I spent 6 hours at the hospital today snuggled up with Henry. He is doing really well, he drank 3 straight bottles today no tube feeding while I was there!
Last week was long so I didn't have to much to write because nothing really good was going on. Henry went back on CPAP and then the Dr confirmed what we were thinking...Henry will not be home by his due date on the 14th. That was something I was not prepared to hear. In the begining when we were running on a adrenaline (and fear) and received bad news or a set back we just kept going. Well now we are running on fumes and it took a lot to bounce back from that news. I just want him home. So I spent today telling him that he needs to be home by Christmas.
We are starting to understand that when he comes home it is not like bringing a newborn home...he is coming home on Oxygen, and will need Early Intervention services (occupational, physical and speech therapies). It's amazing how they have been telling us this for weeks but we are just starting to wrap our heads around it now. We have no idea to what level he will need these services, we'll see as he grows how much help he needs.
We also just found out we might qualify for nursing services...like OVERNIGHT nursering services. THat is the only good thing to come out of all this crap. We might actually get to sleep at night knowing a professional is taking care of our son. That will be a huge relief if we qualify because otherwise there is no way I am leaving him alone, which means I will not be leaving the housee all winter since he is not allowed to with exception to his Dr's appointments...and sleep? i highly doubt either one of us would get much sleep when we are checking every 2 seconds to make sure he is breathing. I kind of wish we could bring all the monitors home with us!!!
2 comments:
Oh honey... I know you were hoping for the 14th. I am sorry. I know the doctors wouldnt keep him there if they didnt think he would benefit. As hard as it was for us to not have our twins home with us, the neonatologists constantly told us that as soon as they could go home, they'd be packing them out the door. That they werent just keeping them there
I have loved following your story and that sweet Henry. I lost a preemie baby at 31 weeks, 2 lbs 13oz, in 1974. Yes, that is a long time ago and then we did not have all the advances we do now.
I know how disappointing it must be to not bring him home on the 14th. However, if he is not ready to be home--then the last thing you want is to have him at home.
I hope you qualify for the nurse. That is such an awesome benefit. The real reason I am writing is your comment about wishing you can take the monitors home. If you need them, you will take monitors home. I suppose he is on the blood oxygen monitor that alerts if his oxygen level goes below a pre-set number. If for some reason (that being that they do not feel Henry needs them) you do not bring monitors home, you can buy a breathing monitor. I am a foster mother of infants and I never go to sleep unless my baby is on a breathing monitor. AngelBaby or AngelCare is one brand. Mine is Baby Sense V. Sensors go under the mattress and if his breathing stops or slows for 20 seconds, an alarm goes off. They cost about $100 and are worth many times that much. I used to be up off and on all night to be sure babies were still breathing. Now, I go to bed and go to sleep. Mary is now 9 months old and I got her from the hospital when she was 3 days old. She weighed 5 pounds and was a few weeks premature and was at high risk for SIDS. Then she learned to turn from her back to her stomach at 2.5 months a slept on her stomach them on. (We are not allowed to use the wedgies or anything in the crib.) So this monitor has enabled me to sleep for the last 9 months.
Anyway, best of luck with your little doll and his big sister. I also have an adopted son (24 years old) as well as 2 biological children (34 and 36) and all my sweet, sweet foster babies over the years.
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