Wednesday, September 29, 2010

Some History......

It has recently come to my attention that there are now alot of people following this blog!! Thank you for reading. Thank you for caring. Thank you for helping in "Saving Brigitte." We are so happy you are here.

Some of you are probably wondering "Why are they Saving Brigitte? What is wrong with her? She looks ok to me." Looks can be deceiving. A perfect example of that old adage, Never Judge A Book By It's Brigge.

Brigitte was born on August 18, 2006. She wasn't due until September 11th. We had found out early in the pregnancy that there was something that wasn't just right. The first indicator was that my quad screen was abnormal. Just slightly, but enough for the doctors to ask us if we wanted an amnio. Bryan and I decided that we would proceed with a Level II ultrasound and if there were some issues with that, we would have the amnio. You know I ended up with the amnio, right!!!

During the test there were a few things that weren't right, the biggest thing was with the heart. Having gotten not so great news, I needed to walk out of there holding onto something. We decided to find out the sex of the baby and were thrilled with the prospect of learning that we were indeed having a little girl. Perfect. 2 girls, 2 boys.

A few days later I had what would be the first of three fetal echocardiograms. The first one showed that the babies heart was did the second. By late June I had begun to have quite a bit of trouble breathing. My belly was so big, I could barely move. We had just moved into our dream house and I couldn't unpack a thing. At my next OB appointment, I was diagnosed with polyhydramnios. It means too much amniotic fluid. No wonder I couldn't breathe....but the baby was having problems too. In late July I ended up in pre-term labor and was admitted to Brigham and Womens for 10 days. I was having daily ultrasounds, and was also having amniotic fluid drained from my abdomen every other day. 2 liters at a time. We were transferred to the High Risk OB department. It was at this time that developed my hatred for a specific radiologist who made it her point to tell me something was very wrong with my baby each and every time she saw me. She insisted that the baby had a complex heart condition(that I was told repeatedly by Children's Hospital Cardiologists that she did not) and that I also needed to do some research on Noonan Syndrome. That is what she believed the baby had.

I will never forget being in my hospital room with my OB and looking at the most awful xeroxed pictures of children with Noonan Syndrome. Keep in mind this information she brought me was from the 1970's. It was awful. We were devastated. It was also during these ultrasounds that we learned the baby had bi-lateral pleural effusions and would likely have a very difficult birth. We were told that if she were to be born alive, than she would not be breathing.

On August 17, 2006 I started bleeding heavily. I had the other 3 kids with me and made an appt. to see the doctor. With the kids sitting on the floor behind a curtain, I had an obstetrical exam and was told I had a chronic abruption and they were admitting me to deliver the baby. Bryan came from work in his uniform, my mother in law came and got the kids, and my Dad and stepmom, my mom and my brother came to wait in the waiting room for news on Brigitte.

My labor was AWFUL!!! The longest I had labored with any of the other kids was 4 hours....this was a nightmare. 18hrs later, with an obscene amount of doctors, residents, interns, nurses, respiratory therapists, etc........Brigitte Erica Kaiser was born. No crying to be heard. I didn't even get to look at her. She wasn't breathing and was immediately brought to the NICU where she would remain for the next 11 days.

It was during this 11 days that I realized that this was going to be a very long road. As a mom, I knew looking at her, that something wasn't right. First of all, she wasn't breathing on her own. That's a big give away!! Her ears weren't as high up as the other kids. Her eyes seemed to be further apart. For a preemie, she was HUGE. 7lbs. 3oz. Mostly all fluid built up in her tiny little lungs. She did indeed have a very complex heart defect. Those were the big ones to deal with for the time being.

We were finally able to bring her home 11 days later. She was so much tinier that before. She had a very difficult time eating. She slept 23 out of 24 hours. She was a sick little girl. We learned that she had Pulmonary Valve Stenosis, Pulmonary Artery Stenosis, and an ASD. We also got a clinical diagnosis of Noonan Syndrome in September of 2006. That radiologist that I came to despise each and every time I saw her.....wasn't wrong about anything. At my follow-up appointment I made a point to go and see her. I told her everthing I had thought about her...and made her promise me that she would continue to do what she was doing. She was a great doctor.

