Feeding

Lilly started with the Pedialyte yesterday and loved it. She drank her tiny portion in about 2 seconds and then screamed because she wanted more. They said she was "inconsolably hungry" this morning so they mixed, half and half, breast milk and pedialyte. She loved it and so she progressed to straight breast milk at noon. They'll increase her to 3 tsp tonight at 9 and a little bit more every day.
The nurse today said if she continues to do as well as she has been, she should be home in 4-5 days!

Lilly Update

Lilly came off of the ventilator on Sunday afternoon. She's been doing great and getting rid of tubes and wires everyday. She's off the morphine drip and just getting Tylenol for pain. She graduated to a regular bed since she no longer needs the heat lamps. She lost her blood oxygen monitor yesterday, but today's change was the most exciting. She's had several poopy diapers in the last couple of days and nothing was coming up out of her stomach tube anymore. So, they finally took the tube out of her mouth and cleared her to start eating.
They are going to start her with 5 ml (1 tsp) of Pedialyte every 3 hours. They said if she tolerates this they will start her on breast milk and gradually increase the amount over the next week. When she starts eating at least 2 ounces every 3 hours she'll be able to come home. This is the last big hurdle and we'll see how it goes. They say some babies take to it right away and others have difficulty tolerating the food, or figuring out how to swallow. We'll pray for a smooth transition and a quick removal of the last tube, her IV nutrition.

Lilly

Lilly had surgery this morning and everything went well. They ended up not finding a blockage in her intestines, so recovery time should be a bit shorter. They found a cyst (which is what they thought was the blockage on the x-ray) on the outside of her small intestine. They said it probably would have resolved itself, but since they were in there they just removed it. They also found a small hole in her colon, which they repaired.

She's still intubated tonight, but they will extubate her as soon as they can lower her pain meds enough for her to breathe on her own and keep her comfortable. They expect this to be within the next day or so.

For now we're unable to hold her, but we got to the hospital early this morning and I was able to hold her for a good hour before surgery.

She will always be at a higher risk for bowel obstructions due to all of the surgery she's had.
Other than that they expect her to fully recover and have no lasting problems due to all of this.
They also made her a belly button since they had to cut off the umbilical stump in the initial surgery. She'll also have a small scar above her belly button where the hole was.

Thank you for all of your prayers and support.

Update

After 3 more inconclusive x-rays they finally did a contrast dye study this morning. They did find a blockage and are planning on repairing it Thursday morning. This means Lilly will have to go back on a ventalator for surgery, and will probably stay on it for a few days. They estimate about a week for recovery and then we'll start feeding.

We're all moved into our new house and love it. It's been a busy week, but everything went smoothly. We want to say thank you to everyone who chipped in. We've never really needed help from our Ward before, and were touched at how willing everyone has been. So, thanks for all the meals, packing, cleaning, moving and unpacking. Thanks to our friends and family for all of the babysitting and moral support. We can't find enough words to express our gratitude.

Lilly Update

They did an x-ray of Lilly's bowels today. They didn't find anything negative, but can't tell for sure if everything is connected or not. The plan is to let her rest and wait until next week to do a contrast study.
She's taking a pacifier now, which is kind of cute. When we got to the hospital this morning she was crying and the nurse was running back over to replace her pacifier for what looked like the hundredth time. I guess we have a binki baby on our hands.
We are able to change her diaper and take her temperature when we're there. Last night we even got to change poop! At home we fight over who changed poop last because no one wants to do it, at the hospital we're both anxious to have our turn.

Home Owners

We got the keys to our new house yesterday!
We're moving in on Friday and couldn't be more excited.
This is how we do things.....all at once!

Welcome to the World

Lillian Grace Rowe

Tuesday July 7th 2009
6:55pm
5 pounds 3 ounces
18 inches

Lilly made a surprise appearance this week.
I went in for my regular appointment on Tues. and requested an ultrasound to check her position. Eli had been breech, and I was worried Lilly was transverse, this turned out to be the least of our concerns. She was head down, but the amniotic fluid was very low. I was sent directly to the hospital and was told not to stop anywhere on the way. Ben was rushing back from Scout Camp, and Adrianna actually made it to the hospital a few minutes before him.
They couldn't enduce me because I had a c-section with Eli, so they did another c-section within the hour. We were expecting her to go the NICU because she was only 34 weeks 5 days. They had prepared us for the normal premie issues and we expected a few days in the NICU.

When they delivered her they discovered she had a birth defect called gastroschisis. She had a very small hole in her abdominal wall, and part of her intestines were outside of her stomach. She was rushed away and immediately, sedated and put on a ventalator. She had come out screaming and was able to breathe on her own, but the doctors didn't want her to get air into her stomach, and inflate her intestines. They were able to put her intestines back into her stomach right away, but the blood supply had been pinched off to a portion of bowel and a small section had to be removed.

They have left the hole open and we were expecting to have another surgery sometime next week. Over the last few days she has been pooping, which was very unexpected. They are now "hopefully optimistic" that there isn't a disconnect and will do some studies on Monday or Tuesday to confirm this. She was weaned off of the morphine and came off of the ventalator yesterday, and we were able to hold her for the first time. Every day she improves a little bit, and it seems like there is one less tube coming out of her.

We'll see what the next week brings, but things are looking up. Even if there isn't a disconnect in her bowels, it will still be a long road to recovery. Babies with gastroschisis often have a hard time eating, and she won't be able to come home until she can eat enough to grow. They initially said she may be there up to 6 weeks, but this is just an estimate and a lot will depend on her and how quickly she recovers.

We are very thankful for all of your prayers and service during this difficult time for our family. We'll try to keep the blog updated with her progress.

Happy 4th of July!

Tom Sawyer

Wet your paint brush

Explain the job

Paint the fence

Check your work carefully

*it's also important to wear boots on the wrong feet, shorts and no shirt!