt to preserve a bit of Elizabeth's privacy. Now, if the text of our emails seem dire in comparison to the photos, you'll understand why.
Wednesday, November 16, 2005
Elizabeth Archives - Day 33
In yesterday's update, I said that the surgeons suggested that we would have to "wait and see" the results of yesterday's surgeries. That "waiting and seeing" became very scary this morning when Elizabeth's abdomen started swelling quickly. Initial x-rays and an ultrasound could not clearly figure out what was causing the swelling. Some pockets of fluid were present and looked like "bowel contents," suggesting that placement of the G-tube might have perforated some adjacent small bowel (causing it to leak stool out into the abdominal cavity). If that had happened and wasn't fixed immediately, Elizabeth's life would be in serious danger. The only way to know for sure required another trip to the operating room for yet another surgery.
So at 3pm, Elizabeth went for an "exploratory laparatomy." This means they gave her a big incision just above her belly botton, opened up her abdomen and had a look inside. They found lots of fluid, but thankfully, no evidence of leaking bowels. The intestines looked fine as well. At this point, people are just speculating on where this fluid is coming from. However, the leading probability is that it is lymphatic drainage. Presumably, by tying off the thoracic duct yesterday, they have kept the fluid from leaking out around her lung, but now it is backing up into the space surrounding her intestines. The good news is there was no injured intestines. The bad news is, it's likely to be lymph fluid.
What this means for Elizabeth in longterm is anyone's guess. They are hoping that her intact veins and lymphatic channels will "pick up the slack" and start draining the fluid back to the heart. It they don't, a drain may have to be placed in her abdomen, which would leave us in the same spot we were with her chest tube. It's also unlikely that she can come off the breathing machine until this gets resolved- the distention of her abdomen pushes up on her lungs and would make it very difficult for her to breath on her own. Additionally, all these surgeries have left painful incisions and internal inflammation which are requiring large doses of morphine to control.
Sara and I are feeling somewhat demoralized right now. The ICU staff now walk by our room with expressions of pity on their faces. The surgeon today said, "I'm so sorry that nothing seems to have gone right for your daughter this last month." Our nurse turned to another RN and said, "This little one just can't seem to catch a break." We're feeling very similarly, wondering why God hasn't stepped in to relieve some of Elizabeth's and our pain. We still believe that He still could, and would ask you to join us in praying for a breakthrough in her recovery.
Thank you,
Matt and Sara
Additional Thoughts From Sara:
The last 33 days have been the darkest that Matt and I have faced. The circumstances have tested the very foundations of our faith...Does prayer work? Why would God allow something like this? What does God want from us in the middle of this? No doubt, similar questions have been asked through tears by people in similar and worse situations throughout the centuries. In our weakest moments, we have simply shut down our feelings....letting go of our need to know the answers, reconciling ourselves to the reality that we never may have the understanding that we seek. But in our strongest moments, we remember that our Bible says "We wrestle not against flesh and blood". We are not just fighting a battle for Elizabeth's life here in the flesh, but the enemy of Elizabeth's soul is battling it out over her in the spiritual realm. I don't think it is a coincidence that the two most recent down-turns in Elizabeth's progress have occurred, in one case, the day after we sent out an email full of praise reports, and in the other, after we asked dear friends to worship God with us in spite of our pain. The enemy is not happy that we still give God praise in the middle of this.
But as Matt and I determined, we have no other choice. Either God's word is true when it says He'll never leave or forsake us, or it's a lie. On a note card taped to our desk, Matt has written a Psalm he decided to memorize over a year ago...Psalm 146:3-6 "Do not put your trust in princes, in mortal men who cannot save...Blessed is he whose help is the God of Jacob, whose hope is in the Lord his God - the maker of heaven and earth, the sea and everything in them - the Lord remains faithful forever." We believe God remains faithful forever. He loves Elizabeth and His plans for us and for her are good, because His word says so. So while we don't understand the reasons behind our current struggle and Elizabeth's pain, we choose to trust that God cannot lie. We write this, not so much to convince you of these things, but to "speak" out loud, what we know is true...to remind ourselves. God is faithful, God is sovereign, God will win...so even in the absence of understanding, and the answers we desire, we will continue to wait, and pray, and fight, and believe. Thank you for standing with us.
