Today was Natalie's bi-weekly visit to the cardiologist and she did rather well. Finally! The doctor was able to retrieve a pediatric scale! This whole time while visiting the other branch of the doctor's office (one that is much closer to our area) we've been going there getting Natalie's weight by doing the old "hold the baby, calculate weight on ridiculously old scale, handover baby, dad gets back on to be weighed..then the difference is calculated as Natalie's weight". Isn't that the stupidest thing? Us parents know..ALL of us parents know, that each ounce counts when our babies are weighed. And let me tell ya, with Natalie each ounce truly does count. So, yes! She was weighed and gained another 4 ounces since Thursday! Pretty great! She's at 10lb, 8oz. Pulsox reading came to 86%, which has dipped lower than usual.
Can I be frank here? I'm completely scared for sure now.
I know I know. Don't worry. I know.
How can Ricky and I not though? But, I will say..I feel lucky because I was able to get an appt. for Thursday getting her pulsox checked again. So, because her reading is the lowest ever so far we want her checked two times a week again. That way, if anything starts to not be so great we'll know in advance as to what next step to take (ex. earlier surgery? manual oxygen needed? etc.)
Basically, right now we're still in the "wait and see" mode. Which sucks. But, the reason behind it all makes a ton of sense. They want to avoid doing the "BT Shunt", which is basically the temporary shunt they put into the heart to promote more flow of oxygen to and from the lungs. This is the emergency-type shunt they do if the baby can't wait until having the "Glenn Shunt".That is the surgery that Natalie is holding out for. Any "BT shunt" put in is removed and a more permanent one is put in place. This is the first of two stages called the "Fontan Procedure". The second of that procedure occurs anytime between age 2 to 6. Babies that are 2-4 months older than what Natalie is now heal a lot quicker and bounce back alot faster after heart surgery. The two cardiologists that have teamed up to work with Natalie always see eye to eye on everything. And we love them. Alot. But, ....the doctor we saw 2 weeks ago (we'll call him Dr.R) prescribed the Zantac for Natalie's supposed reflux situation. Which btw, we have noticed no change in her eating. I'll mention more of that shortly. But Dr.G who we saw today looked over Natalie's file and it had no mention of that in it. So...... that's kind of confusing.
Which brings me to what we're focused on right now- getting Natalie to eat.
She doesn't want to eat.
We don't know why and no one seem to have any real answers.
I can say this- she poops and pees what would appear to be of a normal amount..so no shortage there. LOL And in all fairness, as Dr.G pointed out today, Natalie did just get a hefty amount of shots last week.
But still.
It's Tuesday and Natalie has barely reached the 13 ounce mark eaten per day.
She simply just doesn't want the bottle. We have no clue what to do. At least Thursday we can bring this up with her pediatrician.
Any ounce she drinks Ricky and I sigh with relief. And then there's the times of the day where I calculate how much she's had from one point to another and tear up (sorry... I know... I shouldn't). Today, she ate only 2 ounces from 8am to 3pm. And she was awake most of that time. There just has to be a logical reason for this. We have to find out what it is.
7 comments:
I have been thinking about you guys and sending prayers your way for little Natalie. I know she is going to be ok, but I can only imagine your fear.
Hugs to all of you!
Thank you Kirsten!! Seriously, your prayers mean THE WORLD to us. And on a lighter note- your blog cracks me up. It puts me in the best of moods when I read it. I love it!!!
I don't know how you could even try to not be worried or scared! You are a very brave mother & a very strong woman. Logan & I will be thinking happy, healing thoughts for Natalie!
Thank you so much!!!!!!!! =)
Just replying here to your questions in case you didn't see them on my blog: 1) I just cut the vitamin in half and told him to chew it he knows what that means because I am always afraid he'd choke so I tell him to "use your teeth" and I make a chomping of my own teeth to show him so when I say that he mimicks it- but I just told him to chew it and he did... it was a flinstone one so I guess it didn't taste too bad to him. The sleeping on the floor is working out well- at first he would roll off- but then we got a little bed rail- I was hesitant becuase it was designed for use with a box spring- but it seems to be working fine enough and he doesn't roll off anymore anyway- only thing now is that he can open the door in his room so if he wants to he can let himself out when he wakes up- of course we have the monitors on- but he can unlock his door too- we'll have to do more childproofing I think- and keep reinforcing the rules about that with him.
I have been thinking about you a lot lately. I had a similar (kind of) heart defect when I was born. It's called Tetrology of Fallot- here's a link if you haven't heard of it:
http://www.nhlbi.nih.gov/health/dci/Diseases/tof/tof_what.html
Anyway I was talking to my mom about you today and she was telling me a lot about when I was a baby. I had to get regular oxygen level checks and all that stuff too. And they were also waiting to do my shunt until at least 4-6 months and then corrective at age 2. My mom said she felt like she was "on the edge of a cliff" that whole time. I can't imagine, but I know what it's like to grow up dealing with cardiologist stuff and hospitals all the time... and once my corrective surgery was done I never had any complications or restrictions or medication... so I am praying that the same will be true for Natalie and that you will have the strength to get through this.
the end of that link was
/Diseases/tof/tof_what.html
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