Ultrasounds are supposed to be fun experiences for couples expecting a baby. You see your little bean wiggling around, the ultrasound tech says fun things like, "Look at his cute little toes," you dream about the joy this little one will bring you...
I don't like ultrasounds anymore. We had one yesterday for the first time in five weeks (that's the longest we've gone during this pregnancy without seeing our little guy on the big screen). It seems like every time we go in, there is something else found that is wrong. When you ask the ultrasound tech about the baby's heart and you don't get a "looks great!" answer, you just know. They can't give you bad news... that's the doctor's job.
In a nutshell, the doctor told us that he thinks the baby has atrioventricular canal (AV Canal or AVC). We have an appointment with a pediatric cardiologist who will do a fetal echocardiogram of our baby's heart to confirm the diagnosis on 11/26 at Children's Hospital. This doesn't change the fact that he needs to have his intestines repaired the day after he's born. If he requires heart surgery, the desire is to delay it until he's 4-6 months old so that he can get bigger.
I just want to scream, "God, leave him alone! Doesn't he have enough to deal with?" But in the same breath I want to beg Him, "Please heal our boy!"
I'll share more about our day at Children's later. We never got around to our tour. No big deal... we'll be back.
Pumpkin Patch 2018
6 years ago
8 comments:
I'm so sorry...ugh.
I'm trying to think of something uplifting to say. It's hard when it feels like the rain never stops.
You are in my thoughts.
Jennie,
Oh, I'm sorry about the heart! I was so hoping and praying that his heart would be fine. His particular heart defect is the most common with our little ones, unfortunately. Fortunately, the success rate with the repairs is wonderful. He will do fine, and it's actually good that you know ahead of time. Most babies do make it to 4-6 months before the repair is needed. Having just gone thru open-heart with my little one, I can answer any questions you may have, just email me. I would recommend Dr. Strausburger, right there in Neenah. She specializes in fetal echos, and she's very very good. If you went with her, your post-op could be done in Neenah too. It would be nice if you didn't have to travel to Milwaukee for this (of course the actual surgery would be done there). This must be overwhelming for you, but all will be OK! You will leap one hurdle at a time and you will develop a love for your little guy that will be life-changing. Prayers for your whole family. Kris
Jennie,
I am praying for ya'll,I know we haven't spoken in awhile,my heart goes out to you.
Nancy
I can't image getting so much bad news in such a short amount of time. Remember, after all of this sadness you will have a beautiful little boy. When you get to see him for the first time you will feel at ease, especially when he gives you that first smile. The clouds do part eventually, stay strong. Also, it is good that the doctors are able to monitor him now and keep him safe.
Hey Jennie,
Thinking about you. I also can't think of anything uplifting that wouldn't be trite. I will say that as a child I stayed in the Ronald McDonald house while my cousin had heart surgery and I LOVED IT! I would definitely bring Nathan.
Thanks for your encouragement, ladies.
Kris - Thanks for the heads-up about Dr. Strasburger. When we go back to CHW-M for the fetal echo, I'll ask about follow-ups here in Neenah. I don't think we can schedule the first one here since we know we're delivering down there.
C - Yes, Nathan would definitely enjoy the RMH... there's a Playland inside, afterall. The downside is that we would be sharing a room and I'll be pumping. But I'm sure we can figure out a way to make it work, assuming we can actually get into the house (they're always at 100% capacity, so there's no telling how many days or weeks we would have to wait).
Sorry to hear about the heart news. It SUCKS to get the T21 shocker and just when you maybe start to adjust to that you get hit with a heart shocker. Same situation for us, only we found out about our daughter's T21 at birth and her heart defext at 3 weeks old. She will be having open heart surgery next month. It just seemed so wrong and unfair to be hit with both when everyone around me was having babies with no complications.
I don't have any word of advice, I have just learned to live day by day and try not to stress to much about the future. My daughter's adorable smiles counteract much of the stress.
It was great to see you as well! I wish we could have talked a little more, but it is so hard with our toddlers there. I am sure we will have a lot to talk about in the future. I usually go to the Monday meetings at the Family Resource Center (10am), Mom and Pop Place, and the DOWN to Earth Meetings in Oshkosh (those I may miss once in a while, it is a long way for me).
Keep us updated on all of you and baby's progress.
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