Surgery Update

Cousins!

Yesterday I received a call from CHOA's surgery scheduler, Tracy. She informed me that they received all of Emma Kate's cath information from Dr. Law and they were ready to schedule her Glenn. Her surgery will be on Friday, January 23.

I am so ready for this surgery. I know that sounds dumb, but Emma Kate is getting more and more blue. Her oxygen sats are getting lower. She seems to be getting tired a bit more easily; she sleeps a little more. I know you can't really tell in pictures and you might not be able to tell even by just looking at her in passing. But trust me, she is a lot more blue than she was even a month ago. I know this surgery isn't going to "fix" her, but I feel that it is another step to her getting better.

Tracy said that the main thing with this surgery is getting through the scar tissue from the last surgery. Depending on how long that takes, the procedure will take about 3 to 4 hours. During the Glenn, "the shunt is removed, and the superior vena cava (the large vein that brings oxygen-poor blood from the head and arms back to the heart) is connected to the right pulmonary artery. Blood from the head and arms passively flows into the pulmonary artery and proceeds to the lungs to receive oxygen." Apparently she will still remain "mildly cyanotic" (blue) after this procedure. "This operation helps create some of the connections necessary for the final operation, the Fontan procedure."

We've been told to be prepared for a pretty fussy baby after the Glenn. Because of the redirection of the blood flow from the top half of the body, they think that these babies get headaches. This fussiness lasts a couple of weeks. :( One good thing about this surgery is that it generally has a pretty quick recovery time. We were told that she will probably be in CICU for 2 days and recovery about 3 or 4. So maybe just one week total!

Please keep Emma Kate and her surgeon, doctors and nurses in your prayers as we prepare for this next big step!

Happy 4 Month Birthday, Emma Kate!

Emma Kate turned 4 months old yesterday! I can hardly believe it! (I know I say this every month). I love this age. I took her to see the doctor yesterday for her 4 month check up. Everything looks great and Dr. Stone is very pleased! Emma Kate is 11 pounds, 1/2 ounce. She's 23 inches long. She's tiny, in the 10th percentile for both, but that is ok. She has always been a tiny girl. Her progress is just fine.

She is starting to look a bit more blue than she ever has. Her pulse/ox reading was averaging about 68% yesterday and that had me a bit worried. (FYI: pulse/ox reader indirectly measures the amount of oxygen in the blood. People with "normal" hearts would probably have a reading of 99 or 100). Emma Kate's average readings have been anywhere from 75 to 85. I called the cardio. office just to double check that she was within normal range. The nurse told me that she should be just fine, but she is telling us that it is time for her Glenn. We are still waiting to hear from Dr. Kirshbom's office about when her second surgery will be. All the cath information was sent over to Atlanta last Saturday, so it has only been one week. We are very anxious, though!


Emma Kate,

You are so very sweet! I am so glad that we've had the last 4 months to get to know you and love you! Your personality is starting to really show. You can sleep through anything still and you are picky about very few things. You are still eating well and we are so proud of you. You eat about 2 or 3 ounces every 2 to 3 hours. You are enjoying the bottle. You had a heart cath last week and you rebounded from that like a little champ! I was so afraid that you wouldn't get your sweet, smiling personality back, but you did after only a day! I know that was so hard on you, sweetie. We are still waiting to hear when your next surgery date will be.

One of your favorite things is your sister. If she is in the same room as you, you cannot stop staring at her. She is all over the place and you follow her around the room with your eyes constantly! We can tell you love her. Anna Brooke loves you, too! She is always talking to you and saying sweet things to you. You also love to look in the mirror, especially at yourself! You laugh and giggle like crazy when you see that cute little girl in the mirror! It is a precious thing to watch. You also love sitting up in your Bumbo chair. You are getting so strong. You're holding your head up really well and you're doing great on your tummy. You prefer sleeping on your left side at night. Your cheeks are so CHUBBY!  We love to kiss them! :)

Some other things you are doing at 4 months old: you laugh and giggle a lot! (You're very ticklish, too). You are grabbing toys with your hands and you love to kick your little legs and push your feet against things. You scoot around your crib or on the floor when we put you down. You also chew on your hands a lot and you're drooling quite a bit.

We love you, Emma Katie. You continue to be such a blessing to our family!

