Post-Op +3

We came in this morning to be surprised that Harlie is now out of the CICU. They moved her up to the PICU (pediatric ICU) to make room for another child. She would have been moved out to the floor (less intensive care) but they are treating her trach as a new one, which is kinda of silly but who am I to tell them that.

Anyway, she is down to just a few connections and the main arterial line will come out today leaving only an IV or 2 for meds. She is back on her presurgery feeding schedule and is tolerating them just fine.

OT and PT will be working with her today as they can. We requested a consult with Orthopedics to discuss our recent findings with her cervical spine and the other spine related issues we learned at birth. This is a topic we really haven't talked to any specialist about. I am dreading this one truthfully.

We are also hoping to talk to genetics today to followup on the testing that was done after birth. They told us back then they didnt expect to find anything that would tell the story of why this happened (or if it could happen again). Hopefully this will remain the story after we hear from them.

Okay, that's about it so far today. Harlie continues to recover as planned. I know we can't take her home until after her first trach change on Monday or Tuesday, but as of now, there isn't anything that would keep us here longer than that. If that is the case, that gets us home in 1 week. Not too shabby for a 5 month old on her 5th surgery (two of which were open heart).

Thanks for the support,
Tom

2nd Day Post-Op

Hi. Everything seems to be going well. They had to re-do Harlie's tracheostomy yesterday afternoon. They decided that she could go up 2 trach sizes. So hopefully that will give her a little more breathing room. They had to close up the stoma for the heart surgery because they can't sterilize it for surgery. So, they close it and patch it and try to clean the whole area as much as possible to avoid infection. So now they are treating her as a new tracheostomy patient which means that the trach stays in place for one week until ENT comes to change it and make sure everything is healing okay. That is scheduled for Tuesday.

Her cardiologist came by yesterday and said that ENT still talks about Harlie from when she was admitted after birth. Apparently, Washington Hosptial Center (next door where she was born) rarely calls someone from Children's to come and help intubate a patient. So, the severity of her jaw abnormalities are quite rare and memorable. To have so many rare things happen in one little girl, what gives? As she said, Harlie is one in a million.

Anyway, they are going to start feeding her today. I think they are going to start with unfortified breastmilk on a slow drip to make sure she tolerates it and then work up from that.

They took her off the vent at 6am this morning. And they will start removing the chest tubes today. Out of everything, those are the worst to see. So, we will be glad when those are gone.

I have to run now, but will update this entry as things develop. As always, thank you for all your thoughts and prayers.

Love,
Christy

12:40pm - The chest tubes are out. Hopefully this will make Harlie a little more comfortable. The surgeon reminded us that since the trach is right on top of her chest incision, infection is very possible. He said that normally the risk of infection is about 5%, but because of her gastrostomy and tracheostomy, the risk is about 50%. But they will continue to watch her closely, so we're not too worried. Okay, gotta go. Thanks for checking back!

3:40pm - Well, Harlie is definitely more alert now. She broke our hearts earlier when she saw us and started to cry. That girl is really something. She only cried for a minute and seemed to calm down and just look around. She was definitely upset when he was removing the chest tubes, but as soon as he left her alone, she was wiped out and went to sleep. She is starting to look more like herself. The swelling is starting to go down a bit.

PT and OT have come by to see her. The PT put her in a sitting up position. I am such a chicken, if it were up to me I wouldn't move her an inch!!! But surprisingly, she seemed to dig it. I remembered that when we did her barium swallow study she was all strapped down and couldn't put her hands in her mouth - and when they gave her a bottle, she sucked right away. So, I thought since her hands are all strapped down again, and she couldn't put her fingers in there, maybe the same would happen. So, we gave her a pacifier and she started sucking right away! We were so glad to see that because she hasn't sucked in such a long time. The OT said she wants to capitalize on that and start trying to get her to do some oral feedings while she's here. She's going to put a tube in the pacifier and connect it to a syringe so she can control the amount that she sucks. I'm excited about that. I would love to make some progress on that while we can. Well, it's time to get back in there. Talk to you later!

1st Day Post-Op

Well, she looks pretty good today. Definitely getting that swollen look. They are giving her lasix to start helping her to get rid of that extra fluid. She certainly is pink - so pink, in fact, that she looks red to me!

She's already starting to move around and kick her legs. She even opened her eyes and looked around. She's grimmaced a couple of times, but other than that looks fairly comfortable. As long as she is asleep, I am fine. When she starts to wake up, I think that's when it will become much more difficult for us.

