Colin's Story- Part Four

We were all home, but life remained complicated. We had numerous appointments and Colin's feeding still proved to be a struggle. We had to thicken his feeds with rice cereal to help "weigh down" the food in his tummy. That made it more difficult for the acid to rise back in his throat. That also meant that breastfeeding was out and I had to pump at every feeding. I felt like I was constantly telling my kids or husband, "Hold on, I am feeding the baby." Or, "Hold on, I am pumping." The first appointment after the hospital stay was encouraging because he had gained weight. Not a lot, but a gain was a gain.

We then got another blow... my wonderful, feisty grandma departed this earth. I had received a message and she was concerned and checking in on us and the new baby. My family is not very touchy feely and looking back, I know that she knew somewhere in her being that she knew her time was drawing near. I called her back and she had just been admitted into the hospital. We had a brief, but loving conversation. She joked like she always does, but then left me with words that have repeated in my head over and over... "... just keep on nursing and loving that baby and he will be fine. I know it!" That is just what we did. Within days, she passed on and we were soon headed to California to memorialize that great woman. Once in California, Colin did not take to well to the change in environment. Not to mention, he was just circumcised. Thus, hunger strike. We struggled and struggled. He would cry in pain and his little eyes would pinch shut so tight that all you wanted to do was take that pain away from him. My dad wanted to take me home that night. It was an eight hour drive, but he said there was nothing more important at that point than that little baby. We pushed through the night and prayed a lot. The next morning, Colin was touched by an angel and started to eat again... slowly, but surely.

After we got home, the Pulminologist and the Pediatrician both recommended that we go see a gastrointerologist. Finally. I felt like the problems he was having were centered in the GI tract ant yet that was the last specialist that we would see. I scheduled the appointment, but it was a month and a half down the road. Our pediatrician called to give him the history and relayed her concerns for Colin and the gravity of the situation. The appointments gods smiled down on us and I got a phone call that they had an appointment for the next day. To their surprise, I immediately committed to the appointment regardless of possibly having to have two other kiddos in tow. I felt like we were going to receive some answers. After a long conversation and detailed account of Colin's problems, the GI Dr. said he was on the maximum amount of medications and that even though there was no conclusive evidence of a protein allergy, but he was going to treat it that way. He gave us a hypoallergenic formula to try and we would reconvene in a month. Let me tell you, the formula smelled like rotten chalk. I could only imagine what the stuff tasted like. Colin had no part of it. I sat in my bed at two o'clock in the morning bawling my eyes out... exhausted, spent, frustrated, and because what was supposed to help him was only working against him. I went back to the old formula. The next day we tried another hypoallergenic formula and he seemed to do ok. You might be saying to yourself, "Hypoallergenic formula? That sounds expensive." It is!!!

Colin went along eating the bare minimum. He gained, stayed the same and then lost. It was a never ending cycle. He would eat, you would hear an audible "clunk" sound in his stomach and he would pull off the bottle and scream. No matter how much he had eaten, he was finished at that point. Sometimes it was a full 2 ounces. Other times, it was a half ounce. More blood work was done to make sure that the original tests for a metabolic disorder were indeed accurate and negative. I finally asked to have a chromosome study done. The pediatrician was on the same page because that was the only thing that has not been ruled out yet. More blood work.

