I got to sleep for 10 hours....straight!

Allen got home yesterday from work, he is on vacation for the next week..PRAISE THE LORD! Seriously though it is such a big help to have two pairs of hands here with Makily than just one. Instead of me having to put her down to draw her bath or grab whatever I need for her Allen can hold her...this reduces the amount of crying she does which reduces the leaking. Yes it's still leaking. I am more at ease though since I have help and I am not alone. I was starting to really go off the deep end again. Makily continues to INSIST on watching SpongeBob, Madagascar or Nemo while she is awake. For some reason this is the only thing that calms her sometimes so let's just say I know all of the season 2 Spongebob episodes by heart.
My parents came over yesterday. They brought over a can of formula and a pack of diapers. I told them they didnt have to do that but well that's just the way they are. I do not know how I would have made it through alot of all of this without them.
Anyway last night I went to bed about 4am and slept until 2 pm! Is that crazy or what!? I feel like a person again.....I even showered AND shaved last night! OH THE LITTLE THINGS EH!?
As far as my little angel she is still leaking and we are juggling feedings, calories, leaking, nutrition and it's so tiring for her and for us. I have discovered that if you lay her flat and feed her that way and keep her that way for about 30 mins after the feed she doesnt leak hardly at all. Problem is she has a cough from hell and severe reflux so she started gagging and retching once yesterday when we did that.
I am pretty sure we will have to go see the surgeon on Thursday....don't get me wrong, I am still believing that God can heal this and make it stop but it doesnt seem to be getting better. Keep praying for us.

Thought I would add a new video for today......this song is one I listen to when I am really stressed or when I am jogging (something my fat butt needs to do really bad and I plan on starting tomorrow!) While it is an angry song it helps me get my agression out!
ENJOY!
CLICK PLAY:

ONE STEP CLOSER (Linkin Park)

Video Code provided by VideoCodeZone.Com

Unanswered Prayers, Faith and Fate

So last night was not soo great....again. After feeding Makily via the pump for a few hours I discovered the button is still leaking. Not as bad as before but....it's leaking. I am frustrated and so tired. I spent alot of my evening tending to Makily, changing gauze on her tummy and scouring the internet for some parent that has gone through this and that has some MIRACLE solution to the leaky G tube issue. No miracle solution was found....
I had a little breakdown about all this last night. I had changed Makily's gauze for the 800th time and just lost it. I keep having visions of her with that tube in her nose again. GOD PLEASE NOT AGAIN. I ended up knealing(did I spell that right?) down next to her, laying hands on her button and BEGGING God to heal whatever is wrong and take away the pain Makily is dealing with because of the leaking. I prayed that whatever tissue or muscle is broken down to PLEASE build it back up again, fix whatever is wrong, make it right. I turned off the pump, put more ointment on her belly and vowed that it would be healed. I woke up this morning and the gauze was wet. I was mad, I don't understand, why can't it just be easy? Then I remind myself that THERE IS A REASON for EVERY SINGLE unsanswered prayer. I look back at the last 5 years of my life and I would be a complete FOOL not to see how everything in my life led up to this moment that I am sitting her typing this. One thing that proves this to me is this. When Allen and I were trying to get pregnant I prayed and begged God for a baby. I wanted a baby so bad I could taste it. Everywhere I went there were pregnant women, it consumed me. I won't even tell you the rage that I would feel in me when I saw a 15 year old walking around pregnant. Oh the times I would say "God why her and not me?" I had scheduled an appointment with the infertililty doctor for August of 2003, I would have some extensive testing that month and then in September we were planning on doing a artificial insemination cycle. One of the tests I would have had done in August was genetic testing. They would have found my genetic "flaw". I would have known and honestly I don't know if I would have continued trying to get pregnant naturally. I don't think I would have taken the chance. I got pregnant after 15 months of trying and found out on July 25, 2003 (Allen's birthday).....just 3 weeks before I would have had the genetic testing. Just 3 more weeks and I would have known......Makily is meant to be here and meant to be mine and Allen's daughter. I am glad that I didnt have the genetic testing and that I didnt know. I wouldnt have learned all that I have from the last 20 months of my life. I wouldnt be who I am now or where I am without her. Yes the lessons and things I have learned have come with a hefty price, one of which I struggle with....the fact that Makily has suffered so much and dealt with more pain in her short life than most adults ever do. Last night while I was praying over Makily I just kept saying "Lord please take away her pain, please Lord she's just a baby, please". I will never understand why she has to suffer or ANY child has to suffer for that matter. It just doesnt make sense to me. I do believe that God gives special children like Makily "a little extra" to be able to deal with what they go through. She has the sweetest spirit about her and even last night with all the leaking and pain she was dealing with she would calm with something as simple as me rocking her OR her SpongeBob Squarepants DVD's. I will admit there have been a few times the last several days that I havent been able to calm her and those are the times that scare me. I wonder what is happening and I wish to God during those times she could look at me and tell me what is hurting and what I could do to make it stop.
During all of our hospital stays my Dad gave me the idea to steal everything out of the room that was not tied down. At first I said "no way" but then he said "you are paying for all that stuff TAKE IT WITH YOU!" I guess it's not really stealing, more like taking what you are paying for that most people leave. I took things I didnt think I would ever need but I have used alot of the stuff. Some of it I have been able to send to other parents of special needs kids who don't have insurance and need certain supplies. I am not talking ventilators or anything here people, we're talking, tape, gauze, mouth swabs etc etc etc LOLOL. I didnt want everyone to start thinking I was a klepto! One thing I took last year was a tube of lidocaine viscous (numbing gel). They had used it on Makily's tummy once last year at Shands and then never used it again but left it in the room. I took it with me when we left and tonight I mixed it with bactroban and put it on her tummy. It made me feed good that I was able to numb that area at least a little.
Anyway so Dr. Pierre called me this morning to find out how last night went. I love Dr. Pierre. She left a message because when she called Makily and I both had FINALLY zonked out and so when I got up I called her back. I told her about the leaking. She was upset too and suggested I call the surgeon. I did and their answer was simply "It's going to leak, just put gauze around it" . I asked the nurse how long I should expect the leaking and she said if it's not stopped by next Wednesday(1 week) to call them and she will get us in with the surgeon...he is there on Thursdays. She said that when you go to a size up that usually the buttons leak but stop a few days later. It made me feel a little better but on the other hand I HAVE BEEN HERE before and so I am cautiously optimistic that it is going to stop on it's own. BUT I AM PRAYING THAT IT DOES.

*update* Do ya ever think that.....

God is watching you struggle sometimes?

