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.

And the labor started......

My due date with Makily was Sunday 4-4-04. Tuesday 5 days before my due date I was laying in bed and kept watching my belly get hard and shape into weird positions. I had been having braxton hicks for a few weeks and just assumed that is what they were. It's weird I even remember that I was watching some kind of surfing documentary on MTV. The night went on and they started getting really annoying. On a whim I timed it and they were 3 mins apart. This made me panic.....I kept thinking OH GOD they are close together I have to hurry (give me a break I was a first time mommy). My husband was out of town for work about 4 hours away so I called my Mom and Dad. As I was on the phone with my mother in a panic I went to the bathroom and there was a bloody show on the toilet paper. I was convinced at that point I was gonna drop a baby any moment....Naive I know....It's kinda funny now that I was really thinking that. I called the hospital and explained what was going on....They asked me if I had felt the baby moving or not and I realized at that point I hadn't really felt her much lately. This didn't concern me because I had rented a fetal Doppler and anytime she wasn't moving a lot I would use it and as long as I heard her heartbeat was strong I wouldn't worry. I told the nurse this but she said I should come in. I called Allen and told him what was going on and he immediately headed home. My parents picked me up and to the hospital we went. I remember feeling embarrassed when they made me get in the wheelchair. I kept thinking "oh Lord if I am not really in labor this is gonna be so embarrassing." I even told the lady I was fine to walk but they insisted. We got up to the room and they got me all hooked up.....I kept waiting for the nurse to say if I was contracting or not and she didn't. Finally I said "Is that machine saying I am having contractions?" She laughed and said "yes you are having mild ones but they are about 3 mins apart". PHEW...At least I knew I wasn't crazy! She checked me and IT HURT SO BAD, she said I was a finger tip dilated....THAT'S IT I thought. She said I was loosing my plug too. Anyway it was about 4AM at this point. She said that my doctor would be in around 8 and he would check me. She encouraged me to walk if I wanted to. Around that time a friend of ours T.J. showed up. Allen had called him and told him that I was in labor, T.J. was excited so he came down. He brought me the ugliest pair of slippers I had ever seen and they were 3 sizes too big.....We joked about that and I wore them anyways! T.J. And I walked the halls, he timed my contractions. I remember noticing in the windows that I was HUGE....I kept thinking Oh God I will be a cow forever.....Then a contraction would come and I would totally forget my tundrous size. After walking for about an hour I went back to my room....They hooked me back up and I was still contracting. The new nurse came in at 7am and asked me when I had last eaten. I told her 8pm the night before and she gave me a weird look. Like "why haven't you eaten since then?" I thought 8pm the night before was reasonable but I guess she didn't. She told me to drink a lot of water and I did. Finally around 8am my doctor came in. He checked me and said I was 1 and about 50% effaced. He did say that my contractions were very regular (still every 2-3 minutes) they just weren't lasting longer than 30-45 secs. He said he would have me eat and drink and if this was "false" labor it would stop everything. So I ate some french toast and drank juice and water....still had contractions. He came in a little later and said that since I was not progressing really he would give me a shot to stop the contractions and send me home with a sleeping pill. The nurse came in later and gave me a shot of Tributilin, I found out later that usually this is NOT given to people that are full term. It is used to stop women in early labor. I still do not know why he did this. The shot made my heart race. About a half an hour later he came back in and said I was still contracting and that he would give me another shot. After the second shot my contractions slowed but didn't stop. They gave me a sleeping pill and sent me home. I slept for an hour maybe 2 and woke up with contractions harder and stronger than before. Allen was home at this point. We began walking up and down the street of my neighborhood. My sister Deborah showed up at this point. She walked with us. We went back inside and sat down and my friend Trish showed up we all talked and were timing my contractions. They were 45 secs and about 3 mins apart. I was starting to feel hopeless because it had been over 12 hours since this had started and I didn't feel like I was making any progress. Later that night Allen and I laid in bed watching TV, timing my contractions....we did this for about 