Molly was born on October 2015. She was full term, "healthy" baby 8 pounds and 15 oz. Molly has three older brothers. Ben who is 11, Jordan who is 6 and Parker who is 3. They were all so happy and excited that they were getting a sister!
When I was pregnant with Molly and we went to have our 20 week ultrasound... Molly was hiding and we could not see if she was a boy or a girl and we also could not see her heart because of her position in my tummy. We were invited back at 24 weeks and we discovered that she was a girl (I was so excited I screamed!) and something about her heart looking a little concerning to the doctor. We then had to go to a high risk Doctor in South bend. They discovered that Molly has AVSD which means that she has two holes in her heart that need to be fixed, we were sent to a pediatric cardiologist to get an echocardiogram. Four weeks later, which seemed like a lifetime, we got into the pediatric cardiologist, he examined Molly's heart in my belly and told us she would definitely require a heart surgery and that there is a strong possibility that Molly would have down syndrome. He said often AVSD and Down syndrome go together. This devastated me at first. I was so scared! I cried, I researched, I stressed, it was a hard time of not knowing.
BUT...When I had Molly, when the c section was over and My little sweet girl was put in my arms all of my sadness about what could be really melted away. When I had her with me, breathing, opening her eyes, licking her lips, crying, kicking... I felt ok... I just loved her to pieces.
Molly Jane
Molly came home for almost 4 weeks. She slept nearly all of the time. She did not want to wake up to eat even. I slept right next to Molly and I set my alarm to wake her every three hours to try and eat her bottle. I did not hold her to eat, that was too comfortable for her, I turned on bright lights and took her blankets off in order for her to wake up. I would try for 45 minutes to an hour to get her to take as much as possible at each feeding (by the way, that is too long of a time, the nutritionist says, after 20 minutes they are burning more calories then they are gaining). They told me that if molly did not start gaining, she would have to get a feeding tube in her nose. I did not want this, I tried so hard that third week she was home, but no luck. Molly had not gained any weight but also not lost Any weight. Molly was admitted in the hospital for the night to get an NG placed.
This is Molly the first night in the hospital getting her NG tube. One night turned into a few days because they wanted to watch and see if she gained any weight... then a few days turned into more when Molly got the rhinovirus in the hospital. One night when I had just fallen asleep, Molly started to not breath normally, oxygen level dropping; We had to rush her into the PICU and we had to put her on oxygen and airflow.
We stayed at Bronson hospital for one month exactly. They thought that if we got her heart surgery earlier that might fix her respiratory problem. She was supposed to go get her heart surgery when she was 4 months old ,but it could not wait. So on December 5 we were transfers to Mott children's hospital by ambulance to get our heart surgery on December 7.
This is a picture of daddy and Molly the day before the surgery. When we got to Ann Arbor she was admitted into the Pediatric therasic cardiac unit (the pctu). They did an echocardiogram and they discovered that Molly's heart surgery looked a bit more complicated then they had anticipated, they wanted Molly to grow a bit bigger before they did her final AVSD heart fix. So they decided to put a PA (pulmonary artery) band on Molly for a temporary/ nonpermanent fix on her heart. This would help her oxygenate better until she grew bigger so that we could do the more permanent final surgery.
This picture shows what we saw right after Molly's heart surgery. The surgery took maybe 2 hours, it went very well. She was intubated to breath and was hooked to so many things, it was really scary and emotional. Molly took about 2 to 3 weeks to heal from this heart surgery. She was so brave and strong for such a tiny baby girl.
When we were in the PTCU we got some lovely gifts from random nice people who donated things.THis outfit was in a basket that was donated to us by a family who had had a baby in the hospital before. This really made my day. Molly had a really hard time getting extubated. One lung or the other kept collapsing, probably due to the fact that she had a virus when she went into surgery. Who knows?