I swear last night I lost track of how many times I looked up and said "can I get a break here?" First of all Makily's leaking just continued all night, I am glad to say I stayed on top of it and that she did sleep some, as for me I was up all night long. If it werent for caffiene I would be a zombie. About 7am this morning she had a SCREECHING crying fit. It really was starting to scare me. I havent seen her freak out and scream like that in a very long time. She was kicking and squirming and flailing her arms all over. It was worse if I put her down. She at one point was crying so hard her little arms and legs were shaking. It was really upsetting me. I was worried because she hadnt pooped all day and kept thinking things like "bowel obstruction". HeR feeding schedule was all messed up and since she has all the belly problems already I was really starting to worry. I got up and rinsed her off in the tub to get all the blood and goo off of her. I went to wrap her in the towel and it got all twisted and so I am fighting with the towel and her and I looked up and said "CAN YA HELP ME OUT HERE GOD!" Makily is VERY impatient so when I am doing something she wants it done and done right the first time (yes I am not kidding, can you imagine having a 19 lb boss?). So since I am a fumbling idiot with the towel and not doing my job efficiently enough for my tiny supervisor.......the screaming begins. I am wanting to scream too because now that she is crying......yes you guessed it, the button starts leaking AGAIN!!!!!! I get her wrapped after much protest, sit on the couch and snuggle her, she calms THANK YOU GOD! She was still fussy but not the writhing fit she had been earlier. I put on "Madagascar" and she immediately gets quiet and intently watches it. This kid is so hard to figure out. Just minutes before she was so hysterical you would have thought I was peeling her skin off. Not long after I decide I need to feed her. I have been bolus feeding her. I attach a tube to her button and at the end of a tube I put a syringe where the formula is poured in. The tube has 2 ports. One for medication...the other for food. Now since we have had all the leaking G tube mess, I had gone through ALL of Makilys blankets. So last night I did an entire load of laundry that was just her blankets, towels and her bouncy seat cover. I have her all clean and happy, watching TV with nice, clean, fresh blanket and CLEAN bouncy seat cover when WOULDNT YA KNOW as I am feeding her the med. port pops open and formula goes everywhere!!! Yes I again looked up and this time said "ARE YOU KIDDING ME!?" Thankfully I caught it fast enough that I got my thumb over the med port and somehow one handedly closed it back. I continue the feeding and with the last 1/2 ounce the med port pops back open, this time spilling on Makily, the bouncy seat, blanket and of course me! Another glare upwards and I scream "THANKS ALOT!!" I get Makily all cleaned up and settled, I left her in the bouncy, just dried everything the best I could. I was afraid if I messed with her too much she would start freaking out again. I know I joke about God "watching me struggle" and how I look up and whine/moan but I know that God IS with Makily and I. I think when I get frustrated though I just expect him to come down and make it all "better" and that is not the way life is. LIFE IS NOT EASY for anyone and so I need to just accept that. There is a reason FOR EVERY SINGLE STRUGGLE you have in your life and in mine. I am learning that.......it's sometimes hard to realize though when you are in the "thick" of things.
Allen came home for his 10 hour break today and not long after the LONG AWAITED new button arrived. I was so happy and left a message for Dr. Pierre to call me and let me know when to meet her at the office to have her put it in. I laid down to try and get a few minutes of rest when I hear Allen say "Oh gross, I HAVE TO TAKE CARE OF THIS RIGHT NOW!!!" I sit straight up and say "is she leaking again, where is the gauze, what's happening" in the sleepiest, half awake voice you can imagine. He says "no look at her!!!!!" Well I look at my angelic little baby, my sweet girl who when she is not ill is the BEST BEHAVED BABY ever, who's smile will light up the entire room and laugh gives me warm fuzzies inside.....and she is C-O-V-E-R-E-D in POOP. She managed to get one side of her diaper open and was "playing" in her doo doo. She had pooped smeared on her face, legs, feet, hands! THE SMELL WAS HORRENDOUS but I have to admit there was a little part of me that was so very happy to see that poop.....obviously no bowel obstruction! hahahahahahaha
We immediately put her in the tub and Daddy cleaned her up, what a great guy eh? Needless to say I will be washing the bouncy seat cover again today! Dr. Pierre called a few minutes later and said to meet her at the office at 1pm. So we get Makily dressed, we decide NOT to do her hair as when you brush her hair she cries.....which will cause the dang button to leak. So I go in a pair of jeans, my unwashed hair in a pony tail, no makeup and Makily in a sleeper looking like her hair hadnt been brushed in ages...when it really has only been about 12 hours! She has UNMANAGABLE HAIR! I use conditioner AND infusium on it! Allen was the only one of us that looked decent but I was so tired I didnt care. We get to Dr. Pierre's office and Makily is sleeping like a log. We get things set up, I am on the table with Makily. When Dr. P took the button out Makily woke up and started crying. Dr. P had to cauterize more than I thought she would have to because the skin was breaking down so bad. My poor angel screamed and shook the whole time.....I know it had to hurt like hell. I kept closing my eyes and asking God to make it not hurt so bad....it really sucked. Allen was sitting in the chair with his head down......I wonder if he was praying the same thing. It felt like it took an hour but in reality probably all of about 15 mins. We put some ointment on it, the new button in and now it seems things are as good as new. She fussed for a while but when I walked out of the office she seemed to start to calm and then fell asleep in the car on the way home. I think everything will be fine now. I just hate that she had to go through that and deal with the pain. Makes my heart hurt and I did cry a little when we got in the car. No child should have to deal with this kind of thing. I will never understand it, I guess it's not for me to understand though, God is trying to teach me something.......and I feel like I am learning more every day.

NOT A GOOD DAY...OR NIGHT...

Well Makily's G tube has been leaking on and off for a week now and it got really bad last night. I hate it when the darn thing leaks because I swear I have post traumatic stress from all that happened last year. (that entry is on 12-10-2005). She also has developed a chest cold so I took her to Dr. Pierre's office. I wish things could just be easy for us. None of the home health companies in Ocala has the bigger sized replacement button Makily needs in stock so we have to wait until tomorrow when they overnight it to us to get it. GRRRRRRRRRRRR, I hate that. Anyway Makily and I were up all night and most of today. She is doing well right now (Knock on wood) and I gave her 4 oz about an hour ago and THANKFULLY it didnt leak out...first time in 2 days. I am just praying we can get through tonight and tomorrow.
I am bummed and irritated. When I was in the waiting room at the peds office I noticed these two little boys playing with some toys and being rambunctious(did I spell that right?). The mom kept telling the one boy to be quiet and sit down and it was all I could do not to say NO LET HIM PLAY AND BE A KID, be thankful he is playing and loud because I would do almost anything for that! I wish to God Makily could get up and run around like that....I wish she could scream and yell MAMMA to the top of her lungs when she is happy or sick or just yelling to hear her own voice. I long to watch her run and play and Lord knows what I wouldnt do to hear her say "mamma, i love you". I try not to dwell on these thoughts for too long because I do get really upset about it. It's just hard when she is having problems not to look at the "bad side" of things. I told my mom today "it's bad enough she has to have a tube in her tummy to eat but good Lord can we at least have it work and not leak all over her? Is that too much to ask?"
On top of poor Makily having all these issues at once, I have a wisdom tooth coming in where there is NO ROOM in my mouth AND a "cold sore" inside of my mouth. WHAT FUN. I get cold sores in my mouth when I am stressed so well now I have one. Hooray for me.
That's all the fun and excitement from here in the Caldwell house for tonight.

I laughed at myself today......

I was driving in the car. Makily was in the backseat sleeping and the radio was on. My newest favorite singer is Kelly Clarkson. I love her new album and the song "Because of you" is just awesome. I don't really know why I like it that much because my life doesnt really relate to that particular song. I guess because it's such a raw, emotional song and I usually walk around an emotional mess most of the time?? Well Elizabeth (my sis) burned the CD for me and I had been listening to it non-stop. Allen stole it and took it on the road with him....he likes her too now I guess! So I have been without my Kelly CD. So the radio is on and MY SONG CAME ON...."Because of you"...I get excited so I start belting it out. By the time it got to the chorus I was feeling really proud because I KNOW ALL THE WORDS and I am tearing it up! I cannott sing...I take that back, I can sing just not well. This is one thing that I will always envy about my sister Deborah. She can sing better than most of the so called "stars" out there. My parents have joked that I can dance, but not sing...Deborah can sing but NOT DANCE (2 LEFT FEET SHE HAS....oh the memories I have of her and I in ballet class at the ripe old age of 6, usually during stretches you could hear Deborah screaming from a mile away...and I am not kidding about that either...ask anyone in the family!) I do have one opera note I can belt out that sounds good but that's it....just the one note is all. In fact every now and then my mom will call and request that I sing "my note" for her. I like to reserve using that note for when I call and sing HAPPY BIRTHDAY to family or friends on the phone. Back to my story.....So I am in the car and just SINGING it up WITH FEELING! I get to the part that goes "Because of you I'm ashamed of my life, because it's empty" and my voice did this strange HORRENDOUS cracking sound....I immediately start laughing but quickly compose myself because I wanted to finish my song....Then the next note that came out of my mouth was just as bad as the last one that sent me into hysterics so I start laughing again.....I can't compose myself now, I am laughing at the horrible singer I am and at the fact that I can't even stand the sound of my own voice....ya know it's bad when you are laughing at YOURSELF...just then I look to my left and there is a guy in the car next to me. He's staring at me with a weird grin on his face. I realize, he has been watching my performance and my laughing at myself. Our eyes meet and we both start laughing.
Glad I could make his night! LOLOL
Here's the song and video just in case you havent heard it, listen and imagine me BELTING this one out in my car! LOL:

CLICK PLAY:

BECAUSE OF YOU (Kelly Clarkson)

Video Code provided by VideoCodeZone.Com

Dumping, Retching, G tubes, Mic-Key buttons and a Partridge In A Pear Tree....

