Floor life

Sunday we were moved to the floor around 4:30pm, it was a pretty quiet day and Gracie literally slept from 3pm till almost the next morning, waking up only to vitals. I still can't believe we are on the floor so soon! Part of me keeps holding my breathe for some big set back. But really Gracie is doing great considering she just had heart surgery a week ago.

Yesterday was perhaps the busiest day anyone can have on the floor. It wore me out as well as Grace. It's no wonder she is stii asleep, her crazy day allowed for hardly any nap time. We started the day at 5am with morning labs and walking down to x-ray. We came back and watched some Mickey Mouse (no day can start without this). Gracie got out of bed at 8:30am to try walking again, she did great and walked for about 20 minutes (we just held her hand to stabilize her). Walking back to her room we were greater by physical therapy, they played with Gracie for a couple of minutes then we went back to rest for a bit. During this time, we found out that the swallow study we had schedule on Saturday had been cancelled because there were no speech therapist working. I just wanted to cry, all Gracie has been asking for is water and she has to wait a day because no one was working, ugh!
Conveniently while the doctors rounded at 10:30ish, a speech therapist walked by and Annie, the NP for cardiothorasic surgery, knew she was a speech therapist, so they were able to convince her to squeeze Gracie in. I was thrilled, I don't know if there ever was a more excited mama to take her child in for a swallow study. The first sip of the barium drink caught Gracie off guard, but then she gulped down six sips of the barium drink (I guess at this point she didn't care what she had to drink as long as she got a drink). It appeared as if she did great with the swallow study, but 10 minutes after we got back to the floor the speech therapist called and said Gracie ever so slightly aspirated with that first taste, that she needed to take it slowly and could only drink teaspoons of water for now. So I spend most of my time spooning her water--it's not that bad since she sabots every spoonful.

Immediately aftervwe came up from doing the swallow study, Gracie got some loratab and we went down for 1 1/2 hour echo. After which I tried my hardest to get her to nap but she refused, so I took her for a little wagon ride that ended in the playroom for about 20 minutes. By the time we got back to the room and settled, she was ready for bed at 7pm. But that didn't last, she woke up 15 minutes later. I eventually got her to sleep and she did ok through the night.

Today it hasn't been nearly as busy. We went for a morning walk after x-ray and a little nap, then we went down to the physical therapy gym to play, got a 24 hour halter monitor placed and is now sound asleep.

I am so grateful that this round has been so much more improved than other the othe surgeries, but even this stay is hard and I find myself just breaking down and crying.

Another update

We are five days out from surgery and doing ok. We are still in the intensive care unit and will be at least till tomorrow and maybe till Monday. Gracie has been fluid negative the last two days, but unfortunately there has been very little change in her chest x-ray. Her lungs are still so hazy. The Attending, is wondering why her lungs haven't changed with how negative she is, she has a couple of guesses 1. She has developed a cold--so now she is on precaution. Never mind the fact that she has no other signs, no fever, no change in her CBC numbers, and no runny nose. Gracie does cough quite a bit, always has, so... The othe guess is that she is aspirating on the 15ccs she was getting every two hours, so now she is NPO until at least Monday when they will do a shallow study.

I have been uneasy about these suggestions mostly because this response is typical Gracie. She has always struggled with her lungs after surgery. It is just a really slow process for her. So during rounds today I voiced my concerns. I don't like that she is on precautions cause I don't think it is necessary, but I guess it doesn't hurt to do a test. But it irritates me that she can't have any water! She really loves her water it is all that brings her relief and pleasure. I really don't think she has ever aspirated nor is aspirating right now...but my hands are tied. The good thing or what brought me comfort this morning during rounds is that Gracie's cardiologist is on call this last week and after I voiced my concerns he piped up and agreed with me. He said that his gut is telling him that Gracie isn't sick and that he doesn't think she is aspirating but that this is all how Gracie rolls and it will take her weeks to clear her lungs. How great to have a doctor to back you up!

So here we sit just waiting. Grace still has all her chest tubes in, her ART line and an IV in her right hand. Blood pressure is slowly creeping up. We are down from 7liters of high flow to only 2 liters of regular old oxygen. She hasn't pooped yet and is only getting 45ccs of feed every hour. We are still chasing her potassium and trying to figure out why her platelets dropped drastically. Today has been a rough day, really worn out and sleepy. We did get her up and out of bed and tried to get her walking. All she could tolerate was walking about 20 feet before she was done, she cuddled on my lap for 10 minutes then asked to be put back in bed and has slept soundly for the last couple hours.

