December 1, 2009

Cardiology Update and more

Alexa had her cardiologist visit on Friday, November 20th. She weighed 22 pounds 5 ounces. I cannot remember her height. Her oxygen sats were 79. For the first time Alexa was walking around the little room before Dr. P came in. He was happy to see her walking. As soon as he opened the door and the assistant was walking out from doing her vitals he asked her "What are her o2 Sats? He was pleasantly surprised. He told me he really thought they were going to be lower. Especially since her visit the ER and I had told him they kept bouncing around from to very low to her normal. We talked about how she is doing and talked a lot about surgeons and locations. Alexa had her last surgery at our local children's hospital with Dr. T. Now Dr. T is in another city.  I would like Dr. T to operate again because he has already been into her heart and knows the work he did before and not to forget he is an excellent surgeon. The problem is the location, that it is farther to us, and that all of my support system is here and that I have older children to think about and care for. I'm also worried about the amount/experience of this new hospital in dealing with babies after open heart surgeries, like the intensivist, nurses etc. So I have considered staying here and seeing someone at another great local hospital or maybe even going to C.S. Motts in Michigan with Dr. Bove. It's a hard heavy choice. I really just wish Dr. T was still here like before, that way I at least know the hospital, it is close by, and I trust Dr. T. Now no matter what, where, who we choose there will be something new. Open heart surgery is scary in and of itself and dealing with new unknown surroundings and people when you are trusting them with your child's life is overwhelming. I guess I just need to make some calls, maybe some appointments and just pray really hard on the matter. For a while we had been going to see Dr. P every 6 weeks. He now said he wanted to see us in 4 weeks. He said he might order a cath next time he sees us to be done in January. I was kind of surprised and sad by this. He said it was just a delicate balance we have to have with her and explained that she is pretty much done with that steep growing curve and so now waiting a month or two is not going to be much of a difference in the size of conduit they can place. I told him I just don't want her to have to 2 caths and he said no just one would be needed. I know he is thinking Cath in Jan and start thinking surgery in Feb/March. He said he would agree to wait a bit longer for the cath if her o2 Sats did not change or dip by the next appointment. Because of his schedule we will not be seeing again until December 31st. In the mean time I will just enjoy my baby and try to push surgery thoughts besides the planning out of my head.

Also, Alexa is currently sick. She started running a fever Sunday night, all day yesterday she felt awful, she was tired and achy didn't walk around the house and just wanted to be carried and held. It wasn't till her big brother and sister came home from school that she perked up a little bit. She was running a fever between 100 and 101. something. I called her cardiologist to see if it was okay to still giver her the baby aspirin she takes, he got on the phone with me and explained yes and why. He also wanted to know her symptoms and how she was doing. He suggested to call the peds office as he was worried about the flu. I called them as soon as I got of the phone but they told me to wait and see if how she did and if any other symptoms developed since she didn't have any other cold/flu type symptoms. She is currently still asleep this morning so I hope she has a better day. She did sleep better last night. I only gave her Tylenol once around 11 p.m.

Here are some random pics of the last few days.

In a cute dress after a morning in the ministry.

With cousins.

Her favorite playing outside with rocks and dirt.

Princess cousins.

Lot's of feathered visitors.

With my honey.


  1. Awww...She's so cute! Don't you hate the wait and see that comes with CHD? I know you'll make the right decision when it comes time to choose a surgeon/hospital. Just remember, no second-guessing afterwards!

    Lisa @
    All That and a Box of Rocks

  2. Oh Michelle! This is the hardest part, all the waiting and wondering and worrying about what do do, and the pressure of making the best choices for your daughter. Please know that you're not alone on this path and that we'll keep you in our thoughts and prayers, specifically for guidance. One of our dear heart friends just wrote on her carepage about the need for guidance and clarity and how it brings such peace when making these difficult and weighty decisions. We've all been there, and it is difficult, but I know that you will get through it!

    I hope that Alexa feels better soon! I'm so glad to hear that her sats are staying up and that your cardiologist is pleased with her progress. That's all wonderful news. Claire and Alexa's paths have been a little different, but if there's anything I can do to ease your mind, please feel free to contact me. In the meantime, I hope you have a wonderful Christmas season, celebrating with your beautiful family!

    heart hugs,

  3. Michelle,
    I know it is so hard when your surgeon moves and you have to make those tough choices on top of worrying about the actual surgery. We went through that before Logan was to have his Rastelli. His first surgeon left to go to Mayo so we were stuck deciding to travel so far away from our support system and our older child or take a chance on the new surgeon closer to home. We were glad we gave the new surgeon a chance and we absolutely LOVE him.

    Praying that you find the answers you are looking for!


    Stef, Ryan, Wyatt and Logan

  4. Hi I'm so glad to read about this and hear your story. I am a mom to the most wonderful kids. A son 12 and a daughter 9. My beautiful little girl Mallorie was born with Transposition of the great arteries September 12, 2000. It was an unbelievable time in our lives. I took care of myself during my pregnancy and got my prenatal care and didn't even take antibiotics once. I have been told that in some cases heart disease is genetic. Some days I look back and smile and remember how blessed we are and some days I look back and cry, remembering what all she went through and what we went through along with her. I will tell you she is so healthy. I am in amazement. She went through so much and her recovery was longer than most. When she got to Texas Children's Hospital she was so weak. They did the balloon procedure to give her a few days to get stronger. She had the surgery at 3 days old and stayed in the hospital for a month, went home for a week and we had to go back in b/c her incision got infected and she had to have a second-unplanned surgery to remove the infected tissue and she stayed another week in the hospital after that. She is doing so well, with a yearly cardiology visit to the most outstanding doctor that has made every decision along the way since birth. Dr. Antonio Mott at Texas Children's Hospital. Every visit we go back, he is even more and more thrilled with her progress. Mallorie runs and plays and does anything a normal child can do and more. I will tell you being 9 and a girl, she is very vain...she does notice her scar and the look of it bothers her but we reassure her how much that does not matter and how much she matters. I love to know that I am not alone - being a mom of a cardiac child is scary...sometimes I feel alone. I have tons and tons of family that love me and her so much but I feel alone being a mom of a heart baby and I want to be the best I can be. I feel like this is completely a learning process. Every year I do this is still learning. I like knowing you mom's are out there too. Thank you for doing this :) Merry Christmas and God Bless the HEART babies out there.
    Brandie Norris (spring,tx)


You Might Also Enjoy

Blogger WidgetsRecent Posts Widget for Blogger