Sorry I didn't get an opportunity to post yesterday. But I just thought I'd let you know that Micah had a poopy diaper on Wednesday night. Yay!
Yesterday we attempted to feed him 10 cc's (vs. 5 on Wed.). It took a long time to get that much into him every 3 hours. He hasn't gotten the suck/swallow/breathe thing yet. The speech pathologist warned me yesterday that they will basically increase the volume in his feeds at least every 24 hours (if not 12) and that Micah will likely not be able to keep up with that. She wanted to prepare me for the inevitable NG tube. This could take a while. The patient care team is checking with our insurance to see if we could get him transfered up to Neenah. It's not likely that it will be covered on insurance, but it's worth a shot.
A physical therapist came by on Wednesday afternoon. She gave me some tips on how best to hold Micah and position him for playtime and sleeping, given his low muscle tone. This visit happened after I gave him a bath. I don't know why, but the reality of Micah's diagnosis of Down syndrome was so very apparent to me at that time and I just started to cry (and cried most of the night). I've hesitated to even mention that on here because I'm aware of how many more people are reading my blog now. I want to be okay with his diagnosis and I don't want to be sad about this part of who he is. And I want to appear all together and not struggling and content with what God has given us. But this is the only place I'm documenting our journey, so I guess you all are going to have to deal with the fact that I'm human and not some spiritual giant (well, those of you who know me best know that isn't true anyway...).
Nathan has been here for a week now (barring Sunday night when we all went home). He's testing every limit with me, specifically, but also with my mom now, so she has to be exhausted (she went home for the weekend and Mark arrived last night). We'll decide at the end of the weekend whether it makes sense for Nathan to go home or continue to stay here. I missed him so much when he wasn't here, but now that he is here, I sometimes want to throw him out a window (like when he's pitching a major fit and screaming at the top of his lungs). [please don't accuse me of child abuse... I wouldn't actually throw him out a window...]
So, the new prayer requests are: 1) Micah would learn that this eating thing is not so bad, 2) Nathan would settle into our current living situation, and 3) BCBS would have mercy on us and pay for the ambulance transport home so that we can all be together in the same city.
Subscribe to:
Post Comments (Atom)
7 comments:
Jennie-
Please don't beat yourself up. You are not staying at home, you have a little boy with you (who is having his own issues!!), and you've been dealing a lot with Micah's medical issues. It took me a long time to come to grips with my son's diagnosis. It's perfectly natural to go through a grieving process. I would love to come visit you at Children's if you are up for it. If so, my email is kmwestcott@aol.com.
Kristi
Hi, I've been reading along. My daughter has DS and is 16 months old. She spent some time in the NICU too. Anyway, cut yourself some slack -- you certainly don't need to have it all together at this point! It would be strange if you weren't crying occasionally. Hang in there.
And congrats on the poop!
Hi Jennie, I'm so glad I got to meet Micah! There's something so wonderful about new, tiny babies. I think when I'm old & my kids are gone, I'll go volunteer to rock babies in the NICU or something.
Please don't feel bad about grieving over Micah having Down Syndrome! It's nothing to worry about. No one expects things are super easy for any of you right now, and please don't be afraid to ask for help if you need it. Or even just someone to lend an ear!
So glad Micah had his first poop. I know how important that is for his recovery.
As for the transport, Lil had her surgery in Madison, and once it got to the point where all she was working on was feeding, we were able to transfer her to the NICU at St. E’s in Appleton. Although the docs thought insurance would probably cover the ambulance transport, they didn’t see any reason why we couldn’t drive her ourselves, and that is what we did. Her PIC line was out, and all she had was an NG tube. But, seriously, we loaded her in our own car and drove her to Appleton. It was great to be able to sleep at our house and not RMH.
Maybe an option if you have trouble with insurance for the transport?
We are praying...and don't hold back your real feelings. Many of us who have been there are glad to see that others are dealing with it just as we did. The grieving process will be hard, but will get better with each day.
Jennie-- you are doing great! If you didn't have ups and downs, it would be abnormal. you just had a baby with lots of needs, you are healing yourself from a surgery, you are separated from loved ones, you have a 2-year old-- it is not an easy set of circumstances. hang in there, and take some time for yourself, however you can do that-- after Nathan is in bed- do something nice for yourself! We love you and think of you daily
jennie,
Please cut your self some slack. it took me a long time to deal with jacob's diagnosis. a lot of time,i was just in denial. it will get easier, but it is a journey that doesn't move in a straight line. the added stress of a 2 year old who knows how to push your emotional buttons must be overwhelming. remember that you can still wrestle with God, be angry or confused and still be a good mom/person. God knows that you are going to go through these things and although it may not feel like it now, He's holding you up. so when you want to cry...cry out to Him with your pain, anger, fears. I am thinking of you and praying for all of you. you will get through this season. love you. feel free to call if you want.
Joy
Post a Comment