Friday, April 24, 2015

April 24 - Dear Nicholas Sparks (Guest Blogger Susan Nugent)

Dear Mr. Sparks,

Ashley was bom on New Year's Day of 1997 and thus began her struggle for life. What is supposed to be a joyous occasion turned into a horrible nightmare. I had a uneventful pregnancy with a sonogram at four months. Nothing was found. I was concerned about birth defects as my last pregnancy resulted in my youngest son having a bilateral cleft palate. The doctor assured me to not worry. Further in my pregnancy Ashley was extremely active. I often wonder if this meant anything in hindsight. When she was born the doctor gave her to me and for about 20 seconds I held my fourth child. I noticed she was struggling to breathe and she was immediately taken away and suddenly many people were in the room. My husband heard one of the doctors say he couldn't hear a heart beat. We later learned he couldn't hear her heartbeat because of her heart being displaced. She was life-flighted to a nearby hospital for surgery, which she had at four hours old. She made it through but was still very sick. We managed to get her transferred to Cardinal Glennen Hospital in St. Louis. What a blessing that was! The doctors and nurses are extra special there. There they were going to try nitric oxide so as to avoid ECMO. Unfortunately it didn't work and at three days old Ashley was placed on ECMO. Ashley did great on ECMO and managed not to have any of the awful side effects that is associated with ECMO. On the sixth day, the surgeons were happy with her blood gases and said she could come off.

Then began the waiting for Ashley to be weaned off the vent. After about six weeks she came off. I never forgot the day she came off. They had put her on C-PAP. She looked like something from outer space! I had a feeling she would take a pacifier. The nurses prepared me for disappointment, but they were the ones surprised! She immediately took it and sucked noisily on it. That was one of the happiest moments in my life! Thankfully my favorite nurse in the world grabbed somebody's camera and took a picture of her sucking on that pacifier. I am forever grateful for that picture. It was then I knew she would make it. Now the next bump in the road was getting Ashley weaned off TPN. It took a little longer than the doctors expected because she kept draining fluid from her chest tube (she had her chest tube in for about seven weeks!). I can't remember exactly the reason why the doctors said she couldn't eat regular formula or breast milk, but she couldn't. That was very disheartening because I had saved a lot of breast milk. Finally she got to have her first bottle at about eight weeks old and of course it came right back up. The doctors put her on Zantac and Cisapride. That worked but it was still difficult to get her to eat much at one time so she was put on high calorie formula. Slowly she took more. You know you are ready to leave the PICU when you get moved around a lot! One night alone, Ashley got moved about three times and she couldn't be moved to other unit on the floor because they were so full! Those poor nurses, they do such a fantastic job and work such long hours. Finally she was moved to a regular floor. Another three weeks of trying to get her to eat and we finally got to go home. That was overwhelming! We came home with oxygen, a pulse-ox machine, and a heart monitor. We have had many ups and downs with two emergency surgeries for bowel obstructions. Because of the initial surgery, scar tissue had formed in Ashley's belly causing adhesions to form. This adhesions cause the bowel to stick together causing her bowel to twist. The first one was terrible. She had diarrhea and I thought she had a bug. But the diarrhea didn't go away and then one night she started to scream in pain. Our local hospital was ill-equipped to deal with Ashley. Unfortunately, we waited til morning to get her to Cardinal Glennon. She was very sick and needed surgery immediately. For the next six months, we dealt with tummy aches and several trips to the local ER. One trip led to an ambulance ride to Cardinal Glennon. I felt like a paranoid mother at this point. Nothing was found. A week later she couldn't keep anything down, so back to the ER. This time a helicopter ride to Cardinal Glennon was in order. She recovered so much faster with this surgery.

Written by Ashley’s mom, Susan Nugent (Illinois)

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