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

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

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

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

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

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 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

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 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 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

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

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.

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

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

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)

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 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

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

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

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

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

Elizabeth Archives - Day 24

Hi family and friends,

Elizabeth continues to get food by mouth, and for the most part is keeping it down. Today she had a test to determine if her digestive system was working properly and everything came back normal. That is a relief, and we're praying that the difficulty she had with keeping her feeding tube down was simply an issue of discomfort with the tube and will be easily resolved by our new method of food delivery. She's still figuring out how to coordinate the whole suck/swallow thing, but we're taking it slowly, and we have to remember that when it comes to eating by mouth, she's only 24 hours old!

Please continue to pray
-that Elizabeth will learn how to feed, keep her food down and start gaining weight (so far, since birth she's lost and never regained over a pound. She's getting lots of nutrition and fluids through IV, but hasn't been able to gain weight...She should be gaining 30 grams a day...and this will need to happen before she can eventually leave the hospital.)

-for grace for Matt and I as we learn our limits. Right now we have very little energy for anything other than keeping vigil at the hospital and rooting for Elizabeth. We need restorative sleep and moments of respite and refreshment along this journey. We are praising God for family and friends who are making such an effort to nurture us (through phone messages, emails, cards, care packages, meals and prayers) so that we can expend our energy to nurture Elizabeth. Thank you for your understanding when your phone calls and emails go unanswered. We are definitely blessed by each one, and you are loving her as you love us...

-for continued health for both of us (and our families as they come to visit)

Finally Elizabeth's medical issues remain the same as yesterday...she still has mysteriously low sodium, her chest tube drainage continues to hit around 200 cc's/day, she's not peeing enough and her blood clot remains. Pray for Elizabeth's doctors and nurses to have wisdom beyond their experience as they seek to find the reasons for and treat these problems. What is a mystery to them is completely known to God who created and holds Elizabeth's life in His hands. Pray for insight for everyone involved in Elizabeth's care.

We love you and continue to be sustained by your prayers and love. There simply are not words to say "Thank You" enough...
love,
Sara & Matt

Elizabeth Archives - Day 23

Dear Friends and Family,

If you're rushed and don't need the details, skip to the prayer requests below. But if you're interested in the the Saga of Elizabeth and her feeding tubes, read on.

To briefly recap: The composition of Elizabeth's chest tube drainage is lymphatic fluid. When humans eat a meal filled with fatty acids and triglycerides, the intestines absorb these nutrients. They are turned into "chylomicrons" that are then shuttled to the lymphatic vessels of the intestines, and from there on up to where the lymphatics meet the veins. From the veins, they are distributed to the rest of the body.

The big hold-up in Elizabeth's recovery is the healing of the lymphatics damaged by her surgery. If she were to eat a fatty meal right now (like breast milk), her lymphatic flow would increase dramatically and delay the sealing off of those damaged lymphatic vessels. So for now, we are trying to get a fatty-acid free diet into her. The Team has been trying to do this using a feeding tube.

There are several types of feeding tubes. The type Elizabeth has had is called a Naso-Gastric ("NG") feeding tube. It's a thin rubber tube that gets inserted through the nose, runs down the esophagus into the stomach. There is a Naso-Jejunal ("NJ") tube which is just like the NG tube except that the tip goes past the stomach and ends in the jejunum (the first portion of the small intestine). Lastly, there is a "PEG" tube, which stands for percutaneous endo-gastrostomy. This is a surgically inserted feeding tube that is placed through the wall of the abdomen and into the stomach or jejunum and stitched into place. The PEG tube is usually reserved for situations for a feeding tube will be required for an extended period of time. The NG and NJ tubes can only be used for a month or two before they start doing erosive damage to the nose.

As you have been reading, The Team has been fighting to get Elizabeth an NJ tube because all of her NG feeding tubes have resulted in vomiting. Why this is the case has been unclear. It could simply be that Elizabeth's throat is very sensitive to the presence of the tube and it causes her to gag frequently enough to bring the food up. Or it could be a problem with the pyloric valve. The pyloric valve is the outlet valve of the stomach. It acts like a sphincter, periodically relaxing to allow small amounts of food to exit the stomach and proceed to the intestines. The pylorus is something like the metering light on a freeway- controlling how much food is passing through the intestines at one time. Of course, if the metering light stays red all the time, the cars back up onto the on-ramp and cog the surface city streets. If the pylorus is not relaxing properly, the food fills up the stomach, backs up into the esophagus and causes vomiting.

