Madalynn Nancy Lowder
HER FIRST MONTHS
Madalynn was born October 17, 2009 through a cesarean section. From the beginning we knew she would be special. She did things her own way even before she was born. She was a healthy 7lb 2oz baby with no problems. Like most babies she would get congested. We would do everything we knew to do to help her. As she got older she seemed to be a normal healthy baby girl. Although she would get sick every now and then nothing ever seemed out of the ordinary. As the months went by we noticed that see did not develop the way her older brother did. Since all kids develop at different rates we thought nothing of it. By the time she was 5 months old she was just learning to sit up.
WHEN THINGS STARTED GETTING BAD
Madalynn had always been a cubby baby that seemed so healthy, except for the occasional Congestion that she would get, she was normal. At around 7 months old she seemed to get congested more often. One day we went out to an event in Charlotte. That day was like any other day, it was hot and miserable like most summer days around here. It was Madalynn's first real time out of the house, so I made sure she had plenty of water and sun screen on.
The next morning we were all getting ready for church. I went to get Madalynn ready when I saw that she was broken out in a strange rash and was not acting her normal self. While at church she was overly fussy and you could tell she did not feel good. We thought she might have had an allergic reaction to the sun screen from the day before. So we decided at that time we would call a new Doctor. We had up to this point been going to a pediatrician, but since we were not happy with them we decided to try a family practice instead. While at the Doctor he agreed that the rash might be a reaction to something, but wasn't sure. So he wanted to have her tested for allergies. He also notices that she was yet again congestion. He said that she had a small case of bronchitis so he gave her an inhaler along with two allergy medications and an antibiotic.
Over the next few week things seemed to be fine. The medications that she was given had help and her rash was gone. She went back in for her allergy test, which was to be done by having blood taken, at this time we found out that she had bad veins and that they were not able to get any blood from her. So she was sent to have a skin test done. During the skin allergy test she did really well, she showed no signs of being allergies to anything. We were relived, but still wondered about the rash that she had.
LIFE GOES BACK TO NORMAL, OR DOES IT?
Over the next few months everything got back to normal. Madalynn was doing better now that she had medication to help. By this time she was getting congested once a month and we were in and out of the Doctors office getting antibiotics. We got use to it we and knew how to handle it. Along with her constant congestion her head was sweating a lot. When I asked her doctor about it was told that it was just something that some babies did. Since she was my second child and I was told over and over buy family and friends that all babies were different I tried not to compare her to her older brother. Around this time we stayed busy and we moved on with our normal lives. In June we bought a new home, in August we went to Pittsburgh to visit my husband Scott's family. But by September Madalynn started get back to where she was feeling good.
When Madalynn turned One that October, she like always was sick. She did not open presents or eat any cake. We felt bad for even trying to have a party for her. At her one year well visit the doctor told us that since Madalynn was still not crawling, walking, standing, rolling over, or doing anything that she should be doing at this age she wanted to send her to a neurologist. I was happy for once. It was good that they were finally going to do something for her. I knew she was behind on developing, but now that the doctor said something about it, I felt better.
We waited received a call from the neurologist. We went in and was told that since Madalynn was developmentally delayed she should have blood work done and that she needed to have and MRI done to fine out it if something mentally was going on. So we were told again that we would get a call about scheduling and appoint to have the MRI done. By November we were still waiting. One day I was out doing some running around. I noticed Madalynn really did not seem to feel good and was acting strange. Worried and tired of taking her to the Doctor and hearing the same old thing. I took her to the hospital.
While at the hospital I told the doctor there what all had been going on. Madalynn was given a chest X-ray which shows fluid in her lungs and had and upper repertory infection. The Nurse gave her two breathing treatments which we fought with Madalynn to take. The Doctor told us that since she was having constant repertory infections that she might have cystic fibroses and asked us if she had ever been tested for it. We told him no, but that she was scheduled the have blood work done along with and MRI in December. He assured us that the neurologist would probably have her tested for it. That day we were sent home with no answers.
December finally came. Madalynn was finally having her MRI done. That morning we got there early. It was a short wait and we were anxious for it to be over with. When we finally got to see her she was sitting up and happy. She had all the attention of the nurses. We had to wait a week for the test to come back. When we went back to get her test results we were told that Madalynns MRI was normal except that she had one small part of her brain that was not developing as fast as most babies brains developed. We were told that it was not anything to worry about and that it would catch up in time, but that she would need physical therapy. So the neurologist set us up with the CDSA (Child Development Service Agency) to start therapy.