Love,
Sara & Matt
So at 3pm, Elizabeth went for an "exploratory laparatomy." This means they gave her a big incision just above her belly botton, opened up her abdomen and had a look inside. They found lots of fluid, but thankfully, no evidence of leaking bowels. The intestines looked fine as well. At this point, people are just speculating on where this fluid is coming from. However, the leading probability is that it is lymphatic drainage. Presumably, by tying off the thoracic duct yesterday, they have kept the fluid from leaking out around her lung, but now it is backing up into the space surrounding her intestines. The good news is there was no injured intestines. The bad news is, it's likely to be lymph fluid.
What this means for Elizabeth in longterm is anyone's guess. They are hoping that her intact veins and lymphatic channels will "pick up the slack" and start draining the fluid back to the heart. It they don't, a drain may have to be placed in her abdomen, which would leave us in the same spot we were with her chest tube. It's also unlikely that she can come off the breathing machine until this gets resolved- the distention of her abdomen pushes up on her lungs and would make it very difficult for her to breath on her own. Additionally, all these surgeries have left painful incisions and internal inflammation which are requiring large doses of morphine to control.
Sara and I are feeling somewhat demoralized right now. The ICU staff now walk by our room with expressions of pity on their faces. The surgeon today said, "I'm so sorry that nothing seems to have gone right for your daughter this last month." Our nurse turned to another RN and said, "This little one just can't seem to catch a break." We're feeling very similarly, wondering why God hasn't stepped in to relieve some of Elizabeth's and our pain. We still believe that He still could, and would ask you to join us in praying for a breakthrough in her recovery.
Thank you,
Matt and Sara
Additional Thoughts From Sara:
The last 33 days have been the darkest that Matt and I have faced. The circumstances have tested the very foundations of our faith...Does prayer work? Why would God allow something like this? What does God want from us in the middle of this? No doubt, similar questions have been asked through tears by people in similar and worse situations throughout the centuries. In our weakest moments, we have simply shut down our feelings....letting go of our need to know the answers, reconciling ourselves to the reality that we never may have the understanding that we seek. But in our strongest moments, we remember that our Bible says "We wrestle not against flesh and blood". We are not just fighting a battle for Elizabeth's life here in the flesh, but the enemy of Elizabeth's soul is battling it out over her in the spiritual realm. I don't think it is a coincidence that the two most recent down-turns in Elizabeth's progress have occurred, in one case, the day after we sent out an email full of praise reports, and in the other, after we asked dear friends to worship God with us in spite of our pain. The enemy is not happy that we still give God praise in the middle of this.
But as Matt and I determined, we have no other choice. Either God's word is true when it says He'll never leave or forsake us, or it's a lie. On a note card taped to our desk, Matt has written a Psalm he decided to memorize over a year ago...Psalm 146:3-6 "Do not put your trust in princes, in mortal men who cannot save...Blessed is he whose help is the God of Jacob, whose hope is in the Lord his God - the maker of heaven and earth, the sea and everything in them - the Lord remains faithful forever." We believe God remains faithful forever. He loves Elizabeth and His plans for us and for her are good, because His word says so. So while we don't understand the reasons behind our current struggle and Elizabeth's pain, we choose to trust that God cannot lie. We write this, not so much to convince you of these things, but to "speak" out loud, what we know is true...to remind ourselves. God is faithful, God is sovereign, God will win...so even in the absence of understanding, and the answers we desire, we will continue to wait, and pray, and fight, and believe. Thank you for standing with us.
Love,
Sara & Matt
Tuesday, November 15, 2005
Elizabeth Archives - Day 32
Briefly, before Sara and I collapse into our bed, Elizabeth's surgery went without complications today. Before surgery though, we all had a very rough night...her chest tube obstructed and fluid began compressing her lungs again, requiring the urgent placement of a new chest tube. Her last remaining IV also "blew," leaking fluid into her tissues and causing her quite a bit of pain.
All of that aside, the surgeons said they "accomplished what they'd hoped" and now it's "wait and see time." In other words, they were able to find the thoracic duct and tie it off, and thought they'd done an "elegant" job of scarring down the lining of the chest wall. It will be several days before we know whether this re-operation has had the desired effect on her lymphatic drainage. Pray hard for this! We don't want her to have undergone this risky and painful procedure only to have it fail.