An update

I apologize for the lack of updates. Only now, 24 hours after surgery has Gracie been able to really get some rest. When we first saw Gracie after surgery yesterday I was kind of in a false sense of security. Gracie came out without the breathing tube and with her chest close, she has NEVER done that before. Gracie, though extremely agitated was coherent enough to distract her from flailing for a time, but she was putting out too much blood through her chest tubes. So in an attempt to calm her down, two doses of morphine were given and yet nothing seemed to help her. So the doctors decided to give Grace a dose of Ativan, she finally calmed down, but then her blood pressure was too low and she still was bleeding quite a bit. Gracie soon became unresponsive and nothing the docs did would arouse her so a med was given to reverse the morphine. So basically the last 24 hours has been a dance in trying to figure out the right combination of drugs to make Gracie calm enough to slow down the bleeding, keep her comfortable, and keep blood pressure in an acceptable range. After she got multiple doses of blood transfusions, a dose of fresh, frozen plasma, and platelets she is more stable and relaxed. But because so much product was pushed we are very much fluid positive, she has a plural effusion already and in the course of a couple hours her chest got quite a bit more hazy.

So the plan is just to keep her comfortable and get her to pee. Talking to the cardiologist we are just taking it slow and watching what transpires.

We are holding up pretty well. I think the doctors that aren't familiar with Gracie think I must be nuts because they keep apologizing for such the rough path so far, and I keep saying that Gracie is doing beautiful. I guess it's all relative, once you've been throughbwhat Gracie's been through this seems so much easier.

Update #1

Sorry for the delay in an update, we have been here for several hours with very little progress. We got here at 6am for 7:30am surgery. Gracie was happy and carefree as while we waited. It was sweet while we were driving up here Gracie askednif she could say a prayer ( we had just prayed). Her prayer was simple and so sweet, "Heavenly Father, thank you for my heart. Bless my heart. Name of Jesus Christ, amen.". I thought this prayer was so perfect and though she doesn't comprehend that her heart is broken, she is thankful for it.

While waiting for surgery, we decided Gracie would do better with something to relax her, so she got some versed. Oh my goodness, Gracie was a riot! Though her body was so heavy and hard to control, she couldn't stop hamming it up. She kept wanting me to help her stand up so she could say hi or hello to everyone that passed by us. She was so funny that even the anesthesiologist couldn't keep a straight face. Saying goodbye was hard but she left us laughing as she yelled weeeee as she was pulled into the OR.

My sister-in-law wanted me to post what exactly is being done in this surgery. Basically a gortex tube will be attached to her inferior vena cava and then connected into her main pulmonary artery. This is done to separate her red and blue blood to take some of the work off of her heart. The doctor may also tighten up her mitral valve if it is really leaky.

At 9 am all the lines were placed and the first incision was made. By 10:30am very little progress was made due to the extensive scar tissue. We should be getting another update very soon.

Morgan's Princess Party

I cannot believe that my baby girl is turning 5! This year we decided that Morgan should have a special party. Last year very little was done for her birthday because I had just had Ryan and this year Gracie's surgery is on Morgan's birthday.

So for the last several weeks Morgan and I have been planning the best Princess Party we could think of complete with some special surprise guests. Though she LOVED the party, I by far loved how excited she was days leading up to the big day.

All day Friday we decorated and prepared for 10 of Morgan's fellow princesses to come and join us for two hours of fun. Daddy was kind enough to take Ryan and Grace to grandma and grandpa's house ( I hated sending Gracie away for the party, but 10 girls equaled too many germs so close to surgery day). Upon arrival each princess followed the red carpet into the party and was greeted with perfect princess music and an opportunity to play on the royal "castle" as we waited for everyone to arrive.

Once all the princesses were there we introduced ourselves and played 'Kiss the Frog.' Each process got their own set of lips and was given an opportunity to kiss our friendly frog, but they weren't allowed to see as they kissed him. The princesses thought it was so funny when the frog got kissed on his eye, belly, or even on the fence he was sitting on.

We then got a phone call that our special guests had arrived. When I announced that I was going to go get the guests the princesses squealed in delight. They all sat on the ground, waiting anxiously. When our guests---real, live, princesses (as one of the girls described them) arrived the girls were awestruck, not one peep from any of them. The 'real' princesses read a story to the girls and even stayed for pizza upon the girls' request.

After the princesses left it was time for each of the princesses to decorate their very own princess carriage. (I made carriages the same way you make cars out of cardboard boxes, painted them gold and silver, put pink tires on them and provided glitter, jewels, stickers, and ribbons to decorate.). The little princesses LOVED decorating and could have done it for hours, but there wasn't time, we still had to have the princess parade. The princesses all rode in their carriages as they paraded up and down the block singing, "we are on a princess parade, we are on a princess parade..." (Morgan came up with the song).

