Goals. Everyone at one point in life will set a goal for themselves or for others. This is how people succeed in what they want would like to accomplish. It is one step at a time taking each day at a time whether it would be losing weight, starting a routine or to better themselves. This has now become my life, setting a goal each day.
Over the last month, we have been moving forward towards my goal of making it first to 32 weeks without any complications. During this time, we celebrated all three of our birthdays, John and I being together for 10 years and Thanksgiving with our families all while Rebecca continued to thrive inside. Little did we know that would change within a day.
On Friday November 27, the day after Thanksgiving we went to my regularly scheduled growth ultrasound. We had our fingers crossed the whole time hoping that her growth continued and we would be released as normal until the next time. Once the sonographer was completed with her scan, she went to talk with the doctor as usual. This time, it took a while for her to come back and when she did, she was not alone. The doctor explained the situation to us with Rebecca's growth issue that even though she is growing she is not growing significantly. She is now less than the 10th percentile. We knew that she would have growth restriction in the first place due to her congenital heart defect since most babies with a heart issue are born smaller but for her case, the size is a big deal. Her size effects the outcome of her surgery and the shunt they would be able to use. Getting her to grow more/go full time is now the main focus of the pregnancy. Due to this, the doctor decided the best course of action would be bed rest for me. There is no proven study to say that bed rest will help increase her size but it is the only way they can think of to help me expand less energy and give her more calories to take in.
I went to work that Monday to get everything situated before I started bed rest and to discuss going on short term disability. I am a very fortunate person that my work has been so understanding and has supported me the whole time. Not many people have that support system at work and I count my blessings for the people I work with. It was very hard for me to stop working even though I knew there was some possibility that this would happen. It is also very hard for me to sit around at home and not lift a finger. Having a 2 year old at home makes the situation more difficult because she does not understand that Mommy can't get up and play with her. We tried to make it work the best we could for her and she was able to get lots of Mommy cuddles on the couch. As the week progressed, I continued my weekly appointments with the non-stress test and biophysical profiles with no issues. We wanted to do something as a family together for Christmas that Annabelle would enjoy so we decided to go to the Lebanon Horse Parade the first weekend in December. We were lucky that John's sister and her family went with us because they helped with Annabelle while I got to sit the whole time. She was so excited for the parade and loved the horses. She would tell them Merry Christmas and wave, let us know when the horses decided to poop and when it was stinky. It was the cutest thing to see. The smile on her face just lights up my world.
Monday December 7th I reached my initial goal of 32 weeks without any complications. I had my regular 2 week OB check up that day along with a growth ultrasound. During the visit the doctor informed me that she had not shown any significant growth and is still measuring less than the 10th percentile. She was measuring around 2 lbs 7 oz which is about 1 kilogram. She stated that I should bring my hospital bag with me next time I come back for growth ultrasound because if she does not show any improvement then I would go into then hospital and be monitored daily.
Two days later, on Wednesday December 9th the unimaginable happens. After being sent home two days earlier, I ended back up at Good Samaritan Hospital but not for a doctor's visit or ultrasound. Around 10 am that day I started experiencing bleeding which is not a good sign. I called the doctor immediately to inform them of the situation and I was told to head start to the OB triage floor. Once I got to the hospital, I was examined, had blood drawn, vital checks, checks on the baby to see what was going on. After all the initial exams, I called John to let him know of the situation along with my family. While I was on the monitor, they noticed I was having pre-term contractions. To help reduce contractions, I was put on magnesium sulfate and given a steroid shot to help mature Rebecca's lungs. I was very scared because I was so not ready for her to come out. Thankfully the magnesium sulfate worked and my contractions started slowing down and my bleeding stopped.
Over the next couple days, I was monitored around the clock and was stepped down from the labor and delivery floor to the high risk OB floor. I was so thankful to change rooms. It meant that Rebecca would be staying in longer, the bad news, since I bled it means a mandatory 7 days in the hospital from the first day of no bleeding. Still to this day, there is no definitive answer as to why I started to bleed but they think I had a slight placenta abruption that healed itself which would lead to my pre-term contractions. It will remain a mystery but what I do know is the earliest I could potentially be released is on December 17th as long as no new bleeding occurs or so I thought.
Over the weekend, my health started to decline. The doctor ordered pre-eclampsia labs. Turns out I have a mild case of pre-eclampsia on top of everything else. Now this makes life more difficult. I will continue on my current path of monitoring but now I will have to have blood drawn 2x a week to make sure my condition does not worsen. This could also mean that my hospital stay could be extended since my health is now in question along with Rebecca's. The doctor's say I am in such a gray area that they can not give me a firm answer as to what they want to do. There are so many factors to consider that the best course is not clearly defined. It is a pins and needles kind of game we are playing. Rebecca needs to stay in as long as possible to have the best outcome with surgery but how my body will handle her staying in has become the challenge.
An even bigger challenge now has come into play. We met with the cardiothoracic surgeon at Cincinnati Children's this past week along with having another fetal echo. We finally have an answer to the weight requirement for Rebecca. They would like her to be at least 3 kilograms (approximately 6.9 lbs) for the best possible outcome and least amount of complications. The reason for this is that the smallest shunt they have is 3 mm and the size of the shunt correlates to the weight. If the shunt is too large, then there would be too much blood flow going into the heart which could cause he to go into cardiac failure and not take the shunt. We really need her to have a major growth spurt in other words. They of course said they would do everything possible no matter her weight. This does give us some relief but not enough due to complications that can arise.
After our meeting with the surgeon, we went to our scheduled fetal echo. What was to come from the result is something we were not prepared to here. This echo lasted much longer than the others and was more detailed. When the doctor came in to discuss the results we were in shock as to what she said and was not prepared. The scan is showing another abnormality with Rebecca's heart. The problem with this abnormality is that they can not know for sure since the scan can only provide so much information. She informed us that Rebecca's right side artery may not be functioning at optimal level or at all. The only way to tell for sure is to have her go through a cath lab. If it turns out that her arteries are normal on her right side we will proceed with the initial plan of the three surgeries. If it turns out there is issues with the arteries, then we have a huge problem and the arteries will not be fixable and it means we can proceed only with the first surgery. This will give her approximately 4-6 months to live on the first surgery as long as she does not have any complications. In the meantime, she would have to be placed on the heart transplant list and we would be waiting for for a teeny tiny heart to become available. To add to the matter, there is also a weight requirement for a transplant that we are waiting to here about so she could potentially not qualify right off the bat due to her size. It was the most gut wrenching news I have ever heard in my life. To know you are carrying a life and not be able to do anything to help her is indescribable. Needless to say my goals for this pregnancy has changed dramatically.
Before my goal was to make it to 32 weeks with being pregnant. I have now made it to 33 weeks. My goal now is to take each day and stay pregnant. I can only take it one day at a time. Each day that I wake up pregnant and each day I go to bed pregnant I meet my goal. People keep asking me how I am handling everything and if I am doing ok. Honestly to tell the truth, no I am not doing ok. What normal person would be. I am just choosing not to dwell on it. I am focusing on Rebecca and my health as that is all I can do at the current moment. I am focusing on the little things. I am not looking towards her birth and trying to make those decisions now and worrying myself with them. Who knows if this is a healthy way to deal with feelings but for now it is getting me through my day and it is working.
Rebecca is thriving and continues to impress me everyday. She is such a fighter and is a wonder to us all as to how she is handling all this. She is my superhero and my inspiration.
