Elizabeth Archives - December 2005

Day 54 (Dec 07) Update:
Hello again,

As you'll see from the set of photos we've sent tonight, the common theme is "Elizabeth smiling!" Despite everything she's been through, it appears that deep down, she's just a happy baby- living up to her Joy-ful middle name.

Maybe she's smiling because her vomiting has been stable despite going up on her feeding rate. Besides less emesis, she's seems to be less gaggy and more comfortable throughout the day. As a result, she has tons of energy to interact, carry out her occupational therapy "exercises," and just grin away. Or perhaps, it's because today's chest tube output has been very low so far (after several days of increased amounts). It might also be the cute clothes her mother has started putting her in!

We are grateful to God that our prayer request list is simplifying:

-Pray for decreasing chest tube output. Right now, that is the single barrier to having Elizabeth home.
-It may seem premature, but start praying for our transition to life at home with a medically complicated infant.
-As we've started to dream again about her coming home, pray that our hearts will be protected against disappointment, while still being free to hope.

We love you all,
Matt and Sara

Day 55 (Dec 08) Update:
As the week grows older, these seem to be getting briefer.

We're still in the Two steps forward, one step backward phase of things.

The Two Steps Forward: First, Elizabeth is handling her goal tube feedings quite well. She had a small puke this morning, but otherwise kept everything down all day. She also was rooting around and smacking her lips all night. Sara and I snuck her a nipple filled with water and she went-to-town, managing to swallow some before she started coughing. She seemed super thirsty, which in not surprising, considering how dehydrated they're keeping her. They are using diuretics to drain off all extra fluid from her body, hoping that will reduce her chest tube output. Second, her chest tube output has been very low today. So far, there has not even been enough to suck out of the collection bottle to measure!

Now the One Step Backward: Elizabeth continues to have those mysterious fevers. Today, they were higher than in the last several days, leaving her somewhat listless at their peaks. Her white blood cell count (a marker of infection) began climbing as well. No one has any idea where the infection could be hiding, but our confidence in The Team has been shaken a bit by their lack of creativity. I've been suggesting several possibilities for several days and they are just now agreeing to investigate them. Foremost among the possibilities is an infection of the fluid coming from her chest, which I recommend they run tests on Sunday (when there was lots of fluid to send to the lab). Of course, now that they want to run the tests, the fluid amount is too small to send!


Our prayer requests tonight include some specific praises:

1. Thanksgiving for the dramatically reduced chest tube output and continued prayer that it would stay low.
2. Thanksgiving for the continued tolerance of feeds and prayer as we try to introduce some oral Portagen.
3. Prayer that the fevers would stop or a cause be found and treated, and that Elizabeth would not get sick in the interim.
4. Tomorrow is the eight week mark of Elizabeth's hospital stay. It's an anniversary we had hoped to avoid and ask that you would pray specifically for our stamina and perseverance.

Thanks,
Matt and Sara

Day 56 (Dec 09) Update:Hello friends and family,

Like her cousins, she's a natural cheese for the camera. When she's all dolled-up in adorable clothes and hair-bows, it's hard, even for us, to believe how much the last 56 days have held. Can she really have undergone three trips to the operating room, 11 (!!!!!) incisions, countless IV's, lab draws and hundreds of doses of medications? How has she stayed so cute!? And so full of joy!?

Other exciting events from today:

Based on our reports of Elizabeth's championship-winning but covert sucking last night, the occupational therapist came to confirm our observation. It's official- Elizabeth can suck. Now, she just has to coordinate that part with the swallowing part...something we'll work on starting Monday. Because Elizabeth has tolerated 17cc/hr of Portagen, they've decided to increase her goal to 18 cc/hr. She did well on that amount today, vomiting only once.

Her chest tube output has also continued to be miniscule. If the low output continues through the weekend, there's talk of taking out the chest tube Sunday or Monday. At our superstitious worst, we hesitate even to hope. At our faith-filled best, we are thrilled at the prospect!


