One of the many "first realizations"....

There were many times during Makily's first several months of life that I would all the sudden be struck with the severity and seriousness of her numerous conditions. I will admit I was in "la la" land for a while. I went through many mental "phases" if you will. It's a very confusing time because in a way you are mourning the loss of a child you NEVER had and that NEVER "was". I dreamed of this healthy baby that looked just like me, that breastfed like a champ, she met all her milestones a little early and she wrapped everyone around her little finger. Well Makily surely wraps EVERYONE around her little finger but as for the rest of those things she isn't that. Most parents slowly come to the realization that their child isn't going to live the life they had mapped out for them.....and it's okay because that is slowly revealed over time and hopefully you see a good life, and future for their child anyway. I had to accept that all at once with no certainty of Makily's future or even how long she would live. I also dealt with the fact that I was unable to bond with her. I mean I loved her but I didn't feel this "feeling" that I have for her now back then. There are so many reasons why I didn't bond with her right away and in this entry I will explain one of them. From the time Makily came home from the NICU at 4 weeks old until she was about 4 months old, she cried....and cried.....and cried....and never slept. At first I thought maybe I was just being impatient with her because I was a new mom but finally one night I timed her. She cried for 7 hours without stopping. That particular morning we went to see Dr. Pierre and I told her about the 7 hours of marathon crying. She immediately switched Makily's formula and said it was most likely colic. To say that Allen and I were tired is an understatement. We were EXHAUSTED. I began to think that Makily hated everyone, she was NEVER happy, all she did was cry. The main thing that was even more frustrating was the fact that when we tried to feed her.....she would cry the loudest and hardest. When you tube feed a baby if they push with their abdominal muscles (as a baby does when they cry) it will not let the food go down.....it pushes right back out of their stomach. Makily did this at almost EVERY SINGLE FEEDING. It was the worst at night and I remember sitting for an hour or more just trying to get 2 ounces of formula down....Allen was amazing during this time. He knew mentally I was DRAINED so there were many times he would just do the night times and I would do the day time. Nights were the worst. I would jokingly say at night that the "demon spawn" came out. 2 weeks after having Makily home we had to take her back to Shands pediatric clinic for a feeding evaluation. The speech therapist was very blunt and continuously said "she is sooo uncoordinated" while she was eating. She told me that Makily was aspirating very small amounts of formula when she ate by mouth and to stop oral feeds until we figure out a way to fix this. Then they realized that she had SEVERE reflux. They put 5 cc's of formula into her G tube and it went straight up her esophagus. So we were referred to a gastro doctor to get his opinion. I told Dr. Pierre about it all and she set up nursing care and a feeding pump. I was a little proud to take the nursing care but my mother and Allen insisted so I did it. The feeding pump slowly pumped Makily's feed into her tummy over an hours time so it wasn't such a fight to get her to eat....although she still cried much of the time. I remember saying "if Makily is awake....Makily is crying". Allen and I went to the gastro doctor to get his opinion on what we should do about the reflux. He was a very rude doctor. Anytime Allen spoke up he was very sharp to him and even at one point looked at Allen and said "was I talking to you"? He explained to us that the reason reflux in newborns is so serious is because they could reflux their entire feed in the night and drown in their own vomit before anything could be done. He said that it is sometimes fatal. With that he gave us 3 choices. The first choice made me very angry and I am still digusted that he even said this "You can do nothing about her reflux....and seeing as she has a genetic condition that would be understandable." IT WOULD BE UNDERSTANDABLE TO LET HER DROWN IN HER OWN VOMIT BECAUSE SHE HAS A GENETIC CONDITION!??!?! I don't think it sunk in what he meant when he said this to me......later on in the car I asked Allen and he confirmed what I thought the doctor had said....it would be okay to let Makily die....she wasnt "normal" they would "understand". The doctor went on to explain a Nissen which is a surgery where the top of the esophagus is "binded" if you will so you cannot reflux anymore and then last he explained a J tube. None of these choices sounded good to me but I was thinking that the Nissen would be our best bet. He never once mentioned medication to help with her reflux. 2 weeks later we went to see the surgeon that had originally put in Makily's G tube when she was 3 weeks old. I told her all that was happening with the feedings and reflux and she suggested we try some medication with her. I was happy because I would have preferred this over surgery. I told her what the gasto doctor had said and she kinda dismissed it and said "we don't do J tubes in little ones and I don't understand why he wouldn't try medication". So we put Makily on 2 reflux medications.....they did nothing. It was so frustrating...she still screamed and cried all the time. So back to the surgeon we went 3 weeks later. I told her that the reflux was no better, Makily still constantly screamed. She said the only option at this point was to do a Nissen. As much as I hated the fact that Makily would need another surgery I wanted her to be happy. I was starting to believe she would just cry forever so the thought that maybe this surgery would help her was exciting. The day before her surgery she had to have a gastric emptying study. This test just times your stomach to see how fast or slow it empties. We were in that room for 2 hours and none of the 2 ounces of formula that we put in her tummy had really moved. Makily's stomach took 5 hours to empty 2 ounces....the normal is about 30 minutes. So when I was feeding her every 2 hours....she was still full from the previous feed......which made her reflux even worse. No wonder she constantly screamed. Imagine someone forcing you to eat every 2 hours 24 hours a day and you are already over full. The next morning was surgery day. I was nervous. I kept Makily in the baby carrier on my chest the 2 hours prior to the surgery. I didn't want to put her down and this was a start of our bonding. They came and got Allen and I and took us to pre-op. I undressed Makily and put her in the little gown. She slept. Then a man came in wearing scrubs with a strong Russian accent. He asked Makily's medical history and before I had really finished he abruptly stopped me and asked when Makily had last had an echo of her heart. I told him