Our Quiverfull - Happy news, sad boy

Feb. 8, 2008

Happy news, sad boy

We've had good news on a couple of fronts since I blogged yesterday. First, Noah's cardiology appt./echo went well yesterday. His heart is no worse and the current dose of medicine seems to be working. He won't need another echo for 6 weeks! His cardiologist couldn't resist taking a quick listen to Mary Faith's heart as well and it sounds just fine. She will need a baseline echo at some point, as will the other children, but there is no rush there and no cause for real concern - just an abundance of caution.

Second, we got to say "bye, bye biliblanket" today! Yesterday Mary Faith's bilirubin levels were actually UP a tiny bit from the day before and we were all quite concerned. Since she was away from her blanket for 8 hours while we were out of town yesterday we were sure that the numbers wouldn't be any better today - but they went down almost 3 whole points, putting her firmly in the "no worries" category. YAY! We are so thankful that we could do the therapy at home, but I am very glad to be finished. I want to be able to dress my little sweetie in something other than a glowing blanket LOL and we are already enjoying the freedom to move her around the house, let her try out her swing, etc. Just being able to sit and nurse her somewhere other than my room is nice. Her blanket was attached to a large box which was plugged into an outlet and was just hard enough to move that we just kept it (therefore her) in our room.

For some reason that no one can determine, Noah is not doing very well. No emergency, no fever, nothing we can pinpoint - but he is sadly and quietly crying a lot even if snuggled or played with. He looks "off" and his nurse was pretty concerned when she was here checking Mary Faith. She looked him over very well (even heard a few tiny rumbles in his intestines which is very promising) but couldn't find anything wrong. He has been sad and "off" for a couple of days now with each day worse than the one before. I would love to say that it is a result of his big day yesterday but I can't since he's been like this for a few days. He just acts like he doesn't feel well AT ALL. It could be something from the C. Diff. We just don't know.

He is also really, totally melting down in the food department. His clear-liquids-only diet means water in his sippy cup (all he has ever had in there anyway), natural "jello" jigglers, and some natural fruit snacks that are clear and dissolve when he eats them. He had been relishing these items, and seemed to identify them as real treats. Well, the honeymoon is over. His diet has been made up of lots of bread and cereal and crackers and steamed veggies, none of which he can have now. He identifies those sorts of items on the table and just weeps and begs for them. "His" food isn't a treat anymore (in fact, the sight of it is pretty offensive) and he wants his old favorites back. It is to the point that we have to put him in the other room in his chair with a DVD at dinner time, but even that didn't work tonight as he figured out what we were doing. A friend brought some chicken and dumplings and I spoon-fed Noah some broth which he relished, but he quickly fell apart again because he wanted the food itself as well as the broth. There is no way to explain why we are denying him the single top pleasure in his life and it is clear that we are hurting his feelings by denying him. We are at least weeks away (at BEST) from any solids at all. I truly believe that only prayer is going to help him right now in these regards - the not feeling well in general and the food issues as well. Please pray specifically in these regards. He has suffered so many really big things and it breaks my heart to deny him the simple joy of a cracker or bit of homemade bread, especially when he just doesn't understand at all.

(I can categorically say that none of us believe that the new baby is the cause of Noah's slump. He is getting TONS of TLC from me, his daddy, and all of his siblings. When he is happy he is perfectly happy and cheerful, then he seems to suddenly feel bad and gets sad and weepy as well. It seems related more to a physical discomfort than anything else. )

Some of you have asked about putting Noah on some probiotics. He has actually been taking them for a couple of months now. We aren't currently giving them because it seems highly unlikely that they are going to move into the intestines where they are needed, AND because we are supposed to restrict g-tube medicines to his cardiac med and his antibiotics. The probiotics need to be mixed with water which would increase the volume being "shot" into his tummy and could make vomiting more likely. In the current scheme of things, we can't risk him losing the heart medicine or the antibiotics - his ability to take them must be protected right now. When he tolerates more volume by mouth we will certainly restart the probiotics. We appreciate the suggestion very much - it is great advice and something we wish we could do right now.

I am going to run and fix Noah's TPN in the hopes of an extra-early bedtime for him tonight. I am hoping that he will sleep very well and have a turn for the better tomorrow!

Blessings,
Kate

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Comments

Feb. 8, 2008 - Praying For Your Family

Posted by ShayC

I continue to check on the status of Noah and your family...we will pray for your specific needs mentioned in this post. Mary Faith is so beautiful!! May God continue to hold you and your family in the palm of His hands.
With love and prayers,
Shay Carr
Enoree, South Carolina