Me and Grandma Marcie.
I like my Zebra stripe sheets.
So today we celebrated two anniversaries. The first being the 5th week in the NICU, and the second being our 3rd wedding anniversary. Neither of which were pleasant. Jason spent his morning in the hospital for clinical, and then went straight to work (in the same hospital). And, I spent it with my daughter who received more negative progress news today.
Occupational therapy (OT) came to evaluate Elise's suck and swallow technique today, and found it to be questionable, so Elise got her first barium swallow study. This test is preformed in the radiology department, so she did get to go on a field trip out of the NICU for an hour or so. The study showed that she does not effectively suck and swallow milk. And that after she starts to fatigue, in about 10 minutes, the food "pools" in the back of her throat increasing her risk for aspiration (milk going into the lungs). This being said, they worry that she would need the NG tube for an extended amount of time while she learns to botte feed, which is causing them to lean towards putting a g-tube (gastric tube) into her stomach. This tube is surgically inserted through the abdominal wall into the stomach. It remains in place until it isn't needed, usually 6 weeks or more. Jason and I are adamant that she not have this procedure, so we and the nurses are going to vigorously work with her on her bottle feeding. Because they will not discharge her home until she can effectively bottle feed which after today's news is looking like weeks and weeks.
Now you may be asking, why can't she just breast feed? Well, they want her to have 30 calories per ounce of milk, and breast milk only has 16-20 calories per ounce (30cc). They want this high caloric intake so she will gain weight and heal her lungs faster. To put this into perspective, a 30 cal per ounce diet for Elise is like a 13,000 calorie diet for Jason, based on his weight!
On a positive side she did finally gain weight yesterday, and is finally back to her original birth weight! So keep praying and hoping that she keeps gaining weight everyday.
Another negative we had today was that OT found she has a problem with her neck muscles being too tight on the left. It has a fancy name, but I left the papers at the hospital. Basically she prefers to turn her head to one side. Like when you sleep on your belly and prefer to turn your head one way, that is what she is doing. But in infants, if not corrected, causes permanent asymmetry to her face and head. OT feels they can already see that her jaw is being pulled to one side, and one cheek is higher than the other. So, we are in emergency mode to get her neck stretched out.
So, as you can see today was not the best wedding anniversary we've had, and not the best of days for Elise's progress. She did have some great visitors over the past few days. It was great seeing everyone, the support you all give us in person and from home really helps us get through each day.
We love you all, and will talk to you again on Thursday.
Love, Kristin, Jason and little Elise
2 comments:
Kristin & Jason,
Happy Anniversary. I'm sorry that things are going slow. You guys are doing great - hang in there. Lil' Elise is going down some of the same paths that my oldest went on. He too had torticolis (in his neck) some PT/OT and he did a really quick turn around. He also took (what seemed like forever) some time to learn to eat - And being a teenager now - we still can't fill him up. I know it's hard when things are out of your control but keep pushing. You guys are awesome parents and are doing wonderful.
I was so happy to finally get to meet little Elise this morning! She is absolutely beautiful. I love that red hair and her beautiful porcelin skin. I am amazed at how content she seemed, despite all of the poking and prodding she has had to put up with over the past few weeks. What a little trooper! I think she gets her disposition from her parents. Jason & Kristin, you guys are being real troopers through all of this too. This is not an easy road that you are on and you are handling it brilliantly. Sure, you're going to have your "down" days, but you're only human. Thank you for sharing your ups and downs with us on this blog. It really helps all of us who care so much for you to stay connected and involved during this challenging time.
I think you are wonderful parents are are doing a wonderful job of seeking the best medical care for your daughter. I hope that "anonymous" knows that you are are not concerned with a "litle scar" and have your daughter's best interests at heart. What a ridiculous and unsupportive comment to make in light of a very difficult and trying situation. Hopefully future comments on this blog will be supportive rather than critical. This is not the place for that kind of negativity. Sorry to turn into a "mama bear" there, but that rubbed me the wrong way and my first instinct is to stand up for my family! Okay, I'm going to take some deep breaths now. :-)
Love,
Christy, Shad and Connor
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