in the NICU and that I had been told it was "normal". He said "no this baby has heart problems, I will not put her under without an echo". Then he stormed out. Allen and I just sat there dumbfounded....heart problem? what heart problem...she didn't have one, they told us her heart was fine. Soon after the surgeon came in and I was in a panic. I told her what we had been told and she said that the anesthesiologist was being overly dramatic. There wasn't a problem. At that point I wanted an echo and right then and there!!! She suggested maybe we put off the surgery for another time when I said "no she is miserable, I don't want her to wait any longer....can we just have an echo right now?" They sent a cardiologist in with a echo tech....they performed the echo right there at the bed with Makily sleeping in my arms. We basically were told that Makily "may or may not have a hole in her heart or something else but whatever it was, it wasn't worrisome." I was confused at this point. First she is fine, then she is not, then she might have something. I didn't understand why on earth they had not addressed all of this the day before. I had gone to the hospital and gave anesthesia all of Makily's history and had a "pre-op" with them. They never said one word about Makily's previous echo from the NICU. Then the discussion turned to intubation. Makily has a very difficult airway and the last time she was intubated it was very hard to get in place.....the surgeon ended up having to do it herself......she got it on the first try while the anesthesiologist had tried at least 5 or 6 times. As you can imagine when you have gone up and down a baby's throat that many times, there will be more swelling and breathing problems afterwards. They tried to convince me to let the anesthesiologist try a few times before letting the surgeon do it but I told them NO......why go up and down her throat 6 times when you can do it once? We ended up getting everything straightened out and Makily was FINALLY taken back to surgery. It was decided that she would have 2 and maybe 3 procedures during the surgery. The Nissen for reflux, they would do a pyloroplasty to help her stomach empty better and because her stomach would be moved around so much the G tube would have to be replaced.....maybe they could save it but it wasnt likely. The surgery was about 2 hours. Afterwards Makily looked pale but good considering. I was happy to see she was breathing on her own.....she had some oxygen on but was off the vent. She was in the PICU and I was going to stay with her that night. Allen had driven all night and came straight from work he hadnt slept so he was going to go home and sleep. My mom wanted to stay with Makily and I that night. I was touched she wanted to stay but didnt know where she would sleep. The PICU rooms are small and there was only one sleep chair. I told my mom this and she said to be quiet and not to worry about her. I said okay but I was concerned. My mom has a back injury from years ago. When she was my age she fell down a flight of stairs at work. She really hurt herself and her back, legs and ankles get worse every year. I knew that her staying up all night in a chair would leave her in alot of pain the next morning but she insisted on staying. I went to sleep at about 9 pm, Makily was resting, mom was watching TV and I was exhausted from the day and the fact that I hadn't really slept much the night before. Around 9:30 my mom woke me and said "Patricia look at Makily". Her voice sounded scared so I got up quickly. Makily was jerking to one side, her eyes were fixed on the ceiling and to the left. I starting saying her name and trying to get her to look at me but she didn't respond, just kept looking up and jerking. I looked at my mom and said "I think she is having a seizure", my mom said "so do I but I was afraid to say it". I called the nurse and she looked at Makily and said "she's not having a seizure, she's just in pain". I still do not agree with that nurse, Makily was a having a seizure if I ever saw one. She gave Makily some ativan and said it would help....Makily calmed a few minutes later and went to sleep. I laid back down and drifted back to sleep, I was so tired. About a half hour later I woke up to hearing monitors going off and my mom saying "Patricia wake up". I jumped up and took in what was happening in the room. There were about 6 doctors and nurses hovering over Makily, I looked at the monitor and her 02 sat said 40% (normal is about 95-100). Makily was a strange shade of blue. I didn't know what to do, I just stood there frozen while they worked on getting her oxygen back up. She slowly went back up to normal, they repositioned her and left oxygen by her face. They said it was because of the position she was lying in. I just sat there and couldn't believe that Makily had just gone in respiratory distress. My mom and I were both upset but neither one of us really knew what to say. We sat there talking and watching Makily breathe. A few minutes later we heard yelling in the hall way. It was a woman screaming something in Spanish. I slid our door open and when I looked out there was a young girl crying and a nurse escorting her out of the PICU....the screaming in Spanish was coming from the room she had been standing in front of. It continued for a while....a nurse came to our door and explained that the child down the hall had passed and she closed our door. We could still hear the woman screaming and crying. I just sat there so sad for this woman. I looked at my mom and said "I hate it here"...she said "me too"...I sat there for a while with my hands over my ears and I cried. My mom was sitting in her chair with her eyes closed and I could tell she was praying. It was then that it hit me that MY daughter, my 3 month old was in the same unit with a child that had just passed away. She was in an intensive care unit....she had just gone into respiratory distress.....this was all like a nightmare to me. It was yet another time I was convinced that this was not truly happening and that I would wake up and it would all be a dream. The situation I was in was something I NEVER dreamed I would go through....much less live through. I was just terribly sad...sad for this woman I didn't know who had just lost her son, sad for Makily that she was 3 months old and had constantly been in pain and felt horrible, sad for myself that I was sitting in the middle of this nightmare and hating and blaming myself for it. Most of all I was angry at God for doing this to Makily, to my family and to me. What had we done so wrong? Why wasn't he saving us from all of this sadness and grief? This was something I struggled with for a long time. It took me a while to realize that everything that was happening WAS in God's will, I have learned so much from my experiences with Makily....I took a Xanax and went to sleep. My mother stayed up all night watching Makily breathe......what would I do without my mother?


A collage I made of pics from her surgery...I know I am weird
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