Surgery Day

Well, it is now 8:45am and the waiting has begun.

Yesterday was a long day. We left our house at 6am and got here at 8am (which was shocking). She had a bunch of tests and we spoke to a lot of people. The anesthesiologist came in and listened to her lungs. He asked me "does she always breathe this hard?" Yes.

He said that he was concerned and wanted to talk with the attending doc about it. I suctioned her and made him listen again. He said it was better, but was still concerned. I told him that she won't sound any better than she does now. He left and came back and said they were going to proceed. It is so funny how our normals are totally different. After talking to her cardiologist and her surgeon, I know we both felt better. We are just focusing on the positives this surgery will bring - no more extra oxygen, no more pulse ox monitor (well, at least not for cardiac reasons - we might just put it on her at night for trach reasons). Plus, she will feel better, work less to breathe and will grow at a much better rate. So, that's all exciting stuff for us.

They have decided to do the Glenn, and not the double switch. The double switch is too risky and the Glenn will be a safer operation. Sounds good to us. Basically, her right ventricle is too small to function as a 2 ventricle heart - so they will make the two that she has function as one. The Glenn is the 2nd out of 3 surgeries used to repair a heart with only 1 ventricle. Here is a link if you want to check it out:

http://www.inova.org/inovapublic.srt/heart/pediatric_services/cardiac_surgery/bidirectional_glenn.html

So, she will have the Fontan surgery when she is between 18 to 24 months. From what we've heard, the Glenn is the easiest procedure out of the three. The surgery takes about 3-4 hours, so we are thinking we will be able to see her sometime after 1:30pm. When we were checking her in this morning the lady said to Tom, "Dr. Jonas is the best - all his patients go home". That was comforting to hear.

After all the prep, the anesthesiologists came to get her at 7:30am. We stood there kind of awkwardly for a minute. Then I said, "Oh! You want me to give her to you?"

As far as how long she'll be here, we're not sure. It all really depends on her and how she does. Well, we just got a page and the surgery officially started at 8:55am. I will update as I can. I can't enter multiple entries in one day, so I will just have to add to the bottom of this one. So check back later. Thank you for all your kind words and prayers. We need them.

Talk to you soon,
Christy

10:58am - Got a page - She's been on the heart bypass machine for about one hour now. All is going well so far.

12:58 - Surgery is officially over. Tom and I spoke to Dr. Jonas and he said there were no surprises, which is great. He said the surgery went well. Anesthesia had a difficult time intubating her (same issue as after her birth). They removed her trach and put a tube in through her mouth. But her jaw abnormality makes getting into her trachea through her mouth VERY challenging. They used a scope or something. Dr. Jonas said they were very proud of themselves for their good work.

I don't know when they will reinsert her trach. Dr. Jonas decided not to remove the PA band. She has two small superior vena cavas (normally you have one big one). He said her two small ones mean higher risk of blood clots. And since they are small, he decided to leave the pulmonary artery in place with the band, to give her some extra blood flow and oxygenation. It will make the next procedure a little more difficult, but the benefit to her now outweighs that.

There was quite a bit of adhesions (scarring) in/around her heart due to the previous operation. This is different for everyone - just your body's way of responding. This just means higher possibility of excessive bleeding. So they will be watching closely for that.

As always, the next 24-48 hours are critical. She will be brought into the isolation room in the CICU (cardiac intensive care unit). We just got word that we can go see her at 2pm.

3:00 UPDATE:

Harlie is now in the CICU and resting comfortably. She has about 100 lines/tubes connected which is normal for this operation. We posted some photos if you would like to see her. Her cardiologist came by and said that she was really happy with how pink she is. Evidently Harlie was blue yesterday due to her poor circulation. I told her I didn't notice and she told me not to feel bad. Most moms and dads don't notice since we see her every day, and she probably has never been really pink anyway.

They are really happy with her weight gain considering her cardiac issues. She weighed 11 pounds, 1 ounce yesterday. We will probably continue to fortify my milk and give her fortified formula at night till she makes it on the growth chart. They are going to leave the ET tube (airway) in her mouth till ENT gets by to evaluate her stoma (hole in her throat) and trach size. They are thinking it might be time to go up a size. I know that needs to happen, but every now and again when we would suction her, some air would go past the trach and she would make a little squeak. When the trach gets bigger that won't happen.

Since she has the ET tube in, they will keep her sedated until her trach is back in place. Then they will start to let her wake up a bit and hopefully get her off the vent. Although it is really nice to see her neck without the trach ties in the way!

Well, I guess that's pretty much it for today. Thank you for all your kind words, thoughts and prayers. I know we are high maintenance right now and we can't tell you how much we appreciate that you take time to check up on us and think about us. Harlie is an amazing little girl and we feel lucky to be her mom and dad.

Love,
Christy xoxo