Prayers on our hearts right now:
- More time spent at our "faith-filled best"
- Continued lack of fevers and lack of chest tube drainage
- Sleep, rest, energy, grace, strength
- That our times at the hospital would coincide with Elizabeth's awake times

Thanks for your 56 days of support.
Matt, Sara and Elizabeth

Day 57 (Dec 10) Update:Good News Friends and Family,

We walked into our daughter's room this morning to find the X-ray technician in the middle of shooting an X-ray of Elizabeth. The nurse was assisting him and so we waited outside for them to finish. As the curtain was pulled back, the nurse called out, "Are you ready to hold your tubeless daughter?" I didn't even catch it. Sara thought she was joking. But we entered the room to see that indeed, her chest tube had been removed! Feel free to stop reading, let out a delighted shout and then continue. Because her output had been so low over the last two days, the surgeons decided to take advantage of this "window" and remove it. We are beside ourselves with gratefulness.

In addition to ridding her of the pesky chest tube, they also turned her from pale yellow back to pink with a blood transfusion! Her heart rate came right down to where it should be, and the added fluid helped to fill out her features. She hasn't had any fever in over 48 hours and she only vomited a tiny bit on one occasion today.

Coming home has suddenly started to look real, AND close. Someone even ventured a guess at early in the week. For that to be true, and we want it to be, several things have to happen:

1. Elizabeth's blood counts and electrolytes have to be stable.
2. Her chest X-rays have to show NO re-accumulation of fluid.
3. She has to be tolerating the feeds and gaining some weight.
4. All the arrangements for home equipment, home nursing visits and parent training have to be made
5. No more fevers

Put those items on your prayer lists, and add one more:

6. Elizabeth's parents need peace and preparation for the coming transition. We're both beginning to feel the weight of being completely responsible for our delightful daughter!

Love you all,
Matt and Sara

Day 58 (Dec 11) Update:Hello again,

Today was another day of progress. Elizabeth showed absolutely NO signs of fluid re-accumulation! And she continued tolerating her increased Portagen. She spent enough of the day awake and smiling to provide plenty of photos, and we even tried out some modified "tummy time." The feeding tube isn't mature enough to put her directly on her belly yet. But soon it will be, allowing us to begin working on her head control and combating the flat head/mullet problem.
In this photo, you'll notice Elizabeth's new boxing gloves! When babies are stressed, they clench their fists with thumbs curled under their fingers. If left this way, the thumb joints won't develop properly. So her new gloves are not a fashion accessory, but actually designed to keep her thumb out to help prevent this problem.

And they'll help her hitch-hike home...the Doc on call tonight said "I can't think of a medical reason not to have you home tomorrow. But we may need a day or so more to arrange your medical equipment and home nursing. Of course, a new attending starts tomorrow and she may feel differently..." So it would seem that we're VERY close to going home.

2 Simple Prayer Requests:
- That nothing would come up that would stand in the way of Elizabeth coming home early this week!
- That Sara and I would be at peace with the transition to having our daughter home!

Love you all,
Matt and Sara

Day 59 (Dec 12) Update:
Matt and I got to the hospital early this morning, hoping to catch the team on rounds. It worked, and we were able to talk with them about the possibility of Elizabeth's discharge. The team agrees that they should keep an eye on her for a few more days just to be sure she doesn't start to re-accumulate fluid. Because Elizabeth is known as "the baby who has had every possible complication" we don't blame them for being cautious. The last thing we want is an early discharge that results in a return visit. The good news is, it still looks like this week is a realistic possibility! Her chest x-ray shows no re-accumulation, even though they've decreased her diuretics, the blood transfusion did its trick and Elizabeth is pink and her vitals and oxygen level are good. We continue to ask God to protect her from further complications.

As we wait for her homecoming, things have been far from mundane. It's amazing how small things take on such value when you've been denied them. You fight so hard for every bit of progress...a "vomit free shift", a day without a fever, a developmental step like fixating her eyes, a clear vocal coo. Each step feels like such a gift now. Praise God from whom all blessings flow.

