FRIDAY, APRIL 24, 2009
Today I was released from Lakeside at 11:00am. Vernon and I went straight
over to see Vollen at Bergan. I had a pretty rough morning and wanted to hold
& feed my baby and was really feeling down. It was so weird being the only
room without a baby crying in it and to leave the hospital without a baby. But
as soon as I got my hands on him all was good again.
He was off of his oxygen tubes and looking really good and calm and
peaceful with great coloring. We got great news from Vollen's main doctor here
that his pulmonary hypertension is pretty much gone already (that is why they
could take him off oxygen). So, he will most likely be discharged from the
hospital without any problems with his heart & lungs at all! The tube that
needed to close going from the heart to the lungs has closed, it just needs to
structurally (or securely) close up, which it is in the process of doing and
could take up to a week to fully heal, but once it is closed it is closed and
that is the end of the pulmonary hypertension.
He has a bit of the rapid breathing still, but it is few and far between
and it doesn't raise his CO2 levels. He is able to stop it pretty quickly and
remain constant and steady with his breathing. They also said that the rapid
breathing will completely cease in up to two weeks.
It helped me so much to be with him today and finally feeling like I have
a baby, since I hadn't seen him for so long. I was able to start nursing him
and he did so good. The night he was born I had put him on as soon as I could
and he did great then also. Today he picked it right back up like he knew just
what to do. He latched on really well, and was sucking hard and swallowing like
a champ. So, they gave me a room to stay in on the floor above him, so I can be
right here to feed him on a regular schedule. I like that I am in the same
hospital as him again.
When we had left to go eat lunch and say hi to Sophie, they had given him
all the colostrum I had pumped up until now, in one sitting and he was still
hungry! So, they gave him a little formula also (which he didn't like as much).
He his eating really well and should be gaining back some of the weight he
lost. He was down to about 8 lbs. 1 oz.
(3 months)
Now all they are waiting on to release him from the hospital is for him
to get on an established feeding pattern with the breast milk and be gaining
some weight back. They said it is going to be totally up to him and how his
body reacts, but they didn't think it would be any longer than 2 to 3 days. At
the rate he is going with eating and how good he is at it, I am sure it won't
be any longer than that!
The hospital's speech pathologist and occupational therapist came by to
talk to us today a little bit about having a baby with Down Syndrome. They were
both really informative and helpful. It was SOOOOOOO nice to finally be getting
some questions answered and just told where we go from here and what all is out
there and available. We are so thankful that there are so many resources out
there for children with special needs. We had no idea all these services were
out there! It really put our minds at ease that we are not alone in this
process and that help is everywhere and so easily accessible for our little boy.
Tomorrow (well, actually today it is after 12) we are going to be meeting
with the genetics specialist and they are going to go into more detail about
what all Down Syndrome entails and give us a lot more details. We were also
told that we will be seeing a counselor to talk about all of this, which I
think it great and they do for all parents that have a special needs baby.
Today was a good day and we are feeling much better about everything.
As for me, I am healing pretty good, even though I am not technically
supposed to be out of the hospital yet, I am trying to take it really easy and
slow. I feel like this section was a little easier to recover from. I still
have a slight cough from having a cold earlier in the week and it is sure
torture on my wound. I have to hold and support the muscles under the stitches
every time I cough, so I don't rip or tear anything inside or out. It is
annoying and hopefully will be gone soon.
Sophie is not allowed to be in the NICU due to it still being rhino virus
season. They won't let little ones in under 6, but they did tell us tonight
that we would be able to take Vollen over by the window and she could look in
at him, so we might try and do that soon. She sure talks about her little
brother a lot and wants to see him and hold him. Today my mom showed me a video
of her singing a song to mommy and baby Vollen into her karaoke toy with only a
diaper on. It is really cute and I will post it on the blog as soon as I get my
mom's cord to go from her camera to my computer!
We wanted to again thank everyone for all of your calls, e-mails,
facebook messages, visits, etc... everyone has been so understanding and
wonderful. We want to let you know that although we are not able to talk with
each one of you individually and answer every single call and e-mail, that we
do SEE each and every one and we know you understand that there are just not
enough hours in the days right now to give everyone the responses back that
they deserve. This blog is the best way that we can communicate with everyone
what is going on and not be repeating the same information over and over again
to every person.
Stay tuned tomorrow for Part 4!
Casie
and this unspeakable gift of motherhood...
it's an honor. a dream. and not documenting it...capturing every
moment...bottling it up to save forever...would be irresponsible. ~ Kelle
Hampton
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