Christmas came and yet again Madalynn was sick yet again. By this time it was getting old and we wanted some answers.
A NEW YEAR
After the First of the year we decided to change our Doctor and go back to a pediatrician. We met with him and told him everything that was going on and what all had been done. He agreed that she could have cystic fibrosis because of her constant respiratory infections, but could not be certain without a test. Although right then he thought she could have asthma. We took her back in only one other time in January and were given a breathing machine to have at home and a paper telling us how to handle her asthma.
We finally met with someone from CDSA and got set with them to start Madalynns physical therapy. She was evaluated 3 times by the specialist that worked there. When we got the report back it stated that Madalynn was developed on a mixture of levels. All of her fine motor skill where advance along with her problem solving skills. However her gross motor kills where at a 6 months level. We already knew that just by looking at her she looked to be about 6 months old.
Physical therapy did not start off easy. We were back and forth with the CDSA trying to find out information about when she would actually start therapy. We got no answers.
February came and went, then March and April. Up to this point Madalynn and been wonderful. For whatever reason she was not getting sick. Up to this point she had not been sick since just after the New Year and we were so happy about it. She acted like a normal little girl. She was always happy and always hungry. Thing seem to be looking up.
Then on April 6 Madalynn finally started her Physical therapy with her new PT Reachel. She was going to have it twice a week on Tuesdays and Thursdays. During her 3 day of having it, I talked with Her PT about Madalynn's sweating. She could not believe how much she would sweet just by being laid on her stomach. She decided that Madalynn would best off starting with a stander and that she would help us find one. On the Saturday before her 18 month well visit we finally got one and her PT was going to come over after her appointment to show us how to use it. Things were going so good.
IT ALL HAPPEN SO FAST
April 18 I got up and got Madalynn all ready for her Doctor appointment. She got a bath that morning was we were ready for it to be over with, knowing that she would be getting shots. When we arrived we went through the same routine. They checked her height and weight. I was shocked to find that she only weighs 17 lbs. When we met with the doctor she asked about how Madalynn was doing and how her eating habits were. Madalynn was always our little pig and would eat all day long. Her doctor was really concern about her weight. She continued on with her exam on Madalynn and upon listening to her heart she heard that Madalynn had wheezing in her lungs. Something that could only be heard with a stethoscope. At that time she decided to give Madalynn a breathing treatment, when that one did not work she was given another one. When the second one was done the doctor came in with another doctor. They both confirmed that would feel better if they admitted her and make sure nothing was wrong, since she was under weight and was wheezing. So our simple well visit ended up being 2 hours long and being sent straight to the hospital.
At around 3 we arrived at Levine Children's Hospital in Charlotte. When we arrived we found they already had a room waiting for us. The Doctor came in and asked us what all was going on with Madalynn. We told him all about how she was always sick and that we had one time been told she might have cystic fibroses. He agreed that that could be a possibility and wanted to run test on Madalynn to see if they could find out what was going on. We were also told we would probably be there over night and maybe longer. That night she had her first test done which was a chest x-ray and had blood taken.
Our first morning there was normal as it could be. During breakfast 3 Doctors came in and talked to us about Madalynn's chest x-ray. They said that her heart appeared to be large; they did not seem worried and said that it could just be because she was just a small baby. They wanted to have an EKG done along with an Eco Cardiogram. After breakfast she had her Echo done. It was very difficult; Madalynn was not going to make anything easy for anyone. So I had to hold her while it was being done. Later that morning a doctor came in. He talked to us about Madalynn's heart and asked if anyone had ever said anything to us about a heart mummer. He said that she seemed to have one and that he wanted to have the children's cardiologist look and the test and see what he thought about it. At this time we didn't think much about it. I was born with a murmur that went away, so a heart murmur didn't surprise me if she did have one.
On the same afternoon Madalynn finally received the sweat test to check for Cystic fibrosis. It was a long test that was done in her room. We were happy that she was having the test done. We still thought that this was what was wrong with her. As soon as the test was over Madalynn took a nap and the Children's cardiologist came in. He listens to her heart then came over and talked to us. He told us that he looked at the test and that Madalynn had a few things wrong with her heart. Bicuspid Aortic Valve, Coarctation of the Aorta and Mitral Stenosis. Since we now had an answer all other test were canceled.