None of Elizabeth's 7(!!!!!) feeding tubes has ever made it out of the stomach, even when using X-ray guidance. One went down into the stomach, did some loops in there and the tip came back up the esophagus and up into her nose! Yesterday's tube slowly slid back up and Sara found it coiled around in her mouth this morning! As a result of these difficulties, some have suspected something might be wrong with the pyloric valve. However, ultrasound pictures have failed to find a problem with it.

After her feeding tube had to be removed this morning, my brilliant wife had the brilliant idea of trying to feed Elizabeth the non-fat formula with a bottle! In retrospect, it isn't quite clear to us why The Team hadn't thought of this simple solution before. Maybe it's because the formula apparently tastes horrible and babies usually spit it out. Grandma Suzie tasted it and says it reminds her of wet cardboard (where she's been sampling wet cardboard remains a mystery). After hitting themselves in the forehead and saying "Duh" under their breaths, they agreed to let us try the bottle. We got off to a slow start. We ended up dripping about 1/2 a teaspoon into her mouth because she really didn't know what to do with the nipple. Even that small amount came back up about 30 minutes later. When we returned to the hospital this evening, Sara decided we should try again with a different nipple on the bottle. In less than 5 minutes she'd consumed a whole Teaspoon! That's all they want her to have each time for now. She didn't seem to mind the taste, probably because the only other thing that's been in her mouth is a pacifier and Vaseline. We're really looking forward to holding and feeding her.

Prayer requests:

1- That Elizabeth would continue to hold down her feedings, keeping us from having to try yet another feeding tube.
2- She had another fever today, so pray that she's not developing another nasty infection.
3- She's still on blood thinners for that clot, so pray that she doesn't have more bleeding or clot growth.
4- Her sodium is still low, but slowly rising. Where it is going is still a mystery.
5- She hasn't been peeing hardly at all. While this might just be dehydration, pray that it's not something more serious.
6- I will probably go back to work a week from tomorrow, a thought which is already making Sara and me hyperventilate.

Elizabeth Archives - Day 22

Today was much like yesterday...a few setbacks with Elizabeth's medical condition but continued progress in our relationship with her and sense of our being a family.

Several days ago, The Team suspected Elizabeth might have a blood clot filling up one of the major vessels leading to her heart. They thought this would likely explain her legs turning blue when she cries. An ultrasound performed yesterday or late Thursday confirmed their suspicions. Normally, they don't treat these clots, but unfortunately, this is no ordinary blood clot. Setting yet another record, it extends from the vessel behind her left knee all the way up to where blood enters her heart. There is a much smaller one forming on the right side too. Because they fear it might extend further without treatment (possibly risking her kidneys or heart) she has been started on a blood thinner. This is a risky decision because she just stopped having the bleeding from her stomach and it could restart. With her blood thinned now, this re-bleeding could be difficult to stop and prove even more serious.

Elizabeth's sodium continues to be mysteriously low and difficult to appropriately elevate. Lab tests have failed to reveal a clear cause, so we're tinkering with giving her tons more sodium.

The good news:

The results of the brain wave scan (EEG) came back normal. We've included a photo of the Elizabeth getting her EEG- quite a few wires!

This morning, they placed another feeding tube into Elizabeth's stomach, hoping food would go down and stay down...so far so good. She's had some VERY minor vomiting compared to previous tries. Tonight, we learned that once Elizabeth gets enough of the Portagen feedings in her system, her pee, poop and sweat will all begin smelling like rotten eggs! Somehow, I doubt that will dissuade us from wanting to be close to her.

The chest tube drained 180 ml of fluid, slightly down from the previous 24 hours.

We heard that if we can get to the stage where the chest tube comes out, the tube feedings and intravenous antibiotics are things we can learn to do at home.

Specific Prayer requests:
1. That Elizabeth's stomach would stop bleeding and not restart now that she is on blood thinners.
2. That the blood clot would not propagate, but start to dissolve and go away
3. That her sodium level would correct to normal
4. That she would continue tolerating the tube feedings without much vomiting
5. That our nightly bath and holding ritual would continue FOREVER!
6. That Jeannie or Sheila would always be assigned as her nurse, and come home to live with us when Elizabeth does.

Look forward to a Sara-authored update soon! Guaranteed to include many more details on our non-medical thoughts, feelings, hopes, and aspirations!


Love you all,
Matt (and Sara)

Elizabeth Archives - Day 21

When I was in Boston attending college, I would call my parents whenever things were going badly- stress with classes, work, friends, etc. They thought I was miserable there because I never called when things were going well. So I've learned to be diligent in passing along good news quickly...hence, an evening edition of today's update.

Before I go any further, I realize we're sending out a lot of emails and reams of InBox clogging photos. If all of this is too much for you, we won't be offended if you'd like off this mailing list. Just drop us a note and we'll take you off. And if in several days, you realize you miss the pics, just email us again and we'll add you back!

