Deb and I reflected on 2008 tonight. We can't say it has been the easiest year ever, but we are thrilled that at the end of the year we have a darling daughter in our lives. As usual we can never truly predict or direct where life will end up, and that has been so true this year.
We sincerely hope that 2009 will bring great things to you all and to Grace. Happy New Year!
No Change
Tuesday, December 30, 2008
The good news today is that there is no increase in the size of Grace's ventricles. That makes us happy since we want to avoid a shunt if we can. Her eye test yesterday was also normal. Lots of good news.
Grace wore a cute little outfit from her Aunt Sheila today. I was busy at work, but got to the hospital in time for her 8 p.m. feed and to change a disgustingly poopy diaper. Is it okay to say "poopy" if you are a grown man?
Grace wore a cute little outfit from her Aunt Sheila today. I was busy at work, but got to the hospital in time for her 8 p.m. feed and to change a disgustingly poopy diaper. Is it okay to say "poopy" if you are a grown man?
Chunky Munky!
Monday, December 29, 2008
Our little Grace is packing on the ounces. She now weighs close to five and 3/4 pounds. Wow! That surprised me. She is starting to look much more like a baby and even has some baby fat and some chubby little legs. She is almost within a month of her due date now, so she is doing what she is supposed too. No other big changes today. The all important Tuesday head ultrasound is tomorrow. Always makes me nervous.
Beckwith-Wiedemann Syndrome
Sunday, December 28, 2008
We think it is possible that Grace has a condition known as Beckwith-Wiedemann Syndrome (BWS). It is a genetic condition that primarily involves overgrowth of several organs in infants. Not all children have all of the possible signs of BWS, but some of the most important ones include: omphalocele, macroglossia (large tongue), hypoglycemia (low blood sugar), high birth weight, Nevus flaemmus (stork bite), and ear pits/creases.
Grace does have quite a few of these, specifically the large tongue, omphalocele, high birth weight, "stork bites" and possibly ear pits and creases (although Deb and I disagree on the last two). Obviously kids can have these finding separately without having BWS. For example, millions of kids have the stork bites on the eyelids and forehead without having BWS. But taken all together, having 3 or more of these signs means a likely diagnosis of BWS.
For the most part, diagnosing Grace with BWS does not really change very much. Her care will be exactly the same, and we still have the same issues to help her with. Probably the potential for CP may be more of a hurdle than BWS, particularly since most children with BWS grow up to be perfectly normal adults. (Sorry about all the acronyms - get tired of typing it all out!)
There is one area, however, that is concerning regarding BWS. Children with BWS have a 1 in 5 risk of developing some childhood cancers. Usually a tumor of the kidney known as a Wilm's tumor is the culprit. Caught early, this tumor has a 94% cure rate, but curing it involves surgery and chemotherapy. For this reason, BWS kids are screened every 3 months with an ultrasound and blood work for tumor markers. Most of these tumors occur before age four. Screening is recommended up to age eight to catch the rare late occurrence.
If you are curious about BWS, there are some good websites that provide much better information than I can. Try here or here, or just "Google it."
From our standpoint, this doesn't make much difference to Grace's outcome or any difference to her place in our hearts. She will receive excellent care, she is loved beyond belief, and we have a wonderful support system in you all.
Grace does have quite a few of these, specifically the large tongue, omphalocele, high birth weight, "stork bites" and possibly ear pits and creases (although Deb and I disagree on the last two). Obviously kids can have these finding separately without having BWS. For example, millions of kids have the stork bites on the eyelids and forehead without having BWS. But taken all together, having 3 or more of these signs means a likely diagnosis of BWS.
For the most part, diagnosing Grace with BWS does not really change very much. Her care will be exactly the same, and we still have the same issues to help her with. Probably the potential for CP may be more of a hurdle than BWS, particularly since most children with BWS grow up to be perfectly normal adults. (Sorry about all the acronyms - get tired of typing it all out!)
There is one area, however, that is concerning regarding BWS. Children with BWS have a 1 in 5 risk of developing some childhood cancers. Usually a tumor of the kidney known as a Wilm's tumor is the culprit. Caught early, this tumor has a 94% cure rate, but curing it involves surgery and chemotherapy. For this reason, BWS kids are screened every 3 months with an ultrasound and blood work for tumor markers. Most of these tumors occur before age four. Screening is recommended up to age eight to catch the rare late occurrence.
If you are curious about BWS, there are some good websites that provide much better information than I can. Try here or here, or just "Google it."
From our standpoint, this doesn't make much difference to Grace's outcome or any difference to her place in our hearts. She will receive excellent care, she is loved beyond belief, and we have a wonderful support system in you all.
Loot!
Saturday, December 27, 2008
It looks as if Grace robbed a bank or something. I can't believe the swag she has hauled in for Christmas this year. What a generous and thoughtful bunch you all are! We are truly blessed.
We are pleased to say that she also had another great day today. She just seems to be more stable and drops her oxygen saturation a lot less. The pressure on the CPAP that they are using is slowly being reduced, so hopefully we can start some trials without it next week. That is at least our plan. The docs may have other ideas.
We also may have a possible diagnosis for Grace, other than prematurity. I will talk more about that tomorrow. Have a great night, and if you are in the Indianapolis area, try and stay dry. What a weird weather pattern we are having with temps in the sixties in December.
We are pleased to say that she also had another great day today. She just seems to be more stable and drops her oxygen saturation a lot less. The pressure on the CPAP that they are using is slowly being reduced, so hopefully we can start some trials without it next week. That is at least our plan. The docs may have other ideas.
We also may have a possible diagnosis for Grace, other than prematurity. I will talk more about that tomorrow. Have a great night, and if you are in the Indianapolis area, try and stay dry. What a weird weather pattern we are having with temps in the sixties in December.
Friday, December 26, 2008
Just a quick note tonight I am in Ohio visiting my family and Deb is caring for Gracie. She had a lovely day and was in Deb's arms for the entire day. When I stopped by this morning she was bright eyed and bushy tailed and ready for a chat. Grace has had comments and calls today from places as different as Dublin and Houston. Big catch up post tomorrow when I get back in town. It's hard to do this from my phone. Love technology!
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