We had the mother of all doctor visits on Thursday! We had FIVE appointments and were at the hospital ALLLLLLLL day long!
We had another fetal echo cardiogram, a consult with the pediatric cardiologist, a consult with Amelia's surgeon(we also toured the Children's hospital), a non-stress test, and a growth scan. It was a full day, but we feel much better after the visits.
The consult with the pediatric cardiologist was just to go over the new fetal echo. She told us that while Amelia does still have HLHS, it's not as severe as a typical HLHS heart. It's so nice to hear. After our original appointment, where we found out about her HLHS, I slowly started to feel very weighed down by fear. After this appointment, I am feeling a bit better. The cardiologist(who happens to be David's pediatric cardiologist from when he was a teen) said that she wants Amelia transferred from my hospital that I deliver at, to the Children's hospital ASAP. Usually they transfer around 24-48 hours after birth, but she said she is more aggressive about the transfer. Part of me really wants Amelia to stay longer, so I can see her everyday until I am discharged, but the other part of me knows that it is best for her to be at children's. This is one of many things that breaks my heart. Amelia will be taken from me, put in NICU right away, and then taken to children's. One of my biggest fears is that she'll be transferred, and the doctors will decide to operate before I am discharged.
After the consult with the pedi cardiologist, we met with Dr. A(his last name is a mile long) at American Family Children's Hospital. I am so happy that we got to meet him. The nurse on his team reassured us that he is the best for the job. He comes from San Francisco, where he had a ton of experience. Now he doesn't have quite as big a case load as a typical pediatric surgeon, so he spends all day with his patients. He sits next to them for a few hours after their surgeries to make sure everything is okay. He said something that stuck with me. "Amelia chose the most complicated of heart defects, that's the bad news, but the good news is, she chose an easier version of the heart defect." The left ventricle of her heart isn't as small as a typical HLHS heart, and the same for her Aorta. Usually the Aorta is very small/closed. Hers is a decent size and open, giving them some room for work. The national percentage of mortality of kiddos with HLHS in the first year is 15%. That's a little bit of a scary number, but that leaves 85% that survive. The first two surgeries that are done when she is a few days old, and before she is 6 months old, are the most complicated, but after the 2nd surgery, we can breath a little. Her third surgery will be anywhere between 2-5 years old. This whole situation sucks, but there are some good things about this sucky situation. 20 years ago, doctors were giving babies a 20% chance of living. Now, 20 years later, babies are living and the oldest survivors are in their 20's. The doctors are learning more and more about what risks lay ahead as the kids get older and what to look out for. I am so grateful for science and how far it has come.
We toured the Children's hospital, which was pretty neat. It's a new hospital and they have state of the art equipment. We saw where Amelia will be staying(in the PICU), and it breaks my heart to walk through there and see kiddos hooked up to machines. I cannot imagine what my heart will feel when it's my very own newborn hooked up.
I had my first of many NST's(non-stress test). All they do is hook up a monitor to me, it monitors Amelia's heart beat. In 20 minutes Amelia's heart beat must rise a certain amount, 2 different times. She was moving the whole 20 minutes, so she passed with flying colors. I will have 2 NST's a week until our sweet girl gets here. Luckily, I don't have to drive all the way to Madison for both. I can do one a week in Reedsburg, which is just 15 minutes from our house.
The growth scan was funny. Girlfriend is large! She is weighing around 4lbs 8 oz, but what's so funny is how difficult she makes it for the techs to see anything. Every time they wanted to measure something, or listen to a part of her heart with the doppler on the ultrasound, she would start practice breathing. It was like a game to her. She was testing their patience. haha
Like I said, it was a full day. I have so many emotions right now and I am not sure how to express them. I am grateful for the team at both hospitals. I am SO blessed by my husband, who is such an amazing support for me. Emma is also an incredible blessing, because she helps take my mind off of it. My heart is also breaking because I know what's coming. I know I will be spending much less time with Emma once Amelia is here. I am always with Emma, but once Amelia gets here, I will go a few days at a time with out seeing her. I cannot even...it's very hard to think about. I am scared for Amelia. Through all this, I am praying for strength. I don't know how I will get through this next year, but I know I will, because God is good and I trust Him. I cannot wait until 10 years have passed and I can look back at all of this and see how far we've come. Shoot, I cannot wait to look back on this in a year and see how far we've come.
ALSO, we're closing on our house on Halloween. YAAAY! We're so excited, but that means we have a lot going on right now. A lot of transitions for Emma!
Things to pray for:
-Amelia's sweet heart, that it would by some miracle, improve!
-Emma. This is a lot for her, also.
-David and I.
-Strength
-The moving process!!
Thank you for reading my always long updates!
Love you all,
Kelly
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