Final Days at PCMC

I can't ever remember being so exhausted in all my life.

In the hospital, Halloween passed (my birthday), the first of November passed, and now we were nearing the middle of November. I watched the seasons change through hospital windows. When Jack was born, I arrived at the hospital in capris and flip-flops. When we were transported to PCMC, I remember noticing how beautiful the leaves on the trees in the mountains were and it was still warm outside. By the middle of November, I had watched it snow outside, heard others complain about the cold, but hadn't really experienced it myself. Occasionally, I would go outside and feel the bite of the cold weather, but it never really occurred to me that the seasons were changing, time was really passing by, and winter had officially begun.

Jack's second surgery went extremely well. His surgeon arrived to our room at midnight, the night of surgery, to check on Jack. He was so concerned and baffled as to what had happened and wanted to make sure both Jack and I were doing ok. My love and appreciation for this dear man grew each day. He became, somewhat, a surrogate grandpa or dad in a way to Jack and I. He made us feel like we were more than just his patients and truly showed and expressed how much he cared. He made it a point to visit every day.

During the following week, Devon arrived home for good and we decided it was time to give our little Jack a name and a blessing. Normally, we make a big deal of this occasion and invite friends, extended family, and so on. This time, the setting was much smaller. Jack's room was only large enough for a few selected family members to attend. We invited my parents, Devon's parents, My sister and her family, and our Bishop and his wife. Jack looked even tinier than he was as all of these giant men lifted him into their hands as they blessed him. The spirit surrounding all of us that day was emotional and uplifting. Devon gave Jack a very sweet and heartfelt blessing. Similar, but different than our other childrens blessings. This time there was no promise of marriage or fatherhood, but simple and sweet blessings and promises of health, passion for life, and the good that will come from his life as it touches others. I am so thankful that we were allowed to bless him there and the sweet experience that we shared together that day.

A day or two after surgery, our surgeon told me that we would be more cautious this time around and would do an Upper GI one week post surgery to ensure that Jack was "open." He told me that if I heard Jack "fart" that was a good sign. Yes, even distinguished surgeons use the word "fart"--that was so funny to me! On the 6th day, post surgery, I was giddy with excitement. You would have thought it was Christmas Eve and I was awaiting Christmas morning to arrive. That night, I couldn't sleep. I was too excited about the Upper GI the following morning and just knew everything was going to be "open" and ready to move things through. I prayed all night. I prayed that the Upper GI would go well in the morning and that Jack would be able to start eating, hold down his food, and be able to go home soon. I knew that once he started to eat, they would start talking about when they could send us home.

Finally, morning arrived and we rolled Jack down to the first floor for his Upper GI. Rather than drinking contrast, this time, they did an old fashioned x-ray to see if there were any air bubbles forming in his intestines. Air is a good sign. They took the pictures and rolled Jack back up to his room. Approximately, 2 minutes later, our surgeon arrived with excitement in his eyes and told me that Jack was "open!" That was the best news ever!

By this time, we were 1 days away from Thanksgiving. He looked at me and told me he was considering putting Jack "on gravity," which meant removing Jack's Anderson tube and watching to see if his intestines could handle the fluids on their own. I begged, pleaded, and convinced him to do it. He didn't want to do it for a couple more days, but I just knew that Jack would be fine. After pleading and begging, the surgeon agreed and told the nurse to pull out the tube.

Jack was still on TPN and Lipids and would remain on those until the end of his stay. The next day, the surgical team arrived and informed me that we were going to start feeding Jack. This time, we were going to start by feeding him 5cc's of gatorade (which is 1 tsp) and up that 10cc's every 10 hours. If he could handle that, then we would start feeding him breastmilk the following day.

It was Thanksgiving day, Devon had finally finished his training, my parents, my brother and his wife, and my sister and kids were all together to celebrate this marvelous day!

My family and I discussed where we should have Thanksgiving and wondered if I would be willing to take time off from the hospital and spend it at my sisters house. I told them that I didn't care about being anywhere else, I wanted to be at the hospital with Jack and if that meant eating cafeteria food--I didn't care. They understood and told me they really wanted to be with us and wanted to cook dinner and bring it to the hospital. I thought they were crazy and tried to convince them otherwise, but they had their minds set. With permission from the nurses, they allowed us to use their 4th room Conference Room to eat. My family arrived, as promised, and loaded up wagons from the first floor to carry all of their home made goods. They even came prepared with cute decorations for the table and all. Just as we were about ready to eat, the nurse told me that Jack could go too! We unhooked a few of his wires, other than his TPN and Lipids and CARRIED him to the conference room. Of course, his TPN and Lipids were attached and rolled behind us, but it was so great that he got to come and be with us. All of us were together, for the first time and it was amazing!!