When Molly was extubated she had a really hard time getting off her airflow, by a hard time I mean that we worked on weaning her down off of airflow for months. She seems to need this flow of air to keep her airway open. She had to have this nasal cannula on and it took us weeks and weeks and weeks to wean her down off of her airflow. Molly had other complications during her long hospital stay. She got something called NEC, which basically is air around her intestines. Molly could not be weaned off of airflow and had to stop getting any food for 2 weeks, this happened two times during our stay. She also had a kidney problem during our stay with her creatinine levels way too high. All of this extended our stay much longer then anticipated. I stayed with Molly and daddy stayed with our three boys. It was hard! Our total stay in the hospital was a little over 5 months.
This is Molly's three month birthday. At this point she has a PIC line and her airflow through her nasal cannula and her ng tube.We had discovered that Molly has something called Bronchomelacia. This means she has floppy airways and needs airflow in order to keep those airways open. It got to be the month of February, we went from the the intensive care on the tenth floor to moderate care on the 11th floor. We got very aggressive with trying to wean her completely off of the air flow, her little body just could not get down past 3 liters of airflow. This is when we got very serious about talking about getting a trach. ENT talked to me and pulminnology talked to me. They said it was not an emergency to get a trachestomy but unless we wanted to sit with molly in the hospital for another year, we would need to get a trach and be connected to a ventilator 24 hours a day. They said this would not be permanent, and she should most likely grow out of this by age two. I did not want to do it! The thing that sold me on getting the tracheostomy finally was them talking about... if molly got a virus or the flu or anything it would be really unsafe for her to not have a trach. She needed a safe airway.They said with a trach in place she would have a safe airway and could make it through any sickness much more safely. That made our decision and we scheduled her tracheostomy for March 7. Her five month "birthday".
Molly had her surgery, she did great. It took about two weeks to recover from this, longer then I had anticipated. She had to be sedated for 7 days so as not to move around to much so we could let the stoma heal. This was a hard time for me. I fought to not get that trach and really never wanted to to have a hole in my baby. I prayed hard for this not to be, but when it did have to be it took me a little time to except it. I could hardly look at the tracheostomy site without tearing up everytime for the first week. That is the truth. But Mott children hospital puts all parents or caregivers through a very rigorous and intensive training to get ready for home. The training involves a three hour teach class, a three hour vent class, three teach changes per caregiver before leaving the hospital, a twelve hour care session in the hospital room with no nursing to help, then a 24 hour care session in the hospital hotel with Molly on our own. This Was all a large learning process for me and my husband. I remember being scared to suction her or to do teach care.
I remember so many people told me, "Jen, it is not a big deal, you can do this, you will be fine." I would get upset and think that I would not be fine, it is a huge deal, and I don't want to do this! I now know why people said this to me, looking back. They were trying to make me feel better about it and I agree with them that the actual trach and the care are something you get used to and it does become very easy. But I will always think that Molly being on a ventilator and a trach is a huge deal and it changes your life. It is hard. As you can see Molly really did great after she healed. She had her first big smile after she got her trach, that was a special moment. She got stronger and more comfortable. And we completed her training and got to come home!
Molly came home. It was happy but very hard at the same time. We had problems with our ventilator heater, we had nine emergency trach changes. We had problems with nursing. We went back in the hospital three times in the last three months. One time to get a G tube in her stomach, which you can see here her beautiful face with no NG tube! But another time was a virus and once more for pneumonia. She has a low immune system and can get things easily and must be hospitalized when she is sick. Molly Jane gets through all of this though...
Molly came home to see her brothers and play. She is doing so many great things at home
She is rolling to her tummy and then back to her back again, holding toys for long periods of time, sitting up in her boopy seat, she is even eating food like sweet potato, banana and avacado. She is now at the point where she looks like she might even try to scoot on her belly. She is such a smiley, sweet happy baby, so social and attentive. We are very blessed to have baby Molly in our lives.
Molly does have many medical journeys to still face. She just had her big heart surgery to correct her AVSD and her mitral valve. She is healing and resting and will be back to her smiley fun self soon!