Feeding Makily.

So originally we had planned on sending Makily to summer school. She would get her PT,OT and speech while there. It was Mon & Tues from 8-1. Well the first several weeks things were crazy here, either I was sick, Makily was acting sick or something was happening.

Finally Allen just said let's do private therapy for the summer and give her the summer out of school.

So we went back to see Mrs. Elon last week. I just love her. Makily does too.

Which leads me to this decision that Allen and I had made a while back but that I have not really talked much about.

We had stopped orally feeding Makily at all.

It wasn't like she was taking large amounts by mouth. In fact it was minimal and ALWAYS a fight. I can probably count how many times in four years we had a feeding session where Makily was not screaming and fighting me through at least half of it. Makily's ability to eat by mouth (or lack thereof) has been a HUGE source of stress and sadness for me.

There are so many reasons why she does NOT want anything to do with food. The cards were stacked against her from the get go.

Here's a little history on Makily's struggle with eating.

Birth: Cleft palate with Pierre Robin Sequence, Severe hypotonia, delayed swallow with severe suck, swallow, breathe dis coordination.
(all that in a nutshell means she had a hole in the roof of her mouth, her jaw was pushed WAY far back and her tongue was balled up in the back of her throat obstructing her airway at times. She has low muscle tone and that INCLUDES the muscles that help coordinate eating and so her coordination was a mess)

Six weeks: Diagnosed with SEVERE GERD AND *trace aspiration with oral feeding.
(*to this day I do not think she truly had aspiration during that swallow study as THREE professionals reviewed the tape arguing (in front of me) over whether or not she actual aspirated...two said they didn't see it, the speech therapist SWORE she did over and over so the other two relented and said "well if she did it's just a trace amount) I was advised to STOP all oral feeds until we could get the reflux under control as Makily was at high risk for aspiration pneumonia from not only the *possible oral aspiration but the reflux too. She had lung damage from the meconium aspiration at birth and I as told pneumonia would likely land us back in the hospital...we had only been out of the NICU two weeks at this point. We were given medication to try and control the reflux to no avail.

Three months: Nissen fundoplication done to stop Severe reflux, pyloroplasty to help her stomach empty and G tube revision.

Four Months: Makily had intermittent dumping and retching syndrome

Six Months: G tube started leaking. Spent a month at Shands where she almost died (click here to read about that nightmare). G tube eventually removed after a total of six weeks leaking and an NJ tube was placed (which caused MAJOR issues with putting ANYTHING in Makily's mouth as she ALWAYS had that tube in the back of her throat) at APH Childrens.

Nine Months: Had speech eval, we were NOT cleared to orally feed yet by her doctors and were in the process of transferring EVERYTHING to APH Childrens. (I was sneaking some baby foods in though)

Ten Months: NJ tube removed, G tube replaced.

Eleven Months: FINALLY cleared to oral feed again *with caution*

One Year: We saw the craniofacial team and were PRAYING they would repair her cleft ASAP. It was causing major issues with eating because everything that went in her mouth came out her nose. This made Makily VERY mad. Due to all of Makily's airway issues, intubation problems and the fact that she has problems with anesthesia (going down and coming out of it), they insisted on NOT fixing her cleft until she was 15 months old....then they put it off until she was 18 months.

Makily's first year and a half was spent on and off in the hospital, having surgeries, pneumonia, breathing problems, retching and in pain. During that time orally eating was not a priority and was dangerous.

All that being said.....I logically know that with all those problems, even with a "typical" G tube child you will have oral aversions and feeding issues....so add in a severe genetic condition and things get really hard.

Even still I feel like I have failed Makily miserably and it makes me cry.........a lot.

Last December at the Christmas parade we had bought some boiled peanuts. I smushed one up and fed it to Makily. She loved it. Smiled and everything....I was even more proud when she swallowed it. Ten minutes later she started coughing and tiny smushed up pieces of peanut came out.

She didn't swallow it, it had just been sitting in the back of her throat the whole time.

That was a pivotal moment for me.

I decided I was not going to force her to do something her little body just can't seem to do. I stopped doing it. I stopped putting pressure on myself about it.

I gave up.

The guilt and relief of that is tremendous.

I do feel a terrible sense of failure. I remember when Makily got her G tube I swore that we wouldnt need it more than a month or so. Here it is four years later.....she still has it and deep down in my heart.....I know it's a permanent part of Makily.

So after talking with Elon last week she asked me what I would like to get out of therapy with Makily. Obviously communication is one thing and then I said this and after I said it, I lost it.

"I just want her to swallow".

Something so simple.

I just want my daughter who I love more than I love myself to learn how to swallow. It hit me like a ton of bricks when I thought about what a SIMPLE thing that is. I am not asking for the moon God. I just want my baby to eat.

Is it too much to ask? Is it?

So I am setting back out on the "feeding Makily" journey yet again.

I am going to try and not pressure myself or Makily about it. If she freaks out too much or gets too angry then I will stop until next time. I don't think she will ever be rid of the G tube but I would love for Makily to be able to enjoy something simple like a Popsicle or ice cream. She can't control her saliva and that is something I would love for her to be able to do...or at least do better than she does now.

So here is a little video of today's session with Elon. We focused on communication and play a lot today and Makily did a REAL FIRST!