2 hours and finally I told him to go to sleep that I wasn't getting anywhere. I would wake him if things got bad. So Allen went to sleep. I laid there timing my contractions and just got more and more tired. I got up and got in the shower. The hot water felt really good. I am sure it was a pitiful site....I laid on the floor of the shower with the water running over me moaning. After a while the water turned cold but I was so exhausted and in so much pain I didn't want to move....I just laid there moaning and crying. Allen woke up and came into the bathroom with the most panicked, concerned look on his face. "are you okay, what's happening?" I heard you crying. " I got out of the shower and laid back down in the bed and we started timing again. FINALLY they were 2-3 minutes apart and 1 minute long! PRAISE GOD I THOUGHT. Allen was ready to go back to the hospital but I wanted to wait until I had been having them like that for at least an hour....the hour went by and I was still having them. I waited another hour and they were still consistent so I called my parents and they met us at the hospital. Same routine, got into the room hooked up. The nurse checked me and said I was 1 cm and 75% effaced....I wanted to cry right there. 24 hours of contractions and I wasn't making too much progress. They told me that the doctor would be in at 8am as he had a few inductions and he would check me then. I was so anxious, I couldn't relax, I tried watching TV I wanted to jump out of my skin. I was going crazy imagining I would be in labor for a week or more! At about 8 am I heard my doctor's voice while walking down the hall and was elated. Finally I would get some kind of relief and answers. 45 minutes later he hadn't come in. The nurse came in to check on me and said that he had came and went and when his midwife came in that morning she would check me. I was very upset. I just cried I couldn't believe he had left me like that and didn't even have the courtesy to come in. My dad told me when the midwife came to ask for pitocin....I had already thought about this but my dad was very adamant with me that I really needed it...I agreed. When the midwife came in she checked me and I was 1-2 cm and only 80% effaced....I started crying when she told me that they usually don't admit you until you are at least 4 cms. I told her that I had been doing this for 2 days now and I hadn't slept. I begged and cried for her to give me pitocin and break my water. She said she would review my chart and come back in and let me know. The nurse came back a few minutes later and set up a tray to break my water. THANK GOD! The midwife came in and told me they would break my water and give me pitocin. I wanted to kiss her. She broke my water (this was no fun). She told me that there was meconium in the fluid. Makily had a bowel movement. I started to panic. She assured me that they would just have to suction her a little extra and it was not a big deal. I knew that this was something that happened sometimes BUT a rumor I had heard 2 months before was echoing in my head. I was told that my midwife did not like to intubate babies. That she had delivered a meconium baby, the baby needed to be intubated, she wouldn't do it, the nurses were not allowed, the pediatrician was not there and the baby died. This story bothered me at the time but I was 7 months pregnant and couldn't have switched doctors at that point. I reassured myself at the time by saying "what are the chances of my Makily being a meconium baby"? My mother came in and I told her.....She too had heard the same rumor and we both felt the same way. We wanted the pediatrician there. The nurses assured us there was "no need for the pediatrician, we handle meconium babies all the time". I asked the nurse who would intubate if it was needed and when she told me the midwife was responsible for that I became even more uneasy. Thankfully I had worked for Makily's pediatrician a year prior to this. My sister was a nursery nurse at the neighboring hospital so Dr. Pierre knew her also. My sister (Deborah) called Dr. Pierre and explained the situation....she said that she would come in around lunch time to see me, and then when I started to push to call her. This put my mind at ease. My pain was getting more intense and I was given Nubain which put me to sleep for an hour or so. When I came out of my drug induced haze it was about noon and Dr. Pierre was there. She told me to relax and that everything would be fine. She urged me to get the epidural. I had been holding off because I felt like it would slow things down but she kept telling me it would help. So I agreed to get the epidural. The anesthesiologist was not a nice man. He told me that if I had a contraction to just try and deal with it, that if he stopped for every contraction we would be there all day. My nurse was amazing and told him if I needed him to stop that I would