We arrived at the hospital Friday morning and were surprised to find Chase had already been taken of the respirator. His oxygen levels were steady and he was doing great. It was wonderful! Sammy and Brandon spent a good portion of the day with Chase. They were able to feed him several times and enjoy the experience of changing his diapers for the first time.

Friday afternoon the staff mentioned the possibility that Chase may be moved out of the CICU in the near future.

Things are starting to look up.

Here is my FB post from Friday

I’m just going to repost Sammy’s update today she says it all.

Chaseton update: Chase is looking much better today. They took him off the respirator last night, and have just turned off the last little bit of oxygen. The cath procedure (where they used the balloon to enlarge the hole in his heart) went well, and so far his oxygen levels have been doing really well. He is no longer receiving IV fluids, and we got to feed him his first bottle! He took it like a champ, which is great news. If everything continues at this rate, we hope to be out of the CICU (Cardiac Intensive Care Unit) and into the Step-Down Unit within the next few days. That’s just one step closer to coming home for a few months, so we are crossing our fingers and praying like crazy. Thank you all so much for your love and support ♥

Chaseton’s story.

Have you ever had your heart broken, all your hopes crushed, then found one ray of light that you can hold on to? I can tell you that you hold on tight. You grasp it with ever ounce of strength and pour all of your dreams into it. That is where we were on Wednesday morning. We had funneled all of our energy into the idea that the surgery would save Chaseton’s life. We walked in to the hospital with confidence, knowing that this was a major operation and there were risks involved. Sure in our belief that it would lead to a positive happy ending to our nightmare. They only allow 2 visitors at a time into the CICU so naturally Sammy and Brandon were first. They were gone a long time but that did not worry us, the four grandparents waiting in the hall. We knew that every thing was good. We knew that every thing was going to work out.  About 50 minutes later Sammy and Brandon emerged from the CICU with 2 other ladies I had not yet met. They introduced themselves as Jenny (yes I have changed her name) Sammy and Brandon’s social worker assigned by the hospital to work with them and her assistant Kelly. Jenny said they had some news and that we needed a private place to talk. One look on the face of Brandon and Sammy was all it took to convince everyone that we would not like the talk. Once we found a private room to sit in, Jenny  started off by taking way to much time explaining who she was, what her job was, plus many other details that we just did not care about at that time. I was doing my best not to jump up and yell ” I DON’T GIVE A DAMN, JUST TELL US THE NEWS!!!! Later talking to the rest of the circus they felt the same way. We all knew that they were about to drop a bomb on us. How everybody kept their cool I do not know. Just so you don’t think I’m busting on Jenny she was doing her job and was trying to ease into the news. For this group it was not the right approach. So when she did get around to giving us the news as expected it was not good.

The lead cardiac surgeon had taken a look at Chase’s last echocardiogram and determined that he had a previously undiagnosed pulmonary stenosis. Umm can you speak English please? A pulmonary stenosis is a narrowing or blockage of the pulmonary artery. There are times when this can be fixed during the surgery that they were planning for Chase. In his case the narrowing of the artery was below the pulmonary valve in his heart. The lead surgeon determined that Chase was not an acceptable candidate for the surgery.  This information was given to Sammy and Brandon in the CICU by the lead surgeon. (we later heard him referred to as” Dr. Gloom”) He presented the data in a worse case scenario. The shock of the initial news mixed with “Dr Glooms” dire warnings lead Sammy and Brandon to the conclusion that if all was not lost it was very close to it. To say the least they were once again crushed. Between Sammy, Brandon, and Jenny they tried to fill us in. Jenny had the most technical knowledge but not all the facts, Sammy and Brandon had the doctors briefing but the shock of the news had wiped most of the information from there memory. What they did remember was shaded with gloom.

At this point all we knew was that they could not operate on Chaseton. They were going to try and stabilize him and send him home for the next few months. Later on he would have to undergo surgery, and that he probably faced a life time of follow up operations.

This news came some time around 11 am. As a group we requested a meeting with the surgeon so that we could better understand the situation and get all of our many questions answered. It was a long miserable day of worry. We spent our time visiting Chase and trying to figure out how we were going to deal with the changes.  After 5 pm we got the word that one of the doctors was going to talk to us. He was not the surgeon we wanted but one of the doctors working on his fellowship that we had talked to before. I don’t remember his last name so I will call him Dr. Dave. Dr Dave did a really good job of explaining the options we had in front of us. He was not rushed and was willing to sit and answer every question we had. After further research, I have concluded, that he did paint a rosy picture and he did allude to that himself. It did help to counteract Dr. Gloom.

We left the meeting felling better. We were better informed and had a good idea what the future would bring. Dr. Dave my have slightly overstated the positives but I do not fault him for it. That was what was needed at the time.

I have a complete explanation of Chaseton’s heart defect and the options we have for the future. I will post that next.