*This details what happened the night we almost lost Makily, including the overdose and susequent MONTH LONG hospital stay......to see pictures of Makily's stoma, the moldy shower curtains and hear more stories about problems at Shands go to this entry.**


I was going through pictures of Makily from last year this time, admiring how much she has grown and how far she has come....but something continuously caught my eye that I couldn't ignore.....she had a tube in her nose. All of her Christmas pictures from HER FIRST CHRISTMAS are of her BEAUTIFUL, sweet face with an ugly yellow tube going up her nose. I grew to hate that nasty yellow tube. That tube reminds me of the worst month of my life....a month that began with one awful night in September......when we almost lost Makily....and I almost lost my mind.
It all started when I had noticed a little brown ucky stuff coming from the gauze I put around Makily's Mic-Key Button. Oh I guess I should warn you some of this entry will be gross and have some nasty descriptions.
When you have surgery to place a G tube they put in this long tube that just kinda hangs out. Then after 6 weeks they YANK (and yes I said YANK) the long tube out and put in a tiny little Mic-Key button. It's kinda like a little valve to the stomach that can be opened and closed and it sits almost flush to the skin. Much easier than the long tube hanging down and getting caught on everything. The brown stuff coming from around Makily's button didn't concern me too much because well it always had some type of discharge. I guess if I had to describe "normal G tube goo", I would say it's like eye boogers except it is around a button..hahahahahhahaaa....I told you this would be a gross entry. I just dismissed it and prayed that it would go away. Later that week Allen and I went to church. If Makily was fussy myself or Allen would go and walk with her in the lobby of the church. Makily started to get upset so this particular time Allen went out with her. Soon after an usher came in and tapped me on the shoulder saying that my husband needed me. I walked out and Allen was upset....Makily was screaming and her little white dress had blood all over it and was wet. I ran into the church and got my mom and dad. We were rushing out when one of the ushers stopped us, they wanted to pray for Makily. They stopped the church service that second and our Pastor, all the elders and deacons in the church came to us in the lobby, surrounded Makily, anointed her with oil and prayed. I was bawling. We got into the car and rushed to Shands. When we arrived at the ER they told us to have a seat....we waited for a while and they finally took us to the back. It was then I noticed a bright yellowish/green liquid leaking out from underneath Makily's button in addition to the bleeding. After giving Makily's medical history about 800 times the surgeons on call came into the room. They looked at Makily's tummy and decided to take out the button and see what they see. They took it out and the surgeon explained that there was a stitch left over from surgery that *USUALLY* comes out when the long tube is removed....but not in Makily's case...for some reason it had stayed in. He explained that it was working it's way out and causing all the problems. He removed the stitch and cauterized the area then replaced her button. He said the green fluid was bile (which was extremely acidic) and was expected since Makily had a pyloroplasty 2 months ago, which can allow bile easily flush up into the stomach. We fed Makily there and things seemed okay. I explained to him that Makily had an appointment with a gastro doctor the next morning. She had been having what's called DUMPING AND RETCHING SYNDROME. Dumping happens as a side effect of the pyloroplasty she had in July. Sometimes after having this procedure the pyloric muscle (opening from the stomach into the intestines) can open up too much thus "dumping" the entire contents into the intestine at once. This causes extreme pain, sweating, increased heart rate, and terrible diarrhea. Makily had this at least once or twice a day. She also retched. This was an awful thing to watch. Retching happens as a side effect of the Nissen she ALSO had in July. Since the Nissen binds the top of your esophagus to prevent reflux it also prevents vomiting. At times if Makily's stomach wasn't emptying like it should she would get too full and try to vomit.....so she would retch, Makily would retch so hard her face would turn blood run and she would try so hard to puke, this would soon be followed by hysterical crying. It was so horrible. We had an appt with the gastro doctor the next morning to discuss these issues and if the button was still a problem we would talk to him about it the next day. We came home and it wasn't long before the leaking started up again. I was ready to pull my hair out. The leaking was making the area around Makily's button VERY RED, RAW AND IRRITATED. Allen and I kept changing the gauze around it and trying to keep Makily happy. The more she cried the more stomach acid, bile and blood she was pushing out onto the raw skin around her button. It was an awful cycle. This went on ALL NIGHT LONG....it worsened when we fed her. Allen again was my rock and was up with her most of the night. He is such a strong man and awesome father. We went to the gastro doctor the next day. We explained all of our problems to him, the incident at the ER the day before, how it had continued all night and even showed him the cloth diaper we used to catch the bloody, green liquid coming from Makily's tummy. He said with all the issues she was having at once he would like to admit her to the hospital to try and solve things that way. It was too much to try to deal with as an outpatient. We agreed, I did have a few stipulations. I did not want Makily in a room with several other children that had ANYTHING that was contagious. I had gone through this before at Shands on the pediatric floor and did NOT want to deal with it again. He told me he would take care of everything. We were admitted to the hospital and immediately I was irritated because we were put in a room that can fit up to 4 kids. There was only 2 others in the room and one was being discharged. I was trying to be nice so I didnt say anything, I figured the others in the room had nothing to be concerned about or that Makily could catch. The nurse came in and I told her Makily needed a Kangaroo pump for her feedings and that I had no "attachment tube" with me because I had we didn't know we were going to be admitted to the hospital when we went to the doctor that morning. She said she would be sure and get it for us. A few doctors came in and I gave Makily's medical history another 800 times (doesn't anyone read the chart anymore?). Allen had gone home to get some sleep, he had to leave for work that night and he was very tired. The other mom in the room came over to us and started talking....she was VERY young. She asked how old Makily was and why we were there (yet another reason I didn't want to be in a room with others). I just said Makily had some tummy problems. She asked how old I was and I told her I was 27. She asked me why I waited until I was so old to have a baby. I was a little offended and confused. I told her I waited until I was married and had a home before I got pregnant. She told me that she should have done the same as she was only 18, had no husband or boyfriend and a sick baby all by herself. She explained to me that her baby had meningitis and that SHE had given it to HIM. I almost exploded right there. She explained that she had gotten it from riding the bus system and that she must have touched something that someone else had touched that had it. I was so mad that my baby was in a room with this woman and her baby. This was the second time I had this type of thing happen to me at Shands on their pediatric floor and I was very angry. The last time I had made a complete jerk of myself and demanded a different room. I figured I would be nice this time (never again). I went to Makily's nurse and explained my fears and she came in later and very kindly told the girl not to go NEAR me or Makily as she may spread germs. I was still VERY ANGRY, what kind of CHILDRENS HOSPITAL puts a patient with meningitis in with a "healthy" child? After 3 hours they finally got Makily's feeding pump and started to feed her. I had drifted off to sleep it was about 7:30 pm...I awoke and Makily was crying. She was covered in green bile and blood. I called the nurse and she called the doctors. They came in and tried to examine her but she was in so much pain she wouldn't be still. They ordered a shot of Morphine and said they would come back once it had taken affect. At about 8:30 Makily was given a shot of Morphine in her right thigh....she never calmed...the doctors came back and looked at her....ordered another shot of Morphine and said to put Maalox on the area around her button. (Maalox neutralizes the acids so they wouldn't burn her skin so much) She was given a second shot of Morphine in her left thigh and the nurse and I attempted to apply Maalox to her tummy. The more Makily cried the more bile and stomach acid would pump out from underneath the button and the Maalox would just wash right away. Makily slowly started to calm down and was calm for a total of 20 minutes. The on call gastro doctor came in during that time and said that we should continue feeding Makily through the button and applying the Maalox. If the leaking continued he would talk about giving her an IV. I explained I did NOT want to keep poking Makily to give her pain meds, she had already had 2 shots now. He said that he didn't feel she needed an IV at this point. They continued feeding Makily through the button and the leaking worsened, all the while Makily is screaming and crying in pain. They had used the wrong tube attachment with the feeding pump because they didn't have the appropriate one in the hospital. Because it was the wrong tube, it pulled on the button, which pulled on the skin to the opening in her stomach and it made things worse. He came back in an hour later because Makily was still screaming and the leaking had worsened. He said to stop the feedings through the button and he ordered IV fluids. I was relieved because I felt that feeding her through the button made the leaking worse. The nurses got the IV in place which just upset Makily even more. The entire time they were placing the IV green, acidic bile was gushing from under her button because she was crying so hard. The skin around her button at this point was just very red, raw and sloffing off in places. I can only imagine how painful it had to have been for her. After the IV was in place I spoke with the nurse and said that I didn't think the Morphine was working that Makily hadn't seemed to have gotten much relief from it. She agreed. I told her I felt the Maalox was a joke because before we could even get it applied it was washed away from all the stuff pumping out of Makily's tummy. I asked her to have the doctors come back and talk to me. They came back in and I told them that Makily had not stopped crying with the exception of about 20 minutes....it was about midnight at this point. They said they would give her some Morphine through the IV. I protested because I felt that it hadn't worked before, why give it to her again? They explained that since it would go through the IV this time it would work faster. I knew that meds through an IV work faster and more efficiently so I agreed. Makily was given a dose of Morphine through her IV. The screaming continued and the leaking and bleeding just worsened. I just held her while she cried and walked up and down the halls with her. I had bile, blood and all kinds of stuff all over me and her. I am sure it was an ugly site. I waited a half an hour for the Morphine to work and it didn't. So