Despite our decreased doctors appointments and hospital stays, we have been staying quite busy here. Brian has officially been approved as a McDonalds owner/operator, which has been keeping him busy, including a three day stay in Chicago this week. Morgan, our amazing nanny, has been working more hours this summer while she is off from school. She is such a blessing in our life. She is extremely dependable and good with the girls. Her increased hours has given me more of an opportunity to get out of the house. I have the occasional lunch dates, but I have become very passionate about volunteering (returning to my high school roots). I can’t commit to a job right now with the upcoming surgery and Alida’s unpredictable medical needs, but volunteering is a perfect fit. I will elaborate more on that some other time. Another thing I did recently was go on a girls’ night with Corrie Bohm on 6/5/14. We did a canvas painting class at Greenwood Hills, put on by Gretchen from Clay House. We had a fabulous time painting our dandelion canvases. On a last minute impulse I added “Believe in Miracles” to my print.
Alida has been pulling her oxygen cannula off her face at least daily lately. Her cheeks were starting to get raw. On Wednesday 6/11/14, just before it was time to start our bedtime routine, she ripped her oxygen off while sitting in her high chair (she still is not taking anything by mouth, we just include her on family dinner time). I decided to carry her upstairs without it, no strings attached. It was so nice not carrying around her flow meter and getting caught on every corner, loose shoe or toy, and the dog bed with her yards of tubing. After about 10 minutes I noticed she wasn’t her normal no-oxygen-blue color. I grabbed the pulse ox to check her sats, 85-88! Previously without oxygen she would drop into the 70’s within 5 minutes. We left her without oxygen and the pulse ox on overnight. She did great. We are now going on a week of no oxygen! She is even more beautiful without her oxygen. After 322 days, she is finally oxygen free.
Everyone wants to know, does this mean no surgery? What is the physiological reason she is off oxygen? Humans develop new lung sacs until they are about 8 years old. Given that Alida is finally a little bit bigger than her past several stagnant months (she is now 5.69kg or 12# 8.7oz), she has developed more healthy lung tissue and has likely outgrown her “preemie” lungs. We have informed our cardiologist of the change. While he was excited about it, he seemed to imply it was likely due to her lungs, not her heart. There is the small chance that her right ventricle is finally getting bigger and more efficient. If that’s the case, they will find that out during the 7/21 cath lab. Then the decision can be made if surgery can be moved out or cancelled. This is unlikely, but we will try to believe in miracles. Even if she still needs the Glenn procedure on 7/23, being off oxygen will help with the success of and recovery from that surgery.
Lucie is into everything. She wants to stand all the time and is becoming a very efficient army crawler. She is babbling “dadadad’s” and “babababa’s.” She has discovered the dog food and that she can take the bolt cap off the base of the toilet. She likes to put both of the aforementioned in her mouth.
We enjoyed Father’s Day as a family. We went to St. Joseph’s Hospital NICU’s 45th reunion in Marshfield and spent some time at Grandma and Grandpa Fish’s with Jeff, Aschley, and Oliver. Alida even fell asleep on her tummy (which is huge progress from previously not tolerating tummy time at all).
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hbfish 