The first of many appointments

I wanted to document this journey we’re on dealing with Adara’s heart defect.

I’m sitting here trying to figure out why.  Why do I want to document this on my blog?  I guess for a few reasons.

  • It is one way to keep people up to date about what is going on.  There are so many wonderful people who care and are praying for her and this is one way I can relay information and updates.
  • Maybe it can help someone else someday who may have to walk this road.  Or who are walking it at this time.  We can deal with all this together.
  • It helps me process things to write it out.
  • I am so sleep deprived I forget things.  This way, I can have a record of this to look back on when I need to….because I’m very forgetful since I am SO tired….did I mention that already?  I can’t remember….

We found out when I was about 24 weeks pregnant that Adara has a hole in her heart called a VSD.  Because of the size and placement of the hole and the fact that the aorta grew slightly askew she also has mild Tetrology of Fallot.  These heart defects require open heart surgery for my sweet little baby girl in the next few months.

We knew this before she was born.  While it was devastating news, it was a good thing to know early so we can be on top of it.

But now that she is here, she looks healthy.  If you heard her LOUD, STRONG cry, you would never believe that anything was wrong with her at all!  She seems like a normal newborn.  I want her to be a normal newborn!

But she’s not totally normal.  The hole in her heart has already caused some problems.

We saw the pediatric cardiologist on February 29 (not a very exciting way to spend Leap Day!).  At three weeks old she was already showing heart failure symptoms.  Her heart was slightly enlarged and working extra hard pumping extra blood.  Her liver was slightly enlarged due to the extra blood.  And her lungs had some fluid in them.  The cardiologist said that all this is to be expected at 3 weeks of age and nothing is “out of the ordinary” for her condition.  So, we had to start her on two heart medications: Lasix and Digoxin.

Getting ready for the EKG. She did really good dealing with all those stickers!

 

Still tolerating things really well!

 

A little snuggling while the EKG is getting done. Gotta keep her warm!

 

The doctor checking out her liver. She's such a great doctor!

Also, since her heart and lungs are working extra hard, it’s like her little body is exercising so she’s been burning too many calories.  I have been taking her to the pediatrician every week to get her weight checked and getting so discouraged each week when she’d only gain one ounce.  At 4 weeks old she was still not back up to her birth weight.  Usually babies should be back to their birth weight by 2 weeks old.  So I had to get aggressive with her feeding.  I have to wake her every 2 hours to nurse her and supplement with breast milk or formula.  It’s pretty exhausting.  But I am VERY pleased to say that today we went in to get her weighed again and she gained 8 ounces in 3 days!!!  She is now 2 ounces OVER her birth weight at 4.5 weeks old!!

It’s been hard though.  I feel like I am just maintaining this little life.  I watch the clock to feed her and make sure to remember to give her her medicine (did I mention the extreme exhaustion has clouded my memory these days???).  I’m just working to keep her alive and healthy.  I don’t feel like I’m getting to enjoy her yet.

I look at her chest when I get her dressed or give her a bath and just cry.  That perfect little chest is very soon going to have a huge scar on it.  It breaks my heart in a million pieces.  I wish I could give her mine so she wouldn’t have to do this!  I wish I could go through the surgery!

But I can’t.  All I can do right now is take care of her and make sure she is as healthy as can be and gets what she needs as much as I am able.

We are SO thankful for the many, many people who are praying for this sweet little girl and for our family!  She is very loved!

We see the cardiologist again this Wednesday.  I will update again after that appointment and see how things have progressed these last two weeks.

Sorry this post isn’t more eloquent….did I mention I haven’t gotten much sleep this past month??  Lack of quality sleep can do funny things to your brain!

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8 thoughts on “The first of many appointments

  1. Hello! You don’t know me but I’ve been following your blog for some time.

    I don’t know what it is like to have a child who has VSD but I have a sister who is adopted from China and she had VSD. She had heart surgery and now is going to be 12 in April of this year.

    I will be praying for you guys as you go through this journey.

  2. Prayers for her and for you! I know you have so much on your heart, but if you start to feel like you’re drowning in it all please reach out! ❤ It would be totally understandable given the circumstances, but you also don't have to do it alone. I know we're not super close, but if you need anything or would enjoy some company at any point I'm there!

  3. I realize I only know you from your blog, but I want you to know I’m praying for you and your sweet little girl (and hubby and little boy) when I can. A couple of days ago, I thought about you because I hadn’t seen your blog in a while and I thought for sure that you must have had the babe and was hoping things had gone well. I’m thrilled that you had a good birth experience, but even happier that you and baby are doing well. I can’t even imagine how scary it is to have a baby who needs surgery, but I will be praying for you.

  4. I can honestly say I know what you are going through. My son had VSD, ASD, transposition of the greater vessels, and aortic stenosis. We found out the night before I was induced. He had 13he open heart surgery when he was 10 days old. I’m so glad you have God, a good family, and friends. I won’t lie it’s terrifying when your child is in surgery, especially when they come out swollen and bruised not looking like your child at all. But when I look at my child’s chest I cry too because we are so blessed that he is here. God’s grace brought us through. He has a scar (which is pretty big because he was too swollen to sew up for a week, so he had another surgery to close his chest)

  5. (Continuation of earlier post, my phone sent half the message) I wanted to let you know my son had a bigger scar than normal and his has significantly faded. With your beautiful baby they may use this type of glue instead of stitches or staples. I know it’s a terrible ordeal for you and your baby to go through, but God never gives us more than we can handle. Children are a blessing and resilient. My son now takes his 6 medications like a pro. We are praying he grows out of needing them. Thank you so much for sharing. I’ll be praying for your family.

  6. Wow, congratulations on the birth of your beautiful daughter! Praying for you all on this journey…Jesus holds that little precious heart in His hands! Especially praying for smooth surgery for Adara, that the doctors’ hands would be guided and that she will be made whole.

  7. I will be praying for Adara and for you and your husband. I know that God is able to give you peace, and I am believing that everything will go well with the surgery.

  8. Sounds like you two ladies are very strong. God is with your family through this, and in your cloudy memory don’t forget to lean on Him and ask Him! Such a gorgeous daughter you have. =)

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