The Wreck.......and what's that in my brain!?

In February I was in a car accident.



I had dropped the kids off at school, gone to the gym and was coming home. I literally was turning INTO my subdivision. Mid turn I was rear ended. I lost control, and went off road straight into the neighbors yard. The drop from the road to yard was un even so the van shifted to the left and my head hit the drivers side door window.....pretty hard. I felt the impact of that but didn't have time to think because then I ran over our subdivision sign which deployed the air bags. When that happened all I could see in front of me was well...airbag of course and A HOUSE that I was going straight towards. I went to hit the brakes and in my panic and confusion (I had just hit my head AND had an airbag in front of me) hit the gas. SIGH. Luckily I got it together enough to hit the brake and my van literally came to a stop five feet from my neighbor's front door.

My Trajectory...scary I say!




When the van came to a halt, I saw smoke, panicked thinking it was on fire and got out. It was just barely raining. I sat down on the ground a few feet from the van and that's when I noticed a red SUV across the street parked.



The lady that lived in the house opened her door (in a mumu and curlers btw lol), looked shocked that there was a van in her front yard.......then she noticed me sitting on the ground and said "OMG WHAT HAPPENED!"



She ran back in and called 911.



A man got out of the red SUV ran across the street. He sat down next to me and asked if I was okay. I was shaking and hyperventilating at this point. I had been trying to catch my breath but was so shaken and confused. Between gasps I told him I think I am okay but my head really was hurting. He looked at my forehead and said "Well you do have quite a goose egg there". He told me to try to slow my breathing down. Then looked me over. He saw burns on my arms and explained they were from the air bag. I told him maybe we should move that I thought there may be a fire in the van and he said no the smoke was from the airbags too.



Then he did something that was very surprising.



He put his arm around me and said:



"You realize this is all my fault, I rear ended you I am so sorry. I am an under cover Florida Highway Patrolman and that's an unmarked car, I already called this in before I even got out".



I just started crying. I am not sure if it was out of relief that this was an honest man. He was a cop that wasn't going to try and pin the blame on me somehow.



The more he talked to me the more I started to calm down. He had his arm around me most of the time saying how sorry he was and talking me through slowing my breathing down.



The ambulance arrived. The paramedics were SO nice and they advised I go ahead and take a trip with them to the ER because of the bump on my head. I quickly told them my sister was a paramedic and to call her. By the time they had me loaded up in the ambulance I had calmed down and was actually joking with the paramedics. I apologized for how bad I must have smelled. I had just come from the gym and told them had I known they were going to pick me up I would have showered first. They told me that I didn't smell that made me happy! LOL

About an hour after the accident.


Once in the ER, the doctor and nurses were surrounding me asking questions, taking off my shirt, putting a gown on me. I was hoping they would leave at least for a second. I had worn a waist slimmer belt to work out with . It was all sweaty and nasty and I didn't want to say HEY I'M NASTY....don't mind me taking off my nasty fat girl waist slimmer belt LOL.



The doctor told the nurses to bring in the ultrasound machine so he could scan my belly. I'm thinking okay here's my chance, they will leave....NOPE. She rolled it right it and he pulled up my gown to reveal my sweaty belt.



LOL



So I say "Uhm, I'm normally a clean, fresh smelling gal, but I was coming from the gym and this belt is supposed to make you lose more weight in your tummy and so it's sweaty and gross".



*blink*



*blink*



The doctor looks at me straight faced and says...."Well can you take it off so I can scan your belly".



HAHAHAHHAHAAA



I ripped it off and was mortified to see the nasty sweat on my stomach.



SHOOOT ME.



He didn't even flinch, scanned my tummy and said all was fine.



They sent me for a CT scan a few minutes later and made me pee in a cup.

I was discharged the same day with bumps, scrapes and bruises. My knee and my head were hurt and the van was totalled but knowing it could have been much worse I was relieved.

Day three....you should see the other guy.


My thigh (omg how fat does my leg look!)


My knee



Upon discharge the doctor explained that while my CT did not find any bleeds or problems from the accident they did see an "asymmetrical enlargement of the choroid plexus". He said I should see my primary doctor and have an MRI to be on the safe side.

I didn't think too much of it, immediately chalked it up to possibly being something to do with my 11,22 balanced chromosomal translocation. A normal abnormal....no big deal.

I had the MRI two weeks ago. Really I only did it because I thought it would be interesting to see what was in my brain LOL. I wasn't concerned.

The doctor called me Thursday and says there is in fact a mass in my head. He explained he is referring me to Neurosurgery.

*blink*

*blink*

I got a copy of the report. It suggests that the mass is one of three things.