She also had a new long-term IV placed and a G-tube as we'd described earlier. These also went well. Lastly, something she received in the OR gave her a generalized allergic reaction, characterized by swelling, hives and skin redness. So right now, she's looking a little blotchy, but alot like after her first surgery.
We're relieved that the surgery is over and that she survived. Now we're praying for that chest tube fluid, and that she'll get off the ventilator very quickly.
Thanks,
Matt and Sara
All of that aside, the surgeons said they "accomplished what they'd hoped" and now it's "wait and see time." In other words, they were able to find the thoracic duct and tie it off, and thought they'd done an "elegant" job of scarring down the lining of the chest wall. It will be several days before we know whether this re-operation has had the desired effect on her lymphatic drainage. Pray hard for this! We don't want her to have undergone this risky and painful procedure only to have it fail.
She also had a new long-term IV placed and a G-tube as we'd described earlier. These also went well. Lastly, something she received in the OR gave her a generalized allergic reaction, characterized by swelling, hives and skin redness. So right now, she's looking a little blotchy, but alot like after her first surgery.
We're relieved that the surgery is over and that she survived. Now we're praying for that chest tube fluid, and that she'll get off the ventilator very quickly.
Thanks,
Matt and Sara
Monday, November 14, 2005
Elizabeth Archives - Day 31
Dear Friends and Family,
Since Matt is back at work, this email will be a little less medically savvy, but I trust God knows and can interpret the details, so please pray with as much specificity as you can gather from below. (I've put some explanations in italics which you can skip if you need to save time)
Unfortunately, they were not able to save Elizabeth's PICC line. While they did manage to get another peripheral IV in her foot, this is not sufficient for the necessary fluids, medications, and blood draws. As a result they've decided to put in a more "long term" option, called a Broviac. A Broviac catheter is a temporary line placed in a vein. (in this case, it'll go into her upper right chest) It is used to draw blood and administer medications, fluids, and blood products. The advantage to this type of catheter is that it can fully replace all the PICC Lines, Peripheral IVs and Fem Lines that we've had so much trouble finding, and keeping free of infection. It is typically more stable than the alternatives and has a lower risk of infection and clotting off. This is something that Elizabeth should be able to keep as long as she needs it (weeks or months) even if she comes home.
In addition, and perhaps a reason that they've decided to take the plunge on the Broviac, The surgeons have decided that her chest tube drainage is still too much and is not sufficiently decreasing, so tomorrow at noon, they will do surgery to address it. While "in there" they will do 2 things -
They will tie off the thoracic duct (the possible source of some of the drainage) and then they will do a Pleurodesis. Pleurodesis is a procedure that causes the membranes around the lung to stick together and prevents the buildup of fluid in the space between the membranes. This procedure is done in cases of severe recurrent pleural effusion (also called Chylothorax - or what we've been referring to as "chest tube drainage"), to prevent the re-accumulation of fluid. In pleurodesis, an irritant (such as Bleomycin, Tetracycline, or talc powder) is instilled inside the space between the pleura (the two layers of tissue lining the lungs) in order to create inflammation which tacks the two pleura together. This procedure thereby obliterates the space between the pleura and prevents the re-accumulation of fluid.
Since she is going to have to be on anesthesia, she will be re-intubated (given a breathing tube) and while they're there, they also want to give her a blood transfusion that she's been needing for a few days.
Finally, they've decided that her feeding is not progressing fast enough, so they are going to insert a "G-Tube" (a feeding tube directly into her stomach). While it seems like a miserable solution to me as her mother, since we've already started "oral feeds" she can continue those and just get supplemental nutrition from the G-tube. This avoids another round of NG tube induced vomiting, as well as takes the pressure off us to try to get her to eat more at every feeding. We can use the feeding times as opportunities to bond with and nurture our baby and not stress out about every CC, knowing she'll get what she needs. The G-tube can also "go home with her" so that's a plus.
Matt and I have mixed feelings...we're relieved that "something is happening", but weary of our daughter undergoing yet more procedures. The bottom line is, the sooner that she gets the drainage stopped and can get on "full feeds" (even if it's a combo of oral and g-tube feeds) the sooner she can come home and we can deal with all the rest of the issues from here.
