Surgery Day

I will be posting surgery updates here today. Thank you so much for keeping Emma Kate in your prayers!

7:17 pm - We were kicked out of CICU for rounds, but will be back to sit with her around 8-8:30.  I hope she will be able to drink some water soon after we get there.

5:45 pm - Emma Kate is officially extubated! No more uncomfortable breathing tube and not depending on the ventilator to breathe any more! She's doing awesome. She's talking to us a little bit, though I don't think she'll remember much of anything when she's fully awake. She keeps asking for water. "Can I have some water from my backpack?"--heartbreaking. She cannot have anything until 4-6 hours after extubation to make sure she doesn't throw up.

5:13 pm - We have been with Emma Kate in CICU since 1:15. She's doing great and starting to wake up. Respiratory therapist has been slowly weaning her off the vent. She's now breathing on her own and they are taking her totally off the vent now. She's being extubated as I type this. She will be able to drink water and have ice chips 6 hours after. She's already been asking for water. Breaks my heart that we can't give her anything yet.

11:45 am - Just spoke to Dr. Alsoufi, her surgeon. The surgery is over and went well! There were no surprises and everything went as expected. They will monitor her in the OR for another 30 minutes and then take her to CICU (Cardiac intensive care unit). We will probably be able to see her in an hour. The next several hours are critical, so please keep praying. THANK YOU for loving and praying for our daughter!

10:30 am - Heard from the OR again. Everything is going well and they will start the repair soon.

8:50 am - The OR called. Emma Kate is doing well, they just did her incision.

7:30 am - We walked Emma Kate back to the OR. She was sound asleep. We should hear from the OR about every hour. Surgery is expected to start around 8 or 8:30 am.

 6:00 am - We arrived at the hospital and almost immediately got a pre-op room. Took her vitals and gave her Versed (sleepy medicine). She was asleep within about 5 minutes of taking the medicine.

amazed.

Hello friends!

Thank you so much for checking up on Emma Kate. I've noticed a lot of traffic to the blog lately, so I thought it would be nice to update you lovely readers.

Emma Kate is doing very well. She turned 4 this past August and has done so phenomenally well over the last year and a half since I last updated. She is still post-Glenn and has had no complications whatsoever.  This child is simply amazing.  She sees her cardiologist every 3 months and her heart function continues to amaze all of us.

Recently we took Emma Kate in for her regular follow up.  We have been noticing her getting much more tired than usual. Many times she will sleep in until 830 or 9 am. (Which is really unusual, she used to be up at 6 or 630!)  She's also increasingly more blue. Her lips especially. It looks like she has been eating a purple popsicle. :) Her energy level is really good once she is up and about, and she's still bouncing off the walls as usual. However, her stamina has decreased quite a bit. She knows her limits, though, and for that I am really thankful.  

Dr. Cardis examined her and the tech did an echo. Her tricuspid valve regurgitation is mild/moderate. He upped her Lisinopril to a full tab every day. He also briefed us and said that we will bring her back for a regular follow up in March. At that point, he will assess and see about scheduling a pre-surgery cath in order to make plans for her Fontan.  His estimate is that she'll most likely have surgery in May or the coming summer.

... and honestly, we have such mixed feeling about it all.  We are dreading this and longing for this at the same time.  I have told several people that it just feels like a big black cloud lingering over our heads.  We don't want to admit her for open-heart surgery... but we know she will be so much better for her once it is over with.  We are utterly amazed that she has been out of the hospital completely since she was 6 months old. Not a single admittance. She's a miracle. We have treated her as we do our other children and she has a very normal, happy life. But we knew this was coming... we knew that she would eventually need surgery and it looks like the time is drawing nearer. We know she will be in great hands when the time comes.

One sad thing we learned over the last year is that her beloved surgeon, Dr. Kirshbom, left CHOA for Yale, I believe. We will greatly miss him being there and have debated staying in Atlanta for the Fontan or following her surgeon. Since the surgery is pretty straightforward, and the post-surgery care is such a huge factor in her success, we really feel confident in keeping her at CHOA. We trust the surgeons there very much. I think that staying will mostly likely be our choice for her.

