After ten days, Ace and Ava were both taken off their monitors and we were able to hold them together for the first time. This was also our son's second birthday so it was a very precious day for us. We were able to take our first photo as a family of five. I was also allowed to nurse both babies. From this point on, both babies seemed to do fairly well. Ace gained more rapidly than Ava and was moved to a crib and then allowed to come home. This was bittersweet. It killed me to leave my baby girl behind. I felt like we were abandoning her. I had two babies and felt I should be leaving with two babies-it just did not seem right. I think the entire floor heard my sobs as we walked away from Ava carrying Ace in his car seat. Ace spent 27 days away from his family in the NICU before he was finally able to come home.
Ace settled in at home and I brought him with me often to visit his sister. I would place them together in Ava’s crib or in the stroller. Initially we had hopes that Ava would come home shortly after Ace did however, we soon realized this would not be the case. Ava began having complication after complication. She developed two bleeds in her brain, ROP of her eyes (stage 3 in her left and 2 in her right), two inguinal hernia, horrible reflux, and severe constipation. She and I spent the fourth of July back in the intensive care unit, with her struggling once again to maintain her own body temperature and her literally choking on reflux. At one point they had to stop her feeds all together and put her back in IVs so they could try to figure out what was going on, why her stomach kept “blowing up”.
Because of all of Ava’s GI issues she was only able to eat an ounce or two at a time. She was constantly uncomfortable from vomiting and constipation and acted like she was starving. Her growth was sluggish if existent at all and I was so discouraged. She had to reach four pounds before she could have surgery on her hernia and at the rate she was growing, I felt like this would never occur. My due date came and went and it felt like Ava was never coming home.
Eventually, her system started to settle down a little thanks to very small feedings every 2-3 hours. On July 16th, two months and one day after she was born, she was 3lbs 10.6 ounces. I had a talk with her doctor, and at this time, he told me that I should not plan on returning to work as a high school teacher in September. He said Ava was going to require too much extra care and that he would only feel comfortable releasing her in my care, knowing I was going to be her full time care taker. Financially, this was devastating to our family, but we knew there was no alternative, so I took a leave of absence from the school-which eventually turned into a permanent thing.
Because of her continued GI issues, her doctor decided to put her on Zantac and a special formula called Neocate. This formula is made for babies with very sensitive digestive systems. Although Ava’s symptoms certainly did not go away, they seemed a little better and she was able to keep down enough food to grow.
By August, Ava finally reached four pounds and was able to have her surgery. They gave her spinal anesthesia and everything went well. The bleeds in her brain and her ROP also both resolved. Ava was finally ready to come home. In order to do this, she had to gain three days in a row. I remember the nurses coming down every night for her weigh-ins to cheer her on and see how she did. On the third night of a small gain, everyone cheered for her success and her doctor told us to hurry up and take her home! August 11th, after 86 days in the NICU, Ava came home with her family at just over 4lbs.
Our time in the NICU is a time of my life that I will never forget. It changed me forever. It made me stronger in some ways, causing me to reach into myself finding a strength, persistence, and courage that I did not know I had. I experienced such a range of emotions in the three months including-excitement, fear, rage, emptiness, hopelessness, hope, desperation, frustration, tiredness, and amazement. Only those who have been through a similar experience can truly understand what it means to leave your child every day in someone else’s care, to have to walk away from your child and not be there to comfort every cry and accept every sign of affection, to have to rush into the hospital after receiving a phone call in the night telling you that your baby is not doing well and that you should come in just in case, to cry every single time you have to walk away and to have a constant ache in your chest. Only those who have been through this also can understand what it means to make it through, to finally be able to look at your baby and check on them at any time without having to make a phone call to a hospital or drive there-this is the most amazing feeling in the world, to have your baby home.
Despite how heart wrenching this experience was, I am forever grateful to have such an amazing NICU 45 minutes from my home. To have amazing doctors and nurses who were able to save my babies and care for them until they were strong enough to be cared for at home. I am also forever grateful for the friends that I met while there. Ace and Ava have a couple of amazing little friends that were in the NICU with them and I hope they always keep these friendships. My husband and I formed friendships with the parents of these little miracles. I spent countless hours talking to different moms through curtains while we each sat nursing our babies. I received some amazingly comforting hugs from some of these moms in the halls of the NICU when tears were pouring down because it was just all too overwhelming at the moment, and in the days, weeks, and months following our leaving the NICU conversations, I have shared with these women, updating them on my babes and getting updates on theirs have brought warmness and comfort to my heart. Our time in the NICU would have been so much harder to get through without these amazing people and I thank God for every one of them.
