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Monday, August 17, 2009

Feeding, feeding, feeding, oh yeah and sleeping too!

Well, my life these days revolves around feeding...between trying to get myself and the girls fed I don't have time for much else! Addison is doing well with breast feeding but I'm still having to pump quite often to take milk to Allison in the NICU. Since I'm splitting my milk supply between them, they both also have to be supplemented with formula, so my schedule goes something like this. Wake up, breastfeed Addison, top her off with a bottle, pump and store for Allison, then grab a bite to eat myself...then do it all over again about an hour and half later!! Hopefully when Allison gets home things will be a little less hectic and maybe I can get her started breastfeeding and back off on the amount I have to pump. Traveling to see Allison everyday takes up at least 4 hours of our day which kinda makes our feeding schedule a little difficult to solidify so I'm really anxious to get her home and get both girls on a similar schedule.

We still aren't quite sure when they are going to let Allison come home. She is doing really well keeping her temperature up and gaining weight. She is now 5 lbs, 2 ounces!! Now that she is filling out a bit she is starting to look more similar to Addison. The doctors still think they are identical but they have sent my placenta off to the pathology lab to run tests to determine if they are definitely identical twins. It is possible that I actually had two placentas that fused together and if that is the case then the girls would actually be fraternal. We are anxious to get those results too! So, I know you all are wondering why she is still in the NICU if she is doing so well, right??

Here's the story- about a week ago Allison developed a very pale red mark on her eye and forehead. At first the doctors didn't think it was anything to be worried about but it continued to get darker red and more prominent. It is now very dark red and the doctor's believe it is a port wine stain birthmark on her face, but they are running all sorts of tests to rule out other things like cellulitus or some other infection. So far all her blood work has come back negative for infection but we won't have a final result until the cultures have been allowed to grow for a few more days. The neonatalogist also wanted to rule out a condition called Sturge-Weber Syndrome. The syndrome involves glaucoma in the eye in which the birth mark is on, seizures, and some cognitive deficits caused by calcium deposits in the brain. Allison had a cat scan and an MRI to rule out any problems with her brain structure and everything looked wonderful- no calcium deposits were seen. We had a very rough, emotional few days, but were so relieved to hear that good news. The doctors were able to rule out the Sturge-Weber Syndrome- Thank you God for answered prayers!!!. Now we are just waiting for her to be seen by an opthamologist to make sure that her eye is not affected in any way. We are hoping that will be sometime today or tomorrow and then she will get to come home.

You can see in her photos how rapidly this thing has progressed since she didn't have any mark whatsoever when she was born. I'm warning you that it does look worse in pictures than it does in person. The good news is that there is very successful laser treatments that can be done to significantly fade a port wine stain birthmark. If this turns out to be the final diagnosis then we will have the treatments done for Allison as soon as possible to keep it from darkening more, and hopefully fade it completely.

We are, of course, very busy trying to settle into our new roles as parents with one at home and one still in the hospital. My mom has been a tremendous help. She babysits Addison while we go visit Addison, maintains our household chores, and helps in the middle of the night when one of us is too tired! She is a dynamo!!!! I will try to keep updating often to keep everyone up to date on our status.

Addison taking a snooze- one of her favorite hobbies!
Addison with her cousin Abbie

Allison hanging out with Mom and Dad in the NICU



3 comments:

  1. This comment has been removed by the author.

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  2. Brooke you are so wonderful- so busy but taking the time to fill us all in. Life has to be so crazy and hard with Allison in SA and you guys in NB. I will continue to pray for all of you and especially that things with Allison are positive and improve so she can get home with her sister. You are doing GREAT I can tell my just your blog

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  3. Ditto to Allison's comment. Thanks for keeping us posted. I know how hard it can be! Thank God for your mom, too...there were stretches much too long when I didn't feel like answering the phone, let alone worry about dinner or even taking a shower. My thoughts are with you and especially Allison.

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