Tuesday, May 11, 2010

Heart Surgery Day

Yep, this is my daughter....lol,,.(-:

5:30 am this morning: I was lying in bed, hearing Addison begin to stir, and knew I needed to get up. After getting very little sleep since arriving in Boston two days ago, I thought how unfair it was that not only did I have to leave my warm bed, I also had to leave my warm bed to take my baby to surgery. She had the first surgery slot of the day which meant that not only did we have to be there at 7am, I also had to get up at 2am to do her last feed. I'm not complaining, mind you. I was glad to get this started as early as possible so that we could go home as early as possible. I just am not a morning person. There isn't enough coffee in the world.

We arrived at 7am, checked in and began to wait. While we waited, we were sitting next to a lady dressed a lot like an Orthodox Jew, and as we talked, I found out that she was one. She had come from Israel, bringing her six month old (who was about the same size as Addison) to have some holes closed up in her heart. We chatted, and I thought that she couldn't be that much older than me, and then I found out that she has eleven other children waiting at home for her, 15 and under (with two sets of twins in there somewhere), and I thought...she must be a lot older than me...still not sure of her age. When we finally got called to go up to surgery (closer to 8am), they called us up together. It was nice because Aaron wasn't there yet (he was stuck in horrible traffic coming in from Vermont) and her husband for some reason wasn't there either, so we walked up to surgery together, finding some comfort in the company.

It was now closer to 8:30 when we got to pre-op holding area. My Israelite friend and her baby were placed in the holding area right next to ours. Addison and I were then descended upon by a team of anesthesiologists who gave me a grape flavored sedative that I was to feed to Addison. Since she was smacking her lips by this point, she eagerly took the substance, stopping only slightly to make a face when she recognized that this was a foreign taste. I then held her, and she was very responsive....cooing and smiling. As the sedative began to take effect, these actions became a bit drunken. I was laughing at her and enjoying her being so transparent with how she was feeling. One of the anesthesiologists held out her arms and one of the others grabbed her oxygen tank. As I handed over Addison, she decided that the cooing time was over and that she did not like this sensation. She began to scream, and instead of being able to comfort her, I had to watch as they began to walk through double doors to an unknown area where the surgery would take place. One of the team had stayed behind and she immediately pushed a kleenex box in my hands. I hadn't begun to cry, so I was surprised by her anticipatory act. She then took me to a surgery waiting area where I would then wait until 10:15 before I heard anything. All this time, Aaron was still stuck in traffic, so I was all alone. But, I didn't really feel alone. I pumped, found out where to take my milk, found some coffee and an amazing cranberry orange muffin, and took the time to catch up on all of the supportive facebook posts. I could really feel the support of all of you praying for me because normally I would have been a bit of a basket case, especially since she was so upset when I left her, but I was pretty calm and confident that the Lord was at work here- who was I to worry and fret?

Aaron arrived a little before the surgeon came to give us a report. Everything went well, he said. Her hole was quite a bit larger than they had anticipated, but was now closed with a titanium clip. They were hoping that this would help dramatically reduce her pulmonary hypertension, but we would only know by waiting.

At this point, we were able to go to the Cardiac Intensive Care Unit floor and wait now in their waiting room for at least another two hours. They had to bring Addison up to the floor and then they took a while to clean her up before they would let us see her. It was funny because the waiting room was so crowded and I so desperately wanted to talk to my husband. So, we both logged on to our laptops and chatted on facebook. I'm sure we looked super dorky, but it was so nice to be able to just talk honestly with each other without people overhearing. When they finally called us in, we went in together to see our daughter who now has one fewer hole in her heart. This is how we found her: It was a bit of a shock, since she was looking so great before the surgery. I had a NICU flashback. It was really great at this point that Aaron was there. She was still out cold, so we assured ourselves that she was indeed OK and then finally went to find something to eat.

It was later in the day, after waiting by her side for hours, that she started to wake up. I had some lovely classical music playing for her and we kept talking to her- assuring her that we were here for her and that we loved her. While she was sleeping, she managed to get her hand out of her restraints four times....the nurses were as baffled as we were as to how she managed this....we were reminded once again of her escape artist tendencies. Also, when she was waking up, she started to choke out her intubation tube. At that point, they decided to take it out. (-:

Now, Aaron has gone back to Vermont- Mother is holding down the fort at the hotel, and I am spending the night by Addison's side. Her throat is pretty sore- she sounds a bit like a frog with a cold when she cries or tries to make any noise. They allowed me to give her a bottle at 8:00, and she all but inhaled it. I think it felt good on her throat, and she had been smacking her lips since 5:00 when the intubation was taken out.

Hoping she continues to improve throughout the night and tomorrow. We are looking at coming home on Thursday if all goes well.

I put her friend up against her in bed, so she wouldn't feel alone when I had to leave to pump and such...

This was this morning before the surgery...she was so happy and alert...hope she returns to this state soon.
This was yesterday, all dressed up for a day of appointments. She had a chest x-ray; blood work; an echo, an EKG; was weighed, measured, monitored etc; met with her surgeon, cardiologist and anesthesiologist; and had all sorts of questions and information and "what ifs" thrown her way; settled out insurance information; and it seems like other things that I can't even remember. Hardly even time to eat lunch. It was such an exhausting day. So glad to have my mother there for a second pair of hands. We also met lots of kindred spirits. One mom had a baby who only had half a heart. One mom had identical twin boys that were two weeks older than Addison. Both had Down Syndrome and both were having heart surgery today. One mom had a baby who was only able to use one lung. The more we talked to the other parents, the more confident we felt in the surgeons here at Boston's Children Hospital.

Snug as a bug in a rug...all bundled up in her makeshift bed in the hotel room. She seemed to love it!


  1. Thanks for the update! Praying.

  2. Comforting to read, Deanna, thank you. You are an amazing woman with an amazing God!
    ~ Sylvia

  3. I know that you don't know me, but I came to this blog-site through a mutual friend. I wanted to let you know that my daughters and I have been thinking about and praying for your precious little one all day yesterday and today and we are so grateful to our Awesome God that she came safely through surgery! You will all continue to be in our prayers, as your sweet baby is nestled firmly in our hearts! Stephanie

  4. Deanna, I can't imagine what you're going thru. You make it sound so easy even though I'm sure it's not. I'm so glad Addison made it thru the surgery and I hope that took care of the hypertension. You are an amazing person. I'm so glad that Aunt Ruth is there with you to add a level of comfort to all of this.
    Your cousin,

  5. Deanna, I am so glad that everything went well with the surgery, I was thinking about you and about baby Addison all day today. I hope you get to go home soon.

  6. What a brave little girl (and a super brave Mom!) You guys are amazing to us, and we're so grateful to be able to read about all that's taking place in your lives. Hugs to that precious girl from us!

  7. Dear Ones-----God is good------you have been in my thoughts and prayers and now we trust the Lord to bring daily improvements for Addison-she is blessed to have you two as parents and God gave you a precious little one to care for-blessings*

  8. Praying for the healing of your precious little girl!!

  9. It was so nice to see the link for your blog. Allowing our family to get updates on all of Addisons'big day. We prayed thru out the day for all of your needs. God is so awesome in never giving us more than we can handle, and then giving us the grace to handle all these difficult things.


Thanks for reading about my Everything and Nothing. I would love to hear from you!