The babies are 18 months old and I can’t help to feel like I have already let them down, despite my effort to never do so. This week Eva had to go by ambulance to the ER because of a high fever and because she was so inconsolable her lips were turning blue. While we were waiting for the ambulance I had both babies in my arms and I started to cry exactly like them. Eva was in pain, Eidan was scared and I am their mom and it is my job to help them and I couldn’t.
Through an X-ray a hiatal hernia was officially confirmed and now she needs another surgery to correct that as well as to fix the fundoplication that she already has. The same fundoplication that and has given us problems since day one. Even though its been rough we have finally found a system that works for us and were going to back to square one right after this next surgery. We don’t know if this time things will be better, or worse. I can’t help but feel right back in that dark room I was in months following the birth of the babies.
I am tired of seeing her through pain, I am tired of being away from my son, and I am tired of only seeing my husband when we switch out from the hospital. I don’t want my daughter to have yet another battle scar, I don’t want to miss out on my nightly rituals with my son, I don’t want to have to update my husband or get updates of our daughter, depending on who’s with her that day/night at the hospital when she has to go in again.
I don’t know how I am going to tell her how incredibly strong and how fucking unbelievable she is despite every one of her imperfections when she becomes a teenager and she starts to notice. I don’t know how I will tell her that God made her heart the way he made it in perfect timing and for perfect reasons. That she was born at a time that it could be repaired because he knew the love in her heart was too much a regular heart could handle. I will tell her that scar on her side from that procedure is beautiful. The g-tube and fundoplication scar was put there because she had to learn to eat by mouth later in life, because during the crucial period that babies learn to drink out of the bottle, she was too weak and needed to focus on healing and growing to get out of the hospital to be back with her brother. I will tell her as soon as the g-tube is taken out and after a scar forms that it is beautiful and I couldn’t wait until I saw that one created. The cystic hygroma was the first thing the doctors saw when they realized there was an issue when she was still in my belly, and it was a reminder of the long hard road for all of us. When it was removed that reminder that every doctor said she was not going to survive was gone with it. That scar is my favorite and I will tell her its beautiful.
I will always tell my son that he is just as special as his sister. I will tell him she is no more important than him because I know he will feel like that. I will tell him I recognized at a very early age that he is very perceptive and extraordinary. I will let him know I tried very hard to give him extra time after Eva goes to bed so he knows he’s important too. I know he will feel like she gets more attention sometimes because of her health but I will remind him that she is alive because of him and he is alive because of her and that is a bond that is more precious than any person can describe. I will remind him that he is always her protector and God planned this perfectly for His purpose. I will forever thank him for his patience, love and sensitivity that reminds me so much of his father, and is reason why I fell in love with his father in the first place.
Thank you God for every day and every battle. Don’t let me forget any of it.
January 22, 2015 Eva was discharged from the NICU, but not without a fight. I didn’t think I was ready to take care of her at that time considering everything that had happened back to back with her health. I remembered watching her expressions as we left the only place she knew, the hospital, and it was incredible. She was always a very observant baby there so as soon as we were outside her curiosity was set on super mode. In the car she looked out the window as we drove and watched the trees and at every stop she would look at me as if I gave her comfort because I was a familiar face but soon after that comfort faded and I became a stranger.
The moment I had been waiting for was right there. My babies were finally reunited 142 days after their birth and it was such a let down… they ignored each other despite all of our efforts. Soon after getting her situated I started getting adjusted to the g-tube equipment, medications, preparing her milk for the next 24 hours (which was very complicated), still pumping and the biggest adjustment of all… meeting the needs of two babies at once. Soon after starting her feeds through her g-tube her crying started. She was inconsolable multiple times a day from then on. Because she had been connected to machines in the hospital always, trying to walk around with her to try to calm her would result in fear because she wasn’t familiar with that feeling of being held and walking. I was sad, overwhelmed and wanted to die. I was not suicidal but at this point I was running on empty with little to no sleep. I had to stop pumping soon after she got home but the every few hours of pumping were replaced with adding more milk to her g-tube bag every four hours. She was being fed 22 hours a day at this point and still connected to a machine but at least it wasn’t 4.
Then, February 8, 2015, happened. 17 days after being home I had the fright of my life. This night I got up 30 min before the next time I had to fill up her g-tube bag of milk and I was tempted to hit snooze but something told me to stay up and watch her, so I did. Probably a minute away from thinking I was crazy I noticed milk started coming out of her mouth… then her nose and she was white and unresponsive. I knew there was a problem. I stopped her food and started suctioning her milk from her mouth and nose and had my husband call 911. Ultimately she ended up aspirating and ended up in the PICU for a few days and she remained in the hospital right up until the night before her next heart surgery. Unfortunately as soon as we go to the hospital she was herself again. I hadn’t seen that happy girl ever since we got her home and I knew at this point she thought the hospital was home and I realized there would be a lot of work to do.
Her 2nd heart surgery was on February 17, 2015. This time they did an aortic coarctation repair with a patch aortoplasty. She was in the PICU for another few days but she did really well overall. Following this surgery her heart has been doing good as well, praise God. She has been able to come off 1 of 2 of of her medications that she was originally discharged with and we now are able to see her cardiologist every 6 months instead of every month. They are still monitoring that area along with other valves that are smaller than normal. We know as she gets older they will have to intervene with surgery again but until then we thank the Lord she was born at a time where medical knowledge is where it is.
October 16, 2015 was THE surgery we knew she would need inevitably from the time she was born. It was to remove a large cystic hygroma located on the back of her neck. This anomaly is sometimes part of turners syndrome but in this case it was larger than they had ever seen. Ironically this was the one surgery I had the most anxiety about because I knew it was going to take the longest but it ended up being the best. This is because she healed so nicely and her pain was very minimal. Tylenol did the job when they usually had to use narcotics in all of her previous surgeries. Since removing it you can tell her neck is very strong and she is fast, ninja fast. She is a lot happier and we are so blessed. After all of her obstacles she consistently proves doctors wrong and its such a beautiful feeling. She now loves being home with her brother and I am now the person she goes to when she is hurt or sad. In the beginning I questioned if we would ever have that bond because of our very rough start but we do. Our bond is unbreakable.