We went in on a Friday and he still had not gained despite all of our efforts. Our 9lbs 6oz baby at birth had went down to 8lbs 6oz and then to 8lbs 8oz and could not get past that. He never gained back his birth weight. He expended all of his energy on crying in pain and struggling to eat. The Dr. said she didn't want to me to worry over the weekend, but it was looking as if he was going to have to be admitted into the hospital again. She was going to talk to the GI and get back to me the following week. Nothing surprised me anymore. In fact, I was just ready for some answers. I got a call on Monday afternoon from the GI Dr. and he told me that Colin needed to be admitted. They needed to see if he consumed adequate calories, he would gain weight. He also prepared me that a feeding tube was a strong possibility. He said that it would be a minimum of a week stay. Shortly after his call, Dr. Lee called and made sure I was ready for all of this and made special arrangements to meet early the next morning at her office to do a direct admit. Even knowing and preparing myself for this, I was still in a state of shock. I called my husband and mom in tears. Part of those tears were sheer panic and fear, he other part was relief that we were going to get some answers and get Colin feeling better and thriving. At that point, I felt so robotic and numb. I just set myself into gear and started making all the arrangements that I needed for my family. I have a very difficult time asking for help. I did not want attention drawn to us and I did not want anyone pitying us. I needed to internalize the gravity of the situation and only shared the news with very few people. Luckily for me, those people allowed me to ask for help without realizing it. They just jumped in.

The next day or so is pretty much a blur. I just remember packing, reassuring my other two little ones, driving to the dr's office and praying a lot. I sat in the exam room as the dr. made the arrangements. The other pediatrician came in and told me she just needed to give me a hug and tell me what a great mom I am. I broke down into a blithering mess. Somehow she knew that I was feeling so inadequate and like a failure because I could not help my baby. Could. Not. Help. She and our pediatrician had spent several hours trying to figure out the enigma that is Colin. They discussed him over and over trying to see if there was a piece to the puzzle that they were missing. It really did my heart good to know that such caring individuals were taking care of him. Dr. Lee came back in and the three of us talked for quite some time about different pieces of his puzzle and they both assured me that we were on the right path and answers were coming.

I made my way to the hospital. It seemed like a familiar routine. We got to our room, or what I referred to as our "studio apartment." Unpacked and waited for the madness to begin. I cannot say enough about Sunrise Children's Hospital. Even though there were a few glitches, the staff and doctors were excellent. They were all so tender with Colin and so compassionate to me and my family. Along came the parade of nurses, doctors, specialists, residents, the repeated history over and over, the waiting. The intense, fearful waiting. I was there by his side every minute. I only left to make a trip to the family dining room down the hall to refill my Diet Pepsi or Dr. Pepper that they kept on tap (oh, the small things in life!) or to run to the cafeteria to grab a bite. Most of the time, the nurses would offer to bring me drinks and such. If I left longer than that, it was only when my mom or Jason was there to stay with him. The night nurse would come in the wee hours of the night and just take him and feed him so I could sleep. The first night that happened I hugged the nurse in tears (yes, there were a lot of tears during this period) because I was so exhausted and the thought of one extra hour of uninterrupted sleep just made me goofy. They knew that being there was one the most difficult things a parent had to go through and leaving my other kids at home was so taxing. They were appreciative of a parent that was there and that in turn made their job easier. It was a good partnership we had.

They monitored his feeding to the last ml. It was determined that he was not getting the caloric intake needed to thrive. At that point they inserted an ng tube (a feeding tube inserted through his nose, down his throat and into his tummy) to give him what he wouldn't eat by mouth.

The doctors proceeded to test every inch of his body. They did a MRI of his brain, an upper GI, EKG, blood work. I think the MRI was the absolute hardest test. I went through it myself just months earlier and I just about passed out. It was loud, claustrophobic and uncomfortable. They had to strap him down, support his head with blankets because he was so tiny, and tape it so it would not move. I impressed the technician with my super swaddling skills that they credited him staying so still and sleepy with. **bow, bow** They let me stand right next to him in the machine and reach my hand in and pat him when he stirred. He would settle right down. After about 20 long minutes, he was through. The technicians and radiologist were in awe at how calm Colin remained. I was just sick to my stomach waiting for the results. They came back within a couple of hours. One of the residents told me that it was negative. I gave him a puzzled look and they realized I had not met with the neurologist yet. I felt like a dummy, but I had to ask if negative was good or bad. He chuckled in a very kind way, put his hand on my shoulder and said, "It is good. Very good, Mrs. Baker!" I started to bawl. I profusely apologized for the stream of tears, but when I knew his brain was ok, I knew that I could probably handle anything else. He just stood there with me and then reminded me that I should probably call Jason and share the news. It was shortly after that the neurologist came in and confirmed the results. *SIGH OF RELIEF*

