December 23, 2009

<strong>December 23, 2009</strong>

Looking at the picture of me with them I am trying to figure out where I put them. Yes, I was big but, was I really big enough to fit them both in me? Yes, I still look that tired. I am averaging about 5-6 hours of sleep a night 45min-2hr at a time. Part of the time I am sleeping in the NICU as it is so far from my room to the 3rd floor NICU that it is too hard for me to wake up and walk that far. Surprisingly, I am doing ok physically.

The storm has hit. I keep hearing more and more snow fall totals that they are calling for us to get. The last I heard was 14-20 inches! Our family will not be together for Christmas. This is very hard for me as I’m sure you all know I don’t leave my kids.

Ruben and Tayla continue to gain slow and stedy. Ben is 4lbs 6oz and Tayla is 5lbs 1oz. They both did great feeding by mouth today. Ruben took over half of 3-4 of his feeding by breast and a couple of them he finished by finger feeding. Tayla does great at the breast but she doesn’t seem to transfer any milk. She took as much of her feeds by finger feeding and bottle as Ruben did.

I’m sure many of you are wondering about the whole PKU thing. Ruben’s came back fine Tayla’s is slightly elevated. The NICU docs are freaking out about it and I’m telling them it is no big deal (which the specialist who we have worked with in the past and came and consulted with me is on the same page as I am) That doesn’t seem to matter the NICU docs think Tayla is going to die. Unfortunately the specialist is out of town for the next week so it is making dealing with the NICU docs very challanging since they seem to think I’m just a dumb mother. Yep, dumb mom who now has five children with the same thing. With only 1in 16-20 thousand getting PKU and even less getting what my children have most doctors have never seen it or will never see it the whole time they are in practice. There is so much misconception about the difference between PKU and what my children really have which is the varient form called Hyperphenyalanimina (sp?) They do not get the high levels which are what cause the issues. For the most part they just need to be monitored. Breastfeeding is best as it has a much lower level of Phenyalanie (sp?) This is the amino acid that builds up in the blood.

Tayla billierubin is still up in fact it is going up. She is still within normal range we just need to make sure that we don’t pass that. So she is back on a billi light along with the billi blanket. Hopefully when they repeat her level on Christmas it will be way down and she can finally be off the lights. We are assuming that her levels continue to be high because of her high hematicrat. Basically she has more red blood cell to break down.

Keep us in your prayers. Pray that they continue to take their feeds by mouth, that Tayla’s pku level stays low, and that Tayla’s billirubin goes down, and that we get home very, very soon! Also continue to pray that I say healthy.