Today we took Elizabeth's first walk, free of machines and monitors. Tears came as I walked m our little one out of our bay and down the hall to explore...what else, the fish tank in the 7th floor waiting room! We then walked to an outdoor sitting area on the Pediatric floor and Elizabeth got her very first breath of "pure" outside air. (we realize we live in a city) We were ecstatic. We look forward to many long walks through Golden Gate Park and down the isle at church to introduce her to all her friends.

Our afternoon walk was made possible by a transition in Elizabeth's feeding schedule. Despite a rather large vomit mid-morning, we decided to go ahead and try to move forward in her feeding regimen. Because her stomach has not been able to tolerate large volumes of food, they spread her nutrition out over 24 hours using a pump, to provide a "continuous feed" (thus the 18cc/hr. goal). The next step in developing her digestive system is to stretch out her tummy so it will hold larger amounts and learn to digest meals. When working with tubes, this is called a "bolus feed". You hold her nutrition for 3 hours (that's when the walk took place), and then give her the equivalent amount more quickly (in her case, since she's still new at this - they spread it over an hour). So today she got her first bolus feed - 55cc's delivered over an hour! And she didn't throw up! Praise God. It's amazing how much joy we feel when our little one keeps her food down.

Another gift - today our Occupational Therapist gave me reason to hope that Elizabeth has not lost her suck and will most likely regain her ability to swallow as her vocal chord paralysis heals. Swallowing may be in her future. We continue to hope.

As we enjoyed dinner cooked by dear friends last night, we shared how blessed we feel to have been surrounded by such wonderful family and friends during this season. That, we believe, is one of the miracles already from Elizabeth's life. A friend of a friend wrote words that best express it - to describe her own experience of suffering this year.

"I remember hearing growing up that God never gives you anything more than you can handle. I do not believe my definition of that is true anymore, for if it were, who would need God? I believe that my entire family has had a year of more than we could ever possibly handle or imagine. And I think we are all just starting to realize what a toll it has been. But, that is where the healing begins. That is where you realize you were never meant to live life on your own...you were not meant to suffer alone...or to feel alone.

Over the past year and a half, I have felt my loneliest, the deepest sadness, and the most painful grief and fear in my life. I have also experienced the greatest joy, the most unconditional love, and the most heartfelt gratitude. Life does give you more than you can handle, and that is when we are brought to our knees before God. God is there to help carry the burden, and He provides us with people around us to help do the same."

Her words express what is in our hearts. Our hearts are full to overflowing.
With Love,
Sara & Matt

Day 60 (Dec 13) Update:
Today we finally got a "tentative timeline" from the team. As of now, Elizabeth is set to be discharged to home on Thursday! As you can imagine, our hearts are overwhelmed with joy...and a little bit of panic as we realize that we will be solely responsible for her care from here on out! I've warned the nurses that I'm thinking about spending my afternoons with Elizabeth in the ICU waiting room and flagging down someone to check her vitals every once in a while. They laugh...I think they think I'm joking.

In another step forward, Elizabeth had 4 bolus feeds today. She tolerated the first three brilliantly...no puking, minimal discomfort and she even showed signs of hunger prior to each of her feeds! This is encouraging since she hasn't done much "feeling hungry" since she was born...we pray that the next step is increased volume and eventually the incorporation of oral feeding.

The pictures we've attached show some of the highlights of our day...The first one is Elizabeth responding to the praying bear she has in her crib. The bear says "Now I lay me down to sleep, I pray the Lord my soul to keep, Angels watch me through the night (at which point Elizabeth predictably breaks into a grin) "Till I wake with morning light, Amen." (By now Elizabeth is bearing her gums and practically giggling with delight)...I think we've got a prayer warrior on our hands.