Next it was time for cake. I made Morgan a barbie princess cake and everyone loved it! I set the cake on the table and went back in the house to get some candles and matches, when I came back each of the girls had stuck their fingers into the frosting...it was the funniest thing. After cake, it was time for presents and to say goodbye.

The party was a hit and I was beyond exhausted! But I am so happy Morgan had a wonderful party, she deserved it. This little girl is amazing and we are so blessed to be her parents. Morgan has a level of emotional maturity that exceeds her age. She is sweet, caring, and so tender-hearted. Morgan brings so much joy and happiness to our family. We love you baby!

Cath Lab

What a long day! Generally speaking it wasn't good or bad, just long. Gracie did great with her cath, what a different experience compared to all the caths she had when she was little. We played and watched Mickey while we waited to go to the cath lab and then after the cath she was fairly pleasant. We watched more Mickey Mouse, Dora, and were even allowed to go on a wagon ride for an hour and half---I think we went up and down the "elegator" 100 times!

For the most part Gracie's cath looked fairly good. Her lung pressures are still boarder line, being at 15% (anything above 15% is a bit too risky), she had a lot of collaterals that they couldn't coil off, but are hoping that after the Fontan they won't be that significant because of where they are. However, there are a bunch of collaterals that branch out into the lungs that could contribute to fluid build-up and retention after surgery. This could be a problem because Fontan kiddos tend to struggle with plural effusions, so this could just compound the situation.


Dr. Kaza the surgeon that will be doing Gracie's surgery seems pleased with what was seen in the cath lab, so we are a go for October 18th. Leading up to today, I wanted so desperately for things to look good so that she could have the Fontan. And now that I know there is no question about it, I am freaking out!!


There are so many factors that we have to juggle while Gracie is in the hospital, I just don't know how we are going to do it. I know that I NEED and HAVE to be at the hospital with Gracie, there is no question about it. I am the one who knows everything about Gracie, I know every reaction she has had, I know what behaviors to expect, I know how to calm her and make her happy. Don't get me wrong Jason knows a lot of these things too, but there is just something about mommies being the one that are most qualified to be with their sick kiddos.

Even though I know my place is with Gracie, I am heart sick that I won't be home with my other two babies. Just today, being gone from Morgan and Ryan all day, drove me nuts! Morgan may be old enough to understand what is going on, but I am sure she is going to still want me home after the novelty of being with family and friends every day wears off. And Ryan is just so little, how will he know that he is still loved? That his mama loves him and wishes to be with him too? The only comfort that I can find and what allows me to know that I can stay with Gracie is knowing that we have a grandma and an aunt who will be taking great care of my babies while Jay has to work and I'm at the hospital.

What a hard road. We're hoping that with lots of phone calls, video chats, and visits and hopefully an occasional switch with dad and grandma we will get through this and all be reunited quickly.

The average hospital stay for this surgery is anywhere between 10-14 days. After a long talk with Gracie's cardiologist, he said he would be extremely happy if she would be discharged in two weeks. With that said though, she has a lot working against her. But I think she has so much going for her now, than she did with her two previous surgeries. She is stronger, fiestier, and healthier. Maybe, just maybe, my Gracie girl will surprise us all and beat the odds and do wonderfully well!!

Can't sleep

Gracie's cath is in a couple hours and though, sleep would be marvelous, here I am wide awake and have been since 4am and we don't have to be to the hospital until 9am!! It took me forever to fall asleep, I just can't stop worrying about all that this heart cath entails. How will things look? Will she qualify for the Fontan? Will she bounce back from this in time for surgery? Can I really hand her over again and trust things will be fine? And the list goes on. Oh, how I hope and pray that things look beautiful and we will be a go for the 18th.

Yesterday was a very cold wet day. It was kind of nice, I'm one of those people who actually enjoying a break from sun, for a dreary day or two. So while Ryan napped, the girls and I made some chocolate chip cookies. Morgan and I always bake together, but this was Gracie's first time. She had fun for about a minute before she kept begging to get down and watch a show. Making cookies was sensory overload for her. Too many textures and sounds that just made her so uncomfortable, I think she thought I was going to make her touch some of the wet ingredients because she had a look of horror on her face. But she stuck it through till the first tray of cookies went into the oven.

hestitant to taste the cookie

Ryan woke up just in time to try a warm cookie!