First Heart Catheterization - The Whole Story

(Warning - very long post!!)

We are home from the hospital! It was only for three days, but what a LONG three days it was. Clare is doing great. She is back to her old self (with 15 needle stick wounds plus the 2 catheter wounds) - smiling and cooing and enjoying her swing! It so SO nice to finally hold our baby without IVs and monitor wires in the way!

We arrived at the hospital on Thursday for Clare's pre-op procedures. She had a chest x-ray, EKG, lung profusion scan, and blood work. The lung profusion scan was the worst only because this is when the nurse put in her IV. Very mad baby, very sad parents - not fun! But the IV allows access to a vein without multiple needle sticks, so it was better to stick her this one time. She had her arm supported by a board, then wrapped in tape and a cast-like material so she wouldn't dislodge the IV - she looked like she had broken her arm! We also met with one of the doctor's who would be doing the cath and the anesthesiologist on Thursday to go over what they were going to do and all the risks. Both doctors were very thorough, which was reassuring, but at the same time, it was scary to hear what could go wrong. Shawn and I both liked the doctors, which is very important, since we are trusting them with our baby's life! After all Clare's tests, we were brought to our room on the cardiac floor. We met our nurse, and Clare's vitals were monitored periodically to provide a baseline for post-op. Clare was tired after a long day of tests, so we all went to bed early. Shawn stayed in a hotel since only one parent could stay overnight in the room. Being the nursing mom, I got first dibs!

The hospital was not what I expected initially. It was chaotic when we first got there! I was overwhelmed by the size and the number of people everywhere. Admitting was a zoo, which really got me worried. But once we got on the cardiac floor, I felt a little better. All the nurses Clare had were terrific. They bent over backward to make the parents as comfortable as the patients. There was a playroom on the floor, a kitchen with drinks and snacks, a computer room with Internet access. We were given a tour of our wing and told to make ourselves at home. They also have strollers and swings available for the babies, so there were other options than being stuck in the hospital crib all day. The hospital's policy towards nursing moms was great - they supported and encouraged breastfeeding. They provided two free meals a day for nursing moms, and pumps so I was able to maintain my supply while Clare was unable to nurse.

Cath day started early for us. Unfortunately, Clare and I did not get a lot of sleep because we had a roommate (a 10-month old who had undergone open heart surgery the previous day) who had a rough night. Plus there were multiple vital checks overnight, and Clare was cut off from nursing at 4:30am and put on an IV at that time. Shawn came over at the crack of dawn so I could shower before Clare went to the cath lab. Our family came in early to see Clare before her procedure. When the nurse came to get Clare at 7:30am, Shawn and I were allowed to carry her over to the cath lab. We were able to sit with Clare while the cath lab nurses checked her vitals. Then the second doctor performing the cath came and spoke with us, as well as the second anesthesiologist. It was now about 8:00am, and Clare was starving. This was tough on us - watching her cry for food. We were so helpless. Shawn rocked her and tried to comfort her, but Clare obviously didn't understand why we weren't feeding her. Finally, the cath lab was ready for her. The anesthesiologist gave Clare a sedative through her IV so she would be relaxed when they put the breathing tube in and started her under general anesthesia.

The hardest part of the whole day was leaving Clare. The sedative calmed her down almost immediately. Shawn and I said our good-byes and then we had to leave our sweet little baby to her doctors and nurses. We both fought tears as we walked out of the cath. God has blessed us with an incredible family, and they traveled to Boston from Maine and RI to be with us that day. We had breakfast as a family, then the waiting began. My sister took Jamie to the Children's Museum, so he wouldn't have to spend all day waiting in the hospital. We did have him come see Clare before she left us that morning, and you could tell he didn't like seeing her hooked up to the IV and monitors.