The 2nd documents a visit to the ICU from a few of the 49ers. So far we've had visits from Snoopy, Santa, Dancers from the Nutcracker Ballet and now Football players...and Elizabeth has slept through each one!!


The last one is just plain cute...so I had to include it.

Your prayers for no further complications are having their effect. Elizabeth's fevers have not returned. No one knows why they were there in the first place, but everyone seems happy that they're gone. She has also shown no signs of re-accumulation of lymphatic fluid, but will have a confirmatory chest x-ray tomorrow. Tomorrow we'll meet with the folks who will be involved in transitioning Elizabeth home, as well as working with her as an out-patient. As you can tell from the tone of our emails, we're beginning to get excited about how our family will change with Elizabeth's homecoming. We have no idea what to expect, but are praying and trusting that God will give us the grace we need to walk this next leg of the journey.

Thank you for journeying with us.
Love,
Sara & Matt

Day 61 (Dec 14) Update:
How to describe today? Hmmm. I think "stressful" about sums it up. As each person involved in Elizabeth's care began making the final arrangements for discharge, things seemed a little chaotic. Early in the day, it became apparent that her Broviak removal should take place in the operating room...which wouldn't be available until Friday, pushing discharge to Saturday. Then, for some reason, the surgeons abruptly decided they could do it in her room today. They showed up and tried to start before Elizabeth had been given any pain medication...and from there, things are a blur. There was a lot of arguing between the nurses and the surgeons, a lot of painful tears from our little girl, but they got it out. Whether it should have been pulled outside of the OR, and how much pain medication she should have gotten is still a matter of hot debate, but it's over. So the discharge for tomorrow is still on.

Tomorrow's list of things to learn and arrange is truly daunting! How to change the G-tube, how to mix up and store the Portagen, how to run the pump for the Portagen, how to change her dressings, when and where to show up for all her follow-up appointments and the list goes on. To boot, I'll be working the whole morning, compressing everything into the afternoon. It's do-able, but on this end, it seems intimidating!

With all the activity today, we only took a few photos. Tomorrow, I'm sure we'll take a million and more than make up for this photo-less email.

Pray that:

- Elizabeth is comfortable tonight and that her Broviak site and immunization sites aren't painful
- Sara and I can absorb all the information and learning we need to feel comfortable at home
- Our trip home and first hours with Elizabeth home would go smoothly (we'd like them to be pure MAGIC, but are trying to keep our expectations realistic)

Hoping we can fall asleep tonight,
Matt and Sara
Day 62 (Dec 15) Update:
God is Good! Simply put, Elizabeth came home today.
Day 63 (Dec 16) Update:
Hello all you compulsive email checkers! To prevent anyone from thinking we might have returned to the hospital, here's a brief note to let you know that: we're still at home and things are going well. Things have been SUPER BUSY, but tomorrow, we will find a break in the action long enough to bring you some details...and the latest photos of course.

Until then, pray that we would all settle into a routine...a sane one.

Love,
Matt, Sara and Elizabeth

Day 64 (Dec 17) Update:
We've left you "detail-free" since the night before we came home. Below, you're going to find all the details you could ever want, and possibly more. For those of you who are short on time, here's the abridged version: Although Elizabeth is 2 months old, Sara and I are brand new parents. And while we're free of the fatigue of birthing, everything is complicated by our baby's medical problems.
Keeping paging down...the much awaited photo gallery is at the bottom of this page.
Thursday:
Thursday was the day we brought Elizabeth home. The steps required before actually leaving the hospital were numerous. Elizabeth had to pass her "car seat challenge" by sitting strapped in for several hours without having her heart rate go up or her blood oxygen go down. She slept her way to success. While she was snoozing, Sara learned how to change Elizabeth's G-tube and how to replace it if it ever falls out. She also met with the occupational therapist and the discharge coordinator to go over all the appointments we'll have in the coming weeks: pediatrics, cardiology, gastroenterology, occupational therapy, nutrition, speech therapy etc. After my morning lectures, I joined Sara in time to learn about Elizabeth's home feeding pump (I should have asked more questions and paid closer attention- see below).