1. Choriod Plexus Papilloma

2. Hemangioma

3. Meningioma

I am pretty sure it's a Meningioma. Reason being is because under causes in the link above it states:

The most frequent genetic mutations involved in meningiomas are inactivation mutations in the neurofibromatosis 2 gene (merlin) on chromosome 22q.

If you look farther down under References number four says this:

^ Lekanne Deprez RH, Riegman PH, Groen NA, et al. (April 1995). "Cloning and characterization of MN1, a gene from chromosome 22q11, which is disrupted by a balanced translocation in a meningioma". Oncogene 10 (8): 1521–8. PMID 7731706

While I don't quite know what all of that means, it mentioned balanced translocations and chromomsomes 11 and 22. I have a balanced 11,22 translocation so........

My friend Stephanie the originator of the http://www.c22c.com/ website and support group has forwarded this information to Dr. Emanuel herself to see if they have any information about this and if she thinks the two are in fact related.

All that being said, I'm a smidge nervous. Not like one would imagine one would be when they have been told they have a mass....a gasp...TUMOR in their brain. I don't know if it's denial or ignorance on my part (I do have a brain tumor you know?) but I am not freaking out about this. I think I have a hard time believing I could possibly have brain cancer (see it was weird typing that)? I am not sure why because I mean.....I do have a little girl that only had a six percent chance of being born and she is here soo.....

My hope is that when we see the Neurosurgeon he will just suggest a PET SCAN and then just monitor it from there. I don't want anyone poking around in my brain, I mean I really don't want anyone to mess with my sparkling personality right?

We have decided to name my tumor Edna. She is old.....as the MRI states there are some calcification's which means it's been there for a while. I intend on blaming EVERY mistake I make from here on out on Edna.....

ALLEN: Trish you started the baby's bath water but you didn't pull up the stopper!

ME: Give me a break I DO HAVE A BRAIN TUMOR YOU KNOW!!!

I'll keep you posted on Edna and I.

BELOW IS THE FULL REPORT FROM MY MRI for those that like that sort of thing:

MRI OF THE BRAIN WITHOUT AND WITH CONTRAST

HISTORY: Mass in the posterior left lateral ventricle seen on a CT of the head from 2-12-10.

CREATININE LEVEL: Creatinine lab testing was performed at Medical Imaging Center of Ocala to establish the patient's estimated glomerular filtration rate (eGFR) with the results being:
Creatinine level 0.9, eGFR 73.

FINDINGS: Multiplanar, multipsequence MRI of the brain was performed without and after intravenous administration of 18 mL of Magnevist. As noted on the CT scan, there is a rounded mass in the choroid plexus in the occipital horn of the left lateral ventricle. This mass measures 1.6 x 1.5 cm in the axial plane and 1.6 cm in the cephalocaudal dimension. It contains a small amount of calcification. It demonstrates a significant amount of enhancement and has slightly increased signal on the T2-weighted images. It also has slightly increased signal on the diffusion weighted images. It does not appear to invade the surrounding brain parenchyma. No surrounding edema. There is no hydrocephalus. No additional masses are seen. The brainstem and cerebellum appear unremarkable. Incidentally noted, there is mucosal thickening in the right maxillary and ethmoid sinuses. The findings suggest sinusitis.

IMPRESSION: Partially calcified, enhancing mass is seen in the choroid plexus in the occipital horn of the left lateral ventricle. Diagnostic considerations would include a neoplastic process such as a choroid plexus papilloma or a meningioma. A nonneopastic process such as a hemangioma could have a similar appearance. Neurosurgical consultation is recommended.

And so a new part of our journey begins....

Allen and I have struggled for the last 2 years on whether or not to have more children. When Makily was 6 weeks old we met with the genetics counselor. She went over statistics and options with us. Since I am a carrier I have a 50/50 chance of getting pregnant with another Emanuel Syndrome (ES) baby. Horrible I know. What's surprising is that they say I only have a 6-10% chance of carrying the baby to term. Basically that means that if I were to get pregnant with another ES....I have about a 90% chance of miscarriage or stillbirth. I know some would see the 6-10% chance of having another live born sick baby and say "those odds aren't that bad" but when you already have a child that has a Emanuel Syndrome it becomes more real, yes I realize it's not common BUT IT DOES HAPPEN. I no longer think "oh that will never happen to me". Those days are soooo loooong gone. I remember in the first few weeks after Makily was diagnosed I kept saying: "this is something that happens to other people....Not me". I have learned over the past 2 years that ANYTHING CAN HAPPEN TO ANYONE. No one is immune to problems, hardships and tragedy...no matter how low a statistic is, or how rare something is, bad things can happen whether you want them to or not. I know that sounds so negative and I'm really not a negative person. I guess I just have this new outlook that anything can happen, at anytime, to anyone.....good or bad really.

