I can't believe it's been 10 days since I've last posted, or how much has happened in the last 10 days! Things move pretty fast in the CVICU. Brynn continues to make excellent progress. She got her breathing tube out earlier this week and was put on high flow oxygen.
They weaned her off all of her medication and took out both central lines. Huge steps th-
at finally allowed me to hold her on Wednesday (an amazingly moving and soul satisfying experience to say the least).
from collapsing, see left). The doctors grouped this information all together and decided that Brynn needed to be evaluated by the genetics team to rule out a syndrome or metabolic disorder. I was completely blindsided by their decision since I had missed rounds that morning and so I had no idea why a gentleman in a white coat came up and asked if I was related to my husband and could he please examine my baby.We have had our setbacks as well. There were concerns that Brynn's head is too small, that her ears are too low set, and that she has a flap of skin on the back of her neck. She also received several doses of methadone that zonked her out of her head (as you can see) which sedated her so much that she had to be put on a CPAP machine to help with her breathing (giant and hideously uncomfortable apparatus that forced air into her lungs to keep them
Now, these "abnormalities" have been pretty much rulled out since someone decided to finally weigh her. She is not 7.5 lbs as originally thought, nor is she 6.5 lbs as was the estimate last week (and what they have been dosing her at by the way). Our little premie is weighing in at a respectful but dainty 5.5 lbs. This makes the amount of pain medication they were giving her way more then she could handle and puts her in a completely different percentile for head size. Her ears are perfectly positioned by the way, which is now evident with the CPAP machine off her head (it was pulling down her ears).
Despite our share of scares this week Brynn's progress is remarkable. Her arterial line was pulled today and yesterday they stopped the high flow and then took out the nasal prong altogether. As of this evening only two IV's and a small feeding tube remain. The only medication she is taking consistently is aspirin for her shunt. Occupational therapy comes by tomorrow to check out her swallowing. We already know she hasn't lost her sucking reflex (LOVES her pacifier) and that she has pretty good coordination with being able to swallow and breath at the same time so we are hopeful that tomorrow's study will go well.
As the doctor told us today, there is no medical reason that Brynn cannot be moved upstairs to the step down unit known as 3 West. Her size and her ability to eat will be the only hurdles affecting her discharge. Which by the way, they think could be as soon as NEXT WEEKEND although that is completely up to "The Boss" aka Brynn.
We are hopeful and grateful for all of her progress thus far and cannot believe all that she has been through and accomplished in the 16 beautiful days she has been with us. Thank you everyone for all of your support, prayers, dinners, books, and encouragement. We continue along this journey in awe with gratitude and appreciation for all the gifts we have been given. Hopefully, we will have more good news to share with your soon.
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