Love,
Mommy

My Sweet, Silly Girls

just goofin' around

A little about our day

Well, we are home! Today was a long day, especially for Emma Kate. We are glad to be done with it! But I couldn't have asked for it to go better than it did. Emma Kate and I got to admitting a UAB hospital a little after 6 this morning. There were a lot of little old ladies in the waiting room who were ooohh-ing and aaahh-ing over her. She was wide awake and very happy. She loves the attention. She had such a great morning, despite being hungry, poor thing. She had her last bottle at 3:30am. She didn't start really getting fussy until about 10am. We expected to have her in the cath lab well before 10, but there was an emergency procedure that had to be done. So around 11, I got to walk EK down to the lab with one of the hospital staff. He was great with her! He had her smiling when he took her behind the doors and that made me happy. I went and got some cafeteria food and came back to the room. About 90 minutes later, Dr. Law called and basically said everything went perfectly! What a relief!

Thank you, God, for our little blessing, Emma Kate! Thank You for sending Your angels to watch over her and keep her safe! Thank you for her doctors and nurses that have taken such great care of her. We are truly grateful! We are so thankful to all of you who have been keeping us in your prayers and thoughts! They are truly what is carrying us through all of this!

In Recovery

Emma Kate's heart cath is complete and she is in recovery! Her procedure didn't begin until around 11am and only took 1 1/2 hours which is definitely a good sign. Dr. Law said that everything looked great from the cath and he feels she should have a good recovery. Emma Kate should be in recovery for around 90 minutes and then she will be taken to a private room to be observed. If all goes well, she might even be able to come home tonight! We will update again once we have more info. Thanks for your prayers!

This Thursday...

... is Emma Kate's heart catheterization procedure! Please be in prayer for her, her cardiologist (Dr. Law) and the nurses and other hospital staff. Most likely this will be an overnight stay. I am getting more nervous about it, but I know that God is in control and we have so many people praying. Thank you!

In case you are interested in learning more about what a cardiac cath is click HERE.We will update the blog as soon as we have a computer and time to do so.

Quick Update!

We took Emma Kate to see Dr. Stone (pedi) on Tuesday to follow up on her ear infection. She has been acting so much better the past several days, thankfully! She's been such a sweetheart, smiling and laughing at us all the time. I really feel like she's showing us her little personality. She's always happy, that sweet girl. While we were at the doctor's we had blood drawn. This was just to check to see if she is anemic before her heart catheterization next week. Everything looks normal!

After the visit with Dr. Stone, we went to visit Dr. Law, her cardiologist. Brooks got to come with us, too. Again, everything looks great. The blood flow looks good and the squeeze of her heart is good, too. Apparently the regurgitation in her tricuspid valve is looking better, also, due to the increase in her medications. Dr. Law also looked at her aorta and said that sometimes the aortic arch might narrow as time goes on, and if it does, they can use a ballooning procedure during the cath to stretch it out a bit. However, her echo did not reveal anything to give him reason to believe that this will be the case next week. Yay!

I spoke with a nurse about Emma Kate's cath, which is next Thursday. We will be able to walk her down to the lab. They will give her medication to sedate her for the procedure. This procedure will tell us how her heart is doing from the inside, if that makes sense. It will measure pressures, blood flow, take pictures, etc. This is a fairly routine procedure, but I am still pretty nervous about it. I mean, inserting a probe into the groin and going up into the heart sounds a bit scary to me. But I know that they know exactly what they're doing and I have fully confidence in them! Please keep Emma Kate in your prayers next week!

After the cath we will know more about when her Glenn (2nd surgery) will be. Dr. Law's prediction was the beginning of January. We have no way of knowing for sure, though, until he sends all of the info over to Atlanta for Dr. Kirshbom (surgeon) to review. Of course, I'll update as soon as we know.

We're glad things seem to be going so well with Emma Kate. We're so proud of her. She has discovered her hands and is always grabbing things now. Not really reaching for them yet, but she's sucking on her fingers holding on tight to toys, etc. She is such a flirt, too. She smiles at just about everyone she sees. She admires her big sister so much. She's always watching what she's doing. I have been trying to put her on her tummy more often, and I think she'll start rolling over soon once she gets a bit stronger. She is a wiggle-worm. She loves her Bumbo chair, which allows her to sit up and look around. :)

Okay, time to go to bed! This "quick" update took me almost an hour to do! Thank you all for you love and support and prayers! We will keep you posted!