But first here is my FB post for Wednesday.

As the old saying goes one step forward two steps back. We had a bit of a setback today when we learned that Chase cannot have the operation that they were expecting to fix his heart.  A problem with one of the valves in his heart makes this solution likely to fail. There are two other procedures that are capable of solving his problem. Neither of these solutions can be performed until Chase is older. The hospital is going to spend the next two weeks or so trying to ensure that Chase is stable enough to move back home. Sometime in the next year, probably around the eight-month mark, Chase will come back to Atlanta to have one of these two operations performed. If everything goes as we hope this should allow Chase to lead a long happy normal life.

On Monday afternoon, Chase arrived at the hospital in Macon. The information started coming in fast, maybe a little too fast. Every time we received an update it completely changed the story. Brandon, Chase’s father, was up in Macon with his parents and Chase. Sammy, Chase’s mother was still in the first hospital with her mother and myself at her side. Finally, Sammy received a call from the Dr in charge of Chase’s case. He started the conversation with this statement: “This is the problem”. It was great to hear a definitive statement rather than “we think” or “it may be…”  He told us that Chase had TGA along with his already diagnosed VSD. He explained that Chase would be transported to Atlanta in the next few days and would  have to undergo heart surgery in the next week or two.

It was devastating to learn that our 1 day old baby was going to have to have open-heart surgery.  Strangely, it was also a relief to know what the problem was. It gave us a chance to start doing something instead of just worrying. No, we could not physically attack the problem, but we could learn about it and understand what our options were and what the future may hold. I spent a good part of Monday night on the computer trying to comprehend.

Tuesday morning were told that Chase was going to be transferred to Atlanta at 10 am. We also learned that Sammy would be discharged from the hospital.

Sammy was not released until early afternoon. It’s sad thing to watch a new mother leaving the hospital without her baby in her arms. I would rather not have to experience that again, thank you very much!

Brandon brought Sammy home and they packed everything they would need for an extended stay in Atlanta; then we loaded up the cars and headed North.

We arrived in Atlanta in the early evening and Sammy and Brandon were able to get into the Cardiac Intensive Care Unit (CICU) to see him. They also were able to talk to one of the doctors overseeing his care.  We were told that a team of surgeons were going to meet on Wednesday, and would determine the course of his treatment. We were also told to expect Chase to undergo surgery, maybe as early as Thursday.

We left the Hospital Tuesday night feeling better than we have in the last 2 days. The Dr was good at explaining the expected course of treatment and ensured us that Chase’s prognosis was very good.

I think everybody involved slept a little better Tuesday night.  If we only knew.

Here are my FB post from Monday and Tuesday.

Monday:

We received some bad news this morning. Baby Chaseton has a congenital heart defect. He is stable at this time and will be transferred to a children’s hospital in Atlanta in the next few days where he will have to undergo surgery to repair the defect.
We really appreciate all the outpouring of love we have received. Please understand if we cannot respond to each of you individually at this time. We will do our best to keep everyone updated.

Tuesday mid day:

Chaseton is in the process of being transported to Atlanta this morning. There are no changes in his condition. Sammy will be released from the hospital this afternoon and we will move this whole circus North to Atlanta.

Tuesday night:

The circus has arrived in Atlanta. Chaseton is in the cardiac CICU at Egleston Children’s Hospital on the campus of Emory University and has shown signs of improved lung function. A very good thing. The team of doctors who will perform his surgery are going to meet tomorrow and build a game plan. The operation may take place as early as Thursday but we just don’t have anything definite. Sammy and Brandon are staying at the local Ronald McDonald house and are well taken care of. The rest of the circus is doing everything we can to make their life more comfortable and holding our breath. We should have more solid information tomorrow.
Thanks again for all the love.

In the beginning every thing was rosy. Chaseton was born around 10:30 pm on a Sunday. All four grandparents and his 2 aunts were greeted by a wide awake baby boy. We all took turns holding and loving on him. The delivery was problem free and we had no indications of the trouble that would follow. We left Chase in the arms of his mother and he spent the night with both of his parents.

The following morning we arrived at the hospital around 10 am. Everybody was laughing and joking. We were all so excited to see Chase and his parents again. We were met at the door by his visibly upset father who broke the bad news.

They found a problem in Chaseton’s heart and would have to transport him to another hospital that was better equipped to deal with it.

Our whole world came crashing down. What was wrong? How bad is it? Is his life in danger? How will they treat it? It was too early for the Dr. to give us any information. We knew nothing but a crushing fear.

This is a copy of my FB post from that day.

We received some bad news this morning. Baby Chaseton has a congenital heart defect. He is stable at this time and will be transfered to a children’s hospital in Atlanta in the next few days where he will have to undergo surgery to repair the defect.
We really appreciate all the outpouring of love we have received. Please understand if we cannot respond to each of you individually at this time. we will do our best to keep everyone updated.