I asked the nurse to call the doctors back again. Remember this whole time Makily is screaming and the skin on her stomach is just sloffing off. I have to add this side note. The doctors ordering the Morphine and Maalox were the residents on call that night. One was a male and the other a female. This time the female resident came in alone to talk to me. Makily was crying and writhing in the bed and I was a mess at this point. I told her that Makily was IN MISERY and to please help her. She said she wanted to give her more Morphine. I honestly envisioned myself slapping this woman. Instead I said "don't you think we should try something else since the Morphine didn't work the FIRST 3 TIMES?" She said she wasn't sure what else she could give her and she would research it and come back to let me know. 45 minutes passed and I was angry Makily was still writhing and crying....I searched down my nurse and asked what was going on. She went to check and came back and showed me the order. It was for more Morphine. I was livid. The doctor didn't even have the guts to come and tell me what she was giving Makily, she just ordered ANOTHER dose of Morphine that had not worked the first 3 times and left. The nurse looked at me and said "she isn't going to order anything else". I finally gave in and said "okay but this is it, if this does not work...heads are gonna roll". They gave Makily ANOTHER dose of Morphine through her IV. I sat in the chair with her in my arms...crying with her. I was exhausted, angry and I felt so damn alone. Nurses and aids had been walking in and out of that room all night, seeing the pitifullness that was Makily and I and NOT ONE stopped to ask if they could help me. I had to hunt Makily's nurse down to get help. I didn't know what to do...I felt like I could have done better helping her at home. They were not helping her, they were letting her suffer and ignoring my pleas to give her something to make her stop hurting. Her stomach was a TERRIBLE mess and getting worse by the moment...Makily's breathing was getting rough because she HAD been screaming for about 5 hours and was exhausted to say the least. Makily is the kind of kid that will cry until you fix whatever is hurting....no one was fixing it, so she just kept crying thus causing MORE AND MORE stomach acid and bile to pump out of the opening, which then would cause the area to bleed and the skin to break down even further. It was a vicious cycle that I felt would have no end. 30 minutes after the last dose of Morphine I went to the desk and DEMANDED the doctors to come and see Makily again....I told the girls at the desk it was ridiculous that Makily had suffered like she had all night. I sat back in the room and cried again with Makily, an aide walked in and asked me if I wanted to go downstairs to get a coke and said she would stay with Makily for me. I told her thank you but I wanted to see the doctors. She said if I needed her later to let her know. That was the only time someone was kind to me on that pediatric floor. The doctors came in...both the male and female. I told the male resident that Makily had been screaming her head off and had never stopped but that SHE (and I pointed and gave the female resident a dirty look) wouldnt give her anything else but MORPHINE. He defended his counterpart by saying she had gone up on the dose and that was "appropriate". I said "yeah if it would have worked the first 3 times!!!!!" He then told me he could "totally snow Makily if that is what I was asking". I just looked at him and said "no sir, I don't want you to TOTALLY SNOW my 6 month old, I want you to take her pain away, look at her stomach!!!" Then he suggested ANOTHER DOSE OF MORPHINE. I told him absolutely NOT! He then said he would research what to give and come back...he also asked about her breathing, I explained that it was getting rough because she had been in pain for 6 hours and crying. If they could take away her pain her breathing would resolve. I have seen it happen with her many times before. He ordered an oxygen monitor and went to go figure out what to give her. He came back and asked if Makily had ever had Fentanyl before. She had when she was in the NICU and she hadnt had a problem with it. He said that is what he would give to her. They gave her the Fentanyl through the IV(we were still waiting on the oxygen monitor). Makily's entire body began to relax. She slowly calmed down within 2-3 minutes, her eyes closed and she seemed to go to sleep. I was so happy for a short moment. Finally my baby was getting some relief..PRAISE GOD FINALLY....Then all the sudden she opened her eyes and her pupils were dilated...she began flailing and bucking in the bed and her breathing sounded awful. Makily does this really cute thing with her mouth. It's a sucking motion that you will see some babies do in their sleep. Makily did this alot of the time...it's a comforting, calming thing for her. I noticed she started doing this VERY FAST, I had never seen her do it like that, she was panicking. I kept saying WHAT IS WRONG, why is she doing that. The doctors just stood by watching. They put oxygen on her face (she hates ANYTHING on her face) and she continued to kick and breathing was becoming more labored. Finally the man with the oxygen monitor came in...he was trying to get a reading but since Makily wouldn't be still it wasn't picking up. She was freaking out like I have never seen her do before. When the monitor finally picked up her heart rate was over 220 and her oxygen saturation was about 85% with oxygen on her face. I then began to panic. I then notice there are about 3 nurses standing around me and both doctors are watching everything unfold. I kept saying "why is she doing this, she had Fentanyl before and was fine". Then the female doctor explained that in the NICU Makily had most likely had it on a slow drip for sedation but now she was just given one dose all at once and so she was reacting differently to it. THANKS FOR TELLING ME THAT NOW!!! The male resident then told me that he wanted to transfer Makily to the PICU/SCU to be "monitored". I said fine. Suddenly all the nurses were up my behind getting Makily ready to be moved. Everything was moving so fast and I couldnt seem to catch my breath, why is the happening? We got up to the PICU and the doctors and nurses were moving very quickly and I began to realize how bad things had gotten. I just stood there frozen and felt like I wasnt truly there. I felt as if I was watching someone else's life fall apart on TV. They asked me to step out for a minute until they get Makily "settled". I went right outside the PICU doors and called Allen, he was just getting ready to leave for work...it was about 3am. I told him Makily was in the PICU and couldnt breathe. He said he was on his way. I hung up and called my parents and I don't even recall what I said I just remember my mother saying "we'll be there in a few minutes". I hung up the phone, sat down on the floor in the hall...alone and cried. The doctor came out and explained the situation to me. Makily's heart rate was soaring....she was fighting, crying and struggling to breathe. She wouldnt relax no matter what they did. My sweet, hard headed, fiesty baby girl was doing her damnest to continue breathing. He asked how long Makily had been crying and hurting. I told him since about 8 pm. He then explained that he was afraid if she continued to struggle like this that she would finally give up and either stop breathing altogether OR have a heart attack. I just sat there staring at him with his blood shot eyes. I remember the words "heart attack" ringing in my ears over and over and thinking "how can a 6 month old have a heart attack?" The room suddenly felt like it was closing in on me when he said what they needed to do. He wanted to intubate her and put her on a ventilator.....How am I in this situation I thought, she was breathing fine this morning....it was just a leaky G tube and some tummy problems. How did it come to this? Should I listen to this man? I had listened to the idiot resident doctors on the pediatric floor...that's what got me into this nightmare of a mess. I stared into his eyes and sensed a kindness that was comforting. I told him I wanted to hold Makily and to try and calm her. That I felt if I could just comfort her...she would calm down and her breathing would become easier and her heart rate would slow. I walked back into the room and Makily was still struggling and fighting. I tried but Makily was beyond comforting. She was so tired and out of it. Her stomach was a disaster and she was struggling so hard to get air. I quickly relented and agreed to let them intubate her. I made sure to explain that Makily was terribly hard to intubate, and to please be prepared. I walked out into the hallway and Allen was there. I then had to explain to him what was happening. It had all happened so fast that I don't think I truly took in everything until later on. My parents got there soon after Allen and I repeated the story to them. The nurse came out and said we could go in and see her. They had successfully intubated Makily....after several failed attempts. We walked in the room and I suddenly felt nauseaus. She had the tube down her throat breathing for her...she was still awake. She opened her big, beautiful, blue eyes, looked up at me and opened her mouth to cry....blood poured out of her mouth and no sound came out. I just started crying....I tried to stay right by her but the sight of her so sick, with that damn tube down her throat breathing for her again was too much for me to take. It was like we were back in the NICU all over again, werent we past this I thought? My heart was breaking. This was my fault. I had made the wrong decision. I shouldnt have let them give her all that Morphine. Maybe I shouldnt have let them give her the Fentanyl. Maybe if I would have tried to calm her down longer I could have and we could have avoided all this.....I was beside myself. I sat down and just cried. My father was VERY angry. You see my parents had time to process what had happened. I still hadnt realized that Makily had basically been overdosed on narcotics by 2 inexperienced residents. I was blaming myself though and not in reality. My dad asked the nurse who had intubated Makily and she told him. I remember hearing the anger and sadness in my dad's voice when he said "well he's a damn fool, a damn fool, look at all the blood in that baby's mouth". I asked my dad to stop. Not because he wasnt right but because I was about to loose it completely. I was about to loose myself and I didnt know what I would do. I was seeing visions of myself jumping out the window of that room. I kept trying to stand up by Makily's bed and comfort her but I couldnt look at her without bawling. I knew she would sense my sadness and fear. I just remember thinking my baby is 6 months old and has gone into respiratory distress 3 times now. 2 of those times were so bad she needed to be put on a machine to breathe for her. How much more of this could her little body take? How many more times would I find myself in this haze of uncertainty and fear? Would this ever end? What happened to my normal life? Why HER? WHY, WHY WHY!!!!?!?!!? I could feel the anxiety building and I was on the edge of breaking. Allen suggested I take a Xanax and go to sleep. I remember saying what a terrible mother I was because I wasnt strong enough to stand by her bed at that moment and comfort her. Allen said "I am here, if anything happens I will wake you up". My mom said "this is what I am here for Patricia, you need to take a pill and calm down". She was standing on one side of Makily and Allen was on the other...mom was gently stroking her hand and telling her "it's okay baby girl". Allen looked terribly upset and worried. I took 2 pills and escaped this horrible reality....at least for a little while.