It is going to be a completely different experience for all of us when the time comes.  Last time she had surgery she was six months old. This time she will be able to talk to us and tell us how she is feeling. She is already telling us things that completely blindside us. Just yesterday I overheard her talking to our older daughter about how when she was born the doctors had to open her chest and fix her heart, but it didn't hurt because she was asleep. 

break. my. heart. 

Emma Kate will tell you that she has a "special heart." She sees her scars and knows her sister and brother, mommy and daddy don't have them. We have always tried to be honest in an "age appropriate" way without making her feel different than others. I do not want this heart defect to ever define who she is. So we are trying to find a balance at keeping things normal, while also being cautious about her health and keeping pertinent people informed. It is a challenge, but we are so grateful for it.

Dr. Cardis listening to her heart during her last visit. 

 

Messy hair. Big smile. Bright eyes. Our sweet girl.

Our First Days in Step Down

Here we are in our cozy step-down room! We got here yesterday around 1pm. Emma Kate is doing great! She is eating ok with the Portagen, considering how gross it smells (and tastes, I'm sure). I think she's just glad to have food in her belly. Dr. Kirshbom said he was going to leave her alone for a few days and monitor her chest tube output. The word is that she will have it in through tomorrow, maybe Monday.

Emma Kate just had an x-ray, which is part of her daily routine. When she has her x-ray, we lay her down on a little table and hold her arms up by her ears. Of course, she cries when we do this. But today I noticed this bulging part of her abdomen, right underneath where her chest tube comes out. The nurse practitioner looked at it when we got back to the room and said she wasn't concerned. It was probably just a muscle that comes out when she cries. They did a lot of moving things around during the surgery, so it is just some part of her body that has to heal. Friends, please pray that this is nothing major. Of course, I am worried, like any mom would be. It is a scary thing to see this part of her body bulge when she is crying. It isn't hard and it only pokes out when she is crying. The doctors don't seem concerned, so I will try not to be.

Everything else is looking good, so far. She was taken off any supplemental oxygen this morning and her sats are where they should be. Other than that, it is just a waiting game. I don't know how long we will be here. I hope we're gone early next week, if all goes well. Again, thank you so, so much for your prayers!

Post Op Day 2

Yesterday was a good day!

Around 10:30am Emma Kate was extubated. Typically after extubation you have to wait 4 hours to feed, but one of the sweet nurses came over to visit Emma Kate and saw how thirsty she was. So she talked with a doctor and they let her have a little Pedialyte only 2 hours after extuabtion. Let me tell you she wolfed down that Pedialyte in about 2 minutes! She was so thirsty! She had a total of about 3 or 4 ounces of Pedialyte over a 2 hour period.

Dr. Kirshbom came by to check on Emma Kate a little bit later and noticed that she looked really comfortable. He decided that she should go back on Portagen and said that if she does well taking it, we might be able to feed her Similac in a few days!!! How exciting! She did great with the Portagen yesterday and didn't even reflux once! We are so proud of her.

So far, Emma Kate's drainage has been minimal; maybe 75ml or so since the surgery was completed. It is not chylous so far; it is very clear! Just PRAY that it remains that way. Things are looking good right now. We don't have orders yet, but our nurse today said she will be one of the first to go to the floor today (which means we will leave ICU).

Thank you for all of your prayers. We are on our way up to see Emma Katie now.

Post Op Day 1

It is pretty early; As tired as I was last night, I am surprised that I'm awake. I guess I am ready to go see my baby.

Emma Kate had a good day yesterday. And by good, I mean that after surgery it was pretty uneventful. She was in pain for the latter part of the day after her nerve block started to wear off. I know I sort of touched on this before, but this surgery is supposed to be pretty painful to recover from. Apparently the anytime you have a thoracotomy (an incision in the chest to gain access to thoracic organs) it is painful. Her incision starts right around the bottom of her right shoulder blade, running horizontally under her right arm. Its not a very big incision, but because there are so many nerve endings and muscle tissues in that area, its quite painful to recover from. As any mother feels about her child, I hate that Emma Kate will have to endure any pain whatsoever.