Praise God for a wonderful cardiologist who is warm and caring and took great time to explain all the details to me (since my regular translator has a day-job now) :( Praise God for my sister-in law who is here keeping me company through the days in matt's absence...we'll get through this.
Please pray as you feel led. We want Elizabeth to come home as soon as possible. We want God to heal her. We want her to not feel anymore pain. Her little body needs a break. We need hope and strength and grace for all that lies ahead.
Thank you for walking through this with us,
Love,
Sara (for both of us)
Since Matt is back at work, this email will be a little less medically savvy, but I trust God knows and can interpret the details, so please pray with as much specificity as you can gather from below. (I've put some explanations in italics which you can skip if you need to save time)
Unfortunately, they were not able to save Elizabeth's PICC line. While they did manage to get another peripheral IV in her foot, this is not sufficient for the necessary fluids, medications, and blood draws. As a result they've decided to put in a more "long term" option, called a Broviac. A Broviac catheter is a temporary line placed in a vein. (in this case, it'll go into her upper right chest) It is used to draw blood and administer medications, fluids, and blood products. The advantage to this type of catheter is that it can fully replace all the PICC Lines, Peripheral IVs and Fem Lines that we've had so much trouble finding, and keeping free of infection. It is typically more stable than the alternatives and has a lower risk of infection and clotting off. This is something that Elizabeth should be able to keep as long as she needs it (weeks or months) even if she comes home.
In addition, and perhaps a reason that they've decided to take the plunge on the Broviac, The surgeons have decided that her chest tube drainage is still too much and is not sufficiently decreasing, so tomorrow at noon, they will do surgery to address it. While "in there" they will do 2 things -
They will tie off the thoracic duct (the possible source of some of the drainage) and then they will do a Pleurodesis. Pleurodesis is a procedure that causes the membranes around the lung to stick together and prevents the buildup of fluid in the space between the membranes. This procedure is done in cases of severe recurrent pleural effusion (also called Chylothorax - or what we've been referring to as "chest tube drainage"), to prevent the re-accumulation of fluid. In pleurodesis, an irritant (such as Bleomycin, Tetracycline, or talc powder) is instilled inside the space between the pleura (the two layers of tissue lining the lungs) in order to create inflammation which tacks the two pleura together. This procedure thereby obliterates the space between the pleura and prevents the re-accumulation of fluid.
Since she is going to have to be on anesthesia, she will be re-intubated (given a breathing tube) and while they're there, they also want to give her a blood transfusion that she's been needing for a few days.
Finally, they've decided that her feeding is not progressing fast enough, so they are going to insert a "G-Tube" (a feeding tube directly into her stomach). While it seems like a miserable solution to me as her mother, since we've already started "oral feeds" she can continue those and just get supplemental nutrition from the G-tube. This avoids another round of NG tube induced vomiting, as well as takes the pressure off us to try to get her to eat more at every feeding. We can use the feeding times as opportunities to bond with and nurture our baby and not stress out about every CC, knowing she'll get what she needs. The G-tube can also "go home with her" so that's a plus.
Matt and I have mixed feelings...we're relieved that "something is happening", but weary of our daughter undergoing yet more procedures. The bottom line is, the sooner that she gets the drainage stopped and can get on "full feeds" (even if it's a combo of oral and g-tube feeds) the sooner she can come home and we can deal with all the rest of the issues from here.
Praise God for a wonderful cardiologist who is warm and caring and took great time to explain all the details to me (since my regular translator has a day-job now) :( Praise God for my sister-in law who is here keeping me company through the days in matt's absence...we'll get through this.
Please pray as you feel led. We want Elizabeth to come home as soon as possible. We want God to heal her. We want her to not feel anymore pain. Her little body needs a break. We need hope and strength and grace for all that lies ahead.
Thank you for walking through this with us,
Love,
Sara (for both of us)
Sunday, November 13, 2005
Elizabeth Archives - Day 30
We'll start with an urgent request tonight-
Elizabeth's PICC line is her only IV access currently. It is somewhat surgically placed and runs through a vein from her arm almost to her heart. With all the medications and nutrition she's receiving through the PICC line, it's really important to her care. Tonight, it suddenly stopped working. It might be clotted off with blood or with crystals of her medications. If they can't get it unclogged, it will be removed and she'll have to another one placed. Please pray that it will open back up and spare her yet another procedure.
