On the mend and BIG REVEAL.

Makily coughed all night but her temp is 99.6 THAT'S RIGHT 99.6! I am so thrilled. She is acting like herself and smiling. Right now she is watching scooby Doo in the highchair playing with her toys happily. She actually giggled several times today!

Dr. Pierre called to check on her and she was pleased that her temps are finally stabilizing. Her urine culture came back and it was fine other than some "colonies of normal urine contaminant" so I am convinced this was just a HORRENDOUS viral bug that we all caught. Poor Doodles has a hard time recovering from stuff like this though. She still looks pretty puny but she is maintaining good temps (we are still giving meds though) and that is what is most important. She is coughing a bit and still has a pretty snotty nose though. I am feeling a little better too.

So I couldn't wait until Monday I am going to post Makily's new "montage" I did. I love it! Hope you enjoy it as much as I did making it.

Make photo slide shows at www.OneTrueMedia.com

So your baby was just diagnosed with Emanuel Syndrome......

....what do you do now?

First of all go to Chromosome 22 Central and contact Stephanie St.Pierre. Stephanie is the EXPERT on Emanuel Syndrome and many other chromosome 22 disorders. Her email address is on the site. The website has so much information and can direct you to other families and their stories online.

DISCLAIMER: I AM NOT A DOCTOR. I have some medical training but....

I am NOT A DOCTOR OR A NURSE.

The advice and information I am giving here is strictly based on what I have learned from being Makily's mommy. I will outline what we have experienced with her. Your child may not have the same issues we have had, although all of her severe medical conditions ARE IN FACT a result of having Emanuel Syndrome. While all the children have similar issues just like ANYONE ELSE they are ALL different in their own ways.

I encourage you to follow your doctor's advice for what is best for your child.



Emotionally

The emotional toll of hearing your child has Emanuel Syndrome is devastating. You will go through the stages of grief, many times. I pretty much skipped over the "denial" stage and went straight to anger and depression. Makily is almost four and I pretty much have accepted things....although I do slip back and forth at times. For me that first year of her life was the hardest. It's not a time in my life or Makily's that I would wish to repeat.

You may find yourself feeling and thinking things that scare or confuse you. I did this and after speaking with many other ES parents, they went through it too. Allow yourself to feel whatever you are feeling. Pushing it to the back of your mind will just make it worse and eventually it's all going to come out. I also suffered SEVERE PPD which was worsened by Makily's diagnosis AND all her many medical problems. According to WEDMD you are at higher risk for post partum depression if:

You have a lot of other stress in your life.

You have a sick or colicky baby.

Babies with Emanuel Syndrome typically are born sick AND many have gastrointestinal problems that often present much like colic. The combination of that and the diagnosis of Emanuel Syndrome can be a HUGE source of stress. To find out more about Post Partum Depression click here

My advice to Mom's if you think you may be suffering from PPD is to GET HELP AS SOON AS POSSIBLE! I fought it myself until Makily was eight weeks old. I was pumping my breast milk for her at the time and REFUSED to take any medication. It wasn't until I had a nervous breakdown that I decided I had to do something. I began taking medication and while it did not take all my problems away IT SAVED MY LIFE. Things were still hard but I was able to deal with my life better. I started to feel like a part of me was coming back again. I no longer felt like there was no light at the end of the tunnel.

Who are all these doctors?

Most Emanuel Syndrome babies have MANY medical issues that need to be addressed. You may find that you spend more times traveling to and from the doctor's office than you ever have in your life. The waiting room will become your second home. Makily came home from the NICU when she was a month old and we didn't truly know the extent of all of her medical problems until she was at least one. It IS CRUCIAL to have a pediatrician that is willing to research Emanuel Syndrome (ES) and learn all about it. Due to it's rarity 95% of the medical profession DOES NOT know anything about it. I have often times found myself educating the doctors of what Emanuel Syndrome is. It's just not something they see often and most likely they will never see it again.

Your baby is very rare and very special!

There are MANY body systems that can be affected by Emanuel Syndrome. For a complete list of possible problems CLICK HERE

My advice to ALL Emanuel Syndrome parents whether your baby is having symptoms or not is have both a Neurological and Cardiac consultation (along with whatever else your doctor has advised). Obviously the brain and heart are vital to one's survival and if their are any abnormalities with either, you should know about them early on.

Makily was born with what we thought was possibly just a tiny ASD. After two cardiologists, many EKG's and several echocardiograms it was determined she had two ASD's that needed to be repaired. She had a heart catheterization at age three. During the cath they found she didn't have just two ASD's...she had several (ya know like a piece of swiss cheese). Thankfully this was able to be repaired during the heart cath (click here to see video). My point to all that is that even though your child may not be showing any symptoms, something could be going on. It's best in my opinion to rule it out.