Returning to the update, I'll begin by saying that nothing much has changed with Elizabeth's medical condition, except that she vomited a lot less this afternoon. Her sodium is still too low (but moving in the right direction) and there is still no firm plan on how she's going to get fed given her stomach issues. But OUR mental condition IS improving greatly. The nurse assigned to Elizabeth tonight is a gift from God. She has a can-do attitude and let us bathe, dress and then hold the daylights out of our daughter. Elizabeth was better able to focus on our faces and at one point, obviously recognized her mother's voice and moved around to try and find Sara. We naturally found all of this deeply nourishing. For the first time, we felt like real parents!

Love,
Matt and Sara

Elizabeth Archives - Day 20

I've decided to try and write these updates during the day...the situation always seems less bleak after a good night of sleep! Additionally, some of you might get the email in time to pray for the upcoming day's events.

Since yesterday's mid-afternoon update, not much progress has been made. They were able to get another long-term IV in her right arm, allowing them to (finally!) remove her groin IV. Now she can kick her feet around at will (which she has been doing frequently to express her irritation). Sadly, the overnight nurse thought Elizabeth needed a "back-up" IV and found a vein on the side of her head. Now she can't turn her head or wear any of her cute hats!

They managed to fit her in for another try at placing the feeding tube past her stomach. Sadly, they failed a second time, and in trying, caused her stomach to start bleeding. Shortly after the procedure, she began vomiting blood and blood clots, enough that her blood count dropped low and she required yet another blood transfusion. To help get the blood out of her stomach, they had to put another tube through her mouth and down into the stomach. Today, a pediatric gastroenterologist will see Elizabeth to figure out where the bleeding is coming from, how to stop it, and figure out why the feeding tubes keep getting stuck in her stomach.

I briefly mentioned yesterday the problem with Elizabeth's electrolyte levels. I thought it would turn out to be a lab error...but I was wrong. The reasons are still unclear, but Elizabeth's sodium did, in fact, get dangerously low. Often, a level that low would produce a coma or seizure. Thankfully, neither of these developed. The Team is working hard to find out why the sodium got so low, and it may be something as stupid as giving her the wrong IV fluids.

I haven't mentioned this before, but since she began opening her eyes, Elizabeth has been periodically making strange eye movements. I thought they were probably just "ICU baby" eye movements and didn't make a big deal of them until they started becoming more frequent yesterday. So ophthamology and neurology stopped by to see her. The ophthamologist said that everything looks good with her eyes and agreed that the types of movements I was seeing are common in sick newborns. The neurologists agreed, but recommended that we exclude the possibility of seizures with a brain wave scan (an EEG) and to some time in the future do an MRI to see exactly what's going on with the brain. The EEG was performed yesterday, but the results aren't back yet. We are reassured by these findings.

Watching Elizabeth gagging on the tubes and frequently vomiting has been one of the hardest aspects of our journey so far. When you can't do anything to soothe her, things start feeling hopeless and unending. We are trying hard to keep perspective, but these "light and momentary afflictions" seem too heavy and long-lasting.

On the brighter side, Elizabeth is now three weeks old (technically not until 4:02pm). There were times earlier in her hospitalization where we weren't sure she would survive this long. For this we are truly grateful. Additionally, one of our favorite nurses is taking care of Elizabeth today and has NO other patients to distract her.


For your prayerful consideration:

1. That Elizabeth might be able to find a comfortable position and some sweet sleep
2. That the bleeding from her stomach lining would stop and a cause easily found
3. That her white blood cell count would come down and remaining infections cleared out
4. That her mother and father's hope would be restored and faith buoyed

Sincerely,

Matt and Sara

Elizabeth Archives - Day 19

Hello All-
Our email server was down yesterday, hence the combined report for today...

After Elizabeth's chest tube almost fell out the other day, the doctor-in-me decided to become more involved in Elizabeth's care. The hospital doctors and nurses are wonderful and competent, but an extra set of eyes and ears seems only beneficial. So I have begun scrutinizing her labs and X-rays, and this morning started attending "rounds." "Rounds" means the 10 minute block of time where "The Team" (nurses, on-coming attending, out-going attending, residents, fellows and case managers) gets together to discuss the patient's progress and care. The MDs were very open to having me there and allowed me to input and question their plans. As a result of my prodding, I think they are moving faster on some things than they had planned initially.

Yesterday, Elizabeth went to the Interventional Radiology labs where they attempted to place yet another feeding tube past her stomach and into the intestines. For the first time in 12 years (according the head MD), they failed! So they left the tube in her stomach only and decided to try feeding her for the fourth time. And for the fourth time, she started throwing it all up again. The Team was planning to give her another day to see if her stomach starts working better before asking Interventional Radiology to try again. I politely reminded them that we've been trying this approach for almost a week and insisted that they make the Interventional Radiology plans now.

