Sunday, April 30, 2006
Week 27 (April 14-20) Update:
Sent on April 19, 2006
Dear Friends and Family,
We hope all of you had a wonderful Easter. Elizabeth certainly did! She celebrated by sitting attentively through the entire church service (Pastor Paul was in rare form) and later donned bunny ears to everyone’s delight. We managed to keep Grandma and Grandpa Harms from sneaking her chocolate. And it’s a good thing, too- because she has just come down with her very first cold. Being hospital-bound and then under house-arrest had allowed us to avoid most germs until now. She’s handling the sniffles like a champ, and now that we’ve established that Tylenol makes her loopy, we’re sticking with the Baby Motrin! This week, Elizabeth’s uncle Philip gets married, and we’re looking forward to introducing her to many on Matt’s side of the family.
In other news, last Friday, Elizabeth Turned 6 Months Old! (And yes, that means that an un-named Grandpa turned 55 years and 6 months old…but who’s counting?) It is amazing to look back over the last 26 weeks and see how far God has brought our little family- from the joy (and scares) of Elizabeth’s birth and our fears of losing her in the ICU, to the daily challenges of raising her at home. While He hasn’t always answered our prayers the way we’ve wanted, He has been faithful to sustain us through it ALL.
A lot has changed in 6 months, including the focus of our prayers. To give you a sense of what’s been going more recently, and the challenges we still face, here’s an update to the list of prayer requests that has been on the website (including answered prayers and new issues).
For those of you who don’t have time to read all the details, the short story is – Overall, Elizabeth is doing well at home. She’s growing (12 lbs. 13 oz. as of today!), learning new skills like blowing bubbles, peek-a-boo and rolling from her belly to her back. She is an absolute angel. She struggles to meet her nutritional goals and the whole “GI/Nutrition-arena” is a daily source of stress for Sara as she tries to encourage Elizabeth to eat. We’re still stuck in a 1-puke-a-day routine, but her growth encouragingly continues on track. The most recent round of doctors’ appointments revealed several areas of possible concern with her heart & muscle tone (see below). We are again reminded that unless God chooses to heal her completely, Elizabeth’s health will likely always be complicated. We need grace to face the unknown future with hope and courage.
Now for the nitty-gritty…
Elizabeth’s Heart: When the surgeon repaired the abnormal section of her aorta, he was unable to reach the furthest section of narrowing. We are praising God that her last echocardiogram revealed that this last section of narrowing has moved to a more favorable location- where it is less likely to cause problems and be easier to repair if need be. Unfortunately, that same echocardiogram showed two previously unseen abnormalities in Elizabeth’s heart, a thickened/stiff mitral valve and a small hole between the right and left ventricle (allowing small amounts of unoxygenated blood to bypass the lungs and directly enter the body’s circulation). Neither abnormality is causing symptoms currently, but will be followed very closely by her cardiologist. If either becomes a problem, open heart surgery would likely be required. Pray that these abnormalities would resolve spontaneously.
Elizabeth’s Inguinal Hernia: “What hernia?” you might be asking. We just discovered it last week during a Daddy-diaper change/physical examination (it’s hard to leave my job at work sometimes). It almost always needs to be repaired surgically. We are crushed at the thought of subjecting Elizabeth to yet another surgery! Just this month, Elizabeth’s age in months was finally larger than the number of surgeries she’s had (five!). Pray that the hernia would disappear (and quickly- our appointment with the surgeon is in 1 week).
Elizabeth's Infant Development: Two months on her back in the ICU and a poorly formed cerebellum have definitely slowed some areas of Elizabeth's development. Her social interaction, language, and fine motor development are "on-track." She is the smiley-est baby we’ve ever met and loves to sing/gurgle/blow spit bubbles. She has also learned to roll from her tummy to her back. However, her gross motor strength, head control and "tone" are behind. We have a physical therapist from the March of Dimes working with her to improve this area. Pray that her muscle tone will develop and that she will rapidly gain the strength she needs to keep her head up, roll over, sit up and eventually walk.
Elizabeth's ability to feed: Her suck and swallow reflexes were initially damaged by nerve injury during her surgery and by disuse while hospitalized. Since coming home, those problems have completely resolved. In fact, last week we introduced her to rice cereal. She seems to hate the taste and texture, but has already figured out how to swallow it down.
Elizabeth’s growth: Despite not eating the amount the nutritionist has set as her “goal,” Elizabeth continues to gain weight. Her legs have gotten a bit chubbier and she’s finally fitting into those 3 month-old clothes. If she continues to gain weight for 1 more month, her feeding tube will be able to come out! Praise God that we haven’t had a single one of the complications feeding tubes can produce (infection, skin breakdown, intestinal blockage, popping out, etc). Despite all the growth, we have to practically force Elizabeth to eat. Unless she is completely starving, she is almost completely disinterested in food- possibly due to the nasty taste of the special formula she started with. As a result, Sara spends too much of her day coaxing food into Elizabeth, and then fighting to help keep it down. Please pray that we would find a formula that Elizabeth actually enjoys, something that she finds both tasty and satisfying.
Elizabeth's reflux problems: Although her reflux problems were very severe initially and led to frequent vomiting, things have improved greatly in this area. We have even been able to reduce the number of reflux medications she requires from three to just one! Though she still vomits several times weekly, it no longer blocks off her airway. Pray that her reflux will continue to diminish and that her vomiting will cease entirely.
Elizabeth's voice: from the same nerve damage during surgery, Elizabeth's vocal cords didn't function properly initially, and we feared they might be permanently paralyzed. Their function continues to improve, and now she makes the cutest coos and babbling I’ve ever heard. Taking the bad with the good, she also cries much louder! We are so grateful that God has healed this area.
Elizabeth's Cerebellum: Somewhat lost in the emergency of her heart surgery is the fact that Elizabeth's cerebellum and adjacent brainstem region are incompletely formed. Continue to pray that her brainstem and cerebellum will continue developing past their normal time or that other areas of her brain will take over the vital functions and minimize any potential symptoms.
Elizabeth's Turner Syndrome: Turner syndrome is a condition caused by missing one of the usually-paired X chromosomes. How and why it happens is unknown. The end result includes many of the abnormalities Elizabeth has already suffered from. But there is a very long list of potential effects that could occur as she ages. These include poor growth, hormonal imbalances and learning disabilities, to name a few. Ask God to limit the boundaries of Turner Syndrome in her life, preventing it from doing any more damage than it already has. If you are interested in learning more about Turner Syndrome, check out www.turner-syndrome-us.org.
Thanks for hanging in there with us for the long haul. We covet and appreciate your prayers and support.