Tuesday, May 11, 2010

Isabella Update

• As of today Isabella is 5 months and 2 days old and weighs 8 ½ lbs. My prediction is that she will be filling out her newborn clothes sooner than she filled her preemie clothes.

• She has rashes on her thighs and I’ve never been happier…. Rashes on her thighs means rolls of baby skin. =D

• 2 weeks ago, the fluid in her ears were drained and ear tubes were put in. A sedated ABR followed after that surgery and the audiologist told us that she has NORMAL hearing for both ears! (Alleluia!). When the audiologist told us this, my husband and I were in complete shock. As the audiologist went on and on blabbing all these highfaluting medical jargon (decibels, decibels, mega hertz, mega hertz) I had to stop her midway and told her “So doctor, all these medical terms aside, you’re telling us that our daughter can hear normally?”, and she replied “Yes.” I then said that that’s was all we needed to hear. When my husband and I looked at each other we were both welling up with tears of joy.

• When I asked the doctor if my daughter will eventually talk because now she can hear, she said that she does not know and cannot predict accurately because of the speech and language issues associated with WHS…. But with normal hearing, I feel that my daughter now has a better chance.

• The news about Isabella’s hearing was the first piece of good news that we’ve heard about her. It seemed that nothing else mattered after that. She can hear us! =D

• G tube surgery went well. Isabella had to stay in the hospital for 2 nights after surgery, but instead of getting a room at the hospital, she was placed in NICU. She was in the NICU not because she was critical, but because the anesthesiologist and GI doctors felt that that would be the best place for her so that she will have 24 hour nurse care… which also translates that my husband and I were able to go and have 2 nights of decent dining-out, and 2 night’s of good sleep.

• You know how some places get associated with certain memories? Well the hospital and the NICU are places that I have associated with bad news…. Those places have redeemed themselves that weekend.

• Isabella recovered well from both surgeries. We were amazed at how strong she is. She didn’t need pain meds on her second day at the hospital and she did not need pain meds at home as well. There were also no signs of infection at the site of the stoma nor was there ear infection. I should change her first name to “Super”.

• We made a good decision to switch from and NG tube to a G tube. There has been less coughing and sneezing (that causes throw ups) because the tube is tickling her nose, or when she tries to cough it out (a reflex) because something “foreign” is caught in her throat. AND because she does not have her NG tube, there have been less staring from the “curious population”, which means I have less instances to stop myself from losing control when I have bouts of the “defensive-mommy” feelings. We were also able to bring her to church on Mothers’ Day… our very first Sunday mass as a family.

• There have been less throw ups (they were absent the first week), both in frequency and in volume. We do not give her the Erythromycin anymore for her stomach motility (although we still have not received the OK for that from the GI doctors). She still gets Zantac for acidity, Cefalexin for her kidney reflux, as well as the iron and multivitamins.

• Isabella’s repertoire of sounds have changed considerably ever since the fluid was drained in both her ears. She’s been cooing more, louder, a lot more shriek-like sounds, and a plenty of back and forth when we talk to her.

• Recently, Isabella has been more active. There is a lot more air boxing and air kicking. She has discovered her hand and would put it in her mouth. She’s getting better and better at tracking and on occasions would turn her head to follow me when I walk across the room (did it while she was sitting on my husband’s lap, and has done in while lying in her crib). I also think that Isabella is at the throes of discovering her feet.

• Recent lab check regarding the creatinine level in her blood to check for kidney function have been in the normal range… yes without the help of the sodium bicarbonate. Her nephrons are working really hard…. Her kidneys may be small, but they are hardcore!

• Although she’s five months old, she manifests behaviors that would be at the 0 to 3 month developmental range, size wise she belongs in that range as well. HOWEVER, this does not mean that she is not progressing…. SHE IS PROGRESSING steadily at her own pace.

• We told the OTs, the infant specialist and the PT to stop services for two weeks. Services will resume next week. I can’t wait until Isabella surprises them with her new tricks!

• I love her smiles. She smiles at us more and more each day. Recently her smiles are accompanied by cooing sounds and sometimes some shrieking. She is the happiest baby that I’ve met. If she’s happy, what is mama so worried about, right? =D

 To read about Isabella's previous developmental update, click here

7 comments:

Kristy said...

Way to go Isabella! What great news all around. I am so happy for you all. Keep all the updates coming they are really great to hear. :)

Михаела said...

I'm so happy for you! Wonderful news! Isabella is a little trooper, she'll be great!
Sending blessings your way,
Mihaela

Hannah said...

All great news!! SO glad that the surgeries went well. The g-tube is a really tough decision, but you said, the best one we made for Riley also. You will be amazed at everything Isay will start doing. She is a little miracle baby.

Heather said...

My son must be just a week or two older than your daughter. He was born November 25th and was diagnosed with WHS three weeks later. I've enjoyed reading through your blog and am so pleased to hear that Isabella is progressing!! And it's especially great to know that she HEARS you and SMILES at you! My son's first smile (about a month ago) gave me a peace of knowing that, no matter what else happens, we were going to be okay!

Lauren said...

This is all such great news! So glad that Isay can hear and glad that her surgeries went well. She is really progressing. And since she can hear... tell her that we love her.

:)

Melissa and Luke Young said...

YAY For all the positive points in your post. She sounds like she is making fantastic progress. I LOVE that she is making more sounds and smiling at you... All this is priceless... ENJOY!!! x

Kisses4Kaylee said...

Wonderful news, Madonna! Everything seems to be going so well for Isay; she is strong, just like her Mommy. I have her in my prayers every night; may she continue to make you smile! xo