Ocala's Finest At Work......WHY ME!?!? LOL

***Disclaimer: I am not responsible for any traumatization that may occur from reading this post or looking at the one of the photos attached in it. Blindness may occur so read and view with caution****

So last night we went to the Christmas Parade. It was me, Allen, Makily, My parents and my sister was there working...she is an EMT. Here in Ocala the parade is a big thing. People started putting their chairs out 3 days ago. My sister put our chairs out early yesterday when she got there for work. Well we arrive about 4:00, we tote Makily and all our stuff to our spot. We get settled in, all comfy for the nights festivities. Makily was sleeping in the baby carrier on my chest and we were all in a great mood. I notice a family come up and they settle in on the grass in front of us. They have 3 little boys with them and they are all tooting noise makers...it was kinda cute. Well the mom sits down and OMG I wanted to die. I immediately looked at Allen and his eyes were as big as saucers. God help me it was all I could do not to start screaming "I'M BLIND, I'M BLIND!" My mother just looked at me and said "only us, only our family, what good luck we have" while we all laughed.
I couldnt resist snapping a quick picture. Here is the view we got for the alot of the evening!

What really freaked me out is that her husband was standing behind her for a LOOONG time and I know he saw this and never said anything to her! Maybe he thought it was sexy!? Of course the rest of the evening we all made several jokes about when the sun goes down and the moon comes out. Also if it was going to be a full moon or half moon.
Then we encountered the RUDENESS that I have spoken about before that occurs when large groups assemble for events such as these. People who were not wise enough to put their chairs out early like WE HAD and most of Ocala had....decided it was okay to walk in front of us (which I could handle) but also to stand right in front of us.
Here is the view I had for portions of the parade:

The two pictured there kept their rudeness to a minimum and left to find another poor soul to stand in front of after about 10 minutes.
The next group pictured REALLY made me angry. This was closer to the end of the parade so I will admit my patience was wearing thin with trying to see around these people and having to stand if I wanted to see something. I loudly said to my dad "gee I wish I could see the parade" to which my Dad replied EVEN LOUDER "YEAH ME TOO, WISH I COULD SEE THE PARADE". With that all 3 of our friends turned around and the two young ladies gave me the dirtiest look they could muster....the young lad in the blue jacket quickly moved when I said "could you please move or sit down so we can see". The girls rolled their eyes at me and turned back around continuing to block my view.

I noticed another girl that they knew walked up and they started to chat.....the "new girl" went and stood behind us...she had some sense and manners and didnt want to block our view...how very sweet. Well her 2 friends continuously encouraged her to come and stand with them. The gal with manners wouldnt do it and stayed put. I guess some parents are still teaching their children manners.
Other than that we had a great time....now we did have to move from behind the CRACK lady. She lit up and the smoke was blowing right into my and Makily's face.....so we moved down about 5 feet to get out of the way....well wouldnt ya know she changed positions and the moon was STILL shining on us the rest of the evening.
I will end this post by saying while I joke about our town and the people, I truly do love it here. I was born here in Ocala and it's my home. It is a great place to live but every now and then well I have to complain!

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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I love this time of year!

We had an awesome Thanksgiving! My family came over here....the only thing missing was Deborah, Herman and Micah, this year they went to Herman's family's house. We had all the normal Turkey Day foods. I got a lump in my throat while feeding Makily mashed potatoes. It was so wonderful to be feeding her like a "normal" child. Granted we still have a long way to go but it was nice. Everyone was extremely sleepy after eating and we had fun making fun of each other falling asleep on the couch. At about 8 we went over to Allen's mom's and had dinner again....Tammy (my SIL) didnt get off work til late so we waited to do thanksgiving with her. I was so stuffed after eating all day I thought I would puke. I had a "food hangover" most of the day yesterday. Needless to say my diet has suffered but I was sorta expecting that of this weekend. I havent even started my Christmas shopping but Lord knows I need to. Next week is busy but I hope to at least start.

This is my sweetie talking, smiling and laughing. I told you it was the most amazing sound in the world...now you can see. Give it a second and she will get tickled with herself....if you hear a clicking sound that is her "sucking" something she has learned to do since her palate was repaired.

