I will preface this post with this... we just had "big" doctor appointment number 2... After "big" doctor appointments, I have found it takes a good 3-4 days for things to truly set in...It starts out overwhelming, a couple days of spontaneous tears, some questioning, a lot of thinking through different scenarios, a lot of "we're fines", a whole lot of praying and searching out Gods word for healing and comfort, and then finally acceptance...
January 14, 2014... Heavy day. We had our fetal echocardiogram and met the Pediatric Cardiologist, Dr. Roten. I have been really excited and anxious about this appointment because it will shed more light on the situation… and that it did…a lot of light…maybe too much light. So much light that I still feel blind and it’s been 3 days. She didn’t give us any “new” news really, just a whole lot of info and what to expect and so on. Hallie’s heart looked as expected. They got great pictures from the echo, which looks like a normal sono but with red and blue flashing lights where the heart is. The lights show the blood flow. Hallie’s Aorta is very tiny as well which is true of most hypoplastic hearts… She says the aorta and the left ventricle stopped growing about 6 weeks gestation. Most babies hearts are fully formed by 6 weeks but continue to grow larger as the baby grows…. With a hypoplastic heart, those parts do not continue growing, basically. There is also a valve that comes into play, which opens and closes to allow for blood flow that can be too small or normal…Hallie’s is big right now, which is good, we will continue to monitor that until birth.
We were there for 3 hours, 2 of it just talking to the
doctor…and she talked all but about 10 minutes of that time, collectively. I have never been given that much info to
digest in one sitting. Don’t get me wrong, I appreciate it! I would rather hear
it all from a valid source than fish for it off the internet. It just took me back a bit. It just made things more “real”. It’s been a little harder to stay as strong as
we have been just because there are more “what ifs” to think about. She painted a picture of what labor, the
hospital stay, and the first 4 months will be like… and touched on the
future. It’s just overwhelming. Our life is going to change. I am ok with it changing but with any change
comes fear of the unknown. She offered
for us to meet a family that has gone through it, which we have decided we will
do…not sure when yet. There are support
groups and plenty of resources available, which I will take advantage of. Here are a few of the highlights…
Labor: I can go
into labor on my own, as previously told, they try to plan a little bit so if it looks like I’m
getting close they may induce, it just depends.
She said no matter how hard they try to plan tho, if that baby wants to
come at 2am on a Sunday night when there is a skeleton crew there, that’s what
will be. After birth, we will get to
hold her for just a little bit - not a "hard hold" she called it - and then she will be taken to Cook Children’s
just across the street. We can see her
whenever we want and as long as there were no labor complications I can move
over there and room in with the baby.
She will go to the NICU, then the PICU/CVICU (Cardiovascular ICU), then
back to the NICU…all dependent upon what step in the process we are in. I am allowed to stay the night up there the
whole time if I want; there is a couch/bed.
We won’t be able to hold her a whole lot because she will have a lot of
tubes and lines connected to her and we do not want those to come out. Nursing will not happen, I will begin pumping
immediately. She can’t eat prior to surgery;
she will have IV fluids from birth.
Surgery: The first surgery, the Norwood procedure, will
take place 48-72 hours after birth. They
will give her a shot of medicine immediately after birth, to keep her
artery/valve open until they are ready for surgery. When Hallie leaves us for surgery she will be
gone 8-10 hours… the actual surgery usually lasts 4-6 hours. She told us all sorts of stuff about what
the baby goes through behind those doors… I am doing my best to forget that
information or at least suppress some of it. She told us because we asked and she will tell us whatever we want
to know…sometimes ignorance is bliss but when it comes to my baby I want to know it all...even if it is a little harder to swallow. When surgery
is over, they will be able to tell us how well everything went, and “will have
a pretty good idea” of any side effects that are to be expected…which does not mean
that those things will or won’t happen, just a better idea of if it will
happen… if that makes any sense. Side effects include stroke, seizures, things of that nature... She
will be swollen for a couple days, sedated, and her chest will remain open for
2 days but they will have a protective covering sewn over the opening until
they go in and close it. This is done
because of the swelling and in case they need to go back in for any reason, etc. This part hits me hard for some reason, the thought of her lying there with her little swollen face and body and her movements in slow motion from the sedation. REALLY tugs at my heart strings. Worries me that she can feel any pain and can't express herself. I tear up now as I think about it. My mom says to remember we are saving her life.
Post-Surgery: They will lighten her sedation slightly
periodically to make sure she is reacting to everything as she should, that her
movements are normal (no seizures etc.). They will
close her chest up 2 days after surgery while she is in the PICU/CVICU. She will have a feeding tube (g-button) her
entire stay and most likely when she goes home.
She will have feeding problems because of this and will have to learn to
suck and drink from a bottle slowly, i.e. if she is eating 3 oz we will do 2 oz through
the g-button and 1 oz by bottle…nursing might be possible later on, something
she will have to learn. I will pump, God
willing, I do not have any problems with production. I was like a cow with Avery but since I will
be under a lot of stress it may be a little more difficult. I feel that part will work out fine but you
never know.
Going Home:
Hallie will be in the hospital for at
least 4-5 weeks (1month) if everything goes perfectly. We will be sent home with an oxygen monitor
and scale to weigh her and check her oxygen levels multiple times a day, as
well as blood thinners twice a day. She
will also have regular checkups during that time. The first 4 months are the most critical. The 2nd surgery will take place at
4 months of age, at least a month of that will be spent in the hospital…so
that’s 3 months at home… GULP… I’m going to be SCARED! Babies that make it thru those 4 months have a 95% survival rate going thru the 2nd surgery (Glenn procedure) and 3rd (Fontan procedure). Going to be a LONG. FOUR.
MONTHS. We worry about our babies enough as it is... yikes.
Future: There are a lot of if’s, an’s, or but’s, BUT what we
do know for sure is that she will see a cardiologist 1-2 times a year and will
be on aspirin and blood thinners twice a day, her entire life. She will function
as a normal child, just have to be a little more cautious than most and take
care of her heart. The heart is not
built to operate at half capacity so it is very likely that, at some point,
maybe when she’s 15, maybe when she’s 50, she will need a transplant… but who
knows what the future holds and what options will be available at that
time. We will bank her cord blood (we did Avery's too). The people at CBR, Cord Blood Registry, have already started research for HLHS patients and have a lot of promising finds. This is an interesting article that Donny found: http://hlhsblog.mayoclinic.org/discussion/umbilical-cord-blood-banking-for-future-regenerative-therapies
The 3rd surgery, the
Fontan, basically reverses the blood flow so that it goes directly to the lungs. This is something all medical
professionals will need to know incase an emergency were to arise. As an infant we will put stickers on her car
seat, school age and up, especially when she starts driving, she will need to wear some type of medical ID
tag… We’ll have to find her something cute and stylish :).
SO, that’s it in a nut shell…for now. believe me I could have
written 4 more pages on this and all the info Dr. Roten gave us for the present and the future and
all the thoughts we are thinking and well…. It will all be here before we know
it.
"The Lord bless you and keep you; the Lord make his face shine on you and be gracious to you: the Lord turn is face toward you and give you peace." Numbers 6:24-26
Lord, thank you for the medical professionals we have on our side and the knowledge they possess. Please continue to bless us and keep us strong. Amen.
For a little more information and a really good diagram of the difference between a "normal" heart and a hypoplastic heart
check this site out, you can just hold your mouse over the diagram and it will show you the difference...
http://www.pted.org/?id=hypoplasticleft1
http://www.pted.org/?id=hypoplasticleft1
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