In other news-
She's gaining weight, but we expect the new team of doctors taking over her care to begin approaching us tomorrow about retrying the feeding tube. Some have even started mentioning PEG tubes.
She is also very anemic and though everyone is trying to spare her another blood transfusion, I'm guessing she'll get one tomorrow.
So again, we're grateful for a weekend of calm, but feel like the coming week might hold some important turning points and decisions. Pray that we'll know what to do when the time(s) come(s).
Love,
Matt and Sara
Elizabeth's PICC line is her only IV access currently. It is somewhat surgically placed and runs through a vein from her arm almost to her heart. With all the medications and nutrition she's receiving through the PICC line, it's really important to her care. Tonight, it suddenly stopped working. It might be clotted off with blood or with crystals of her medications. If they can't get it unclogged, it will be removed and she'll have to another one placed. Please pray that it will open back up and spare her yet another procedure.
In other news-
She's gaining weight, but we expect the new team of doctors taking over her care to begin approaching us tomorrow about retrying the feeding tube. Some have even started mentioning PEG tubes.
She is also very anemic and though everyone is trying to spare her another blood transfusion, I'm guessing she'll get one tomorrow.
So again, we're grateful for a weekend of calm, but feel like the coming week might hold some important turning points and decisions. Pray that we'll know what to do when the time(s) come(s).
Love,
Matt and Sara
Saturday, November 12, 2005
Elizabeth Archives - Day 29
We're thanking God for a weekend that continues to be calm. Tonight, the whole Harms clan (my parents and all of my sibs and sibs-in-law) gathered in Elizabeth's room to pray together for her continuing needs and for Sara and I as I head back to work on Monday.
Specific requests you can lift up with us include:
-Thanks for such a close knit group of family and friends to support us through this time (give yourselves a big hug for us).
-Thanks that Elizabeth's sodium has normalized. Turns out, the pharmacy making her sodium replacement fluid had been misinterpreting a doctor's "11" as a "4" and only giving her 4 units each day when she really needed 11. Oops. Pray that Elizabeth will be protected from further human error. One small bummer- because it has taken them so long to get her sodium normal, she has required many more blood draws than she should have needed. Now her blood count is low again and she will likely get another blood transfusion soon.
-Thanks that the bleeding around her brain has remained stable.
-Elizabeth's eating is still way "under goal." Though she gets more down each time, she still has frequent vomitting, which seems to get worse the better she sucks and the more she takes in. Watching her eat, hoping she's taken in more than last time and then waiting on pins and needles to see if it will stay down is emotionally and physically taxing (we find ourselves with our mouths stuck in a sucking position and swallowing to try and help her out). Today I even tried saying "Elizabeth...this is your father. Do NOT throw is back up. Do you hear me?" Surprisingly, it wasn't very effective :-)
-Chest tube drainage continues unchanged. The attending physician started hinting that we might need to begin reconsidering surgical interventions in the near future.
-I'm going back to work on Monday. Pray that Sara and I will figure out "how to be" with this change in our daily routine. Pray that I won't be jealous of Sara's ability to be with Elizabeth all day, and that Sara won't be resentful of my absence. We both need lots of grace during this transition.
Thanks again,
Matt and Sara
Specific requests you can lift up with us include:
-Thanks for such a close knit group of family and friends to support us through this time (give yourselves a big hug for us).
-Thanks that Elizabeth's sodium has normalized. Turns out, the pharmacy making her sodium replacement fluid had been misinterpreting a doctor's "11" as a "4" and only giving her 4 units each day when she really needed 11. Oops. Pray that Elizabeth will be protected from further human error. One small bummer- because it has taken them so long to get her sodium normal, she has required many more blood draws than she should have needed. Now her blood count is low again and she will likely get another blood transfusion soon.
-Thanks that the bleeding around her brain has remained stable.
-Elizabeth's eating is still way "under goal." Though she gets more down each time, she still has frequent vomitting, which seems to get worse the better she sucks and the more she takes in. Watching her eat, hoping she's taken in more than last time and then waiting on pins and needles to see if it will stay down is emotionally and physically taxing (we find ourselves with our mouths stuck in a sucking position and swallowing to try and help her out). Today I even tried saying "Elizabeth...this is your father. Do NOT throw is back up. Do you hear me?" Surprisingly, it wasn't very effective :-)
-Chest tube drainage continues unchanged. The attending physician started hinting that we might need to begin reconsidering surgical interventions in the near future.
