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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, April 26, 2007

The critical hours



We have gone through most of the critical hours now. Just one more day to have that label. Alex is just trying to remain stable today. They don't want to do anything too fast because that can be bad too. He has done some great baby step things today. He is down to 60% oxygen from the ventilator, he is draining well and been tolerating the meds well. He has stayed above the use of the pacemaker and his sats are looking pretty good for a mixer. I know that sounds pretty weird to most of you, but some will get it. I got to give him his first sponge bath. He loved it!!!! He must be like the rest of us and love water. I even rubbed his hair into a mini mohawk. This is a picture of him in his room with all the attachments. Ry had a great day with grandma Homer and is home with us tonight. It is really nice having her with us, so I can snuggle her. She saw me pump for the first time and wanted to try it out. Jeff and I are getting rest and really doing pretty good for just having a baby. Our Ob got strep and wasn't able to deliver Alex, but can I just say, he has been amazing. He called almost everyday to check on us and he has been great. Thank you for all that you have been doing for us. We feel the prayers and know that Alex is doing so well because of the love of all of you. So thanks.

5 comments:

Alisha said...

Hang in there! Little Alex is a real fighter. It is so scary to hear all of the bells and wistles on all of those machines. I am so glad that he has remaind stable. Every step counts. I loved the changing and sponge bath times. How rewarding it is to just our children. I have forgotten how excited I was to do "care"for the first time, well every time. I am glad to see Ryleigh has a sence of humor about the whole pumping thing. It's great you have her to keep your whits about things. We think of you "minutely"(a new word for the day). I am so glad that there are so many people to support you and lighten your load it sure does help. Thank you for keeping us updated. We will keep all of you in our prayers. We sure love you! (shh...I think he looks like his uncle RY)

Alisha said...

I just re-read the comment I left. I meant to say "touch" our children not just. Where did that come from? By the way, are you singing to him? He will love your voice.

Anonymous said...

How exciting it is to hear that you're almost past the "critical" hours. We'll continue to keep Alex and your family in our thoughts and prayers!

::Big Hugs::

J

Terry said...

Brynn, Thank you so much fo sharing. He looks great! It was great talking with you last night! I hope Ry didn't get hickie's (ha ha) I'm glad you are doing good!
Love you Lady!!

Steve said...

It's wonderful to hear that Alex is doing well. That picture today from the PICU sure brings back memories. Time seems to move slower there...every moment seems to mean so much more. Alex is so lucky to have you guys. I truly believe having the kind of positive, loving support he's getting makes all the difference. If I can offer one piece of advice - stay goal oriented. As you have good days and bad, look forward to the next step from here...even if that's a couple steps lower than yesterday. Stay focused on a positive goal and I know you'll find strength you never knew was there.

Our family's thoughts and prayers are with you, Alex, and Ryleigh. Some day we'll have to get our four together to play. I can already imagine Alex and Andrew running around. ;-)

-Steve