Maddi's Story

This beautiful baby girl has made a dramatic entrance into our lives, and because of that I had to wait a bit before finding the time or words to tell her story which includes the story of our family over the last 8 1/2 months also.  Hopefully it can provide some insight for other families who are blessed (yes, blessed! Because of Madelyn, we have been blessed abundantly and so has she) with a heart baby, or a baby with feeding problems.  I found hope and support from God, our wonderful family and friends, church, and also from blogs of people who were going through or had gone through similar experiences.

Madelyn Grace Hempel was born on October 30th, 2013 around 9 pm ( I forgot the time! Guess I need to find that somewhere) at 6 lbs 6 oz.  I was SO happy that I went into labor on my own and had the natural birth that I dreamed of.  We went down to Mercy Hospital in Des Moines (about 40 minutes away from home) to have her because we knew that there was a possibility that she had a heart problem.  My first ultrasound around 19 weeks showed that her Aorta was smaller than it should have been and so I had ultrasounds done once a month until my last month of pregnancy where I had 4 or 5 ultrasounds done before she was born.  After the first 2 ultrasounds which confirmed that her aorta was small, the cardiologist had decided on her 3rd ultrasound that her aorta had grown and was catching up and so her outcome would be that she might not need surgery at birth, or that if she did need some medical correction on her heart it would just be to put in a catheter balloon and use that to open her aortic valve which would allow for her aorta to grow.  What a blessing it was to hear this news!  Even though it didn't happen this way, Randy was making decisions on where to work and when and if we knew that Maddi would need serious heart surgery right after birth, we would have stayed in Oklahoma and not taken his job in Iowa.  But Iowa is where we needed to be- for multiple reasons- especially for Maddi to get the great heart surgeon and care that she received.
It was quite a shock and very upsetting to me when Maddi was born because the first thing that happened was not what I was used to.  They didn't put her directly on my chest and let me hold her and nurse her.  She was taken to a table (picture above) and they listened to her heart and checked her out.  I got to hold her for 1 minute after a very long 15 or so while the cardiac team looked her over.  After holding her, she was taken to the NICU where the Pediatric Cardiologist would come and do an echo cardiogram on her.  I was so mad.  After all, they were blowing things WAAAAY out of proportion!  There was nothing wrong with my baby! All of my last ultrasounds were good!  I thought so anyways.  And she looked so good and pink.... So beautiful.

It seemed like forever before I was released and able to go upstairs to the NICU to be with Maddi and Randy.  ( I sent him up there to watch her)  When I got there the cardiologist was there too, doing the echo.  He was talking quietly to a student who was with him.  Even I could see on the screen that things were not right.  They kept going over and over her heart.  The longer he took, the more my heart sunk and reality set in.  I just sat in my wheelchair next to Maddi and held her hand and longed to hold her and let her be a baby in my arms while I nursed her.  That is MY job, to hold my baby and feed her.  The cardiologist finished his echo and sat down to talk to Randy and I.  We were told that her heart was very strong looking and good.  She had all of the chambers of her heart.... but her aorta was way too small and the valve wasn't working.  She had aortic stenosis with an interrupted aortic arch and a VSD (ventricular septal defect).

Of the two pictures below, the upper one is what her heart looked like after birth, and the picture below that is what it should have looked like.  (There are little notes on the pictures made by the cardiologist which can help you understand it better if you click to enlarge it.)  Anyway, Maddi's aorta was too small because of low blood flow from her aortic valve being too small.  That also caused her interrupted aortic arch- where the aorta split and only had a couple of the arteries on it (the ones that go to her head).  The other 2 arteries were on her PDA which is an artery that all babies have but it closes off at about 48 hours after birth.  Maddi's pulmonary valve was a little enlarged, and she had a VSD (hole between the 2 ventricles).  SO, extensive problems.  These problems meant that we could not take Maddi home to wait for surgery, and surgery had to be soon or she wouldn't make it.  The cardiologist put her on a prostaglandin to keep the PDA open until surgery.

OK, I thought- now we know, so now I can nurse her, right?  Boy was I in for a huge blow, and I didn't even know how big of an effect it would have on our lives at the moment, but I knew it wasn't good and I didn't like it.  The NICU nurses told me that because they weren't sure about the blood flow to her lower extremities she couldn't eat until after surgery.  Just to make sure she didn't have milk sitting in her stomach or intestines that would cause infection and more issues.  They didn't want me to hold her more than an hour a day to make sure she stayed calm and her heart stable.  So I was a huge wreck for the next 3 days.  It felt so wrong to have a baby and not hold her or feed her.  I knew that it all made sense, but I strongly disliked those nurses because they were the reason I couldn't treat her like a normal baby.  Really it wasn't them, but I needed someone to blame it on I guess, and they were doing things the way they had been taught.
One day, I think day 3, I was having a huge break-down and Randy was at home with our other 3 girls.  I cried on one nurses shoulder, and then went to NICU with Maddi and a lactation consultant came in and I cried on her shoulder.  I was so upset that I couldn't hold Maddi more.  I told her all of my concerns.... I couldn't hold my baby because they were worried about it upsetting her but I knew that being held my her mother could actually make her feel better.  I couldn't feed her, but they could give her drops of sugar water to calm her down.  Why not give her drops of breast milk? This lactation consultant totally understood and went to my nurse and convinced them all to give me more motherly freedom.  The rest of the week went so much better.  I spent it holding Maddi kangaroo style, singing to her, telling her stories.  I loved changing her diaper and eventually feeding her 5mls of breast milk every 5 hours.  I looked forward to any thing that was close to normal.

                                               

My mom showed up to help take care of Kenadi, Emma, and Mya while I was at the hospital all week.  Randy would switch me and I went home on the weekend for one night.  It was so hard to be at the hospital all of time feeling guilty that I wasn't with our other girls, and when I was home I felt guilty that I wasn't with Maddi.  I missed Randy so much too.  He was the one person who really understood my feelings and I could hardly see him.  

Surgery day finally came.  It was so exhausting getting to that point, and I had mixed feelings about it arriving.  I just wanted it to be over so she could start healing and we could get closer to a normal life, but I was so worried that she wouldn't make it.  But right before they took her away she grabbed Randy's finger as if to say, "Don't worry Daddy, I'll be ok".

We had so many miracles happen on that day.  Maddi's surgery went well. The only glitch was that when they tried to put her aorta back together the main artery that went down her left arm was a little tight so it had to be cut off.  This wasn't a big deal because a baby's body will compensate and grow new vessels.  An adults arm would be useless without that main artery.  The whole time she was in I felt the prayers of hundreds of people working on her behalf and even on mine.  I had a feeling of comfort that whatever happened, Heavenly Father knew her, he knew our family, and it would all be ok.  I knew that this was because of prayers and fasting.  She went in at 7 am and we didn't see her until 5:30 that night.  When we were briefed by the surgeon at 5:30, he looked exhausted, but happy about it.