tell him to stop! He stuck me the first time and I was trying so hard to be still, I was crying (not sure why other than hormones and fear), in alot of pain and this man wasn't the sweetest guy. He kept poking and I finally yelled and screamed. He said "stop screaming and tell me if you feel pressure or pain". If you have ever been in labor you know pressure and pain can feel ALOT THE SAME! I couldn't decide which it was so I said BOTH!!! He pulled the needle out and explained he was scraping my spine and that is why it hurt so bad. Great. He stuck me again and got it this time. They laid me down and I could hear them talking about my blood pressure. The nurse told me to lay on my side and after a few minutes they said I was fine. My blood pressure had gone down real low but thankfully came back up. I relaxed a bit and finally felt better. I didn't feel ANY PAIN for a while, I was so relaxed and honestly wished I had gotten the epidural sooner. I started feeling pain again but this time it was in my butt. It felt like someone driving a car through my behind. It was with every contraction and just got worse and worse I told the nurse and she checked me, I was 3 or 4 and 90% effaced. I was about to loose it. She said she would call the anesthesiologist to see if I could get a bolus in my epidural for the pain and also that I may need a c -section as I wasn't progressing much and Makily was not dropping down. I just started crying. I didn't want it to be that way. I wanted a vaginal delivery, to have Makily placed on my belly, I wanted that moment, I knew if I had a c-section I wouldn't get it. My mom and I were talking about it and she was reassuring me when a few minutes later my nurse came running in. I immediately realized that I didn't hear Makily's heart beat anymore on the monitor. Never in my life have I felt utter panic like that. I pray I never will again. Helplessness , powerless. I went from bawling about NOT wanting a c-section to wanting them to rip me open and get her out at that very second. They put oxygen on me they moved the monitor around on my belly trying to find Makily....They did but her heartrate was 40, my panic just increased and I was becoming hysterical. I remember Allen was pacing back and forth feverishly and my mother was by my side telling me it was okay and trying to calm me down. The anesthesiologist walked in during all this. The nurse at this point had gone to check me and was literally bouncing Makily's head up and down trying to stimulate her. He started to ask me the most annoying question in the world again...."Mrs. Caldwell is it pressure or pain". UGH!!! I said it's the worst pressure I have ever felt in my life and it's causing pain". Then he told me there was nothing he could do for pressure. I think my nurse had had enough of him because she said "please just give her the bolus, it will help". Remember while all this is going on I still don't' know if Makily is alive, dead, dying or what. Every ounce of sanity in me was gone. The nurse put an internal fetal monitor on Makily's head and thank God, her heart rate went up and things calmed down. I was relieved and scared at the same time. Why did that happen? The anesthesiologist had given me a bolus and my pain was gone. I felt so much better. The nurse came in not long after and checked me and told me that I was 8 cm's!!! I went from 3-4 to 8 cm in about an hour's time!!!! I couldn't believe it. She told me we were ready to push!! I got so scared! I was more afraid of pushing than labor. Allen was really excited, he was going to meet his little girl and I will never forget the look of happiness on his face when he realized she was almost here. Again the nurses assured us that we didn't need the pediatrician but my sister called her anyway. Dr. Pierre called the nursery and they said she really didn't need to come. Praise the Lord she did. I believe God used her as a tool that night. I started pushing and didn't really feel much at first. I slowly began to notice it was starting to hurt and remember saying "OW, OW, OW" when my mom said "why is she hurting, she has the epidural". The nurse had turned it off because I guess I wasn't pushing hard enough at first. I pushed a few times and started to feel the most intense urge to push with each contraction. When I was pushing I kept grabbing Allen's shirt and twisting it really hard....he says I hit him a couple of times in the ribs but I don't remember that part at all! I saw Dr. Pierre walk in but I was too tired to say anything to her. She was standing next to the midwife. Allen and Deborah were holding my legs.....My sister had tears in her eyes. My mom was right at my head reassuring me and telling me she knows it hurts but it's almost over, she had tears in her eyes too. When they started saying they could see her head I got scared I knew that part would be the worst but I was encouraged that my pushing