One of the best things about the hospital was that during the cath, a nurse faithfully called us every hour with an update. So when we received that first call, we knew that Clare had tolerated going under the anesthesia and received her breathing tube okay. I think a small weight lifted off both Shawn and I after receiving that first call. It was comforting to know that Clare had done well with the first phase of her procedure. We spent the day alternating between staying with our family (who were waiting in the cafeteria) and waiting in our room for the next phone call. I was surprised by how fast time went. I expected that it was going to be the longest wait in the world, but it actually wasn't. I know the hourly updates helped tremendously. That way, we weren't sitting around imagining the worst possible scenarios. We could actually visualize what was going on since we were being updated. We would get our update, meet our families to update them, then by the time we got back to our room, it was almost time for another update. That was the best!

The cath itself took three hours. The first hour was exploratory. Both the pulmonary and aortic sides were explored and photographed. The next two hours were spent balloon dilating four of Clare's pulmonary arteries. They were able to successfully dilate her right and left main branches and the two descending branches. When we got the call at 12:05pm that Clare's cath was done, and they were getting ready to take her out of anesthesia, Shawn and I were relieved. The nurse said she would call in 20 minutes to let us know we could come back to the cath lab to see Clare. Now THAT was the longest 20 minutes of my life! But finally the call came. Shawn and I almost ran to the cath lab! The nurse had prepared us that Clare may not look the greatest because they had to tape her eyelids shut and tape the breathing tube around her mouth. But when we got there, she looked like an angel. She was sound asleep. Her breathing tube was out, and she looked so peaceful. She had many needle stick marks and her face was slightly puffy from the fluids, but other than that, she was beautiful. (Of course, she is always beautiful!) She did end up needing a blood transfusion because she lost some blood when the doctor was pulling the cath in and out of her groin. That was very hard to accept in some ways - it's weird and a little scary to know that your child has someone else's blood in them. We were forewarned of this possibility, but neither Shawn nor I liked the idea very much. (Who would?!?) She was still receiving her transfusion when we saw her, so we actually got to see the blood going into her body. But we're thankful there are so many generous people willing to donate blood. So, if you can, DONATE BLOOD! We are actually going to look into getting a direct donation from a friend or family member before her next cath.

The news on Clare's heart is that her aorta is narrowed above the valve. Right now, it's not at a point where she needs intervention, so her open heart surgery will not be in the next couple of months. (Yeah!) Her pulmonary side has many, many branches extending into the lungs. Most of them were either narrowed or pinched. The doctors could only keep Clare under anesthesia and use the dye contrast for so long, so they only dilated the four main arteries while they were in there. Clare will undergo her second cath in two months to work on some more arteries. The doctors were happy with what they accomplished, but warned us that we wouldn't see any change in Clare because this was just the first step in a long road of caths. Her lung scan post-cath, though, was improved from the scan pre-cath, so the dilations did affect Clare even though we can't actually see a difference on the outside. Shawn and I got to see the photographs and video the doctors took during the cath. It was amazing to see Clare's arteries and aorta. It really helped us understand exactly what was wrong with her heart and why she is going to need multiple caths in the future.

Overall, we believe Clare did amazingly well during the cath procedure. There were some bumps during the cath, like the blood transfusion, some arrhythmias, and she needed dopamine to stabilize her blood pressure. She also needed an IV of heparin (a blood thinner) overnight to prevent a blood clot in her right leg because the pulse in that leg was extremely weak after the cath (this is the side of the groin where the catheter was inserted). But we feel so blessed that she got through everything and is home again. Other than some bad constipation (after effect of the anesthesia) and gas pains (which she is now on Pepcid for), she is back to her sweet self at home. It feels so good to be together as a family again, and we were so excited to see Jamie. And it's nice to get out of the hospital. I hadn't left in three days and was going a little stir-crazy by the end! I can't imagine what it's going to be like when Clare has her open heart surgery, but Shawn and I are glad to get this first cath under our belts. Now we feel "seasoned." We know what to expect from the hospital. We know our way around the hospital and the cardiac floor. We know that if you put a Sprite in the fridge to chill it, it will be gone when you go back for it. We know we will get little sleep. We know that Clare doesn't need five fashionable outfits while we're there because she looks so cute in the "Jedi Johnny" the hospital provided. We know how to be an advocate for Clare. We know she is in good hands with the doctors at Children's. And we know, especially, that she is in God's care.

Thank you again for all your prayers! We couldn't be surviving all this without you!