And then, it was time to pack up. We were amazed at how much stuff had accumulated during our two month stay. The syringes, tape, gauze, diapers, breast-pump supplies, blankets, stuffed animals and cards filled two large garbage bags! After I carted them home and returned to the hospital, we dolled Elizabeth up for a goodbye tour of the place. Having seen our rocky hospital course first-hand, the nurses and staff were so excited for us to be leaving.

We walked to the elevators, pressed "down," waited for one for what seemed like an eternity, climbed in and never looked back.

We filmed the brief walk home, noting many Elizabeth firsts: being truly outdoors, seeing the sunlight, watching the trolley care rumble by, seeing a homeless man and his cart, etc. I'm sure that the huge smiles on our faces told the story to everyone we passed. At the end of our two block journey, I carried Elizabeth across our threshold for the first time. Overcome by emotion and tears, Sara and I prayed right in our foyer and thanked God for allowing Elizabeth to survive to come home and for seeing us through to this day. Tears dried, we gave Elizabeth a tour of her new home. While we worked to unpack, set up the equipment and organize all the paraphernalia, the fact that our apartment tops out at 800 square feet was suddenly quite apparent.

The rest of the afternoon and evening were almost better than we'd dreamed. Elizabeth was delightfully cheerful and awake, and she tolerated all of her feedings with gusto. The very first feeding demonstrated how little I learned during our pump demo session. The end result of my mistake was Elizabeth receiving 30 minutes worth of food in 30 seconds! But she promptly went to sleep in a "food coma." Later in the evening, we let her watch her first TV and even managed to feed her some Portagen from a bottle. Even once we'd put her on her overnight continuous feeds, she seemed hungry, smacking her lips a ton. In fact, she didn't settle down until we'd given her another 1/2 bolus! The trip home had really peaked her appetite.

After that additional feeding, she went to sleep quite easily and only awoke briefly during the night. Sara and I, on the other hand, could hardly close our eyes...every little burp, cough, sneeze and change in her breathing had us up and investigating to make sure she was OK. I am usually a very deep sleeper (Sara gets up, out of bed and pumps right next to me without causing me to stir), but my new responsibilities have me sleeping quite lightly.


Friday:

Our first complete day home was an introduction to the intensity of our new life. While I headed off to work, Sara held down the fort, managing a very complicated cycle of bolus feeding, medication administration and pumping. I'm not sure she had time to use the bathroom, much less accomplish all the things she'd hoped! Our home nurse visited us for the first time and was very impressed with how well organized we had things (funny, considering we feel like we're flying by the seat of our pants). She had some great suggestions to help things run more smoothly (and after Sat, we're hoping she has many more where those came from). Based on Elizabeth's voracious eating on Thursday, we decided to increase her nightly continuous feeding rate from 18cc/hr to 20cc/hr. With that increased rate, Elizabeth slept more soundly, and so did we. Having spent the day listening to the range of Elizabeth noises, we were able to tune more of them out.


Saturday:

It's a good thing we slept more last night as today was a rough one. Probably because we'd increased her feeding rate last night, Elizabeth spent much of the day vomiting. The rest of the time was spent alternating between short bursts of restless sleep, crying and brief periods of uncontrolled smiling! A combination of severe gastric reflux (heart burn) and bad gas from the Portagen seems to be the problem. Watching over her and trying to soothe her was as tiring as doing the same in the ICU...only there are no nurses to take over when you want to go home and sleep! Additionally, all the things you would do for gas are not possible with Elizabeth (gripe water might interact with her medications, patting her back makes her vomit and rubbing her belly is nearly impossible with her scars and G-tube). So we opened all the fun toys she'd received, put them together and let her try them out.