While sitting with her yesterday, Sara noticed that whenever Elizabeth cried both of her legs would become slightly purplish, as if the blood wasn't getting there appropriately. The doctors suspect that large vein feeding into the heart may have clotted off and they are running tests to see if this is true. In the meantime, I convinced them that the IV in her groin needed to come out and be replaced elsewhere. I'm writing this message while they are doing that procedure.

Despite all of this, Elizabeth is hanging in there and continues to look cute. Her weight loss has stabilized. She gets less irritated by diaper changes, the blood pressure cuff and temperature checks. She recovers more quickly from each episode of vomiting. Yesterday, Sara very boldly trimmed Elizabeth's finger nails for the first time. We finally found some onesies that snap down the left side (to allow an exit for her chest tube) and at the bottom (for the heart monitors and IV tubing), so starting today, she may be able to wear clothes!

Sara and I are hanging in there as well, thanks no doubt to your sustaining prayers. It is hard for us to pray sometimes, and we appreciate you taking these requests to God on our behalf.

Thanks a million,
Matt

Elizabeth Archives - Day 18

My, my, my. Today was a toughie. It started with attempts to place a new feeding tube through Elizabeth's nose, through her esophagus, her stomach and into the intestines...at 4 am. You can guess what she thought of that! After an hour of recovery, they changed the IV line that enters her femoral vein near her groin...also fun. She got to sleep until early afternoon, when we got her out of bed for me to hold her. While she sat fussing on my lap, I noticed that the fluid draining from her side was frothy and noticed the sound of air escaping around her chest tube. In case you are wondering- that's not good at all. I called in the nurse and asked her to get the surgeon and some other staff. Squeamish folks stop here! The chest tube had been moving around enough to stretch the opening into her chest and the stitches holding it in place had broken. We caught it just prior to falling out (which would have been a disaster). Ideally, the chest tube would have been pulled out and a new one placed. Unfortunately, Elizabeth's body is quite small and the available spots to put the new one have already been used up. So they cleaned the tube and area as best they could and sewed it back into place. Now we hope it doesn't become infected! She became anemic enough overnight to require another blood transfusion, they still haven't managed to get the feeding tube passed her stomach, her groin IV isn't allowing them to draw blood through it (one of its main functions) and the same IV seems to be obstructing venous outflow so that her left leg keeps turning slightly bluish.

As you might have guessed from the lead-up, tonight's prayer request list is somewhat lengthy:

1. We're bummed. Today feels like four steps backward and it seems like our last step forward was quite awhile ago. We need better strength and stamina for this ICU roller coaster.

2. Low red blood cells: the constant decline in her red blood cells mostly comes from the blood they need to constantly remove for cultures and tests. She's now required two transfusions. The most recent drop in her count was faster than expected and we're still not sure where its going.

3. IV access: the IV line in Elizabeth's groin is very important and is supposed to do three things. First, allow several different medications and solutions to be administered simultaneously. Second, allow easy drawing of blood samples without have to stick Elizabeth with a needle. Lastly, it allows them to measure her venous blood pressure. But it's not working for drawing blood currently and so every test Elizabeth needs requires finding another vein and putting her through the pain of sticking her. The IV line is also a major infection risk. Since they changed the tubing this morning, her leg turns blue in certain positions. Pray that they will know whether to find a new site or stick with this one.

4. Infection: Elizabeth continued to have fevers today and her white blood cells are still very elevated (a sign of infection). A clear source for this has not yet been found. We also found out that she will need at least 6 weeks of intravenous antibiotics for those blood bacteria she had last week. What this means for our hopes to bring her home before I go back to work is unclear.

5. Chest tube: We used to be ultra-concerned about how much fluid was coming out. Our new worry is whether the chest tube itself its coming out! We're very nervous now about holding her, afraid of dislodging the stitches. It could also be the source a new infection since it was exposed to the air.

6. Nutrition: Tonight, they're going to try a fourth time to get a feeding tube past the stomach. Because the tube passes through the nose and down the throat, it rubs constantly and produces a nearly continuous gagging sensation. Babies get used to this eventually, but it is very uncomfortable at first. The plans to start feeding her have been delayed now three days as a result of not getting it to the right spot. Pray that it gets there and that Elizabeth will get used to its presence quickly.

Enough for now. It's easy to lose perspective late at night. We have truly experienced the fact that God's mercies are new every morning. And we're still trusting in his faithfulness.

Matt and Sara