Summer update...yes, the baby :)

I realize I haven't been to my computer as often as I used too...once I came home, my laptop was no longer compatible on the new system Tom installed here so I am stuck using Tom's giant, 300 pound laptop. Not so lap friendly. Anyway, between that excuse, hooking up to the breast pump, and visiting the hospital often, computer time lacks. But, you know the ol' saying, "no news is good news". That applies here :


Summer is getting bigger. She has been very stable since her PDA surgery 2 weeks ago. They have taken her off caffiene...no more morning JOE (used to stimulate the respitorxsystem). She has been breathing well on 25-30% oxygen, whiche is just above room air (21%). She is not receiving any extra meds either...just some iron to help her small bouts of anemia. A few days ago, they checked her eyes and they are perfect so far! That's a pretty big Preemie milestone :) They have been feeding her breastmilk for the last week or so to get her small intestine stimulated and watch to see what her body does with it. Yesterday they switched to a special formula because her bowels were dumping, which means it is putting out more liquid than she receives. She still hasn't had her intestines hooked back up, so the colon is not connected to absorb the extra fluid the small intestine makes. All this will be resolved once she has her surgery to hook it together...they were saying in rounds today this will be sometime between Sept. 1st and mid Sept. Her nurse today was very excited to hear this because she says babies do so much better with food digestion, growth, weight gain, etc. once they are hooked back up. Yeah, this means we won't have to worry about a colostomy bag when she comes home either!

These were taken right before her eye exam...the nurse put dilating eye drops in so she was wide awake. Is it considered child abuse to flash your newborn with the camera too much??

Summer has been gaining and losing weight here and there. Today she is about 3 lbs. 9 oz., but she is filling out and looking more like a regular newborn. Pretty bizarre since she is 6 weeks old now! There is also talk of her moving to a regular hospital room (we decided to keep her at Children's) in a couple of weeks. She is making such good progress, she is getting close to not needing the extra ICU care.

Tom always falls asleep while holding a warm baby...sigh, this is what it would look like if Summer were at home with us :)

I can see coordinating a family pic is going to be a bit more challenging with 6 of us!

Sunday, Aug. 17th

An update on the possibility of Omegaven... At this point she is still in a wait and see situation. Once she has her bowel hooked back up, she will be turned over the the GI (gasteral intestinal) team of specialists. They will manage her care along with nutritionists who will train us how to care for her. She has such low Bilirubin counts, a good liver, and is healthy otherwise, that she could not even start the application process to receive Omegaven at this point. Due to the expirimental nature and non FDA approval, the hospital has to pay for it to be given under a "Compassionate Request". This is for those kids who are in need...usually they don't have any intestine and therefore no growth or food intake potential and are showing signs of liver failure already. Once her body is given the chance to recover and show them what it can handle digestion wise, they will have a better idea what her IV/TPN intake will be. Also in the process of waiting, her bowel does have the potential to grow with her. She is just 33 weeks gestation right now, so still has some good growing time left :) There is no way her body will make up for how much she lost, but every little cm will help her... I guess the prayers can be directed to intestines, right? ;) I have also mentioned an intestinal transplant...this would be way off in the future, if at all. Intestinal transplants are still very iffy at best and she would need to be a lot bigger and older to even be considered. There is, however, a Short Bowel Surgeon joining the Seattle Childrens' faculty this Fall. We have been told there are several other surgical procedures they can do to help maximize the bowel she has...we'll have to stay tuned for those possibilities down the road.....the long, complicated road.

For all those who know us, sit down now....this is a direct quote from Tom. "She looks really pretty in pink. I think we will have to dress her in it all the time." When Morgan was born, we tried to boycott pink...hmmmmm...things change!

Papparazzi mom! Back off!!

This is yet another quilt from my friend, Yvonne. I love frogs and this quilt too!

The baby's not so bad either! This is the first outfit she has ever worn. Naked until 5 1/2 weeks old...so cute as a "normal" baby :)

Summer is getting a little bigger...really.

She is happily cooking in her incubator, watched over by giraffe from Aunt Rachel and a bright froggy quilt from Yvonne :)

I am hoping to bring Summer home in a little over a month, sigh. For now, pray for healthy and happy, lengthening of her bowel. Did you ever think that would be a prayer request? Summer definitely deserves a second, or third (probably more than that) chance for a long healthy life!