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What is normal anyway!?!?!?

I have often said this to my grandmother and mom "maybe WE are the weird ones and everyone else is normal". People are just strange. This weekend we went to Light up Ocala. It was a family type event with lots of kids, balloons, face painting etc...... I like to go to these types of things because it gives me some sense of normalcy if you will. Anyway we got there early so as to beat the rush and get a good spot to sit. We sit down...I get Makily all settled in her stroller. Allen and I went and got her a red balloon. We came back and tied it to her stroller and she watched it move with the wind. It was cute. Anyway some "quality" people came and sat behind us. Sometimes I am a little apprehensive taking Makily out around so many people because well germs are a big concern as is the dreaded....smoker. Makily has 2 holes in her heart, chronic lung and respiratory issues...so needless to say I am VERY protective of what type of air she breathes! I also realize that I can't keep Makily in a bubble, she needs to experience life to the fullest and I made her that promise a long time ago. Well after a while the lady behind us lights up. I didnt know it was her at first....just kept smelling it and being VERY ANNOYED. I tried to ignore it and I would cover Makily's stoller with a blanket (i know probably wasnt doing much to keep her from inhaling the fumes but it made me feel better) when the smell got bad. Well some local band got up to play....they were awful but I was enjoying it just the same...when I get a pat on my shoulder. I turn around and the lady behind me says "can you do something with that balloon". I am immediately annoyed because at this point I HAD already figured out she was the "smoker", rudely smoking 3 feet from my baby but in order to keep the peace I had kept my mouth shut. My mom and I somehow got it untied and tied it to the bottem of the stroller. We wanted to make sure that our rude smoker could see well. I told Allen it was all I could do NOT to tell her to take her cancer sticks and smoke them elsewhere but again to keep the peace I was nice. The night went on with her nasty smoke blowing in our direction and me putting up the blanket and taking the blanket down from Makily's stoller. It was time for Makily to eat so when I hooked her up to the feeding pump I tried to make it very obvious what I was doing(usually I am overly discreet)......or at least make this woman realize we had a medically needy kid. I know that to look at Makily your average Joe wouldnt recognize she had problems so I wanted to let this woman know. She watched me hook up the pump....I could see her out of the corner of my eye. Then she lit up another AHHHHHHHHHHHHHHHHHHHHHH!!!! Later on a friend of mine's mom came by to say Hello....I had the blanket up because black lung woman was sucking on another one. I lifted the blanket while saying loudly "I have this blanket up because Makily can't handle all the cigarrette smoke here!!" THANKFULLY the woman moved about 20 minutes later. I think she may have gotten the hint. I just find it hard to believe that an adult in this day and age would smoke around ANY baby or child.....isnt it common sense that it's rude? I mean come on, you are blowing smoke around a precious child who certainly doesnt have the ability to defend theirself. I realize once again that maybe I am the weird one and everyone else is normal. My last run in with abnormality came near the end of our night. I was walking back to my seat......at this point things were VERY crazy because everyone in Ocala had gotten there and so it was crowded. I politely said my "excuse me and pardon me's" through the standing crowd to get to my seat. I get to a group of people that are dressed nicely....then I find myself standing behind a man and saying "excuse me" about 800 times....he never moved or acknowleged me. Finally the guy behind me that was in this group says "we will be moving in a moment and you can stand here then". I said I have a seat up front and I don't want to stand in your space. He then said "well there is a path right there go that way"....I look at where he is pointing and the anger rose up in me like I cannott begin to describe. There is a small area where I could have walked, well navigated and it was over a LADY IN A WHEELCHAIR!!!!! I just looked at him when I realized he expected me to climb over a wheelchair occupant rather than just tell his buddy to step to the side. I said "sir that's really rude to step over people like that". Well the kind wheelchair lady said "come on honey don't worry about me....step right over me, just be careful you don't fall and hurt yourself". I was enraged but to be kind to this lady I carefully made my way around her and through the crowd back to my seat. Why on earth would that man not just move 1 foot out of the way rather than watch me navigate my way through that? I changed my mind again....i am normal, HE WASNT.

What a busy and eventful day!

Today was NO FUN. In fact as I type this my hands have mascara smeared all over them as does my face. I just got off the phone with my mom and we both were crying like babies. What caused all the drama? Well basically we are wimps. I told her what I did today......Today I had to take Makily to Gainesville (God I hate that town) to get her fitted for a stander and a wheelchair. What fun that was.....my friend Trish went with me and I asked her several times while we were there to PLEASE gouge my eyes out with a spoon. She wouldnt do it...some friend she is huh? I have dreaded going just because it's such a harsh reality that Makily needs "that kind" of equipment. I NEVER in my life dreamed that I would be sitting in a room surrounded by wheelchairs and standers and having my 19 month old measured for them. It was an even more harsh reality when they said they werent sure they would have something small enough for her. My sweet little peanut, bless her heart. It just brings tears to my eyes. Anyway I did very well, had to bite my bottem lip a few times to keep from crying but I hung in there. The therapist took Makily and did a few short things with her and Makily was NOT HAPPY. It is very hard to see a therapist trying to get your child to do things that YOU KNOW she should be doing and can't. My heart was in my stomach the whole time. Thankfully she was very quick and handed Makily back to me. After looking through a few books with lots of different standers and wheelchairs, I felt like I needed a Xanax but decided against it. I need to really toughen up here. Anyway we decided on a stander and a Kidcart....it's basically a glorified stroller/wheelchair for kids. The lady made me feel good when she said Makily may NEVER even need the Kidcart but it is good to go ahead and apply for it now as her DEI (type of insurance kind of) will run out when she is 3 years old and then if we DO END UP needing it, it will be harder to get. I am praying we can have her walking around the age of 4 or 5. We will see. We will have the Kidcart on standby one way or the other though.
After our wonderful experience there we went and had a really nice lunch. I am proud I stayed on my diet. Yes that's another thing I am doing....trying to get my fat behind back in shape. I can't keep saying " I just had a baby" when my kid is like 2 can I? I am on Southbeach this is actually Day 10 for me and I have lost 7 lbs so it's working. Elon gave me a treadmill (thanks again) and I have been using it this last week too.
My friend Latena whom I have known since we were like 11, well her Dad passed away and his wake was tonight. We went and it was very nice and sad at the same time. Makily fell asleep in my arms after we had been there about 15 minutes. She is such a party animal! NOT. Anyway so that was my day. As much as I would like to drown my sorrows in a HUGE vat of ice cream and eat the biggest cheese burger and bucket of fries...I won't. Maybe I will eat a sugar free jello cup and go snuggle with Stinky. She is better than a teddy bear.

This is Makily sitting up for one of the first times, please excuse that it is sideways and I have the most annoying voice in the background!

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Okay now that I have that stuff out...