-I'm going back to work on Monday. Pray that Sara and I will figure out "how to be" with this change in our daily routine. Pray that I won't be jealous of Sara's ability to be with Elizabeth all day, and that Sara won't be resentful of my absence. We both need lots of grace during this transition.
Thanks again,
Matt and Sara
Friday, November 11, 2005
Elizabeth Archives - Day 28
Today was delightfully uneventful in Elizabeth's medical care. She's still not eating as much as she needs to, but hasn't spit-up what she has eaten. She needs ongoing prayer for her sodium, eating, chest tube output and the blood around her brain.
Her day was not boring however. She met her uncle Dan and aunt Tia for the first time (they flew down from Seattle to do so). And at her Grandmother Suzie's insistence, she got outfitted with her first hair ribbons. Apparently, the infant hair accessories are a subject of intense debate among the pediatric nursing staff. They fall squarely into the "Pro-Bow" or "No-Bow" camps. Until this morning, I was definitely leaning "No-Bow," but my sweet little girl has won me over!
Thanks for sticking this out with us,
Matt and Sara
Her day was not boring however. She met her uncle Dan and aunt Tia for the first time (they flew down from Seattle to do so). And at her Grandmother Suzie's insistence, she got outfitted with her first hair ribbons. Apparently, the infant hair accessories are a subject of intense debate among the pediatric nursing staff. They fall squarely into the "Pro-Bow" or "No-Bow" camps. Until this morning, I was definitely leaning "No-Bow," but my sweet little girl has won me over!
Thanks for sticking this out with us,
Matt and Sara
Thursday, November 10, 2005
Elizabeth Archives - Day 27
Good news only to report today!
Looking back retrospectively at a brain ultrasound performed when Elizabeth was 10 days old, the radiologists could now see the bleeding around the brain. Why is it good news that people missed something that should have been seen fourteen days ago? Well, it means the blood has been there for a long time, and the longer it has been there, the less likely it is to grow in size.
An ultrasound of her veins was also done today to see if progress had been made on her venous clots. Only problem is, they couldn't find them! Gone! Everyone is scratching their heads about the disappearing clots. Except for us. We're praising God for this direct answer to prayer. As a result, they were able to stop the blood thinner today, which should help minimize the risk of her brain bleeding again.
Elizabeth was finally seen by a doctor who specializes in electrolyte problems to get to the bottom of her sodium issues. The short answer is, the MDs in the ICU had some math issues, giving them the wrong answer for how much sodium they needed to be giving her. Everyone expects that she will now get back to a normal sodium with the appropriate amount of replacement. Additionally, once her chest tube output resolves, the sodium problems should disappear as well.
Elizabeth has also been eating better. She's now taking up to 2 teaspoons per feeding (not a lot, but double from several days ago). The nutritionist is threatening that, if she's not up to 6 teaspoons eight times per day by Monday, we'll have to try the feeding tubes again. Focus some prayers on this!
Thank you again for your prayers.
Matt
Looking back retrospectively at a brain ultrasound performed when Elizabeth was 10 days old, the radiologists could now see the bleeding around the brain. Why is it good news that people missed something that should have been seen fourteen days ago? Well, it means the blood has been there for a long time, and the longer it has been there, the less likely it is to grow in size.
An ultrasound of her veins was also done today to see if progress had been made on her venous clots. Only problem is, they couldn't find them! Gone! Everyone is scratching their heads about the disappearing clots. Except for us. We're praising God for this direct answer to prayer. As a result, they were able to stop the blood thinner today, which should help minimize the risk of her brain bleeding again.
Elizabeth was finally seen by a doctor who specializes in electrolyte problems to get to the bottom of her sodium issues. The short answer is, the MDs in the ICU had some math issues, giving them the wrong answer for how much sodium they needed to be giving her. Everyone expects that she will now get back to a normal sodium with the appropriate amount of replacement. Additionally, once her chest tube output resolves, the sodium problems should disappear as well.