was doing something. I pushed again and felt the most excrutiating pain I have ever felt in my life her head was out. Dr. Pierre stepped in and I saw her suctioning Makily. With the next contraction I pushed her the rest of the way and I felt the most relieved I had ever felt all at once....she was out. They held her up and I immediately thought she looked really little. I dismissed this thought quickly thinking "all babies look little". My mom said "Patricia she is little and she looks just like Allen". "Patricia she is little". It reinforced my thought but I kept trying to deny it. They took her to the warmer immediately. She was supposed to be on my belly....I was thinking I hope they hurry up and get her suctioned and cleaned up so I can have her right away. I kept waiting to hear a cry and didn't, I kept asking....What's happening and I just kept being reassured everything was fine although I didn't hear a cry. Allen and my sister were over by Makily at this point with the pediatrician. Finally after what seemed like a year Makily cried.....And I knew. Something wasn't right. She sounded like a kitten. Why, why does she sound like that I kept thinking. They rushed her by my bed and let me kiss her. Immediately I noticed a skin tag on her cheek. I was too afraid to ask what it was. Bless my mother because she did and the nurse said "it's a skin tag....She has 2 more and a cleft palate." With that she walked out. It was just me, my mom, the nurse and my midwife in the room, every else went with the baby. I laid there talking to my mom trying to figure out why she had a cleft. Her lips were fine. It was later I found out that you can have a cleft palate without a cleft lip. Everyone just kind of acted as perplexed as I was. They finally got me cleaned up. Allen came in my room crying. I had never seen him cry before this (with the exception of the moment Makily was born) so I knew things were bad. Makily can't breathe he told me. They are sending her to Shands to the NICU. I felt like the entire world stopped. My chest suddenly felt heavy and I was so confused. WHY WHY WHY I kept thinking. Why is she sick what happened, what did I do wrong? He finished telling me that they weren't sure what was wrong and then I sent him back to be with Makily. My Dad came in not long after, he just hugged me and I cried harder than I ever had in my life. I couldn't believe that not only my dream birth was gone but my daughter was deathly ill and we didn't know why or how. They transferred me to the post partum unit. Dr. Pierre came in and told me that Makily was struggling pretty hard and she was going to try to intubate her, once she was intubated I could go see her. I just kept crying. An hour had passed and I still had not seen her. Finally I said if someone doesn't bring me a wheelchair to go to the nursery I am walking there. They wheeled me down there and placed Makily in my arms. She had a c-pap on her face, Dr. Pierre was unable to intubate her because her airway was so compromised. She was green, her hair was green, her nails. (from the meconium) She had skin tags on her cheek by her ear. Her legs looked funny to me. When she opened her eyes they kept crossing. She would open her mouth to cry but nothing was coming out. When she took the slow, ragged breaths she was able to take her entire neck caved in. I wanted to put her down and run. I was terrified. How did this happen to my baby? What is wrong with her? Her lips were turning blue around her mouth. I asked if this was okay and they told me it was. I remember staring at Dr. Pierre's shirt...there was blood on it. I kept thinking how it was there and she didn't care, she was trying to save my daughter's life. I vagulely recall Allen taking pictures....I wondered why they were taking pictures of this awful moment. I didnt want to remember this.....of course now I am glad I have them. The NICU team arrived and I was wheeled back to my room. They stopped by with her in the isolette so I could see her before she left. She looked so sick and so tiny. I was told at this point she was 5 lbs 10 oz....I was only 3 days from my due date, why is she the size of a 36 weeker? Again I knew something wasnt right. WHY WAS THIS HAPPENING!?!? I just sat staring, I don't even know what they were saying to me but somehow I knew to shake my head and sign some paper. I remember the whole family being there peeking into the isolette and then looking at me. What are they thinking? They are thinking the same thing I am thinking....this baby is going to die...I can't say that outloud though...that will make it true and I can't stand it if I am right, God help me. Allen followed the ambulance to Shands, my oldest sister Elizabeth stayed with me that night. I was numb they gave me Darvocet and a sleeping pill. I went to sleep.

The first time I held her.

Our first family picture:

I guess I'll start at the beginning...