I will jump around from now on. There obviously are many, many more things that have happened since then and I will probably post them here and there. But today I want to write something happy. I cried while typing the first entries. I had to stop several times. Remembering a lot of that still hurts so much and I honestly feel the same anxiety and sadness when I think about it as I did in those days....and Makily is 19 months old. It talked to a friend of mine, her name is Stephanie and she has a daughter named Maia that is 10 years old with Emanuel Syndrome. She said even now 10 years later she has a hard time going back to that place....she has anxiety attacks....post traumatic stress. I think some of that you can never get rid of.
Anyway as I had said in the last entry that when the doctor said "severely mentally and physically handicapped" I imagined Makily being nothing more than a "lump". I know that sounds terrible but I did. I was distraught. BOY WAS I SOOO WRONG. This kid is far from what they described to me or from what I imagined she would be. It took me a while but when I did bond with her it was the most amazing feeling in the world. I never knew love like this until I had her. She is a part of me and when she is not with me I feel like I am missing my arm or my leg. Just last night Allen and I were playing with her and I just got teary eyed watching her and how happy she is. She loves to be ticked. She has the most infectious laugh and her smile will light up the entire room. There is NO feeling in the world like I get when I see her smile or hear her sweet laugh. I told Allen last night that if Makily NEVER develops any further than she has now than that is okay. She is happy, she knows she is loved, she knows I am her Mommy and Allen is her Daddy and that is enough for me. I have really learned what is important in this life. I am so grateful for every day I have with this child. There were times I doubted she would even see her first birthday but she is a little fighter. In fact Dr. Pierre's first description of Makily THE NIGHT she was born still rings true "She feisty just like her Mamma". I admit I can be feisty from time to time...especially when it comes to something that is important to me and even moreso when it comes to advocating for Makily. That is my "purpose" in this life I believe. I am so blessed. I have a loving family that has stood beside me through all of this craziness, A husband that would do anything and everything to make me happy and adores his daughter. Allen has never once blamed me or made me feel like any of this is my fault...I know a lot of marriages would have fallen apart with all that has happened. In fact I have read that parents of special needs kids have a 90% divorce rate. That is so sad to me. I also have an AMAZING pediatrician whom has saved Makily's life and done everything she can to help us through all of this. Not only has she kept on top of Makily's health but in the beginning when things were so tough she made sure I was okay and encouraged me to get help, because LORD knows I needed it and was too proud to ask for it. My parents, sisters and grandmother have been amazing, they have gone to appointments with me, taken off endless hours from work to be with us through all of Makily's hospitilizations and surgeries. I also have friends that have been with us by our sides. Trish and Justin even went to the ER with us once, I know they knew things were hard for us but actually going through that experience with us gave them an understanding of how hard this stuff is. These are just a few things that Makily has taught me. I have more love in this life than most people ever have....we have so many people around us that support us and would do anything to help us out. The real important things in this life are our friends and family. Houses can be replaced, money can be made and spent, but NOTHING can bring back the time you spend with the people that love you. I have learned to appreciate my family more, not to hold grudges, and I am still working on being a better person. All because God sent me an angel. I thank him for her every day.

The first week......

I woke up the next morning at about four am. My sister Elizabeth was laying on the sleeper sofa in the room with me half asleep. The TV was on, I started replaying the night before in my head. It had not all been an awful dream....this was real. My baby was not even 12 hours old and was 30 miles away from me.....and I had no clue how she was. I called my husband at home and he answered and sounded terribly tired. He had been at Shands till about 2am. I told him to go back to sleep, he was going to be coming back to see me at 9. My sister stirred and I asked her to help me get up to go to the bathroom. She did and I just kept crying and thanking her for being there. I am incredibly blessed to have such a wonderful supportive family. I took a shower and cried through most of it. I still can't believe this is happening.

We had the nurses put a no visitor sign on my door and I wouldn't take any phone calls except from immediate family. I couldn't talk to anyone. I was barely able to hold myself together and if I had to repeat what was happening to me over and over I don't know if I would have been able to keep it together. The thought of hearing one more person say "I'm sorry" was enough to make me hysterical.

I was so numb, sad and confused.

It's strange because I was trying not to let myself think of all the things that could be wrong with Makily....I mean I KNEW something was wrong BUT my mind wouldn't let me think of it.....I just shut down. I do believe that you have a defense mechanism in your brain that helps you shut these things out when your are dealing with too much at once.....never believed that until I had Makily.

Allen got there and Dr. Pierre came in soon after. I was happy to see her but apprehensive at the same time. I knew that SHE KNEW something was wrong.....she most likely knew what it was.....and honestly I didn't want to know. She was so caring and was patting my feet and leg as she was talking to me......this was comforting. She told me that the doctors at Shands thought Makily had Turners Syndrome. I didn't know what that was....she explained it to me. Basically Turners girls are short statured, may have scoliosis and growth issues and are infertile.....but cognitively they are usually "normal". I could handle that I thought, yes I was sad but I thought at least it's not too bad. She stressed they weren't sure what it was really and that Makily had blood drawn when she got to the NICU to test her chromosomes. She also explained Makily had Pierre Robin Sequence. It's an abnormally small chin/jaw, recessed tongue and cleft palate. I didn't notice her chin being small when I had held her the night before. I had been so out of it though.

Dr. Pierre left and I remember Allen pulling a Polaroid picture out and giving it to me. It was my daughter. I briefly looked at it and put it away. She looked awful. Tubes and wires everywhere...she was so pale, she honestly looked dead to me. My mom and dad came in and very soon after my Doctor came in. He asked me if I wanted to leave the hospital and I said yes. He was extremely nice to me. I was angry with him for ignoring me the day before and I am sure he was freaked out when he found out my baby was so sick. I had more things to worry about at the point than him. He said he would release me but I would have to have a two week post partum so he could make sure I was okay. That was fine.

We got checked out at about 11 am. They wheeled me out into the hall and I looked over and there standing in the hall was a Daddy holding his precious newborn in his arms. I wanted to bust out crying right there. It was the worst feeling in the world. They wheeled me downstairs and it was all I could do not to bawl all the way down....I was choking back tears the whole time and had my head down. My parents got me into the car....packed the stuff in the trunk, Allen got in the back with me. As we drove away I cried so hard, I didn't think I even had any tears left. I was supposed to be holding my baby, I never imagined I would leave the hospital without her in my arms. It was an awful, horrible moment in my life....the car was quiet except for my sobs. No one really knew what to say, and silence was really what I needed anyway. Allen just held me.

We got to my house, I took another shower and tried to make myself as presentable as I could. Right as I came out of my room from getting ready, my sister Deborah arrived. She looked at me and said "what happened to you?" At first I wanted to say "uh where were you last night?!" Quickly I realized she didn't mean it that way....I knew I looked like death warmed over...I had bags under my eyes and they were so swollen from crying. I am sure she was shocked to see me look so awful that she just blurted it out. We have joked about it since then.

I wanted to pump....well I didn't want to pump really...I wanted to breastfeed but I wasn't able...I knew I NEEDED to pump. I went into the nursery and sat in the rocking chair and cried. Here I was with this machine on my boob, when there should have been a baby. My sister came over and sat with me while I pumped. Allen came in too. They talked to me and it helped to distract me from what was going on. I wasn't getting really anything out but a couple of drops here and there....great I thought I can't even make milk for my sick baby. I realize now that the next morning after you have a baby your milk hasn't come in but I was already beating myself up for everything that was happening. I needed someone to blame and I was that person. I carried Makily, my body helped to form her so it was my fault. I took my meager 3 or 4 cc's of breast milk....put it in a baggy and we headed to the NICU.

I was nauseas the entire 30 minute drive there. I wanted to go and didn't want to go at the same time. I was terrified of what I may be told, what I might see....but especially how I would react to all this. I was already thinking things that I didn't understand. We got there and Allen went through the routine....Scrub your hands, put on the yellow gown. We walked to the back of the NICU and there she was. She looked as bad as she had the night before BUT this time I noticed yet another problem. Her head looked like someone had hit her with a hammer. She had a HUGE dark bruise in a circular pattern with blood caked in her hair. I was appalled and demanded to know what it was! The nurse said it was from when they used the vacuum suction at delivery. I said THEY NEVER USED THAT ON HER!!!! She then said that it was trauma from the delivery then.

"Trauma from delivery".

Another reason to blame myself.

She was on a ventilator, her nose was bloody and so was her mouth, they had a hard time intubating her. Her face was very puffy and swollen. I would touch her and her oxygen levels would plummet, her heart would start to race. The nurse told us not to touch her anymore. How can a mother look at her sick child and NOT touch her? I felt awful that my touching her would make her sicker, I kept telling myself Makily didn't like me. (I know this is extremely foolish and silly but I was nuts at the time) I was convinced she hated me for a long time.