Colin sporting his ear muffs post MRI

Colin was doing very well with eating. He was only taking about 10-15 ml by the tube. He was taking the rest by bottle and was gaining weight. When he took the entire feeding by mouth, the tube got to come out. We were so encouraged by his progress. The on call GI came in the next day and decided to change his formula to a hypoallergenic formula to see if it cut down on the fussiness. At that point, I should have refused, but I deferred to his expertise. It was disastrous! Colin went from eating up to 55 ml per to 10-15ml per feeding. Looking back, I realize that this was actually a blessing in disguise. It was that turn of events that made us realize that a g-tube was inevitable. We could have waited longer, but that meant more time in the hospital. As soon as we decided it was time to strongly consider the g-tube. The surgeon came by and started discussing the process and procedure. He would have a fundoplication to remedy the acid reflux and have the Gastrostomy Tube (G-tube) placed. When he asked if there were any questions I answered, "when?"

The decision was not as easy. It was intimidating and daunting. You stand there and soak in all of the information, hold your breath until it is over and then let out a huge breath watered down with sobs. The thought of feeding our child through a tube made my head spin. I had imagined something far worse. I thought he would have this giant thing in his side that would make him immobile and unable to function like a normal child. The surgeon was so patient and kind and answered all the questions that were racing in my mind. Again, peace washed over us when we made the decision. We knew without a doubt that it was the right one and the right person was doing the surgery.

During all of this, the doctors were contemplating different things that could "be wrong." We had ruled out neurological and determined the anatomical reasons for his problems. We were just waiting for chromosome testing to come back. They were absolutely determined that he had Prader-Willi , the syndrome that Jason's brother has. We knew that his brother's syndrome was a result of a non-hereditary defect in a chromosome. We kept telling the doctors that, yet they were insistent that this was the case. Finally, one of the pediatricians came in (they are on a rotating schedule) and just asked me to give her Colin's history from start to finish. She had read everything, but wanted to hear from me. When I got to the part about Prader-Willi, she asked me why they thought this and if I thought it was the case. I stated my case in the negative and she said that she completely agreed. There were definitely different "symptoms" that are consistent with many syndromes, but there was so much that did not go in line with these. Although all the pediatricians were fantastic and did listen to all of the history that I had to give, I felt like my voice was finally being heard. (He does not have Prader-Willi)

After his system was "cleansed" and he fasted for numerous hours (which for a kid that hated to eat was even difficult) He was ready for surgery. They gave us a window of time and hoped it would be earlier. We still had to wait all day. Jason and I took turns pacing, picking at our food, cracking inappropriate jokes. I felt myself  holding Colin just a little tighter and a little closer. Jason would just stand and stroke his cheek or arm. The nurses came and went, the doctors all came by periodically to check in, wonderful messages of love, support and encouragement were received. Finally, the nurse came in and said it was time.

We headed down to the surgery waiting area. Everyone moved about their business and put wristbands on, checked vitals, reviewed charts. We waited. The anesthesiologist came in introduced himself and answered our questions. Then the Dr. Reyna came in. He knew that Jason had more questions. He was so kind and was not annoyed at all. After all the questions were asked and answers answered, he told us this, "Two of my triplets had to have surgery around the same age as Colin. I have been right where you are. I have waited in that waiting room. I know what you are going through. I will take care of him." I knew Colin was in the best hands. His assistant came to get Colin. We laid his tiny body on that huge gurney to be transported and he started to fuss. The assistant picked him up, cradled him in his arms and said that he was just going to carry him to the O.R. My heart melted and I blubbered out a thank you and we were lead to the waiting area to wait...