I figure in order to start off this blog I would need to explain our story up until now. I have been wanting to do this for a while but time and emotions usually got in the way. The story really starts about 2 years before Makily was born really. I won't go into too much detail there though but I will touch on the important things. Basically my husband Allen and I started trying for a baby in May of 2002. I am one of those neurotic people...you know the kind...when they get their minds set on doing something important they are determined to succeed. Conceiving a baby took over my life. After we had tried for 6 months we had some preliminary testing to see if anything was wrong....I was told I had a hormonal issue and was put on a mild fertility drug called Clomid. This drug didnt work out for me and caused more problems than it helped. I was referred to a specialist who reviewed my labs and said that I had NO hormonal issue....keep trying, that if I wanted to do genetic testing or a few other minor tests at that point I could BUT his advice was to keep trying for another 6 months. I switched OBGYN's (since the first one had misdiagnosed me with hormonal issues that I DIDNT have) and had some x-rays that also came back fine. The end of June 2003 I had a laparoscopy that revealed I had a tiny adhesion on my left ovary, which was repaired....other than that....I was "normal"....in fact the words the doctor used was "you have pristine reproductive organs". Wow Pristine I thought...that's REALLY good! We again were urged to "keep trying". On July 25, 2003....before I had even missed my period a blood test confirmed that PRAISE THE LORD I was pregnant. I think it is important to point out the fact that this day was ALSO Allen's birthday. It was a sign from God telling me to be faithful and that his timing is always right. I had a normal pregnancy....well I did walk on eggshells...after being told I had a fertility issues, trying as long as we had, being on fertility drugs for a short time....I was paranoid I would loose this blessing baby that I was carrying. No caffiene, no excersize(that didnt bother me much ;-), took my vitamins and had been taking folic acid for 2 years at that point! I walked the line....I was determined that if anything happened I would have no reason to put the blame on myself. I remember distinctly when I went to my first OB visit. They give you a ton of paper work to fill out. When I came to the question if I wanted the triple screen (genetic testing) I couldnt answer it. I stared at it for a long time and finally when I realized I was wasting time I went to the next question. I never went back to that question. Back then I remember thinking in my naive mind that even if something was wrong with my baby I would not terminate....I still believe that but I think that knowing ahead of time is VERY important. My pregnancy was pretty good, I gained the 30 lbs, had the puffy feet, waddled and glowed. I was over the top excited....especially when my ultrasound revealed I was having a girl. I had dreamed of a little girl that looked just like me....a head full at jet black hair and big blue eyes. Everywhere I went people would stop me and say how much she looked just like her mamma and how beautiful she was. This was a dream I carried really all my life. It was finally happening. I told Allen several times during my pregnancy that things were too perfect and I was waiting for an anvil to drop on my head. My life was going just as I had planned and I couldnt have been happier. I was about 28 weeks along when I asked the midwife (I had to see her at that particular visit) when I was supposed to have my triple screen. No one had verbally asked me and remember I never checked yes or no on my paper work. She asked if my doctor had offered it and I told her no. She then said that I was too far along to have it done at that point and usually they didnt push that test much and it wasnt really usefull unless you planned on terminating according to the results. We didnt so my mind was at ease at that point. 8 weeks later I went in for my 36 week appt, I was seeing the midwife again this visit. She felt my belly to check Makily's position and noticed I had a huge lump under my right boob. I told her I was convinced that it was Makily's head and she was breech. She wasnt sure and so she sent me for an ultrasound. Before we left I asked her about the baby turning at this point in my pregnancy, I did not want a c-section. I had dreamed of my labor and delivery for a long time and I was determined I would have the dream birth I had imagined. I wanted Makily placed on my tummy right after so I could watch her breathe her first few breaths, I wanted to breastfeed right away. She said it was still possible Makily could turn and to see what the ultrasound revealed. On the way to the radiologist I remembering saying this to Allen "I am so excited we get to see her again but what if they see something wrong?" He laughed at me and said that everything was fine and to stop worrying. When they did the ultrasound they saw Makily WAS head down thank God and that the lump was her knees. She was measuring about 5 lbs then. I was concerned, I felt that she was to little, but they said the last 4 weeks she would gain a half a pound a week and not to worry. I felt a bit uneasy but tried to push it into the back of my mind. I had no idea that in just a few short weeks my "bubble" was going to be burst and I would be forced to adjust to a new life.

Where to begin?

Well I am starting this blog as kind of a journal for myself. I have a 19 month old daughter with a rare genetic condition. Since having her my life has changed so dramatically that I am struggling to get used to "my new normal". I have several pages for her but thought I would start one just for me and my thoughts....good and bad.