God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.
(2 Corinthians 1:3b-4, NLT)

Friday, December 19, 2008


Friday, December 19
Long time no update, again! I'm sorry!! Faith is doing well, so don't worry... we are finally able to hold her whenever we want, and take her in and out of bed by ourselves, so I have been busy making up for lost time.
She has no more chest tubes and is in a "big girl bed"! She is on very little oxygen through a nasal cannula, and is off of both Fentanyl and Octreotide. The chylothorax is all better (but she can still just have skim milk for awhile). The only lines she has going into her anymore are her Broviac, which she'll keep probably pretty much the whole time we're here, since she's so hard for IV's, and her NG tube (the one that goes down her nose to feed her).
She did NOT have MRSA, we just found that out yesterday; it was actually some other kind of Staph, but she is done with antibiotics now and out of isolation once again.
She has started and stopped feeds more times than I can count since the weekend. Unfortunately, when they first started feeds, her stomach wasn't moving the milk through, so when they would aspirate her NG tube the milk was coming back up. Then she started having green stuff again. Then she started throwing up green stuff, and that's where we've been the past 3 or 4 days. They talked about doing an upper GI contrast study with a small bowel follow-through for a few days, then finally yesterday Dr. Sandoval was in the room and she threw up, and I think that got them to decide it was time. They took her down for that about 1/2 hour ago or so; it is supposed to take 2 hours.
The thought is that she must have something in her intestines that is keeping what's in her stomach from getting through. She hasn't had a real sized poop since the weekend, just a couple of smears the other day, and nothing since then, even with suppositories. I don't think they're thinking blockage, but possibly a twist or a narrowing (stricture). Anything like that they do find, they will have to go back in and fix with surgery.
The one good thing is, she is doing so much better, so she will likely do much better with surgery this time around. And the chylothorax thing should NOT happen again, so we don't have to worry about that. And, we should have answers as to what's going on by the end of the day today.
Please pray for us for patience, because as much as I knew things like this could happen with gastroschisis, I had told myself they wouldn't happen to us... and pray for Faith that it's nothing serious and they can fix it easily. And try not to worry, all of this is still well within the range of "normal" for gastroschisis... actually the stories of kids who start feeds and do really well right away and go home are abnormal (darn Emma for getting my hopes up!).
So, that is that... stay tuned later today for a lovely picture montage to make up for my days of not posting! (PS- anyone who wants to come see her and hold her- as long as you're not sick- she is open for holding now!)


Anonymous said...

Good to hear she is doing so great, she has made a lot of progress. I don't comment a lot but I check in on you guys a lot and this one really hit home. My gastro baby was born 10/9/08. He fed good for just a couple days before the green stuff started coming up. He to had some dirty diapers, but after 2 good micornium ones it was just smears, like you said. So he stopped feeds and started with x-rays, up gi contrast, and lower. A biopsy of his bowel. In all we waited 3 weeks, thinking each day they would find out what was wrong, so don't be disappointed if this contrast leads to another, then another. After 3 weeks of wondering they took him in for a second surgery, they found a blockage and removed it. After that it was all up hill, it took a week to recover from that surgery, then he started feeds and that wonderful breast milk poppy diaper came just a day later! He was fixed! They still progressed slowly with feeds, but he was home 2.5 weeks after that surgery. That surgery was our turning point, so maybe it will be for you too!! Your doing great! And Emma got my hopes up too!! She was a quick eater!

Leah and Dylan born w/gastro 10-9-08

Beckie said...

What an encourageing comment from Leah. I pray that things will go that same way for Faith. I loved meeting Faith last night. She is so beautiful. Thank you for letting us come and spend some time with you two. It was nice to chat a bit. Hopefully I can come by sometime next week to bring the dipes I have for you. I think that is so cool that you used cloth too. Take care, you are all in my prayers.
(calvary chapel)

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