Makily did not show any signs of seizures or neurological problems (well other than developmental delay that goes along with ES). She was two years old before we had a neurological work up. She had other pressing problems and the neuro appt kept being pushed to the back burner. At the appt she had an EEG that came out fine. I was even proud when they told me that her EEG was "normal for a child of her age" and that her brain waves were not considered "slow". They scheduled a 48 hour EEG and an MRI for the following month just to be on the safe side. We were told it was just a precautionary measure and she seemed fine. Less than two days later Makily had her first (and so far only) massive seizure on my living room floor (click here to read about it). It was 3:15 am and I felt like the wind had been knocked out of me. She ended up in the PICU on a ventilator for three days. When we arrived at the hospital they preformed an MRI of her brain. It revealed a thin corpus collasum, mild hydrocephalus and mild cerebral atrophy (all of which are typical in ES kids). I was told that the combination of these three brain abnormalities put her at higher risk for seizure activity. They are still unable to tell me why she never had seized before that day and what caused the seizure to happen that day. She has been on medication for her seizures since June of 2006. Since starting the medication she has not had any seizures and her EEG's have all come back normal.

There are other organ systems that can be affected by Emanuel Syndrome I HIGHLY ENCOURAGE you to have whatever consultations your child's doctor advises.

PT, OT, SLP

WHAT THE HECK DOES ALL THAT MEAN!?

Physical therapy, occupational therapy and speech therapy.

Your child will likely need all three. Makily recieved therapy three days a week for the first 3 years of her life. That on top of all the doctors appointments had me running like a crazy woman (and I was/am a crazy woman). Most states offer Early Intervention (which your child SHOULD qualify for). It is a program for children with special needs and they pay for your child to receive therapy. Even if you have private insurance, typically they only cover a certain amount of therapy a year (ours is $2500). Once that is used up you would be left holding the bag for the remainder...that is where Early Intervention comes in. They will pick up where your insurance leaves off. If your child is getting three hours of therapy a week at $100 a pop that adds up to a total of $1200 a month which is VERY expensive. So I urge you to get in touch with your local Department of Children and Families and they should be able to direct you to Early Intervention in your area. I also urge you to get Medicaid for your child if you can. We applied and were turned down because we are only a family of three and our income was too high. Medicaid pays for SO MANY THINGS that your insurance will fight you tooth and nail on. I also encourage you to try and get Social Security for your child. We have applied once and were turned down (due to income) but I am going to apply again. For a while we did not want to apply for any help because our pride was getting in the way. Once we realized that we were only hurting ourselves and that state aid was MADE FOR CHILDREN with disabilities like Makily (although it's often used and given to others who need to go out and GET A JOB, don't get me started on that).

Things we have used that have helped Makily along the way.

The Bumbo Seat
**This helped Makily TREMENDOUSLY with her upper body strength and learning to sit up on her own.**

Ankle Foot Orthotics (AFO's)
These helped Makily to be able to weight bear on her feet. Her ankles are very weak and like to collapse without them.

Jumperoo
Makily would just kinda "hang out" in this at first but once she got the hang of it she REALLY enjoyed jumping in it. I hated it when she got too big to use it!

Squeaky Shoes!
These are the cutest shoes ever. They squeak when your child kicks their feet together, steps or pushes down with their feet. It's a great way to get them to want to stomp and use their legs. You can find them on ebay. Just search for "squeeky shoes".

The Neurosuit
This is a high tech suit that compresses the joints and different pressure points throughout the body. Makily was lucky enough to have one purchased for her from an amazing organization. They are pricey but it was less than six months of using it that Makily was taking steps with the Kaye walker and standing up.

Developmental Milestones for Makily
(keep in mind that Makily spent a total of three months in the hospital for the first year and a half of her life. She had four major surgeries during this time also.)

* Little smiles at four months.
(some parents have reported that it seemed their baby was "smiling with their eyes" before they got an all out grin, this is how it was with Makily)

*Cooing at four months and giggled

*Cooing and "talking back" in response to you five or six months

*Big grins and belly laughs at six months

*Sat by herself in a bumbo seat at 9 months

*Tripod sat at 16 months for a minute or two at a time.

* First tooth 18 months

*Sat independently for short periods at 19-20 months.

*Sitting independently indefinitly 24 months.

**Had her first modeling job 26 months
(okay I get it's not developmental but HEY can't a mamma brag!)

*Weight bearing on her feet WITH knee immobilizers, AFO's, Neurosuit and therapy ball in front of her at two and a half (30 months).

*Weight bearing with just AFO's and therapy ball 32 months

*Weight bearing with NO therapy ball, only holding your hands age three.

*Taking steps with help and with Kaye walker 38 months (age three and two months)

**as of 1-11-2008 this is a rough draft of this post. I will be adding to it in the coming weeks.**

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: