Our Quiverfull - HAPPY Valentine's Day :-)

Feb. 15, 2008

HAPPY Valentine's Day :-)

Greetings from your friend The Inconstant Blogger. :-) There hasn't been any earth-shattering reason I haven't written - just mind-numbing fatigue! It's funny (or maybe not) that I have had a hard time ever really getting the rest I needed after Mary Faith was born. Our family doctor doesn't do hospital admissions any more so Mary Faith was seen by the in-house peds rotation . . . including a number of residents who EACH had to come see her individually, then in a gaggle, err, group.   My doctor was in and out and the nurses were in and out - all very nice and very competent, but with an unerring sense of timing in that they only ever came in when we were sleeping. :-) We came home the Friday night after she was born (on a Tuesday) and then had to spend 5+ hours in the hospital lab on Sunday while they followed up on her bilirubin. The next week brought daily nurse visits for Mary Faith, some nurse visits for Noah, and a trip to Greenville. Since I had to "up and at 'em" so very soon after coming home, it has been hard to give myself permission to back up and really rest . . . . and it has caught up to me the last several days. If I get a couple of solid days of rest followed by maybe a nap each day for a week or so, I can bounce back really well after having a baby. Now I'm learning that my advanced maternal age I can't afford to ignore how weary I am.   Jeff has been working every Saturday as well as M - F so he hasn't been here to point out the error of my ways, but he's made it pretty clear that it's time for me to slow down for a bit.

Mary Faith is a GREAT sleeper. I absolutely had to get some groceries yesterday and with Jeff working Saturdays I couldn't wait and have him do it. Mary slept all morning while I did stuff around the house, nursed right when it was time to go, and slept all through the errands. I kept staring at her thinking that I wished I was at home napping with her instead of shopping LOL. She sleeps one 4 - 6 hour stretch every night and has since the day she was born, so if I can just rest a bit during the day I think my energy will come back pretty quickly. I just hope my brain comes back with it . . . .

We had a GREAT Valentine's Day yesterday. I called the Peds GI office and very plainly stated that Noah's diet (lack of diet) was becoming increasingly and incredibly traumatic for him and the rest of the family and that we HAD to find some middle ground. He has grown more distant and sad and started refusing to have anything to do with me - screaming hysterically if I tried to hold him or kiss him. He would only seek me out to plead for food, and each time I had to deny him he was shutting himself away more and more. Since Noah's nurse has started hearing bowel sounds when she visits, the GI doctor agreed to let Noah eat little bits of relatively bland foods. We aren't to encourage eating, and need to avoid it when it won't be traumatic, but he doesn't have to sit and cry in another room when others are eating at the table.

Let me tell you, I don't think anything has pleased me more than to give my dear baby some crackers and cheerios yesterday! He was so surprised and so happy and kept beaming these radiant smiles at me. He was actually laughing between bites. He didn't eat much at all, which is fine, but he wasn't being denied any more. I honestly believe he equated the denial of food with a true rejection by his mommy. He was like a new boy all day yesterday. He played and crawled and laughed. He kept seeking me out and kissing me all over my face and snuggling with me. Late yesterday afternoon he got in my lap while I was nursing Mary Faith, and he let me snuggle him and sing to him for probably 30 minutes. It was glorious. He is just as happy this morning. Hannah gets him out of his crib each morning and brings him to me so I can give him a dry diaper. He had been screaming at the sight of me and clinging desperately to Hannah - a truly awful way for me to start my days. This morning he lunged for me and wrapped himself around me like a little koala bear. I can't tell you how much I've missed fellowship with my sweet boy and how precious it is to have things right between us again.

Jeff took all of us out to eat last night for a Valentine treat. We couldn't have gone if Noah hadn't been able to bring his little bag of cereal and crackers. We had a wonderful time. We went to a Japanese steak house where they cook the food in front of you. Jeff and I had been for dinner before but had only taken the children for lunch there a couple of times due to price. The lunch show is good, but the dinner show is great. Our family of ten requires an entire hibachi table LOL so we had a private room and a lot of fun. The chef was one of the best we've ever seen and the children were amazed and thrilled at his antics - juggling knives, throwing eggs, making flames, etc. Noah enjoyed everything except the fire. :-)

