Hi everyone! Bear with me, I'm just getting started on this "blog thing." The soul purpose of Alayna's blog will be to inform everyone of her progress as we move forward on this challenging, adventurous journey. And of course share fun times with everyone! Each milestone will be an exciting time and we'll make sure to capture it for all of you to see.
Here is a bit of her background since some of you may not be aware of what's been happening. Alayna was born January 29th and spent 5 days in the NICU at Trinity 7th Street due to pulmonary hypertension and two holes in her heart. The holes completely healed and we thought we were in the clear. However, on Good Friday, she was admitted to OSF Children's Hospital in Peoria due to a temperature, high white blood count, and high protein count. After many tests were done during our 5 day stay, it was discovered that she had a urinary tract infection. While we were there she also had an MRI, ultrasounds of her kidneys and bladder, and another chromosome test. As a mom, I knew something wasn't quite right. On April 18th, we were delivered bittersweet news by a telephone call from Peoria. Many of our unanswered questions were finally answered with her diagnosis of having what is called 1p36 Chromosome Deletion Syndrome. Basically, she is missing a strand of her first chromosome which in turn delays her development. We did genetic testing and this is just a fluke thing that happened at conception. Dana and I are not carriers. This is where our adventure all started. She is a blessing from God above that has taught us so much about life already. We have complete faith that she is going to be just fine. And as in most houses with newborns, we have our good days and our not so good days. She is absolutely precious and I look forward to sharing pictures and words with all of you.
Here is a bit of her background since some of you may not be aware of what's been happening. Alayna was born January 29th and spent 5 days in the NICU at Trinity 7th Street due to pulmonary hypertension and two holes in her heart. The holes completely healed and we thought we were in the clear. However, on Good Friday, she was admitted to OSF Children's Hospital in Peoria due to a temperature, high white blood count, and high protein count. After many tests were done during our 5 day stay, it was discovered that she had a urinary tract infection. While we were there she also had an MRI, ultrasounds of her kidneys and bladder, and another chromosome test. As a mom, I knew something wasn't quite right. On April 18th, we were delivered bittersweet news by a telephone call from Peoria. Many of our unanswered questions were finally answered with her diagnosis of having what is called 1p36 Chromosome Deletion Syndrome. Basically, she is missing a strand of her first chromosome which in turn delays her development. We did genetic testing and this is just a fluke thing that happened at conception. Dana and I are not carriers. This is where our adventure all started. She is a blessing from God above that has taught us so much about life already. We have complete faith that she is going to be just fine. And as in most houses with newborns, we have our good days and our not so good days. She is absolutely precious and I look forward to sharing pictures and words with all of you.
As of now, she is doing great. I think we are finally getting her feedings under control. I decided to switch her formula to Carnation Good Start and since then, she doesn't spit up as much. It's great! I don't have to worry as much about leaving the house and her throwing up all over the place. Tomorrow we go to BHASED to repeat her hearing test. Say a prayer for us. We hope that they can get all of the frequencies tested this time. Last time she had a blockage and ear infection which hindered the test. She has such tiny ear canals and this test is sensitive to putting a microphone into her ear. It falls out and then we have to start all over again. If it doesn't go well, Dana and I plan on taking her to Peoria for an ABR test which is a brain response test. She would have electrodes hooked to her head and they measure response/hearing somehow. We've seen so much technology with her tests and it continues to amaze us!
She begins speech and physical therapy on Monday, June 11th at the Children's Therapy Center in Moline. She will go twice a month for now. We look forward to this beginning. As much as we want to keep her a tiny baby, we also want to see her mobility increase. She needs some muscles! Maybe I could hook her up with some of the Rockridge football players in the weight room this summer? She is definitely making more sounds and that is great. I told her that she has to talk in this house or she'll never survive!
She loves watching the kids. Summer is here and she is adjusting to the noise level increase during the day. I'll catch her watching her siblings faces and smiling at them. She takes alot of it in and seems to be soaking up information in that brain of hers! Her reflexes are getting better and she seems to be trying to reach and swat at toys. When she gets a grip, she gets a good one.
I'd estimate her to be about 14 pounds. She still gets rice or oatmeal in every bottle to keep her calorie intake up. Veggies are coming soon in about a month and fruit after that. We are trying to increase her volume intake to make her tummy big enough to handle the solid foods. I can't complain, she's a great sleeper. Sleeps through the night every night. It's been nice! I will let you know how tomorrow goes!
She begins speech and physical therapy on Monday, June 11th at the Children's Therapy Center in Moline. She will go twice a month for now. We look forward to this beginning. As much as we want to keep her a tiny baby, we also want to see her mobility increase. She needs some muscles! Maybe I could hook her up with some of the Rockridge football players in the weight room this summer? She is definitely making more sounds and that is great. I told her that she has to talk in this house or she'll never survive!
She loves watching the kids. Summer is here and she is adjusting to the noise level increase during the day. I'll catch her watching her siblings faces and smiling at them. She takes alot of it in and seems to be soaking up information in that brain of hers! Her reflexes are getting better and she seems to be trying to reach and swat at toys. When she gets a grip, she gets a good one.
I'd estimate her to be about 14 pounds. She still gets rice or oatmeal in every bottle to keep her calorie intake up. Veggies are coming soon in about a month and fruit after that. We are trying to increase her volume intake to make her tummy big enough to handle the solid foods. I can't complain, she's a great sleeper. Sleeps through the night every night. It's been nice! I will let you know how tomorrow goes!