While talking to him we were told that the major problem was her Mitral valve which was stenos. This meant that her valve was not working properly; most valves open and close just enough to let the blood flow from one section to another, but Madalynn's mitral valve was not opening enough to let blood flow from her Left Atrium to her Left Ventricle. Because the blood was not flowing properly her left atrium was large and was pushing against her lung. He told us that this was the reason for all the wheezing and respiratory problems she had and why she had not gained any weight no matter how much she was eating. Her heart had been working overtime to pump the blood and was using up Madalynn energy. He said that she would need either open heart surgery or a heart catheterization and that he would be talking with the other doctors to which would be best.
When the doctor left the room, Scott and I just hugged each other. He was almost in tears, while I was in shock trying to think about what I had just heard. I had always been around someone with a heart condition so I was used to hearing these kinds of things, but the fact that it was my little girl that this was happing to her did not hit me. I held on strong though it was able to comfort Scott. Up to this point I had no idea how strong I really was or how strong I was going to be.
That night and the next morning we started calling friends and family. Madalynn was put on prayer chains at a few of the local churches. Everyone was praying for her and for us; no one wanted her to have open heart surgery and like us they were all shocked to find out what was going on. Madalynn was well Madalynn; she was happy all the time and liked everyone. She had made and impression on everyone who knew her. No one not even us could even believe that this was happing.
On Thursday April 21 we found out that hardest news of all. Madalynn was going to have open heart surgery. We had been told the procedures of both the heart catheterization and open heart. So because on the risk and Madalynn small size they felt that open heart surgery would be her best option. This way if there were any problems they would already be right there to fix it. Her surgery was scheduled for the fallowing Monday.
We spent Easter Sunday in the hospital. Everyone there was so nice and they made us as comfortable as possible. They even passed out baskets to call the kids. We brought our son up to see Madalynn as much as we could; I was hard to be away from him. He stayed with my mom and she sat down with and talked about what was going. They told him that the doctors were going to fix her heart just like they had fixed their papaw's heart. He seems to understand as much as a 3 year old would. He brought her present and even his favorite blanket that he never lets anyone touch.
When Monday came we were told that Madalynn would not be having surgery on that day. The doctor who would be preforming the surgery had ordered a replacement valve and it had not gotten there yet. They said she might not need it but that we wanted to have it just in case. He felt better having all the options there during the surgery. Surgery was then moved to first thing Thursday morning. We kept busy while in the hospital. There was a play room on each floor and each day there was something special for the kids. My Parent brought Noah up to see Madalynn every chance they got. Madalynn enjoyed seeing him and getting to play with him. Through this time we all just went day by day. We all knew that surgery was getting close day by day. Each day we tried not to think about. Having your little girl have open heart surgery was not something you wanted to think about.
Although I stayed strong, it was hard to think about how all of this happened. Madalynn had been sick with respiratory infects for most of her life. Because of this it was hard for doctors you hear a heart murmur. I tried not to think that any of this was my fault and could have been found sooner. I always had a gut feeling that something was wrong with her heart. Being around my stepdad I knew a few signs of heart problem. One of which was clammy sweats, something Madalynn often had. My worried that it might had been her fault, that she might had passed on something genetically ; since both me and my half-brother where born with heart murmur and his son had passed away at 3 months from a heart condition. Scott worried most about Madalynn; little girls always had there daddy hearts. We both agreed that this was something that could have been genetic form both sides of our families; seeing that heart condition ran in my family along with his family.
As it got closer to the day of surgery we along with everyone got more and more anxious. Everyone offered us there helped. I had not been home once since Madalynn was admitted. Scotts Parents drove down on Tuesday to be there for us. People brought her gift and came to visit her daily. Even the nurses began to know her and the little red head that walked the halls. She hated being in the room and I would have to hold her and walk laps around the hallway. The hospital started to become a familiar place to us.