Mary Faith slept through it all, which was nice for me. She is a great nurser and has surprisingly long periods of calm alertness, but just seems to time things so very nicely as far as sleeping when I want her to sleep and waking up to nurse at the most convenient times. She isn't fussy at all unless she needs something. She does spit up a little bit, and this has taken getting used to. Only one of our other children ever spit up and that was many years ago. I'll be honest and say that Jeff and I still find our hearts racing each time she spits up. I didn't think it would be hard to mentally separate Mary Faith from Noah, but just the quiet sound of Mary Faith burping or spitting up a little will bring both Jeff and I right out of a sound sleep instantly. When I pick her up at night to roll over and nurse her on the other side, I first sweep my hand around her feet to grab any TPN and IV lines (you know, the ones that AREN'T there!) and any time someone picks her up I have to restrain myself from telling them to watch out for her broviac (the one that ISN'T there). I wonder how many more gray hairs I have from the micro-seconds of panic I've experienced when a little one has rubbed or tickled on Mary Faith's chest where Noah's broviac is. Of course, I always very quickly realize that these things aren't an issue at all, and it isn't at all like we are consumed with fear over Mary Faith. It is just that I am surprised by how very often I instinctively react as if Mary Faith were Noah. I hope I outgrow this phase soon. I have enough gray hair. Other than those surreal moments, I am enjoying this precious girl more than I can possibly say. Who can ever get enough of the sight and feeling and smell of a newborn baby? My poor children don't get to hold her nearly as much as they would like to, because I don't want to put her down. She is an astoundingly beautiful infant with delicate features and the most amazing hair. Her eyes get bigger every day and I can't believe how long and full her eyelashes are already. She has the entire family eating out of the very tiny palm of her very tiny hand!

The other children are doing well.   We are easing back into school again. This is another area where I need to have a reality check. It doesn't seem real yet that I could actually be home for a long period of time. If/when Noah is admitted again, it will almost certainly be Jeff who stays in the hospital with him since Mary Faith is nursed exclusively and couldn't possibly be left behind. All of my bouncing back and forth has resulted in "survival mode" homeschooling - just the basics. I've had to let go of a lot of things I wanted to do and wanted to teach because I am not here most of the time. We have had to choose things that are easy for Daddy or anyone else to pick up and work with. Now that I hope to be home for a long time, I have enjoyed reviewing the children's progress, tweaking things, making plans to add in some things that have been set aside, etc.   They are (for the most part) eager about the changes as well. Before 8:30 this morning little David asked me three times when he could start his new typing program LOL.   I'm still keeping things as simple as possible and choosing things with less, rather than more, teacher involvement necessary. I hope this means that when I am home I can add in extras and be more involved, but if I have to go to Greenville for the day or if Noah is in the hospital and I want to spend the day up there, then things can still mostly run on auto-pilot.

The only real cloud on our horizon right now is that Noah's C. Diff. was not cleared up from the first round of Flagyl. He has been off for a few days but will be starting another round today. We had so hoped that his would be one of the cases that just responds quickly to antibiotics and goes away with the first round. The longer he has this infection the longer he is at greatly increased risk for all sorts of increasingly serious complications. We have been so happy to hear his intestines waking up a bit and I just want this bug to go away before more damage can occur.

One more quick thing before I go - we very frequently hear from dear readers who suggest that Noah could have celiac/gluten issues, food allergies, or environmental allergies (carpet, dust, etc.). Allergies and celiac diease are some of the first things that Noah was tested for almost a year ago and allergies are not the issue. Noah has two mutations in his mitochondrial DNA. There is no dietary adjustment that will fix this. All of his nutrition comes via a central line (his broviac) into his aorta. There is no gluten or allergins in it.   For many months he had only TPN and no nutrition by mouth at all, but his disease continued to progress. A few months ago he started eating minute amounts of food but this is only for the pleasure and social value of eating, not for nutrition. His condition does not change whether he eats or doesn't eat. We are so enormously thankful for all of you who take the time to offer helpful suggestions and we wanted to reassure you all that the allergy and diet issue has been explored very thoroughly. :-)

I'm still working on Mary Faith's birth story and a really nice slideshow of pictures, but for now I'll leave you with on picture of all of us the day after Mary Faith was born. It was no easy task getting all of the children looking good in a picture at the same time, but I was pretty pleased with this one. I PROMISE I don't always look this tired! :-)

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Feb. 15, 2008 - What a wonderful report!

Posted by Jaynee

We've continued to pray for your dear family, little Noah and precious Mary Faith (I just love her name btw). Thank you for sharing that family picture...what a happy, sweet family!