In light of the fact that things have slowed down considerably, we thought we would open a blog entry up for questions. A few people have asked us a few questions that we have not covered recently, or at all for that matter, and we realized that there may be many more that we can and would love to answer. We will be happy to answer anything from a medical question to a personal question to any random questions you can come up with. We thought this would give everyone an opportunity to catch up, if you would like, or just satisfy your curiosity.
We will go back to this entry for a week and answer questions as they come.
As far as an update on Karsie, she is still plugging away. She's about to hit her cranky time of the day as she is waking up from her nap during our afternoon walk. She has been a little eater today as she has eaten on average about 40 mL orally. No real spitups to report. We have another pediatrician appointment Friday and we are curious to see how much she has gained. Think fat thoughts...
Just to let you know. All four of my kids were cranky in the afternoon before dinner. It's close to bedtime and they're hungry so they have to et their energy out.
ReplyDeleteQuestion...is Kevin off of work for a while? Are you guys planning on coming back home soon?
Frances
Kevin was given an enormous gift from the Board and teachers in the district that made it possible for him to be home until January. The goal at this point is to keep Karsie close to her doctors while followups are frequent. We estimate in about 4-5 weeks we will start to think about our return to Bakersfield. We will definitely keep you posted on that, but for now that is the plan.
ReplyDeleteHow often does this happen to babies?
ReplyDeleteNot very often. We have seen a wide range of statistics, but we think it's somewhere around 1 in 10,000 for our situation. The omphalocele itself is shorter odds like 1 in 4-5,000, but Karsie had a giant omphalocele and had no genetic abnormalities, so that bumps up the odds. The rupture of the omphalocele at birth is next to unheard of. Sometimes it ruptures in utero but pretty much never post birth.
ReplyDeleteI thought you were commuting from Bakersfield....
ReplyDeleteWhat a great gift you were given!
Do they suggest any therapy for Karsie because she spends so much time on her back, or do you position her on her side to sleep Or....?
Is she sleeping through the night?
Does she recognize your voices?
Does she still need the tube at her cheek?
Michelle, are you able to stay home with your little girl?
ReplyDeleteKevin was commuting on the weekends from Bakersfield, but now he is able to stay in San Diego. Michelle has always been in San Diego since the beginning of June.
ReplyDeleteTherapy - Karsie has regular physical therapy appointments, but they are mostly checkups. She is doing fabulous with her muscle growth and control. She can move her neck and even lift it for short periods of time. We are working with her on strengthening by doing very small exercises and giving her opportunities to strengthen. Also, the time on her back was a concern in the NICU so the nurses would move her head and position regularly to even it out. She is now able to sleep on her sides, so aside from a big lump on her belly she sleeps just like any other infant.
Sleeping through the night - We lucked out a little with this. Because she gets fed regularly by tube she doesn't wake up much at night. We have to stay up a lot to fill the tube, but she rarely wakes up for more than a few minutes when she wakes up at all. She probably gets a good 8-10 hours a night where she sleeps straight through. This will change when she starts to eat more food orally as she will get hungry and really let us have it.
Our voices - We have no real proof that she recognizes our voices, but typically babies recognize mom immediately and dad within a week of birth. What we do know is that people that she has been in contact with more have the ability to sooth her easier. This may be because she is soothed or because we have learned by being with her what makes her happy.
Tube - Yes. her tube will be in until she can eat everything orally. Right now that is 70 mL every 3 hours. She is probably averaging about half of that every time she eats orally, but we've seen a significant increase the last couple of days.
The comment about staying home - Michelle is currently home with Karsie. She will be until probably at least January or February. If you are asking about staying home full time that is not the current plan, but we're looking into a lot of options now.
ReplyDeleteI remember early on you were fearful that Karsie's lack of blood flow to her brain during her first hour of life may have caused some damage. Have there been any updates about that? I had been praying about that, so I thought I'd check in.
ReplyDeleteKarsie has had 3 EEGs. The first two showed a pattern of brain activity called "burst-suppression." The most recent didn't have any of that. It was still not 100% normal, and had some artifact, but we were told that babies move and cause artifact to show up. When we were talking about discharging, we opted not to do an MRI. The results probably wouldn't show anything that we would need to treat, and the procedure would require sedation. If we see problems with neuro-development then we can have an MRI done as an outpatient if we feel it is needed. As of now, her neuro-development is good and she has shown no visible seizures. Our prayer is that if there was any damage to the brain that it would have corrected itself and there will be no lasting problems.
ReplyDeleteHey guys! I wanted to comment about her O rupturing during birth. I have a friend that started a foundation in memory of their O baby. His sac ruptured as well during birth and he had a whole list of issues wrong besides the Omphalocele. A LOT of breathing issues. Their foundation is www.jacksongraves.org
ReplyDeleteThis family lives in the same area that we do here in Arkansas and I have become very good friends with the Mother. They have done some wonderful things since starting the foundation. And, last year I got to speak at their big event about Omphalocele's.
Anyway... it's so good to hear that Karsie is doing so well!
Hugs - Tiff
I'm so glad to hear that Karsie is doing so well! I've been following & praying for you all for a while but have never posted a comment.
ReplyDeleteThis is definitely a random & totally insignificant question: What is that cute pink & white thing with the flowers? Karsie is laying on it on the button and in a more recent picture too. It is so cute & I've never seen anything like it!
Hi Michelle & Kevin,
ReplyDeleteI so respect how you have shared your journey with all of us. Sorry I missed Karsie at church, maybe next time. People have asked good questions, so I have none for now. My comment? She is adorable!!! Much Love & Prayer, Cynthia
We love random questions. I assume you are asking about the snugglie that has the two straps that wrap her up. The hospital had a bunch and Michelle looked at it, took a picture, and sewed one together from scratch. She's amazing! (This is Kevin by the way...not Michelle trying to toot her own horn). It's been a wonderful addition to her sleeping routine as it wraps her up like a little cocoon.
ReplyDeleteThank you Cynthia. See you soon; maybe this Sunday.
ReplyDeleteWell I love it! I'd definitely buy one... I've actually been looking on Etsy already but couldn't figure out what to call it :o)
ReplyDelete