My husband Justin and I were married on October 8, 2011. We always knew we wanted children and could not wait to start our family. We were so excited when shortly after we got back from our honeymoon we found out that I was pregnant. Then, devastating news…I lost the baby at 8 weeks. The fact that this happens to 25% of women was no consolation. Still we knew that we would get through this and as soon as we were cleared we started trying again. After much prayer God blessed us again. My due date – March 17, 2013. That had to be a good sign right?! Well I am Irish so I was taking it as that. Nothing prepares you for the news to follow.
During my 20 week ultrasound everything seemed to be going well until the nurse left the room saying she had to get the doctor. She was having trouble with an image. My heart sank. What could be wrong? After the doctor came back in and looked at the images he shared the news. The left side of the heart was extremely underdeveloped. All I could think was are we going to lose this baby too. This was one of those days that we will never forget. The day our lives changed forever, November 2, 2012. After our consultation with the Fetal Heart Team at The Children’s Hospital of Philadelphia it was confirmed that our baby has Hypoplastic Left Heart Syndrome. HLHS is a severe single ventricle heart defect. Trying our best to keep it together, we listened as the doctors explained what this meant for our daughter. Half a heart? How do you live with half a heart? If we learned nothing else that day we learned there is hope for Bella. From that day on our lives changed and we committed ourselves to making sure Bella had every chance at a long and happy life.
After months of research and education on Hypoplastic Left Heart Syndrome, endless ultrasounds, and echocardiograms of Bella’s heart, we were here…March 17, 2013. Bella’s due date and the day I was to be induced. We arrived at the Special Delivery Unit at CHOP…not that I would want to have to deliver there again, but what an amazing experience. I cannot say enough good things about the doctors, nurses, and midwives in this unit. Well…after 20 hours of labor she made her appearance…Bella Jones Borkowski born at 9:39pm on March 18, 2013 ringing in at 7 pounds 15 ounces. She came out screaming…much like her mommy for the past 20 hours! I have never been so happy to hear a baby cry! Bella was taken to the stabilization room so that the doctors and nurses could start her on a medicine called prostaglandin that she needed to keep her heart functioning until her first surgery…the Norwood procedure. They did bring her back to the delivery room to see Justin and I before they took her to the Cardiac Intensive Care Unit. And much to our families excitement, they wheeled her by all 15 of them so they could snap some pictures. Justin and I were taken to the CICU about an hour later and I got to hold my baby for the first time! PERFECTION!
And this is where Bella’s Journey begins…
Overwhelming is probably the best word to describe everything about this experience. We were overwhelmed with love for her, fear for this situation, and support from our friends and family.
So here she is with us, hooked up to some monitors that allow the doctors to know how she is doing until her surgery. The days that followed were a blessing actually. Our surgeon was unavailable until the following Monday to do Bella’s surgery. We got to spend so much time with her…hold her and kiss her…and I got to feed her and she nursed so well. This is something that heart babies can have a hard time with in the beginning so we were lucky to have these days with her to work on feeding. The nurses said when she was able to eat again after surgery she would remember it easier. That was my goal…no tubes for Bella!
It is the night before surgery and to say that we were nervous, scared and anxious was an understatement. We stayed in the parent rooms at the hospital so we were close. 5:30 am came and I could not wait to get to her to hold her until she left for surgery. I never wanted to let her go and that time came way too soon for me. So we kissed our baby and started praying!
We met with the surgeon for the pre surgery consult. It was just an overview of what he was going to do. We had a pretty idea as we had months to prepare for all this. Our nurse gave us hourly updates. Bella was doing well and everything was going as planned. After a few hours of waiting Bella’s nurse came out with the final update. She was out of surgery and did great. We felt like we cold breathe again. Tears came out of relief. Our little hero! She has already gone through more than most people do in their entire lives. Unbelievable! It would be about an hour until we could see her.
Nothing prepares you for seeing your child with leads, IV’s, on oxygen…and you are helpless. We just have to wait to see how her body responds. As the days went by everyone seemed very happy with her heart function. The surgery was a success. They started reducing her oxygen, taking out tubes and heart lines… We couldn’t believe how fast she seemed to be recovering. I guess we should not have gotten too ahead of ourselves.
After all Norwood procedures the Neurology team monitors brain function. Turns out Bella was having subclinical seizures. They were short but occurring regularly. The next step was to find the correct dose of anti seizure medication and that took a few days. More worry about what this means for Bella’s quality of life. Would there be permanent damage? Will she always have seizures? Relief came about the 3rd day post surgery. They were happy with her amount of time with no seizures and would continue her on this dose of Phenobarbitol to make sure the seizures stay away. Our surgeon stopped by to see Bella and said she looks great and the seizures these babies have do not normally have long term affects and typically stop a few weeks after surgery. Sigh! I felt like I could breathe again. This journey so far is like a rollercoaster that we will be on for a long time.
Seizure free Bella continued to progress. Once she was awake enough we were able to feed again. My girl didn’t miss a step! Latched right on and was nursing like a champ. I love her!
The following days in the CICU we just worked on her weight gain and made sure we were prepared for taking her home. Wednesday, April 3rd we headed for the step down unit. One more step closer to taking our baby girl home. We spent the next few days taking care of her, just like we would on our own.
The doctors came in for rounds on Friday morning. “Looks like we can get ready for discharge on Sunday”. Excitement ran through me. We get to go HOME?! 3 weeks in the hospital felt like forever. April 7th we brought Bella home. The feeling was unlike anything I have ever felt. We were waiting so long for this.
Bella continues to do well at home. She see’s both her pediatrician and cardiologist twice a month. She is on daily medication to keep her heart functioning the way it should. Other than that she is a normal 10 week old baby…keeping me up at night, eating a lot, and growing everyday.
This is only the beginning of our journey with Bella and we have every reason to believe she will grow to be a happy child, teen, and adult. When we think back to everything we have been through with her it is overwhelming to know all the people that took care of our baby like she was their own. We truly cannot thank all the doctors and nurses at CHOP enough.
So now our lives have changed for the better because we are stronger people than we ever would have been without her. As Bella grows she will be an example of the hope that there is for families whose babies are born with a Congenital Heart Defect and we vow to continue to raise awareness for all the babies and children out there that fight everyday to live.
Beats for Bella Inc. will hold annual events to bring family and friends, old and new, together to raise money and awareness for this cause that is so close to all our hearts. As always, we send many thanks to all those that have supported, loved and thought of us and continue to think of Bella through her journey with Hypoplastic Left Heart Syndrome.