Elizabeth has also been eating better. She's now taking up to 2 teaspoons per feeding (not a lot, but double from several days ago). The nutritionist is threatening that, if she's not up to 6 teaspoons eight times per day by Monday, we'll have to try the feeding tubes again. Focus some prayers on this!
Thank you again for your prayers.
Matt
Wednesday, November 9, 2005
Elizabeth Archives - Day 26
It's late at night and we're tired after a long day, but we need your prayers urgently. As Elizabeth's great-grandparents (Mae and Everett) were just completing a wonderful visit, I learned that the MRI results were back from yesterday. They showed several disheartening findings. First, and most acutely problematic, is an area of bleeding around the back of Elizabeth's brain. Normally, the treatment would to boost up Elizabeth's clotting ability by quickly stopping the blood thinners she is on. Unfortunately, if the blood thinner is stopped, her venous blood clot could extend to the liver or kidneys, causing them to fail and possibly need transplantation. If the blood thinner is left going to prevent the clot from worsening, it could cause the bleeding around the brain to continue. If it worsens, the accumulating blood could press on the brainstem causing further damage. Obviously, the doctors need lots of wisdom on how to react in this Catch-22. And Elizabeth needs prayer to keep either of these dire outcomes from occurring.
The MRI also confirmed that Elizabeth's cerebellum did not form properly. We knew from her prenatal ultrasounds that the lower part of her cerebellum was under-developed. Now is is clear that the portions of the cerebellum that did form are "dysplastic," meaning formed inappropriately. Even worse, the adjacent brainstem, another region called the corpus callosum, and part of the right-sided cortex are also abnormally formed. These areas of abnormal development put Elizabeth at high risk for two problems- seizures and/or developmental and cognitive deficits. At this point, no one is willing to wager how, or how much, Elizabeth will be affected.
Needless to say, Sara and I are feeling pretty demoralized by this news. Just yesterday, Sara commented that she was beginning to take things one day at a time, and was feeling less overwhelmed by the highs and lows of this journey. Things had just started to feel like we were making progress (see the hopeful tone of yesterday's update), and now this. We need God to preserve our hope, strengthen our faith and insulate us from fear.
Finally, as my month of paternity time draws to an end on Monday, Sara and I are really trying to decide what would be best for us. This bad news makes it difficult to consider leaving my daughter's side, and I'm not sure whether I'd be able to focus on work like I need to. Legally, I could demand more time off, but his would cause a staff shortage at all the hospitals at which I am scheduled and delay my graduating from residency. We really need to know God's will & his timing regarding my return to work.
Thank you for riding the up's and down's of this roller coaster with us,
Matt and Sara
The MRI also confirmed that Elizabeth's cerebellum did not form properly. We knew from her prenatal ultrasounds that the lower part of her cerebellum was under-developed. Now is is clear that the portions of the cerebellum that did form are "dysplastic," meaning formed inappropriately. Even worse, the adjacent brainstem, another region called the corpus callosum, and part of the right-sided cortex are also abnormally formed. These areas of abnormal development put Elizabeth at high risk for two problems- seizures and/or developmental and cognitive deficits. At this point, no one is willing to wager how, or how much, Elizabeth will be affected.
Needless to say, Sara and I are feeling pretty demoralized by this news. Just yesterday, Sara commented that she was beginning to take things one day at a time, and was feeling less overwhelmed by the highs and lows of this journey. Things had just started to feel like we were making progress (see the hopeful tone of yesterday's update), and now this. We need God to preserve our hope, strengthen our faith and insulate us from fear.
Finally, as my month of paternity time draws to an end on Monday, Sara and I are really trying to decide what would be best for us. This bad news makes it difficult to consider leaving my daughter's side, and I'm not sure whether I'd be able to focus on work like I need to. Legally, I could demand more time off, but his would cause a staff shortage at all the hospitals at which I am scheduled and delay my graduating from residency. We really need to know God's will & his timing regarding my return to work.
