Everybody say it with me this time...today was another great day. We know that the future may still hold some rough days, but we'll keep taking the great ones as long as they come.
The morning started out with Megan getting an update from Dr. Lepp (a University of Iowa grad). It was more good news about the IVH. He said he probably wouldn't even call it a grade 2 anymore. We like to hear those things. He did, however, bring us down to reality a bit by reemphasizing that Kayley is still at risk for neurological disorders since she was born so early. We already knew that but it seems they like to keep the parents informed.
Dr. Lepp also discussed the plan for extubating (removing the ventilator) Kayley again. It sounds like they will shoot for this coming Tuesday. They really want to give her time to grow and allow the inflammation in her vocal chords to subside. He also said that he was going to be with Kayley this next time so if she would happen to fail again, he can help determine why.
The last update that Dr. Lepp had was that he's pretty sure Kayley's Patent Ductus Arteriosus (PDA) has closed. If you remember back, a PDA is the open path between the heart and lungs in babies when they are inside so the mother can breathe for them. These normally close on their own after birth but are susceptible to remain open in premature babies. Kayley shows no signs of it being open.
After visiting with Dr. Lepp, Megan got busy setting up our primary nurses. Primary nurses can be requested by parents to always care for their baby when they are on duty. It's a very good idea to have primary nurses. They will get to know Kayley and her needs. They will treat Kayley by normal protocol but they also will know if something Kayley is doing is not her normal behavior which can signify a problem. Other nurses who haven't had Kayley before may miss these signs because they don't know her habits. So, last night we made a list of our favorite nurses and Megan worked this morning to get them as our primary nurses. So far, we got our top 2 day shift nurses and 1 of our top 3 night shift nurses. Some of the other ones are already primary nurses for other babies or have other duties to attend to (being on the trauma team, etc.). We are very happy so far but we will continue to "interview" other nurses so they can be on our list. Most of these nurses work three 12 hour shifts so they will only be Kayley's primary nurse 3 days a week. That's why we will have multiple primaries for Kayley.
Megan was also approached this morning about having Kayley be part of a study. Normally I would think "No, this is our little girl you're talking about. Just do what has already been proven," but this is actually a good study. The study is to find out if holding the baby during feeding helps with weight gain. So, since Kayley can only be held once during the day, she will for sure be fed at that time. The rest of the times, Kayley will be held or cradled in her isolette. They allow for one feeding time per day to do whatever we want...either hold her or don't hold her. The study actually started with Kayley today. At her 5:30 pm feeding, I stuck my hands through the side of Kayley's isolette and cupped my hands under her to hold her. She just needs to have the feeling of being held. So, it's not a study to be scared of. It actually helps because we get to interact with Kayley more (the nurses do it when we're not there). Hopefully she gains a bunch of weight and the study is successful.
Holding Kayley during her 5:30 pm feeding wasn't my first time holding Kayley. Since Megan was able to hold Kayley yesterday, it was my turn today. I knew right when I woke up this morning that I was going to get to hold her so I was excited all day. I got to the hospital around 2 pm. The nurses came in at 2:15 pm and asked if I wanted to hold Kayley. I don't know if they saw the look on my face as I answered but I'm pretty sure it said something like "Are you kidding me? YES I want to hold her!" And as Megan said yesterday, it's great. It's more than I ever expected. She is so little. In her isolette, she looks like she's a good size. But, when the nurses laid her on my bare chest, I could not believe how little she really is. They mention how good it is for the baby and the parents. I believe it 100% now. Right after we got comfortable, Kayley's oxygen levels increased just as they did when Megan was holding her. Kayley can actually tell when she is skin-to-skin with us and she loves it. How great is that? And to top it off, it makes us feel amazing to see the difference we are making for Kayley during holding time. A lot of the time we've spent at the hospital thus far has just been spent observing and helping with some small roles in caring for Kayley. As good as the nurses are at including us, there are still times when we feel kind of helpless like "my daughter is right there and I can't do anything for her." Well now we can hold her.
Hey Megan and Andy!
ReplyDeleteJust wanted to let you guys know that you are doing an amazing job telling Kayley's story on this blog. I cry almost every time I log in.
I think that first picture on the blog today is the first time I've thought she looked small.
We are praying for your strong girl to just keep getting stronger.
Serena, Bill, Dillon and Brennon