We were going to the cardiologist every week for a while. In November 2006, Brigitte was really starting to struggle. She wasn't waking, wasn't eating, and was losing a substantial amount of weight (4mo old and still only 7lbs). Her lips were blue. It was time for her first cardiac catheterization. That was done the Thursday after Thanksgiving. It was the first of many times I would kiss her goodbye and hope to see her alive after surgery. I still to this day can't believe how many times we have done this. She has been to the operating room over 30 times in 4years. We never would have imagined that then...its still hard to do now.

During the catheterization they tried to dialate the pulmonary valve with little luck. Her pulmonary pressures were exceedingly high. She was in congestive heart failure. We were brought back to her room and I knew something wasn't right. We were supposed to have gone home. Her cardiologist, Dr. Dave Fulton, came up and sat in the rocker next to me. Note to self: When a doctor makes small talk with you, its never good news. Brigitte needed open heart surgery ASAP. They were trying to sort out the details and if the surgeon he wanted was available, the surgery was going to be done in the morning. Brigitte had other plans. She decided to have some complications after the cath. She ended up having open heart surgery on December 8, 2006. At the time, we referred to it as her second birthday. We stopped doing that when we realized that she would end up with a million birthdays if we kept that up!!!

She was in surgery for over 6 hours, but the repair was done. She will likely need a valve replacement in the future, but we are hoping she can wait until she is in her teens before it becomes more of a need. Valves for children are artificial and don't grow with them. So although she would probably do better with a new valve now, it means open heart surgery every 5-7 years for a replacement until she is old enough to receive a donor valve or a valve from a pig. We'll cross that bridge when we come to it.

While recovering we decided to take advantage of some feeding issues she was having. She could projectile vomit like nobody's business!! Her reflux was out of control!! We left the hospital with a referral to GI who was going to see us after the holidays.

Needless to say, that Christmas will go down in the history books. It was amazing. We were so thrilled and it became so apparent to us that we just needed to live life as if each day were our last. When you face struggles of this magnitude, I think it does one of two things to you. You either enjoy every moment and treat each of them as a gift....or you get angry. We chose to just be thankful and enjoy what we were given...for the time being.

We got through the holidays and were looking forward to getting some answers on the reflux piece of things. The first thing we did was get some films of her belly. She she always did. We were then told to wait and someone would be with us shortly. Out comes the doctor....talking about the weather, the Patriots, etc. Small talk. Something was wrong. It turns out Brigitte had a malrotation of her intestines. They were twisting in knots inside. Not a good thing.

In March of 2007, two months post-op open heart surgery, Brigitte underwent major surgery to "re-design" her intestines. She also had a Gtube placed at the time to help her with some much needed weight gain. She rocked surgery once again. She is a superhero!!

Throughout the spring, summer and early fall...we were inpatient ALOT!!! Always for constipation, vomitting, and failure to gain weight....and multiple respiratory infections as well. We spent countless days at CHB (Children's Hospital Boston) doing testing, taking her to the OR for endoscopies, bronchoscopies, etc. All the while, she was getting worse and worse.

In November of 2007, Brigitte underwent another major surgery to help control the vomitting. It was called a Nissen Fundoplication. This basically meant that the surgeon was going to wrap her esophogus around her stomach and make a knot so she could no longer vomit. Sounds fun, huh? Brigitte will never be able to eat hard candy, hot dogs, grapes, cherry tomatoes, or soda due to the choking risk. She also cannot vomit, so anytime she gets a stomach bug etc....she needs to be admitted and have a naso-gastric tube placed down her nose and throat do releive the gas etc. Brigitte has since been able to "breakthrough" her fundo and can vomit small amounts...unfortunately, she can also still reflux and choke on liquids which leaves her with recurrent respiratory infections.

My hands are getting is my brain. So, I will leave you with a video that I made documenting her first year.

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