Baby Noah's Life

[mumofnoah]

Baby Noah was born 7 weeks premature, he is now nearly 6 months old, he has a 14 month old brother called Elijah and a 2 and a half year old sister called Hannah. At the moment Baby Noah is spending his 4th week in hospital. He had bronchialitis and now cannot sleep without the aid of oxygen because he desaturates when he sleeps. The doctors are wanting to do a sleep study to determine whether he has obstuctive sleep apnea. He has an ASD which is closing itself. Can anyone tell me if this 'desaturating' is common? The doctors are telling me that he will come home having the aid of oxygen when he sleeps. Has anyone experienced this? and for how long? We are praying for a miracle in Baby Noah's life and would appreciate your prayers as well.

Noah's mum

[momofrussell]

Well, first off CONGRATS on your arrival of baby Noah!!! How exciting for you... probably some of that excitement you don't need right now

My Russell is now 6. Although he went to term, he was in ICU for a couple weeks. His sats were in the 80's. He also had very low platelets. They kept telling us that Russell's sats had to get higher to leave the hospital but they really never got where they needed to be and they sent him home anyway. I remember them being in the low 90's and although that is better than in the 80's it's not where most people's sats were. Russell then had cataract surgery shortly after birth and both times they wouldn't let him home until his sats went above 95 or something like that.. they were in the low 90's then too. I told them we'd be in the hospital for ever if they waited for his sats to be higher LOL.

Russell didn't have to have extra oxygen when he came home but his sats were a bit low. I don't know how common it is, but I sure do read it lots in regards to our kids w/DS.

There a some mom's here than can help you with the sleep study. Russell hasn't had that but there are kids here that have.

I hope you get to take your wonderful bundle of joy home REALLY SOON!!!!

A. (adrienne)

[justinsmom]

WELCOME Noah and MUM!!!!!!!! ;D I'm Jackie mom to as of the 10th 4 year old Justin. Justin came home with oxygen and remained on it for about 6 months. He also kept desatting low 80's especially while sleeping but then it progressed while awake. His breathing was also so shallow they eventually put him on an apnea monitor for 2 months at home. That ended up showing that while he was asleep he became so relaxed that his breathing followed, I would check for chest rise, put my ear by his mouth and hand on his chest and nothing, no cyanosis though, they also sent us home with the pulse ox with the O2. Justin also has ASD which has finally closed on it's own as of 2 years ago but we are still waiting for the VSD to close but they were never a major issue his was and is pulmonary. He has asthma and allergies so with the right meds he has been doing great and at 2 years of age he had his tonsils and adnoids removed along with a set of T-tubes. The sleep study will be the easiest test, just alot of wires and electrodes to monitor heart rate, breathing, and brain activity. Justin was 3 weeks early so I'm sure we had some lung immaturity so I'm sure Noah has that problem as well with being born 7 weeks premature.

[wrblack]

Congrats, a bit late, on birth of Noah. Sorry to hear he's taken to camping out in hospital. My Charlie was 10 weeks early--and so was his little brother Robert, but those are two different stories.
I think a preemie with Ds can make for some rather complicated puzzles. It's a bit late in the year for it, but have they checked Noah for RSV? Major cause of bronchiolitis in preemies. Dr. Leshin has good essay on it at www.ds-health.com/rsv.htm
Well, with or without RSV and with or without Ds, lots of preemies come home on oxygen. Have known of some parents who went and purchased their own pulse-ox's on Ebay.
And then I know of some older kids with Ds who were on CPAP at night for apnea. I'm afraid it might take a while to figure out exactly what your Noah is up to. But I think there's a very good chance as he gets bigger and stronger he'll be putting you through the wringer lots less. I should thank Charlie for waiting until his second winter before deciding to camp out in hospital under oxygen tent.
I would usually be highly suspect of any advice coming from me, but I think I may have one pretty good piece this time. Try as best you can not to let all this stuff prevent you from enjoying your baby boy. He's only going to be 6 mos. old once you know. Give him an extra hug from me, please.
Best wishes for Noah and his family,
Bob

[Deannalee]

My little Justin, who is 16 mos now, was born 11 weeks early. He has been on O2 his whole short life. He has desatted as low as 8% when he pulled his cannula off last month. He had been obstructing for many months. We did have a sleep study done last month also. But after he dropped to 8%, the docs admitted him and finally listened to me about his obstructed airway. They just did surgery May 28th which left him in the ICU intubated and on the vent(11 days of that). He is still on O2 now at .5L. I am hoping to get him off sometime in the future. He still desats to the 60's and 70's if he pulls his cannula off. Right now he is too chunky and the doc thinks that the redundant neck tissue is causing an obstruction of sorts. He joked and said we needed a Jenny Craig consult. My poor baby, he doesn't even look obese!! Anyway, we have done the O2 and pulse ox thing for so long now it is second nature. Good luck and prayers to baby Noah!

Deanna mom to Justin (DS) 16 mos
~i~ Jordan (DS) 1/20/03-2/2/03

[updowns]

Sorry I can't help you but just wanted to welcome you to Uno. I hope baby Noah is home soon.

Stella

[shellk]

I have no experience with this ....Just wanted to say CONGRATULATIONS on baby Noah..And good luck

Michele

[Emilysmom]

WELCOME TO UNO MAS! ! ! ! ! ! ! Looking forward to getting to know you and Noah. I'm hoping he'll soon be home from the hospital.
Susan

[christie]

MANY BLESSINGS going out to your precious baby NOAH from here in New Jersey.
I, personally have had no experience with this BUT wanted to WELCOME you to UNO and let you know prayers are headed out your way.

CC

[MaggiesMom]

Maggie was in NICU with pulmonary hypertension for 5 weeks. It was a very scary time! Her O2 would never stay where they were supposed to.

The cardiologist told us that she has an ASD and PDA which have yet to close. They plan to do that within the next year or two. They haven't caused her any problems since she left NICU at 2 months of age.

Now that being said, I'd ask questions about pulmonary pressures. Make sure that they aren't high and push to do somthing if they are. Some kids don't out grow it and it can cause irreversible heart damage. Not what you wanted to hear, I know! But, better to know and ask, than to leave it to the medical community.

Sorry, I'm a bit soured by the medical group. The biggest thing I learned in NICU, is I could read Babies with DS and know more in a few days than a lot of doctors with their degrees! It was very frustrating.

Keep asking questions. It helps to hear from those who have been there.

There's a good DS heart group on Yahoo. I think it's

[e-mail]

You can do a search on yahoo groups if that isn't right. Sorry, my memory is not what it used to be.

Hope all goes well. We'll be praying for you all.

Robin M - Maggie's mom

[Pat]

CONGRATS on baby Noah!! ;D
John-John had a small VSD which closed on it's own. His O2 sats were 89-92 on there low points so we came home w/ .5l of O2 & an apnea monitor. He slept12 hrs strait through the night, but that stupid moniter would go off 3-5 times a night for loose lead (he moved just right, never went off because of lack of O2). The apnea test was a breeze for John-John (he had 2)but the chairs that you sleep in are uncomfortable for the parent He was off O2 & the monitor in about 3 mths.