Day 24

Today was at least slightly less eventful than the past several days. I went to visit this morning and spent some time just sitting by her isolette talking to her and touching her head. The nurses told us early on that premies can't tolerate soft stroking or rubbing because it overstimulates them. Instead, they prefer firm pressure. Of course, all I really want to do is softly rub her head or stroke her face, but I refrain and instead lay my hand firmly on the top of her head on on the bottom of her feet. She was very calm and peaceful this morning and I got the good news that she gained 14 grams since yesterday and is now up to 2 lbs 5 oz. This is an ironic weight to reach because on the last ultrasound the day of her delivery, the size estimate was 2 lbs 5 oz. So, it only took 24 days to actually get there!!
After lunch, Blaine and I went back to the NICU so that I could hold Brynn. When we got there, I immediately noticed that there was a new open baby bed pulled back into Brynn's corner with a new baby that looked tiny like Brynn. It actually took me several seconds to realize that it was Brynn! She was laying in an open bed with a warming light above her. She was wide awake and flailing all around. There was another baby's family getting ready to take their baby home so the corner was a bit crowded and hectic. The nurse (one we had met just today) quickly told us that she had Brynn out of her isolette because Dr. Vish (one of the neonatologists) was planning on doing a lumbar puncture (spinal tap). We were immediately alarmed and began to question the nurse about why another spinal tap was necessary. She was clearly uncomfortable with our questions and was very busy helping the other family. She evidently went straight to Dr. Vish to get him to answer our questions. I am imagining their conversation going something like "please help me deal with this neurotic family so that I can get this other baby home." Dr. Vish came over and my first question was "why does Brynn need another spinal tap?" He hesitated for a long time and looked at me sort of strangely. He finally stated "did you say ANOTHER spinal tap?" It turns out that in rounds they discussed her positive blood culture and mentioned that she needed to have a lumbar puncture to rule out meningitis. They did not find the earlier results in the chart and I guess none of the doctors remembered that they had already done the test on Sunday. Dr. Vish quickly went to the chart, found the results, and relieved us by telling us that the test was definitely not necessary. Yikes!! So, Brynn barely escaped a 2nd spinal tap and we are really thankful that we arrived when we did. We know that these types of things happen in a NICU that is full of premature and sick babies, but it further enhanced our feelings of anxiety and the need to be there as much as possible to be proactive in Brynn's care. Brynn was immediately put back in her isolette but she was as agitated as I have seen her. While being in the open bed, she didn't have the "nest" of bedding around her that serves to give her boundaries similar to what she would be experiencing in the womb. Her heart rate jumped above 200 and she was crying a good deal. In the end, we weren't able to hold her because she was too overstimulated at that point.
We went home this evening and tried to focus on the good news--her most recent blood culture hasn't grown any bacteria yet (we'll know the final verdict tomorrow evening), her belly x-rays look good, and she is continuing to gain weight. Today is the 5th day without food, so we will hopefully start feeding again in the next several days. I spoke with the occupational therapist today who is the person responsible for helping when we start trying bottle feeds. She thinks we'll start trying her with a bottle sometime after she proves that her tummy can tolerate the feedings again. She continues to suck away at her pacifier so I'm hopeful that she'll be able to manage a bottle when the time comes.
After dinner at home tonight, we played a rowdy game of "monster" with Riley and all ended up laughing hysterically. It felt really good to laugh.
I just wanted to tell you all how much we appreciate the comments you've been leaving. Blaine's mom, Kathy, was the one to suggest a blog. I was really hesitant at first, not knowing how I'd feel about having other people read my personal thoughts. But, already I know that this is going to be one of the best things I could do for myself and several of you have told me that you appreciate being able to get the latest news whenever you want. This can be a lonely experience and now I realize just how large our support network really is. Thank you.