ANNIE GRACE SABIN - March 30, 2010 - August 1, 2010

ANNIE GRACE SABIN - March 30, 2010 - August 1, 2010


Monday, April 5, 2010

Little Bumps In The Road

The last few days have had a few bumps in the road, but have mostly gone well. Friday was an emotional day for me to begin with. I think I have been running on adrenaline since Annie was born and by Friday was feeling spent, both physically and emotionally. We had asked about her bloodwork for DiGeorge on Thursday and no one in the NICU knew anything about it. They assured me that they would try to track it down, but on Friday said they had been unable to locate it and we would have to draw the blood again. I was frustrated by this, knowing that a lot of blood is needed for chromosome testing, but just wanted to get it over and done with. The nurses began trying to collect the blood and things went downhill from there. After three vein punches (I think that is what they called them), and a half an hour of listening to Annie cry, the lab informed them that because it was taking so long, the blood was already clotting and was no longer good. At that point I started to cry right along with Annie, so frustrated that even though we had taken measures to ensure we wouldn't have to do this, we were doing it anyway and our efforts so far were all for naught. They decided to take a break and give Annie (and Mom) a rest. Later, after I had left and Cameron was there, they did it again (this time in her arm, where the blood comes much more rapidly) and were able to get the blood they needed. The results will be back in 7-10 days, not in 48 hours like I had originally thought. I am relieved that this procedure is over and done with.

Annie seems to be working harder to breathe and on Saturday, the doctors ordered x-rays of her lungs because they were worried that she is trapping air. This means that she is able to get the air in, but not able to get it all out as she breathes. They said that if this was the case, and she was trapping a significant amount of air, they would not be able to send her home before surgery. The x-rays came back and looked good. She is not trapping air AND they said that her thymus is very large- a good sign that she does not have DiGeorge, as these kids usually have a very small thymus and sometimes no thymus at all.

Because she is working harder to breathe, the flow of her oxygen was increased yesterday. The nurse said that she seems a little congested and this is probably causing her to struggle. This gives me an idea of how miserable and scary it will be if she gets a full blown cold when we come home. We are going to have to be so careful about germs! They need to switch the type of oxygen assistance she is on in order for her to come home (right now they can adjust the percentage of oxygen and the flow can vary greatly, but the unit she comes home on will remain at 100 percent oxygen and allow me to make minor adjustments to her flow only). They don't want to switch her until her breathing is not so labored, so we are hoping this improves soon.

Her glucose has stabilized since they switched some of her feedings to a high calorie formula that is usually used for preemies. The only other issue we are working on is eating. She tires so quickly that it is difficult to get her to take an entire bottle. However, she is making progress (she was finally able to breastfeed yesterday) and we are grateful for every step in the right direction.

I still think we will be bringing her home sometime later this week if things continue as they are and she can jump these last few hurdles. What a happy day that will be!


  1. It's okay to break down and cry your human ;0)!! I hate the pokes. Ask for the IV team, they usually get it on the 1st poke. When Kylie was at PCMC for her 2 ohs I always tell them they get 1 poke and then to call the IV team. It's frusterating, they are just doing their job, but making you and your baby miserable!!! You need your rest, yes when the adrenaline wears off, It's hard to remember you JUST gave birth and under very stressfull conditions. I got put back into the hospital because I forgot about me. I think all heart babies have bumps in the road, Kylie had a couple, but did fine. That is so nice you will be able to bring her home for a while, with Kylie it was right away. Just want you to know we are thinking and praying for you guys and your sweet little Annie!!! Chrissie (fellow heart mom)

  2. Amy,
    I'm another heart mom with IHH. My daughter Elaina was born in January of 2008. She was not pre-diagnosed. Her original diagnosis was Tetralogy of Fallot with Pulmonary Atresia and VSD. Because of some other abnormalities with her heart, the team at PCMC decided not to do a traditional ToF repair, instead she had a BT Shunt at 10 days old, then the Glenn at 5 months. She also has DiGeorge Syndrome. If the tests come back positive for your little Annie, please know that there are lots of moms that will be here as a support for you. Being a heart mom is very difficult, but also very rewarding. I agree with Chrissie, get your rest. Take care of yourself, right now Annie has an amazing team of doctors and nurses looking after her, but once she's home, you will need the strength to be her nurse as well as her Mommy! I look forward to getting to know you, and wish you all the best, your family will be in my prayers.

    Heart Hugs!!
    Hollie and Elaina

  3. Hi I found your blog through IHH and i'm so happy to hear she's doing well :) I have a baby girl that has a heart defect as well, she is 1 now! Her name is Libbi. Dr. Menon is our cardiologist and we LOVE him! I read that you had met with him a time or 2. Good luck in your journey and we will keep in touch :)
    Mindi Dixon
    Libbi's mama

  4. Oops, her blog is wrong, sorry :)
    It's I forgot the 's' on libbi. Silly me :)

  5. Hi there, another friend from IHH! We are a huge support group online,and we've all been were you are, so if you ever have questions, feel free to ask. I have tons of heart friends on my blog too.
    Oh, and I definitely agree about calling IV team. I don't even let anyone else try anymore. IV team only!

  6. Just thought I would let you know that the emotions that flow are a normal part of being on this heart mom rollercoaster.
    Please let me know when you would like visitors and we will come visit you. It can be so overwhelming so we will wait until you feel is a good time. Until then it's great to see so many from IHH being supportive.
    Keeping your family in my thoughts and prayers.
    Carolyn Quigley
    IHH President