It was one of the most memorable experiences of my life. The expression of love and gratitude from my family was incredible! The fact that they were willing to sacrifice their own Thanksgiving dinner and bring it to the hospital was so touching! It was so great because we were all able to sit and visit and eat without me feeling rushed to get back to the hospital to be with Jack. The kids even got to play in the playroom (which is amazing in itself) and we got to just be...I loved every minute of it! Jack even got to eat his own Thanksgiving meal...10cc's of gatorade!

It's amazing how one small little baby can bond a family together. We thought we were close before, but Jack has shown us how much we need each other and has taught us how important and precious life truly is.

Jack ate extremely well. There was no vomit and we were able to steadily increase his feeds. The goal was for him to be able to eat and hold down 20z. I thought the goal seemed extremely high and couldn't imagine Jack ever being able to eat that much. Somehow he did and the following Tuesday, after Thanksgiving, Jack was released from the hospital and sent home.

The joy and fear of being allowed to take Jack home was immense! We packed up all of our belongings and emptied out room 4320, said a few tearful goodbyes to our loving nurses, put Jack in his car seat, rode down the elevator, walked out the hospital doors, walked to the car, loaded up our things, and drove home!

2nd Times a Charm!

Blake, Luke, and Jack at PCMC

The days and weeks passed very slowly! Luckily, my brilliant husband convinced my father-in-law to buy me a Blu-Ray DVD player so I could access our Netflix account while at the hospital. Within 6 weeks time, I watched all 5 seasons of "Say Yes to the Dress," 2 Seasons of "Prison Break," "Laguna Beach," and the first season of "The Hills."

Every nurse on the floor knew my name and was accustomed to seeing me in my sweats, pony tail, and no-make up in the morning. The sleeping arrangements were not the best, but at least I was allowed to sleep in Jack's room. I slept on a large chair that pulled out into a bed. The bed was horrible, but I slept better in that large chair bed than I did in my own. Every time I slept at home, I tossed and turned all night as I worried about Jack and wondered if he was ok. It was just better for my own mental health if I stayed and slept at the hospital.

The nurses were so sweet and adored Jack! They kept me company, made me laugh from time to time, hugged me when I needed to cry, and became my best friends! In the hospital, vitals are checked every 4 hours. At midnight, the nurse would come in to do Jack's vitals and she would stay and visit with me and then, again, at 4am. The nights were long and sleepless, but at least the company was good.

Every morning, at 4am, the nurse would come in to do vitals and also draw blood for Jack's labs. The one good thing about Jack's PICC line was that they no longer had to poke him to draw blood. Rather, they drew blood from the PICC line. Occasionally, the PICC line was "fussy" and wouldn't draw and they would have to call the I.V team to come and draw labs. When this happened, Jack would have to endure another poke and it was painful and sad for me to watch. I remember, on one particular morning, the PICC line was being "fussy" and the nurse was frustrated with it and didn't want to call I.V team. As I sat in the rocking chair, next to Jack's crib, watching and listening as they attempted to draw blood...I began to pray. I was having a miserable week and I was feeling alone, doubtful of any progress, and a little bit angry with God wondering why He hadn't healed Jack yet and frustrated that it was taking so long! I sat there, needed God to hear my prayer, know that He was listening, and needed to feel His love. As I began to pray, in my head, I asked that the PICC line would work and pleaded that Jack would not need to endure another poke. Instantly, before I even opened my eyes, I heard the nurse excitedly shout..."oh, oh, here it comes it's working!" At that moment, I felt a million pricklies tingle all over my body and knew my prayer had been answered! It was just what I needed...a simple reminder to know that He was there, He heard my prayer, and He was listening! The funny thing was, the nurses, at the time, were holding Jack almost upside-down and thought it was the position they were holding him in that allowed the blood to draw. The nurse even commented that they needed to make sure and chart how they had positioned him so the next nurse would know what to do. I just smiled and knew that wasn't the reason!

A few days later, Jack began running a very high fever. Evidently, children under 3 months of age are automatically admitted into the ER if they have a fever and Jack was running a fever of 101. I could tell that the nurse was nervous, but she was doing her best to assure me that there wasn't anything to worry about. As the day continued, the fever became worse. Again, Jack's oxygen levels decreased, his heart rate dropped, and the worry continued. By mid afternoon, multiple labs had been drawn and tests had been run to determine what was causing the fever. By the end of the day, Jack was really struggling to breathe and looked horrible. The doctor decided it would be best if we removed the PICC line. Sometimes these lines can cause a blood infection and they were concerned about that and removed the PICC. Sure enough, the PICC was the cause of the infection, they started him on antibiotics, and his fever dropped, and his breathing and heart rate went back to normal.