Prayer Requests:

- STAMINA, STAMINA, AND MORE STAMINA
- That we would be patient with Elizabeth's recovery
- That we would be patient with each other and ourselves as we figure out this "Parenting" thing
- That we would have wisdom in raising her, medicating her and changing her feedings
- That her stomach would return to its "Thursday" self quickly

We love you and covet your continued support during this next phase!
Matt, Sara and Elizabeth
Day 65 (Dec 18) Update:
Hello again,

Last night, we prayed for what seems like the zillionth time since we started down this path, that God's mercies would be new every morning, Today, His mercy was evident.

Elizabeth tolerated her feedings much better today and seemed less uncomfortable between her naps. We "discovered" a different tube to hook up to her G-tube between feedings which allows the gas to escape better. With her stomach less full of air, she was able to concentrate on napping and playing. Her naps were long enough for Sara and I to get some things done around the house, including designing some time-saving systems for the weeks ahead.

As many of you know, Sara has been a faithful pumper in hopes that Elizabeth will one day be able to breast feed. In the last two days, two events have spurred on that hope. Yesterday, despite being hooked up to a bolus of Portagen, Elizabeth kept smacking her lips and looking hungry. Since the last thing we want to cause is more choking or vomiting, Sara and I are being extremely conservative with putting things in her mouth during feedings. But as Sara rubbed her lips with the pacifier, she suddenly sucked it into her mouth and went to town for 45 minutes. She has not done that since the day before her first surgery!

The second ray of light happened this morning. Before her second bolus feed of the day, she was again smacking her lips with hunger. Sara gave her some Portagen in a bottle (just 10cc's) and she took it right away! She took another 15cc's before this evening's bolus. From now on, when she's looking famished, we're hoping to incorporate some bottle feeding without causing problems.

As you can tell, we are clinging to small steps forward and asking God to give us realistic expectations for Elizabeth's progress. We also need His grace for her limitations. We know God's mercies are present to us even when we don't feel or experience them, so we're also asking for eyes of faith to both recognize His mercies and cling to hope when we're feeling overwhelmed. I work at least a half-day each day this week, so Sara is especially at risk for those overwhelming moments.

Thank you for your prayers...

Love you all,
Matt and Sara
Day 66 (Dec 19) Update:
Just another day of eating and sleeping. Oh...and a million and one visitors. Our second home-nurse visit went well. Elizabeth's blood pressure, heart rate and temperature are all normal. Here's a funny anxious first parent story: Last night, we found little white things in Elizabeth's hair. Our first thought was head lice! We were worried she'd gotten it from the blankets or hats at the hospital and were making plans to treat her. Then we realized they were just fuzz from one of her blankets. Just to be sure, we had the visiting home nurse confirm. She agrees...they're fuzz!
Join us in praising God for:
-Elizabeth's delightful spirit. Her sweet smile and joyful demeanor energize us throughout the long days
-Fewer vomits today than two days ago and even better napping
-A sign that her vocal chords are healing: 4 sessions of drinking from a bottle & a stronger cry
-A head lice-free daughter!
Love,
Matt and Sara
Day 69 (Dec 22) Update (covering Day 67, 68, 69):
Hello faithful friends and family,
As the Hit Counter on our website reminds me, many of you are faithfully visiting to check in on Elizabeth. And so before you head out to spend Christmas with your families, we wanted to quickly update you on how ours is doing.

Tonight marks the end of our first week having Elizabeth home. The last seven days blend into one another as we've entered a phase of Elizabeth's life that is very similar to that of the typical newborn. We're completely consumed by her- in particular, her eating, sleeping, pooping and peeing. Many of you have been there before and know exactly what we're talking about.

