Saturday, March 28, 2009

What's going on with Jacob.....

Here's a quick summary of Jacob's "condition" at this point in time:
*weighs 5lbs 13.8 oz
*17 inches long
*gastroesophageal and nasopharyngeal reflux has damaged his airways and lungs leading to
*chronic lung disease (he will need to stay on oxygen when he goes home)
*takes all feedings by bottle using a special needs feeder to help him coordinate his swallowing
*eats small amounts (45cc - 1.5 oz) every 3 hours to help with reflux ("sleeping through the night" will have to wait a while)
*has moderate to severe hearing loss in both ears
*tethered spine - a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column (will be followed by a neurosurgeon)
*has the following heart issues - VSD (ventricular septal defect-hole), possible ASD (atrial septal defect), PPS (peripheral pulmonary stenosis), elongated aortic arch
*high muscle tone (stiffness in neck, arms, and legs)
*weak cry indicative of possible vocal cord issues (to be followed by ENT)
*chromosome 11 deletion (a few genes missing - possibly insignificant)
*partial cleft lip and numerous other anomalies being investigated by geneticist (they have yet to make a diagnosis, other than to tell us he definitely has a chromosomal abnormality "syndrome" of some nature)


Friday, March 27, 2009

It's Friday, and we're still not home...

Jacob's discharge has been postponed again. He is doing well- just needing more oxygen than they had anticipated- so, they want to continue watching him a few more days. He is up to 5lbs 11.4 oz, which means he has more than doubled his birth weight and gained 3 lbs in 7.5 weeks!!

Tuesday, March 24, 2009

5lbs 7.5oz!

Jacob is doing well. We are planning to bring him home on Friday!! (if all goes well this week) He will be on oxygen and 2 monitors for the first month or more after we come home. We will be going to many, many different doctors for follow-up appointments and therapy, and we will be keeping Jacob on a 3 hr feeding schedule day and night. He is unable to tolerate large amounts of food, so he will have to eat often day and night. It looks like we will definitely be busy for the next few months or more, but we are very proud of Jacob and his progress so far!! Please continue to remember us in your prayers.

Friday, March 20, 2009

Homecoming delayed again.....

Jacob weighs in at 5lbs 4.6oz as of tonight. He has had quite an eventful week. Because of his inability to "tolerate" the car seat and his continuous 'desating', he is now on a nasal cannula which provides him with oxygen. He is continuing to have new issues come up and the doctors say it will now be at least another week before he comes home. When he does come home, he will continue to be on the oxygen for a little while. Please continue to pray for Jacob and for the rest of us as we try to keep up with all that is going on.

Wednesday, March 11, 2009

Not coming home just yet...

Jacob is not quite ready to come home. He is unable to tolerate his carseat, which basically means he has trouble breathing while sitting in it. They are planning to test him again next week, and hopefully he can come home next Saturday. He still weighs in at 4lbs 5oz and is doing well.

Monday, March 9, 2009

Homecoming!! - maybe

Jacob is "scheduled" to come home on Saturday! He now weighs 4lbs 5oz. Please pray that we get everything done this week - we will be super busy preparing for him. We are spending Tuesday night at the hospital and will be there during the day the rest of the week to "learn" everything. He is taking all his feedings by bottle and will come home on a cardiorespiratory monitor. We are nervous about caring for him by ourselves, but are very anxious to be at home with our little boy. Thanks for all your prayers!!

Monday, March 2, 2009

Jacob is taking at least half of his feedings by bottle each day and weighs a whopping 3lbs 13oz! His week has been pretty uneventful, which is a good thing at this point. It should only be another week or two before he comes home according to the doctor. There isn't much of an update at this point - will write more later. Thank you all for the prayers!! Please continue to pray for each of us!