Thank you for riding the up's and down's of this roller coaster with us,
Matt and Sara
Tuesday, November 8, 2005
Elizabeth Archives - Day 25
Today has been a day to pause and give praise for the progress that Elizabeth has made:
First and foremost, Elizabeth left the ICU for a new room on the "Step Down" unit. "Step down" refers to the level of care she requires. We're totally ecstatic over being out of the ICU, if only for the progress it represents. We will miss the nurses of the ICU with whom we've developed a special bond, and we'll definitely miss the private room! Elizabeth's new digs are about half the size of her ICU room, and it's just a curtain away from the other 2 babies who share the room. As a result, it's much noisier, with three times the monitors, alarms and crying babies. But we won't get kicked out when babies undergo surgeries in the ICU, and we'll get to participate more in her day-to-day care.
We also want to catalog some of the things we've asked you pray for and how they're progressing (so that you can join us in praising God):
1. Her voice: It has continued to strengthen and now sounds as loud as a newborn cry.
2. Her infection: Her white blood cell count has normalized and her blood cultures have not grown any bacteria for a week. She is still prone to infection from her loss of infection-fighting cells and proteins, but doesn't have an infection now.
3. Her sodium: with proper replacement, it has finally starting to trend up appropriately. The current theory is that three weeks of sodium losses through her chest tube fluid finally caught up with her.
4. Her eye movements: The flutter we were seeing earlier has definitely reduced in frequency. She had an MRI of the brain today that should tell us if everything is OK there.
5. Her throwing up: since we've stopped trying to put in feeding tubes, she's not been throwing up at all.
6. Her sucking: she still frequently coughs on the liquids she tries, but she's getting better at the sucking and swallowing reflex. She is still only able to eat one teaspoon at a time, but getting better at it. This is still a major area of prayer as she needs to be eating 12 teaspoons at each feeding to be able to grow.
7. IV access: she currently has only one IV, which can sometimes be risky. They are having to stop some medications when it's time to give others. But they are making due, sparing Elizabeth get stuck yet again. Pray that this continues to be the case.
8. Her chest tube: Although the amount of fluid draining out has not budged from around 200 cc/day, it hasn't increased. Additionally, her remaining chest tube is still in place and hasn't threatened a repeat of the "falling out" incident.
So thanks for your prayers. Keep them coming.
Hopefully you'll be as tickled by the enclosed photo of Elizabeth "smiling" as we were!
Love,
Matt and Sara
First and foremost, Elizabeth left the ICU for a new room on the "Step Down" unit. "Step down" refers to the level of care she requires. We're totally ecstatic over being out of the ICU, if only for the progress it represents. We will miss the nurses of the ICU with whom we've developed a special bond, and we'll definitely miss the private room! Elizabeth's new digs are about half the size of her ICU room, and it's just a curtain away from the other 2 babies who share the room. As a result, it's much noisier, with three times the monitors, alarms and crying babies. But we won't get kicked out when babies undergo surgeries in the ICU, and we'll get to participate more in her day-to-day care.
We also want to catalog some of the things we've asked you pray for and how they're progressing (so that you can join us in praising God):
1. Her voice: It has continued to strengthen and now sounds as loud as a newborn cry.
2. Her infection: Her white blood cell count has normalized and her blood cultures have not grown any bacteria for a week. She is still prone to infection from her loss of infection-fighting cells and proteins, but doesn't have an infection now.
3. Her sodium: with proper replacement, it has finally starting to trend up appropriately. The current theory is that three weeks of sodium losses through her chest tube fluid finally caught up with her.
4. Her eye movements: The flutter we were seeing earlier has definitely reduced in frequency. She had an MRI of the brain today that should tell us if everything is OK there.
5. Her throwing up: since we've stopped trying to put in feeding tubes, she's not been throwing up at all.
6. Her sucking: she still frequently coughs on the liquids she tries, but she's getting better at the sucking and swallowing reflex. She is still only able to eat one teaspoon at a time, but getting better at it. This is still a major area of prayer as she needs to be eating 12 teaspoons at each feeding to be able to grow.
7. IV access: she currently has only one IV, which can sometimes be risky. They are having to stop some medications when it's time to give others. But they are making due, sparing Elizabeth get stuck yet again. Pray that this continues to be the case.
8. Her chest tube: Although the amount of fluid draining out has not budged from around 200 cc/day, it hasn't increased. Additionally, her remaining chest tube is still in place and hasn't threatened a repeat of the "falling out" incident.
So thanks for your prayers. Keep them coming.
Hopefully you'll be as tickled by the enclosed photo of Elizabeth "smiling" as we were!
Love,
Matt and Sara
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