He was still unable to be fed by mouth and the doctor was concerned about his nutrition and was contemplating putting in a Broviac rather than a PICC. They both do the same thing, however, a Broviac is inserted directly into the chest and requires surgery to place. I was anti-broviac, but knew I didn't have a choice. Luckily, the team decided it would be best to re-insert another PICC line. I wasn't happy about that either and was worried about the pain of re-inserting that, but knew it was our only option to ensure that Jack was receiving nutrition.

I was still alone, no husband, no children, occasional visitors. I couldn't bear to watch them insert the PICC and sat outside the room, listened to Jack scream and cry and as I sat there and cried the nurse put her arm around my shoulder and fed me chocolate.

It was now 3 weeks post surgery (a total of 4 1/2 weeks in the hospital) and the doctor arrived to tell me that they were pulling Jack's Anderson Tube and we were going to attempt feeding him. He went on to tell me that sometimes these duodenal atresia's don't do what we want them to, and, although, his body hadn't given us any sign to pull the tube...we were pulling it anyway and hoping his body would handle the fluid on its own.

We began to feed Jack. I was ecstatic! I had been pumping for weeks and was thrilled to finally see all that milk being used. We started out very slow...only 1 teaspoon every 2 hours. He seemed to like it and did well throughout most of the day. Later on that evening, Jack started to vomit. At first, the nurse and doctor weren't concerned. This was expected and normal...especially when the stomach has been emptied and has had nothing in it for weeks. However, by the end of the next day, the vomiting had worsened. So much so that the nurse wouldn't allow me to feed him anymore until the doctor arrived. I remember telling the nurse that this reminded me of how it had been at home and I was concerned.

The following morning, the surgical nurse practitioner arrived to tell me that they were re-inserting the Anderson, stopping the feeds, and that the surgeon was ordering an upper GI in a couple of days. I remember looking at the nurse trying to keep a brave face, and, in my head, trying to tell myself not to cry, but the longer she stood there and spoke to me the tears began to swell up in my eyes and I couldn't hold it in any longer. I politely asked her to leave and told her "I was having a moment." She understood, closed the door and left.

I was devastated! All of these weeks and nothing seemed to be going right. I had to remind myself that it was a miracle that Jack was still alive and also reminded myself of all the little tiny miracles along the way that I needed to be grateful for. But, somehow, reminding myself of those little tiny miracles didn't seem to make things better and I was mad as hell!

I couldn't stop crying! I cried all. day. long! Every time the nurse entered the room she asked me if I was ok and I just nodded my head "no" and continued to cry. The funny thing about PCMC is that when a parent is not "ok" word spreads and before you know it everyone is knocking at your door to check on you and talk with you. The Social Worker paid me a visit--didn't help, the Child Life Specialists paid me a visit--I told them I didn't want to talk to them, so they left and then I felt bad for being so rude! The surgical nurse practitioner arrived, sat down, looked me in the eye and told me how brave she thought I was and how glad she was that I was Jack's mom. She hugged me and cried with me as I told her about all my worries and fears. Then, she told me what I needed to hear--Jack was going to live and he was going to be ok. Later that afternoon, the surgeon arrived, sat down, looked at me and said: "I've been waiting for this to happen." I said, "waiting for me to cry?" And, he said "Yes." I told him I cry all the time, usually, I just wait to cry after everyone leaves the room. He told me to let him do the worrying and that Jack was going to be fine. I cried and cried and cried all day...even into the next day. My eyes were so puffy I could hardly see and I requested that the nurse put a "do not disturb" sign outside my door. I wasn't in the mood for unexpected guests.

The next day, we took Jack down to the Radiology Department, once again, to have another Upper GI. The Radiologist couldn't see an opening and sent us back up to our room. Seconds later, the Surgeon arrived to tell me that he couldn't explain what had happened, but that there was another blockage and Jack needed surgery. In all 25 years of his career, he had never re-operated on a patient and was shocked and puzzled as to what had happened. The nurses quickly prepared Jack for surgery. I made a quick phone call to Devon, my parents, and my sister. I needed someone to sit with me. We rolled Jack down to the 2nd floor, I said my goodbyes, again, and walked to the waiting room by myself, sat down and waited for the surgery to be over. My sister made arrangements for her kids so she could be with me and we sat there and waited together.

Three and a half hours later, the surgery was over...phew! Our miracle Surgeon arrived to go over the procedure with me and told me that he wanted me to know that he prayed before operating on Jack and knew everything went well this time. He went on to explain that, somehow, the main artery that lays somewhere near the intestines had put pressure onto the area where he had previously operated and sealed it back up. Also, there was a second blockage that had gone unseen and needed to be opened. He assured me that Jack was "really open" and things should start flowing through normally and quicker this time.

I was so tired and so happy the surgery was over. This time around was much better! Jack did much better with the anesthetia, pain, breathing, and narcotics. Overall, it was a much better experience and now all we needed was for him to recover, start eating, and go home...