IT'S ALMOST OVER
When Thursday April 28 arrived it was surgery day. The Surgery was going to last 4 hours. We got up at 5 o'clock to get ready, everyone came to be there. Madalynn had had a bad night along with a bad morning. She had not eaten and was not in a pleasant mood. When she was given her medicine she didn't keep it down. At 6 o'clock she was taken down to anesthesia they tried to give her something to help her be calm when they took her to pre-op but she didn't keep that down. At 7 o'clock they started pre-op and we stayed in the waiting room. While she was in pre-op we all went and got breakfast. We tried to keep our minds off of what she was about to have done. At 8 o'clock surgery started. We got back to our waiting room by 8:30 to wait for any news we would hear. By 9 o'clock I was on edge. Scott helped me stay calm. Up to this point I had been strong, but now I was to a breaking point. Every time to door would open I was up looking to see if it was for us. I tried to stay busy but nothing helped. Around 12:30 to 1, we got a call that Madalynn was out of surgery. Scott and I was the first to see her. The doctor came in and told us that everything really good. He was able to repair her valve and it did not have to be replaced. We were so happy. Madalynn had made it thought surgery and was doing really good. At this time both Scott and I were tired and relieved that surgery was over and went well we took naps and waited for her to wake up. Around 5 o'clock that night we went back to the ICU. We waited as they pulled the breathing tub out and checked her. Madalynn woke up mad and cranky. I felt so bad for her because she was so thirsty but was not allowed to have anything to drink at this time. We only stayed with her a few min until we headed back to bed.
The next morning was the best morning of all. We walked in and found Madalynn sitting up watching TV. She was so happy to see us. She still felt bad and was in and out of it but we were ok with that. When she finally able to eat; the first thing she has was a strawberry pop tart. Every morning it was pop tarts and boost drink during the day. The ICU was not a fun place. Madalynn did not like being conceited to the machines or having anything on her. The doctors and nurses learn to never wake her up or they would be sorry they did.
On Tuesday 5 day after Madalynn's surgery we were told that we are able to go home the next day. Madalynn was doing so much better. She was up and eating and back to her normal self. When the Doctors made their rounds they discussed us being moved out of the ICU and back to a regular room. They told us that we would be able to go home the next day, but that Madalynn would need to have one more test done just to check her lungs and her heart. We were happy to hear that we were going to be leaving; we were to be out of the hospital and back in our own home.
FROM GOOD, TOO BAD, TO BETTER
Later that day we were moved back to a normal room. We thought it was funny because we were put back into the same room we had before the surgery. It was kind of nice because we were familiar with it. The next morning Madalynn was taken to anesthesia to be put to sleep so they could get a good look at her heart and lung to make sure everything looked good before we went home later that day. While we waited Scott went and got Noah and brought him up to the hospital. We wanted him to be with us when we went back home.
While we waited to be discharged the Children's cardiologist came back in. He told us that the test done that morning showed that Madalynn had Pulmonary hypertension. He told us that since the Left atrium and large it had pushed up against her lungs, which caused the mussels in her lungs to strengthen. This was really bad, if she had had just one temper tantrum her lungs could have shut down and it would have been fatal. He said he was glad they found this before we left otherwise it could have been bad. He told us that with the right medication this could be fixed. We would not be going home that day and needed to stay one extra night.
At this point it was all over for me. The news of being told that if my little girl had even cried it could have killed her. I could not handle it. Scott by this time was able to handle everything better. I who had been strong up to this point was no longer strong. I no longer wanted to leave the hospital I felt better being there in cause something else was to happen.
The big day came. On April 5 just After Two weeks from being admitted to Levine Children's hospital, One week after having Open Heart surgery. Madalynn was finally coming home. This was the best day ever. We knew we still had a long few weeks ahead of us, but the worse was over. Madalynn was still going to need Physical therapy, but would do much better with it. She would start to grow and gain weight and develop like she should. She was happy to be home and we were happy to be home. Those few weeks where the longest weeks of our lives; we will never forget how a simple well visit turned into the biggest surprise of our lives.
On October 17 Madalynn will turn two. Her heart and lungs are doing much better and will one day be completely off all of her medication. At this time she will not need any more surgeries. She has grown to be a normal two year old. She is not at 20lbs and is still eating like a pig. Her Physical therapy is going great. She is close to walking now and except she will be by the end of the year. Still now looking back it is hard to believe that she had anything wrong. People who meat her cannot believe she even had Surgery. Her mitral valve is working like it should and her heart is betting like it should. Her Pulmonary hypertension is almost gone and she no longer needs blood pressure medicine.
Over the past few months I have learned a lot about heart defect. I never in my life though I would have a child to be born with one. I thank God every day for giving us an answer to what was wrong with Madalynn and for the Doctors who helped her.
Author: Victoria Lowder