After 7 years of infertility and a miscarriage, my husband and I were ecstatic to learn that we were pregnant with twins. I had a hard pregnancy. I had a sub chorionic hemorrhage, placenta previa, shortening cervix, and constant bleeding. But I was diligent at taking care of myself, because my little monkeys were all that mattered. At 23 weeks, I started feeling what I thought was Braxton Hicks. I went to the hospital and they said my cervix had shortened tremendously and I had a UTI. They swabbed me and said I would probably deliver within the next 5 days. I was transferred by ambulance to a hospital with a level 3 NICU outside of Chicago.
For 4 days, I was in the hospital in the trendelenburg position, praying that my little ones would remain in the womb. Then the Doctor came in to check my cervix and I was ready to go. I was taken to the OR and out came my two sweet little babies. Adelaide Louise Hoffman was born at 1 lb 5 oz and Henry Paul Hoffman was born at 1 lb 9 oz. I heard Adelaide cry. Then off to the NICU they went.
I knew statistics are grim and I was devastated; it was like finally getting everything you have ever wanted and having it hanging on a very thin thread. I have always been a silver lining kinda gal, so I rallied and started our NICU life. They were doing awesome for the first couple weeks, but then Addie Lou got really sick. The doctors first thought she had SIP, so they put in a tube to let the gas and fecal matter escape out of her stomach. Then one of the stitches popped and part of her bowel was pushed out of her body. She just wasn’t getting better; she was on EPI and dopamine but was somewhat stable. They decided to go in and remove the infected bowel and correct the stoma. When the surgeon went in, she said that it wasn’t SIP, it was NEC, and not nearly as bad as she thought it would be. That gave us hope.
Adelaide came back from surgery and her stats were good so we went home for the night and celebrated our brave daughter. Then we got the call that all NICU parents dread, “You need to get here right away.” Our little lady was septic and was in renal failure. She fought like a champ, but she just wasn’t going to make it through. So my husband and I decided instead of her being in pain from the illness, we would let her go in peace and love. I held her and sang to her through her final moments here on earth. She passed on March 16th, 2013 at 9:14 am. We had a beautiful service with all of our friends and family to celebrate her short but important life. We were broken but we had to be there for Henry because his battle was just beginning and he needed us. So we forged on.
With the help of the wonderful nurses and doctors, we were able to navigate the scary NICU life. Henry had many battles, underdeveloped lungs, two separate surgeries, and a couple of infections. We were there every day with him. I spend 8-10 hours a day with my little man, we have read countless books (currently we are working on the second Harry Potter), we learned infant massage, and I took the most disgusting fish oil in the world hoping that it will translate through to his breast milk. We kangaroo cared him for hours. My husband pestered the hell out of tons of people to have Henry pilot a new milk fortifier at the hospital, because it is said to be better for babies than the bovine based one but insurances are hesitant (to put it mildly) to cover it because of the high cost. We have done everything we possibly could to give him the best possible chances in this situation we were thrown into.
Finally on July 1st, we brought the little man home. He is AMAZING!! He came home on an NG and a little oxygen, but the doctors think that he will be able to be removed from all of that in October. He is up to 9lbs 9ozs. He can “talk”, roll over, scoot, mimic, laugh, smile and he makes every day brighter. We mourn our Adelaide every day and she will always be part of our little family, but we are strong for Henry and plan to make his life beautiful.