Today also marked Elizabeth's first trip out of the house...in the pouring rain. We took her out to the first round of follow-up visits to Elizabeth's doctors. All of them are pleased with the progress she has made. Some noteworthy PRAISES:

-Elizabeth is now weighing in a robust 8 lbs 9 oz, up from her nadir of 5 lbs and even her edema-inflated birth weight of 6 lbs 14 oz!
-Elizabeth is now routinely taking 15 to 20cc of Portagen from a bottle! That's right. Her sucking and swallowing are improving daily!
-A repeat ultrasound of her abdomen and chest today confirmed that NO fluid is reaccumulating anywhere!
-Her voice continues to strengthen and may soon be loud enough to annoy the neighbors. It's definitely loud enough to wake us up.
-With her progress, they are planning to start Elizabeth on breast milk in just 4 weeks! Sara's pumping days are numbered.
-She is doing well enough that the docs think she's strong enough to make a car trip to Fresno for the Christmas weekend.


Before signing off for the night, just a few other agenda items:

1. I made a trip to the 7th floor ICU to pick up a can of Portagen powder and saw some of the same names on the patient list that were there when Elizabeth was. I was reminded our merciful God was to allow us to bring Elizabeth home for Christmas. Our thankfulness is impossible to put into words. Would you "donate" a few minutes of the time you spend praying for Elizabeth to those kids and their families who didn't make it home to celebrate?

2. As things get busier here and Elizabeth's life grows more mundane, we're planning to make our updates less frequent, probably on the order of once per week. Of course, if her status changes for the worse, or something particularly exciting happens, we might write more frequently. In addition to weekly updates, we will also be posting a frequently updated prayer request list on Elizabeth's webpage that will help guide your prayers. And of course, there will be frequent photo gallery updates too. The photos we've sent to night are just a teaser!

3. Special thanks to those of you who have already responded with little notes to Elizabeth for her scrapbook. There is still plenty of time for those who haven't. If you've lost the form, it came with Part II of Day 65 and there's a similar form on the website that you can fill out and email to us.


We hope that your Christmases are filled with as much joy as ours will be. We also pray that God will bless each of you for your dedicated efforts in supporting us with prayer during this season.

Love,
Matt and Sara


Christmas Week (Dec 23 to Dec 29) Update:
Hello Friends and Family,

Yesterday, Sara, Elizabeth and I returned from Elizabeth's first Road Trip to Clovis, CA. Sara's family was gathering there (grandparents, parents, all the siblings with spouses, and their new kids) and we definitely didn't want to be the only ones missing. After being reassured by our doctors' visits last week, we decided to make the voyage. It took us about eight hours (with the constant help of my parents) to get all of our stuff together and packed into the car. All her paraphernalia barely fit in our large-trunked, four-door sedan!

Despite the Holiday traffic snarls slowing our travel time by two hours, Elizabeth handled the trip bravely. We found out that her car seat wasn't designed for kids with a G-tube sticking out of their abdomen, nor for babies prone to vomiting. After several stops for diaper changes, feedings and unexplained melt-downs, we arrived to the great excitement of the waiting family.

The next few days were great. It was fun to see the whole Peterson family together- to catch-up, play some games, eat good food, hold each others babies, and compare new parent notes. These highlights were interspersed with darting to the other room to clean up Elizabeth after yet another vomit. For some reason, she had a very hard time keeping food down. We tried everything: only G-tube feedings...only bottle feedings...a combination of the two...making the Portagen with a different brand of bottled water...etc...Frustratingly, nothing seemed to make a difference.

Despite all the stomach upset and vomiting, Elizabeth delighted all the family with her coy smiles and bright eyes. She also added sucking her own fingers and some very soft cooing (due to her vocal cord issues) to her "cuteness repertoire".

We came home yesterday afternoon, exhausted, but convinced our fatigue was worth the trip. We crashed immediately into napping and then were joined by my parents, who mercifully showed up with dinner and encouragement.

A longer list of our prayer requests is on the website, but we're particularly focused on Elizabeth's feeding right now. Pray that:

1) Her vomiting would stop and she would begin tolerating her feedings again.
2) Sara and I would have wisdom about how to alter her feedings to assist with that process.


We hope that your Christmas celebrations were wonderful,
Matt, Sara and Elizabeth

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

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 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

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 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

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