July 4

Daddy and I had a rough night yesterday. I was a little discouraged from the news we received on you. In the morning, the cataract surgeon came to check you out, and it sounds like she suspects you might have some retinal involvement along with the cataracts. If so, your prognosis isn’t very good. There isn’t much they can do if the retinas aren’t fully developed. Then I spoke with your general surgeon (Dad says not to be confused with the surgeon general…silly Daddy) and he says your colostomy is necessary. I trust him when he tells me this is the most conservative, risk free option, but I really hate to have to do it. And then when we got home late last night, there was a letter from the state health department saying your blood screenings show you have a thyroid disorder. They also said there are several factors that can make the results inaccurate and more testing must be done, but it was really more than I was wanting to handle last night. Dad and I spent awhile struggling with the “why” of it all last night. It had been a couple weeks since I had given into the emotion and I think I just needed to be sad for a bit. Daddy too—he has been so strong through all this and he needed to let it out. It seems so unfair—why you, why this? But what I realized is that nobody who goes through this ever thinks it is fair. And the amazing amount of love I feel for you is small in comparison to how much God loves you. So if I hurt this much for you, I can only imagine how Christ feels. I am sure He was crying with us last night. And that is why it is so hard, because we just have to have faith that even though this doesn’t seem fair, and I am positive that God hurts for you too, He created you and put you together like this for a reason. Your dad does a good job of praying that God’s will be done in you. I am not there yet. I don’t know what His will is and I don’t know if it matches up with mine so I am afraid to embrace it. So now I am praying to want to want God’s will in you. Is that silly or what? But everything seems brighter after a good night’s sleep and I woke up anxious to see you today.

Dad and I went home last night (we have been staying at Mema’s ever since you were born since she lives so much closer to the Med Center and we only go home a couple times a week to change out clothes and check on the cats). This morning we had to get a lot of things done on that side of town, so we didn’t get to see you until after the 3:45 shift change. But you spent the morning with Grammy, Mema, and….Aunt Paula! She came to see you again this weekend because she loves you so much! You looked so cute in the 4th of July outfit your Mema bought you and enjoyed cuddling with everyone. At your 6:00p feeding you did such a great job! You took 9 CCs from the bottle and had a good sucking pattern down. I was so proud of you that at the 6:30 break we went to buy you an iPod! I thought you would enjoy listening to that in your crib over the beeping of monitors and the crying of other babies. You do love music. And your Aunt Paula bought you the book “Barnyard Dance” (since she is the dancing Aunt). When we came back you were sleeping soundly, so story time will have to wait until tomorrow.