She VERY purposefully waved bye bye when Elon asked her too. I couldn't believe that she did it AND that I was actually taping when she did!

Check it out:

Make an on-line slide show at www.OneTrueMedia.com

Change

I have been thinking so much about all the changes that have happened in my life since Makily was born. I had no idea the ways in which my life would change that Thursday night when I laid in bed laboring and trying to give birth to this kid.

My baby girl is starting Developmental Pre-K on Wednesday.

There have been many times in the past three years of my life that I NEVER thought we would make it here. I recall the awful four weeks Makily and I spent in Shands when she was six months old. That was one of the worst times of my life and I hated every moment of living in that nightmare day in and day out. It seemed like each day was worse than the last and I thought we would never leave that place. I could tell story after story of all the terrible things that went on in that hospital for us during that time. I will spare you with just this one. Basically to add some humor to this particular entry.

So during our long four weeks stay (and while I realize that four weeks to some ISN'T that long, IT IS considering all she went in for was a leaking G-tube) we were moved around from room to room to room. Sometimes in the middle of the night. One of our moves was particularly strange. Makily was kind of in the "step down" phase...not PICU worthy but also not stable enough to just be in "no man's land"....errrr uhmmmmm I mean the regular Peds floor. So we were put in "special care step down". It's a large room with TINY cubbies for each patient. When I say tiny I MEAN TINY. There literally was enough room for Makily's crib and my sleep chair butted RIGHT UP next to it. I called it our "hole". For some strange unknown reason they had a 23 year old woman in the bed next to us. She was a psych patient. I told you we had great luck. She talked CONSTANTLY. Most of what she said I could not understand, it was alot of gibberish most times. The nurse in there apologized to me almost hourly, which was a change because usually when there were mistakes made or inconveniences you were looked at as though you were a bother....ya know "how dare you complain that your six month old is in with a 23 year old crazy lady". We couldn't sleep, I couldn't think straight. I decided one night to get a audio tape of this woman. I couldn't resist and I knew no one would ever believe me that we were SERIOUSLY put in with a 23 year old psych patient. I mean we were on the PEDIATRIC SPECIAL CARE FLOOR.

Listen closely to the chatting in the background, remember this was ALL DAY every day!



Now on the other hand there were more days there that were not humorous in any way, although I tried desperately to find humor...somewhere. So many days I sat in the PICU with Makily, tubes down her throat, in her stomach and up her nose. I can still smell the hospital tape that was all over her, the soap I used every day and the sour smell of her little hand when her IV would blow and they would unwrap it and place another. I remember vividly the frustration of trying to hold a hypotonic baby with tubes, wires, and bandages all over her without pulling anything or hurting her. It just all seemed so unreal. I kept thinking "This only happens to other people........I guess I am one of them now".



Some memories just never seem to fade to gray, these memories for me are as vivid as the day they happened.

I remember this time because it was one of my darkest with Makily. It also a huge bonding period for her and I. My motherly instincts had FINALLY seemed to kick in the night they were letting her WRITHE in pain in the bed and did nothing. I felt like a part of me had awoken and that even though I didn't know what the future was going to be like for her or I, that I would be damned if they were gonna let my baby lie in bed in agony because they were too busy or simply didn't give a darn.

So I look back at where we started, where we have been and where we are going and I am in awe.

In awe of Makily.

She is not the child I dreamed of having,
in fact she isn't even the child I wanted when she was born.

She is the child I NEEDED, the child I was destined by God to have and the child that has changed me in ways I never imagined a child could.

She is the child that has taught me how to love UNCONDITIONALLY, to look past disabilities, to see that every special needs child is truly a miracle. It's all I can do NOT to approach a mother in the store pushing her child's wheelchair. I immediately feel a connection there, an unspoken one that you can truly only know if you walk that road.

I see kids with trach's, g tubes, feeding pumps, tight muscles, scars and oxygen and I am in awe of them too. These children have a gift of showing other's what is TRULY important in life without using the spoken word. What's sad is that so many people (me included at least the "me" before Makily) can't look beyond all the medical equipment, disabilities and struggles and see what is behind all of that.



These children have the strength of Goliath and the patience of Job. I know some adults would be frustrated with the day in and day out therapies and treatments. Many would just give up. Not these children, they continue to fight to survive because to many of them, it's all they have ever known. Makily does not know that eating is supposed to be easy for her. She doesn't realize that walking should have been something she started doing EASILY over two years ago. So she continues to work hard during therapy, standing on her two now chunky legs until they begin to shake because she is trying so damn hard.

I am in awe that after all she has struggled and suffered through that she still manages to laugh and giggle at the small things. That she can go from hysterically crying from a terribly painful procedure one minute to hugging and snuggling me while smiling the next. That she wants NOTHING from ANYONE except to be loved. That's all, she just wants to be loved.

I am not sure how much more perfect her spirit could be.

Money and material things will never matter to her, she won't complain to me when she is older that she MUST have the newest Polly Pocket or that she hates me because I won't get her the cell phone she is demanding. She will always be my baby.

Although her worldly body has failed her time and time again...and most likely will continue to, Makily will always be a perfect, innocent soul. What God has given her this world cannot ruin.

And for that, I am forever grateful.

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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