The First Surgery

The first 10 days consisted of a lot of emotional ups and downs. As if I hadn't already been on an emotional roller coaster, but this was different. Not only was I dealing with the news of having a child born with Down Syndrome and feeling unsure about what all that meant for his future, I was worried, concerned, and angry with the pediatrician for being such a dumb ass and not erring on the side of caution.

Even though I was angry, I also felt peace. It was so weird, but comforting at the same time.

I remember one day walking back into Jack's room to find a strange woman sitting and chatting with my mom. She politely introduced herself as "the social worker." Immediately, I thought: "oh, great...she's here to judge me as a mom and to see if I am equipped to be his mother." I soon found that she was only there to listen. She was there to make sure I was "dealing" with everything "ok" and to make sure I was "emotionally sound."

Something about this woman really irritated me! As I sat in the rocking chair, next to Jack's crib, she sat across from me and began asking me questions like, "How are you dealing with everything?" I thought, what kind of question is that? How do you think I'm dealing with everything? She went on to ask, "What is the diagnosis so far?", "Would you like to meet other families with a child with DS?"I told her I wasn't ready to meet any families yet, but thanked her, wanted her to hurry and get on her way. Then she asked, "Can I print up any material or bring any books for you to read?" I told her that was fine, but knew I wasn't ready to read anything yet. I was still absorbing all of this "newness" in my head. He had already stolen my heart, but my head was still having a hard time coping and dealing with the news.

The questions just went on and on. I was polite. I even cried a little for her so I didn't seem unattached from the situation. I really felt like I had to put on a "good" show for her. It was awful! Her visiting hadn't helped one bit! My mom returned, hopeful, that I had received a "good" counseling session and I looked at her, rolled my eyes, and told her I thought that woman was annoying and thought she would never leave!!

Not all of our visits were bad. I found so much comfort in having visitors. It was unbelievable how many visitors I had! One day, Jacks nurse commented on all of the visitors....she said, "wow, there sure is a lot of love in this room...you can feel it!" She was right. The love from our visitors combined with the love that little Jack radiated made that room very special and you couldn't help but want to feel and be a part of it. I had visits from my sister (almost on a daily basis), parents, in-laws, grandparents, my aunts, and uncles, several cousins, old friends from San Diego, childhood friends from Utah, and the list goes on.

I learned so much from each of these visitors. I learned about Geneology from my Uncle Bill, I learned what kind of books and food my grandparents enjoyed, I enjoyed visiting and catching up with old friends...it was amazing! Each would come, want to hear our story, hold Jack, and cry with me. There is something to be told about someone who is willing to carry your burden with you and cry with you. I found so much comfort and joy in each and every one of those visits.

The first 10 days passed quickly. The day of surgery had finally arrived! The nurse prepped Jack for surgery and she and I rolled his bed down to the 2nd floor for his surgery. The anesthesiologist discussed with me, one more time, the process and then they asked me to say goodbye and rolled him away for surgery. My entire walk to the waiting room was tearful. I couldn't imagine such a tiny baby having such a big surgery. But, I was extremely confident in our surgeon and knew he was in good hands.

As I sat in the waiting room, I watched other parents waiting and wondered what their child was having surgery for. I was tired, but I couldn't sleep. I was hungry, but I couldn't eat. All I could do was sit there and wait. The first hour passed and the O.R. called me to give me the first update...everything was good. The second hour passed and I received another call to let me know Jack was doing good. Then, another hour and a half passed and I received the final call to inform me that surgery was complete and they were moving Jack to recovery.

Soon after that call, the surgeon came into the waiting room to visit with me and let me know how Jack's surgery went. He drew a picture of Jack's stomach, duodenum, intestines, etc. He explained that Jack also had a malrotation that needed to be fixed. Meaning, his bowels were twisted and need un-twisting. Fixing the malrotation put Jack's appendix on the opposite side of his body, so in order to avoid any future confusion he removed his appendix. He also re-connected his intestines to the lower part of the stomach and made the opening larger so "things could start moving through." All in all, the Duodenal Atresia, Malrotation, and Appendectomy had all been fixed. He was very optimistic and assured me that we were now on to the road to recovery.

I was called back to the recovery room to see Jack. He was pale and totally out of it. The nurse told me he had slightly "woken" up so they would be sending us back to our room. We gently rolled Jacks bed back up to the fourth floor and waited, and waited, and waited for him to wake up. All day, he was completely out of it! He didn't move, he didn't open his eyes, and he was so pale. The anesthesiologist had prescribed some morphine to help with the pain and around 4pm the nurse debated whether or not to administer it, but decided to start his morphine drip.

All day long, the nurses kept saying..."oh, he's just really comfy!" About 3 hours after the morphine drip, Jack's heart rate started to, occasionally, drop and his rate of breathing would take large plunges as well. One nurse commented on the fact that some kids end up going to the PICU shortly after surgery and was hopeful that Jack wouldn't be one of them.

It had been another long day. Another day of forgetting to pump and I was extremely engorged, again, and the nurse encouraged me to go pump. So I did. As I returned, there was panicked nurses and chaos exiting Jack's room. I rushed in to find several nurses from our floor circled around Jack's crib. They began to inform me that Jack had stopped breathing, turned blue, and seconds before pressing the "CODE" button, they revived him. Another miracle, yet again, proving Jack's strength and will to live.

He'd had a poor reaction to the morphine and they injected a special medicine that reversed the effects of it and he immediately began to wake up and cry. It was a miracle!

Post surgery, the Doctors continued to decompress his stomach of the bile and expected it would eventually decrease and become clear. It was still icky yellowish-green and they assured me it would do what they had promised. The days and weeks passed and nothing was happening. The doctors assured me it would and that I needed to be patient and wait. The waiting was the hard part! All I wanted was to take my baby home, be reunited with my husband and kids, and be a family again...