Anesthesia gave her a nerve block during the procedure to help prevent any pain for 6-12 hours after surgery. We could definitely tell a change in her demeanor when it wore off. She got Morphine and Versed several times yesterday. She has been intubated (had a breathing tube) all day yesterday. Our nurse told us that this would help with pain, since breathing might be more difficult because of the placement of the incision and the pain in that area. They did a few trials last night, slowly weaning her off the breathing tube. She did fine, but she had several doses of morphine in order to help her deal with increased pain. The prediction is that she will be extubated this morning.

She has never had any problems in the past being weaned off the breathing tube, so I feel she will do fine. The tube goes down your throat and into the lungs, passing your voice box on the way. (Not the medical definition of being intubated, but you get the idea). She normally has a really "scratchy" voice for several days after being exubated. After her first surgery, she made no sounds at all, even when she was visibly crying. It was so pitiful.

When her nerve block and pain meds started wearing off yesterday, it was hard to see her. She is basically immobile, because of her breathing tube and because her arms are basically tied to the bed. Babies at this age always are, because if something is in your mouth that you don't want to be there, your first reaction is to reach up and grab it and take it out. The restraints don't hurt her, but I can imagine feeling pretty helpless when I can't move my arms the way I want to.

This was taken post-op Glenn, but this is very similar to how she looked yesterday.

The plan today is to see if she can be extubated and see how she does. Then she will probably start being fed! (First time in 11 days!! Yay!) And then we'll see about her drainage. She has her chest tube in still and it has only drained about 35ml as of last night, which is good. It is all blood at this point, just PRAY that after all the excess blood drains out that her chest drainage is minimal. This will tell us whether the surgery worked or not. Only time will tell.

Out of Surgery

We just spoke to Dr. Kirshbom, who completed Emma Kate's surgery in under and hour. He said they tied off the thoracic duct area and performed a pleuredesis. She did great in surgery and tolerated everything well. We can see her in about 1 hour in CICU. Thank you for all your prayers. Keep it up. Apparently this is going to be a painful recovery, since there are so many nerve endings in the area of the incision. Thank you, friends!

Surgery is Tomorrow Morning

Here we are again, at Egleston. As I type, Emma Kate is fast asleep in her crib, even though she is currently having an echocardiogram done. She has had it rough this morning. At least three different phlebotomists have come in to stick her multiple times in order to squeeze any drop of blood from her little body. She is a human pincushion. Poor baby. It is so hard to see her go through all of this again. She is poked every day, but of course, she still wears a smile.

I am glad she's sleeping so much because tomorrow she will have surgery. Dr. Kirshbom's surgical coordinator came to speak to us this morning. She will be the first surgical case tomorrow. He will attempt a thoracic duct ligation. This means he will tie off the thoracic duct, which is the largest lymphatic vessel in the body. From my understanding, it kind of runs along the length of the spine, but don't quote me on that. This surgery is the next step in trying to solve this stubborn chylothorax problem. In 80-90% of cases, the problem would have been fixed by now, through one of all the different medical therapies that she's been through. This surgery is not a 100% guarantee, so we will definitely be praying about that. God is in control!

Dr Kirshbom just came in and said that this is the second baby he will perform this sort of surgery on. I trust him wholeheartedly. But I trust God more, and I know He will take care of my baby. We are ready for Emma Kate to heal; ready to take her home and love on her and let her play with her big sister. We are ready to let her experience life as a baby for truly the first time. We are ready to have her meet all the family she has not had a chance to meet yet. We are ready for home. Please keep Emma Kate in your prayers today and tomorrow, and we'll keep you posted.

Some Pictures From Today

Snoozing away at 6 am before we took her back to the room to get her ready.

In her little hospital gown.

She was such a happy girl this morning!

The nurse even put a little tag on her Baby Tad.

So sweet!

This is when we got to see her after surgery around 1 pm. Not too swollen! :) Brooks and I stayed for a bit, Kiki & Lito saw her, and then we decided to go back to the Ronald McDonald House and take a nap while she was still sedated. I called a couple of minutes ago and they haven't extubated her yet; she is still pretty much out. The nurse said she had opened her eyes a couple of times. They will most likely extubate later tonight or in the morning. Thank you for your continuing prayers.