We spoke with ENT today and they are taking her back into the OR this afternoon to re-do her tracheostomy. They had to close it for her surgery yesterday. They will determine if she needs a larger trach size. They are working her in today, so we don't know what time that will be.

They have weaned her down to 30% oxygen (21% is room air) from 60% yesterday. But, that doesn't really mean much considering she'll be back in the OR this afternoon. So, that process will have to start over after that. It is really weird to be back here. But I have to say that it is SO much better to be here NOT post-partum!!! Looking back, I don't know how I did it.

Well, I'll provide more updates as I can. As always, thank you for your support.
Love, Christy

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

Sunday Night

Well, it is Sunday night and we are packing for our trip tomorrow. After a lot of thought we decided to stay at the hotel that is on the upper floors of the Washington Hospital Center, which is right next to Children’s National Medical Center. That way, we don’t have to worry about driving and we can be very close to Harlie. We will stay there the first week and then play the rest of the stay by ear. Originally, we planned to leave tonight so we wouldn’t have to worry about getting to her pre-op appointment on time (10am). But the hotel didn’t have any available rooms, and to be honest, Tom and I didn’t have the energy to load up tonight anyway. Harlie has had a couple of rough nights, and we haven’t gotten much sleep. We are keeping our fingers crossed that she is well enough for surgery as planned, but I guess tomorrow we’ll find out for sure. (There is a link to CNMC under my favorite links just in case you want to check it out).

For her pre-op appointment they will run some tests, x-rays and blood work, etc. It will be an all-day thing. We should be able to talk to her cardiologist and surgeon about what the plan is and what we can expect as far as duration of the surgery and recovery time. We are very nervous and scared, but we just need to put our blinders on and put one foot in front of the other till we get through this. I keep looking at the potential positives -(besides better heart function) possibly getting her off oxygen, losing the pulse ox monitor, better growth, etc.

Well, this weekend Tom’s family was in town. Since Saturday was such a nice day (although very windy) we decided to go to the park. Our day nurse (Brandy) went with us, which was SOOOO helpful. She took care of Harlie so I could run around with Murphy. Murphy and I needed a little fun out of the house together. I have to admit that I felt like such a dork having the stroller at the park! Well, I’ve got to go. I will update the site as I can. And we will be checking messages and e-mail throughout the week if you want to reach us.

Take care and we’ll be in touch soon,
-Christy

Quick one

Well, today we go to get her cranial band. If I get some good pics I'll post them over the weekend.

Yesterday we went to see the pediatrician. Harlie weighed 10 pounds 11 ounces. I am so anxious to see how her weight gain changes after her surgery next week.

Some people have asked for the information on where we'll be. I'll post more details over the weekend. We leave Sunday night. She has to be there early Monday morning for all the pre-op exams and that's when we should get to talk to the surgeon and her cardiologist to find out what their plan is. Then I believe her surgery will be early Tuesday morning.

On another note, Jameson's surgery went well. I'll let you know how she's doing when I hear more.Okay, I'll update over the weekend. Talk to you later.

Take care,
Christy

Thank you!

Thank you to those of you that offered your blood! Sounds weird, but what a great way to help Harlie! So far, it looks like we have 4 donors, which is fabulous.

Thank you Bruce (my big brother), Nancy (his wife), Cabell (my little brother) and Gina Barnes (Pampered Chef)!!! We are so grateful that you are all willing to take the time and effort to do this for Harlie!

Well, our physical therapist came yesterday for Harlie’s weekly “workout” session. I am so glad that she comes to see her every week. She shows me stuff that Harlie can do that I just don’t realize. Since she is still so tiny, I still think of her as a newborn! She is very close to rolling over and she actually enjoyed her tummy time. And she continues to get better at her head control.

We have an appointment with her pediatrician today and then tomorrow we go to get her cranial band. Tom’s sister, Kristie and her kids, Nathan and Tayne, and Tom’s mom, Mary Ann, are coming down today. We are really looking forward to their visit. Mary Ann is going to stay down to take care of Murphy for us while we are in DC (we are so grateful for that!)

I would like to ask you to keep our friends Karen and Jaime and their daughter Jameson in your thoughts and prayers. Jameson will go in for her second open heart surgery first thing this morning. I know how scared they are and I think they could use all the good vibes they can get. Thank you again for all your support. And THANK YOU to all my wonderful blood donors!

-Christy