Madison was born at 39 weeks. The pregnancy was normal and went wonderfully, we loved being pregnant! The labor was also very easy...10 minutes of pushing and we had ourselves a beautiful 6 lb. 12.3 oz. baby girl, who measured 19 in. Joshua and I were so excited at becoming first time parents, and we decided not to find out Madison's sex until she was born. When people would ask if we wanted a son or a daughter we'd just reply "we just want a healthy child". We praised God when Madison was reported as being as healthy as can be. In fact, Madison appeared to be healthy in all aspects. There was really no way to tell that the coronary artery responsible for supplying her left ventricle with blood was misplaced. Instead of stemming from the aorta, it stemmed from her pulmonary artery. Initially her heart was getting oxygen deprived blood, but because her lung pressure was so high the heart was still able to function normally. We found out later that about two months of age is when her lung pressure dropped and her heart began to suffer. About that time is when Maddi became increasingly fussy and everyone guessed her to simply be a colicky baby.
But let me back up a bit. Unlike many of you who were just "struck" with the sensation that something just wasn't right, I never felt that. Eventually I did, but it wasn't an obvious "something is DEFINITELY wrong" feeling. At first I thought Maddi was too small, because our friends had a son one month after our child was born (who weighed and measured exactly the same as Maddi had at birth, believe it or not) and he started to outweigh Maddi immediately. Our pediatrician reassured us that since Madison was a strictly breastfed baby she wasn't going to have as much fat as some babies might. At her two month visit she was still on the growth curve, so there was no reason to be alarmed.
It was shortly after that visit that I started to get a nagging feeling that something just wasn't right. I mostly pushed it aside, attributing it to my inexperience at motherhood. I became more and more defensive whenever I would hear comments like "she's so tiny, does she eat enough?" and "where's her baby fat?". Also, this was the point at which Madison began to fuss all the time. She no longer nursed for long periods of time, she'd suckle for maybe 5-10 minutes (sweating profusely while doing so) then be hungry an hour or two later. She started refusing the bottle, and overnight she started refusing the pacifier as well. We found out later that sucking was too strenuous for her heart. With the lack of blood flow TO the left ventricle, the blood flowing THROUGH it began to back up, inflating her heart like a balloon. The muscle and tissue began to stretch and her heart began to crowd her left lung making it harder to breath.
We also began to notice Madison's regression in certain areas of development. She had been handling tummy time fine up to a point, and had been rolling over but suddenly this stopped. Also, she had begun to babble at about 3 months of age but this too ceased. By her 4 month check up I was a wreck. When our pediatrician told us she had only gained two ounces in two months I flipped. Whatever was holding back the anxiety inside of me was diminished. Our pediatrician was very concerned, and advised us to start Madison on formula (which she'd never had up to this point) and we'd do a weight check in two weeks. He couldn't find any other physical signs just yet. Getting formula into Madison was an ordeal, since she refused the bottle. We had to feed her through a syringe which usually made her so mad she'd throw everything she ate right back up. Two weeks passed and she had lost four ounces. At this point I was frantic. Our pediatrician referred us to the Failure to Thrive Clinic at The Children's Hospital in Denver. They told us Madison didn't qualify for the program because other than a drop off in weight she had no other problems. They referred us to a nutritionist in the same hospital who couldn't get us in for 4 months. Completely frustrated we referred back to our pediatrician, who after several unreturned messages called us in for another weight check. A gain of an ounce cinched it, we needed to take immediate action. Dr. Barter sent us down to The Children's Hospital to be admitted through the ER for observation. His intent was to admit her in order to get the nutritionists office to take notice of her because she needed help now. It was a Thursday afternoon, the day before Madison turned 5 months old that we admitted her.
I stayed overnight with Madison while they ran test after test on her, and hooked her up to a feeding tube. At this point I knew something was terribly wrong, although none of the staff seemed to think she was in that poor of condition. It sounds so silly now but I was afraid they were going to tell me it was MY fault she was underweight because I wasn't feeding her enough. The staff immediately put that fear to rest however, after observing her nursing. The were SO wonderful with me, making sure I understood everything they were doing. We were told she had a case of "the scrawnies" and with good nutrition she'd probably be home in 3 days. The first red flag was when they tried to draw blood for labs. They couldn't get her to bleed. They poked every vein in her hands and feet, and finally drew blood from a foot prick and dripped it into the vials. I was up all night that night praying for God to guide the doctors, to help them find out what was wrong. It was Thursday morning when I met Dr. Willow (I don't know her last name). She came and listened to Maddi's heart as countless other nurses and doctors had, and thought she might have heard something. She returned with some fellows, none of whom heard the murmur Dr. Willow did. I started to panic. I was in denial, there was no way it was her heart. At the same time something clicked inside of me...the sweating when eating, how much she arched her back, it all made sense. I was panicked, but part of me felt a sense of relief in knowing something really WAS wrong with her and they had possibly found something. It's so hard to explain, I think I just knew all along it wasn't something minor like weight, even though I prayed it wasn't really as bad as her heart. Willow's superior came in to listen as well, and she told me she heard absolutely nothing so I shouldn't worry. Willow was still pretty sure something was amiss, however, and ordered an EKG. That came back as abnormal around 11:30am so I called Josh down to the hospital.
At about 2:30pm Madison was sedated and an echocardiogram was performed. Immediately the room filled with people all speaking in medical terms. Josh and I were devastated, it was in fact her heart. I don't remember anything that was said to me after that (later a nurse told me studies show parents hear an average of 8 words after hearing traumatizing news about their children). All I heard was it was fixable and I was in the right place, but nothing more. Madison was to have open heart surgery in 3 days. When we were left alone we were in such shock that we actually decided it would be logical for Joshua to return to work. He only made it to the parking lot before he lost it, but I was sent down to the CICU with Madison. I had not slept or showered and I was lost. I didn't understand anything, but slowly the nurses answered all my questions. I was still in shock when I was told that the team who had looked at Madison's echo decided she couldn't wait 3 days. She needed surgery immediately. Josh made it back in time and at 6pm that evening (her 5 month birthday) we were sending her off to surgery. I held Maddi from the time I left the room where Maddi's echo was performed to the moment they took her away. Later I felt guilty for not letting Joshua hold her but no one was really thinking about that I guess.
We were told her surgery would take from 4-6 hours, and since we lived close we were sent home. The only positive note to the emergency surgery was the fact that nothing fully sank in until well after the surgery was over. We received a call after 3 hours saying the surgery was already over and she would be out in an hour. We raced down to the hospital only to find that she had bleeding complications. 4 hours later the bleeding was still not fully under control, but they had transferred her out of the OR to the CICU with draining tubes in place. We finally saw our daughter at 2am on Saturday morning. It took 48 hours for the bleeding to subside, and she had so many transfusions during that time. People kept asking us what they could do and we just told them to pray and donate blood in her name. It wasn't until much later that we found out how close we were to losing our daughter during that fragile time. When they had opened her up her heart was almost in complete arrest, but she pulled through.
Her recovery was very slow, complicated by fevers. She was intubated for 2 weeks, and in CICU for 3. Her left lung was still not at full capacity due to her swollen heart, but her chest was closed successfully after 3 days. She started out on 18 different IV pumps and eventually was down to 3 plus oral medicines. I'm skipping a lot here but I'm sure you all know the process. They started her back on feedings but she never did take a bottle. She was eventually transferred to Critical Care for the rest of her stay where we began to rehabilitate her. She was pretty much immobile for a month, but we slowly got her started on solid foods and she began to gain weight. Madison's heart itself was making no improvement. Her left ventricle was now getting blood, so the surgery was successful, however the heart muscle itself was still not squeezing. Despite this Madison thrived. Her heart was able to sustain her well enough to gain weight, and with nothing else to do but wait for improvement Madison was released from the hospital one month after surgery.
Madison came home on 5 medicines, one being a clinical trial for a drug proven effective in adults with poor cardiac output due to weakness in the left ventricle. She also has an NG tube, since all attempts (from all sorts of professionals) on getting her on the bottle have failed. She eats baby food but she's not taking enough in to sustain her weight gain. Three different therapists visit once a week each to work with her, and she has weekly visits to the cardiologist. Her last echo was about a month ago, but heart function was the same...poor. The only good news was the fact that her heart was not as stretched out as it once was, which is the first step to healing. We're praying the clinical drug helps her. If not, and her heart fails to improve as a whole, then we will have to consider a transplant-although the cardiologist says that's a far off possibility. Despite her heart function, Madison is SUCH a happy baby. She's doing wonderfully with her therapy, and at 7 and 1/2 months she's rolling over without pain, standing with balance assistance, laughing, babbling and trying to get her hands on everything. She cut her first tooth last week, and that's the only signs of fussiness she's shown since she got home (other than the normal protests when she's not given an object she desires etc.). She's now 11lbs 6oz and FINALLY has chubby cheeks! We know we have a long road ahead of us, but to see my daughter smile at me first thing in the morning makes everything we'll ever go through worth it. We just keep putting our faith in God that all will be as it should.