We stayed in a hotel about two miles from the hospital the first two weeks. When Makily was about three days old, we got up that morning and Allen had a message on his voice mail that said "Mr. Caldwell, I just wanted you to know that Makily started to have a real rough time last night so we had to increase her oxygen and add another gas called Nitric Oxide." She had severe pulmonary hypertension (due to all the meconium). Her lungs did not want to stay open. I have since read that most newborns with a severe case of pulmonary hypertension such as Makily's usually die. She pulled through though.

When Makily was six days old, the geneticist came in to talk to Allen and I. I saw him walking into the NICU and thought he looked like a very important man. He approached us and introduced himself. Then he did something strange, he looked at the ventilator and asked what it was. I said "uh it's her ventilator". Strange I thought, this man is a geneticist and doesnt know what a ventilator is. He looked at Makily and then asked Allen and I a lot of questions, including if we were related. I wanted to laugh but I looked at him with a straight face and said no. (I guess some people answer yes to this!) He went to go get Makily's chart and when he walked away Allen said to me "Did he REALLY ask what her ventilator was!?" I said "yes Allen he did" We both laughed at this and Allen said "Well if he comes back and starts examining Makily's dolly saying well let's see here, her hair is rather yarn like and she has very pasty skin, we are running out of this place and quick"......we both became hysterical laughing at this, my husband amazed me that admist all we were going through he still knew how to make me laugh and smile, our sense of humor was still in tact. We quickly composed ourselves as the geneticist walked back to Makily's crib. He asked if we had any other family members that had any type of possible genetic issues. I did. My Grandmother had a little boy back in 1940 that died when he was three days or three hours old (I get different answers). He had half a kidney, cleft lip and palate, heart problems, lung problems etc. My Grandmother was told he looked so bad that she wouldn't want to see him. The geneticist said this was "noteworthy". He stated that the blood work for Makily should have been back at that point and he would check on it. He mentioned there were several different syndromes she could have and he just didn't know what it was without the blood work. I asked him the question I was dreading the answer to. "Is it possible she has no genetic problem and just has a cleft with some skin tags?" He said he doubted it, that it was unlikely. I had been holding on to the small chance that Makily would be normal until that moment. I let go of that fantasy....I felt an ache in the depths of my soul that no words can describe at that moment.

Allen and I went to eat lunch. We were talking and he told me he had no clue what the geneticist was talking about. What did all this mean? The only way I knew to explain things to him was to explain Downs Syndrome. How Makily could have something like that. I saw tears well up in his eyes and I realized then that until that moment he had thought Makily would be normal. I wanted to run screaming and crying out of there. Allen has been through so much in his life and I so wanted to give him a happy "normal" family. I had so terribly failed. Seeing the look on his face when he realized what I had already been assuming those six days was torture for me. I couldn't eat. That was a new problem I had been having. If you know me at all I love food, love to eat. That whole week I would stare and food and just become nauseated. My family forced me to eat as much as I could.

Anyway, after our awful lunch I went to go pump (this was another thing that was consuming me, I was attached to the milker all the time). I got there and someone was already in there. There was another "pumping room" on the 9th floor so I went up. I got in there, closed the door, turned off the light, got on my hands and knees in the floor and sobbed. I put a pillow over my mouth and screamed and sobbed some more. I kept saying "God please don't do this to me, please Lord I can't have a sick child....please God Help me, you know I can't do this, I don't have it in me, I am not strong enough, I didn't choose this path and I don't want to live this kind of life, please let her blood work come back okay, I am begging you God". I pulled myself together after about 10 minutes of this and I pumped again while crying. I went back downstairs and walked into the NICU. I noticed Allen was not at Makily's bed and quickly realized that it was shift change and parents weren't allowed in there for that hour. I started to rush out because I was afraid I would get in trouble for being in there. As I was walking out I saw the geneticist standing in a circle with Makily's doctor, 2 other doctors, nurses, social workers, and Makily's chart in their hand. They didn't see me, but I quickly came to the conclusion that "they knew" what "it" was. I suddenly felt like everything was going in slow motion, I could hear my heart beating...no pounding in my chest. I couldn't catch my breath. I ran down the hall looking for Allen, I was having an anxiety attack....I was shaking, my chest was heavy, I wanted to throw up. Finally Allen stepped off an elevator with the same frantic look on his face that I had. He said they had came to him and told him they had the results and were going to give them to us. My anxiety level was through the roof.....I called my mom hysterical and said you need to pray like you never have before in your life because they are about to tell us"......then I hung up.

Allen and I stood in the hall waiting for the doctors. I remember pacing and saying "please God, please God, please God" over and over....my mind was frantic. I knew the next hour of my life would change EVERYTHING forever and I was so afraid. I kept seeing people getting on and coming off the elevators, totally oblivious to the fact that my world was crumbling, they were living a normal happy life and there I stood, in hell. The world was going on with life and I felt like I had been kicked into some different reality. It was very strange. Finally the doctors came out and we sat down in this room with a long table. It was Allen and I, the geneticist, his assistant (she was an idiot), a social worker, two of Makily's nurses, Makily's doctor and some other woman. The geneticist began with these words "Makily has Trisomy 22, a 3rd copy of her 22nd chromosome." Then they handed me a "hand-out" if you will. I remember thinking "your giving me a hand-out, could you be any more lame at this moment?" I glanced at my nifty hand out and saw the words skin tag, cleft palate, heart problems, kidney problems....I had to stop reading. I asked the doctor what all this means. The next words he spoke felt like a dagger through my soul.

"Makily will be severely mentally and physically disabled."

My world stopped again, I began to cry and tell Allen I was so sorry, he was doing the same. I some how formed the words "will she walk?" he said most likely not. I then asked if she would talk and he told me "most children do not". Other than Makily dying I could not think of anything any worse he could have told me. I wanted to know how this happened. He told me that it could be just a spontaneous genetic abnormality OR one of us could be carriers and passed this to Makily. I asked if it was possible that is what took me so long to get pregnant and he said "yes usually babies with trisomy 22 are miscarried before you even know you are pregnant". I knew immediately at this point I was a carrier. The combination of the fact it took so long for me to get pregnant, my grandmother had a baby with the same problems, it was too much of a coincidence. A blood test a week later confirmed my this.

I was a carrier I had given this to Makily.

It was too much for me to handle.

I imagined Makily's life.

When he said the word SEVERE I thought what EVERYONE thinks a "severally retarded" person is like. I assumed she would be in a vegetable type state, she wouldn't know there was even a world around her. I imagined a child that just laid there and responded to nothing.

We went back into the NICU and stared at Makily. I had no feelings for her.....which made me feel incredibly guilty. I wouldn't have dared tell anyone that is what I was feeling at the time.

I was so ashamed.

What kind of mother is told she has a sick child and then emotionally shuts down and rejects her? They asked if we wanted to hold Makily.....she was still on the ventilator and had a UAC line in but I think our nurse felt sorry for us. I held her for a little bit and then Allen got to hold her for the first time. It was a very bittersweet moment.

My Mom arrived, Dad had dropped her at the front and he went to park the car. Allen went to go wait down stairs to meet my Dad and I stood with my Mom in the hall waiting for the social worker to open "the room" back up so I could tell my parents the awful news. I knew my mother was probably sitting on nails waiting to hear so I said,

"I am not going to make you wait anymore I know you are worried, Makily is retarded."

The word retarded kept echoing in my brain. I know this wording is so terribly harsh but I had no other words at that time, I was out of my mind. Just then the social worker came and let us into the room. We sat down and my mom said she didn't believe it. I was so bitter I said "well that is what they said and I believe it, I have to accept this and deal with it, I wish it wasn't true but it is and that is it". My mom insisted that Makily would walk and talk, we were both crying now. My Dad came in and I asked Allen if he had told my Dad...he hadn't. Great I get to do this again I thought. I looked at my Dad and said with tears in my eyes "she's retarded". I saw his eyes well up and he said "how bad?" I said "severe". He hugged me while I cried and kept saying "I'm so sorry, it will be okay".

This was the worst day of my life.

This is Makily the morning after she was born.