Update

We are in the surgery waiting room and just got a call that Emma Kate's surgery has been completed. They are in the process of stitching her up and she should be in ICU within the hour.

THANK YOU everyone for keeping us in your prayers and thoughts. We are so proud of our little girl!

Tomorrow is Surgery Day

Today was a long day and we are all tired. It was full of visits with doctors, forms to fill out, xrays, lab work, etc. Emma Kate did so well and smiled the whole day long. Everyone commented on how happy and sweet she was! The surgeons seem to think she will do well with her surgery and recovery.

We are the first case tomorrow, thankfully! That means we have to be at the hospital at 6am. Her surgery will begin at 7:30 am. Please pray for Emma Kate, the surgeons, anesthesiologist, nurses and other doctors and caregivers tomorrow. We will update as much and as often as possible. You can also check Brooks' blog if you don't see an update here. bkeis4.blogspot.com

Also, another small request: Anna Brooke is sick. She is at home with Nana, thank goodness. She has had a fever all day and has been having general cold symptoms, but she doesn't seem to be feeling well at all! I wish I could be in two places at once!

New Surgery Plan

This morning I got a call from our surgical coordinator, Tracy, asking if we could move the surgery date up. Apparently there are a few babies who will not be ready for their surgery until later in the week. Since Emma Kate is ready to go, they wanted to know if we could be there earlier. There is no medical reason why her surgery is being moved, just so you know. Her new surgery date is Wednesday, January 21st!

We will be heading over to Atlanta a couple days before hand so that we can get everything situated. Her pre-op is scheduled for Tuesday. I will try updating here as often as possible once we get there. Thank you for continuing to pray for Emma Kate!

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!

Lots to catch up on

We have some news that most of you are probably already aware of via Brooks' blog. But I'll summarize. We visited Dr. Colvin, the pediatric cardiologist, a couple of weeks ago and were blindsided by the news that Emma Kate's first surgery is probably not going to be performed at UAB hospital. Come to find out, the only doctor that performs the Norwood (1st surgery) is leaving UAB the first of August.

What does all this mean? We have some options, but most likely we will be going to either Children's Hospital of Philadelphia (CHP) or Boston (CHB). The pioneering surgery of the Norwood was performed at CHP. However, the leading doctors in the country that do these surgeries are located at CHB. Plus the fact that we have done some research and feel that CHB will be a better option for us.

Additionally, this also raises a question in our minds: What do we do with Anna Brooke? We always assumed up to this point that we would have help here in Birmingham and she would be able to stay in the comfort of her home. However, with all the stuff that goes on before/during/after Emma Kate's surgeries, we will need to bring AB with us. Who will help us? Where do all of us stay? What do we do with her while we are at the hospital? How will all of this affect her, my sweet girl? The last thing I want is for her to feel "abandoned" and left somewhere without seeing Mommy and Daddy for weeks.

Another question: Do I have Emma Kate at CHB? or at UAB and airlift her to Boston? If her first surgery is in Boston, will ALL of her surgeries have to be there? Should we have them elsewhere?

A lot of this depends on insurance, unfortunately, and I have no idea what to expect. We still have a lot of asking to do and a lot of answers to wait on before we can make any decisions. Let me also say that I am typing this out after digesting all of this for a couple of weeks. When we first found out, I was basically hysterical! I had no idea what to think. All I could do was cry and sleep and say "WHY?"

This is not easy, but we are depending on God, on our friends and family and on the resources we are being provided through others. We've been very blessed by all of the support we're being shown and are so thankful for it! I don't know what we'd do without it! I know that there's a reason for all of this and that ultimately God will be glorified in all of this. It's just hard for us to see now.

On Thursday I go in to see Dr. Owen, who made EK's diagnosis. He will be my OB/GYN from this point on. I am hopeful about this appointment, but I'm also kind of dreading it because of our encounter last visit.

Emma Kate seems to be doing very well. She is moving A LOT! Not as much as Anna Brooke did at this point. But I wonder if the reason I feel that way is because I have a 2 year old to keep up with this time! Lately all I have been craving is hot dogs, hamburgers and root beer floats. Oh yeah, and grapefruit. This is weird to me because all I craved with AB was Sweet Tarts. Very bizarre. :)