The thought of accidentally getting pregnant makes me nauseas. Since I carry this genetic flaw these are the risks that I would have if we were to try to get pregnant naturally.

*Miscarriage
*Stillbirth (which would send me totally over the edge having to deliver a dead baby)
*An Emanuel Syndrome child (I adore Makily but her life is incredibly unfair. She has suffered more in 2 years than most adults have their whole lives, I would always blame myself for everything that child would go through, I didn't know before Makily and there are bad days when I still blame myself anyway.)
*A child with the same genetic problem as me (meaning this child would be destined to deal with the same issues and be forced to make the same decisions I am struggling with. How fair would that be? I wouldn't wish this on my worst enemy much less my own child)
*A healthy baby (even typing those words is foreign to me. It just seems like something so far out of reach for me sometimes.)

**I am incredibly bitter than I will never be able to naturally conceive a child and rejoice in the moment those two lines appear on that test. It angers me that instead of being excited if I were to get pregnant naturally I would be filled with FEAR and terror. **

I recently brought up a scenario to Allen. It's one that has haunted me since I had Makily. I asked him "Had we found out that Makily had ES while I was pregnant, what do you think we would have done?" This is a hard topic for me because as long as I can remember I have been VERY PRO-LIFE. We discussed it for a while and Allen said he would have wanted to continue the pregnancy. I think my first reaction would have been to terminate, you see when Makily was diagnosed we were given a pretty bleak outlook. I believed she was going to live a horrible life filled with sadness and suffering, so had I been told that when I was pregnant with her, it would have scared me to death. I was a much different person back then. After much thought, conviction and discussion I believe Allen and I would have decided to carry her to term and pray for the best. I would have had a TORTURED and very sad pregnancy. I know that we would not have let them make any interventions with Makily at birth though. We would have set up a birth plan and said to just give her comfort measures, to let us hold her and love her for the time she was here and I know Makily would have slowly slipped away that night. It makes me cry just typing that. I know that Makily would not be here right now had we known............She could not have survived without all the interventions that were made. I would not have had these two years with her.
This is EXACTLY why God did not let us find out.....Makily was meant to be here.

I will admit, there have been times that I have sat next to Makily's bed in ICU crying many tears, wondering "how far is too far". How much is too much to do to her before we say "that's enough, leave her little body alone". That is another part of parenting a medically fragile child that sucks. You make decisions that no parent should ever have to make....then you constantly question yourself and everything decision you have made. I have often said "I am so sick of picking from 2 choices that both suck.....picking which sucks least is awful". Every surgery Makily has had we have always been faced with "it will fix this but may mess this or that up". Who can deal with that?
Before Makily had I heard someone talking about terminating their handicapped baby I would have been LIVID. I would have thought those parents were incredibly selfish and it would have made me nauseated. Now that I have watched Makily struggle, go through surgeries, seizures, g tubes, feeding issues, therapies and illnesses that I understand. I understand a parent wanting to save their child from the pain and suffering that their life would be filled with. I understand a parent that is so afraid for not only the future of that child but the rest of their family. I understand that having a handicapped baby does not only affect the mother and father of that baby but the entire family. When Makily is sick and hurting so is our entire family. When Makily has surgery we all sit on pins and needles praying that she will come out okay. I would never go back and change it because obviously my Makily was meant to be here, but it has been terribly hard for EVERYONE. What holds it all together is looking into Makily's eyes and seeing the innocence and purity that IS Makily. Seeing her smile and laugh makes it easier for me to keep pushing her to eat by mouth and to force her to do therapy. Knowing that despite all her problems my child is happy. She knows she is loved and she is happy and I can't ask for anything more than that.

The fact of the matter is though that Allen and I want another child. I had tried convincing myself that I could go the rest of my life not trying for more kids and not regret it.. Well I know I will always wonder "what if?" God forgive me but there are things I will never get to experience with Makily. That brings an ache to my heart that I cannot even begin to describe. Knowing I will most likely never hear Makily say "Mamma" or "Daddy" brings tears to my eyes. That being said there are things I have learned and experienced with Makily that I never would have had she been a "typical" child. Those lessons are what have made me who I am. I am incredibly grateful that God allowed me to learn those things and be Makily's mommy.

Allen and I have decided that we want to try IVF using donor eggs. We *could* use my eggs but there is more testing involved if we go that route. It would also involve discarding of any embryos that carried the same "genetic flaw" Makily has. I don't judge anyone who does this but for Allen and I it's just something we would feel guilty about. To us that is like saying we want to "discard" of Makily. This process is also not totally perfected and reduces our chances of a successful pregnancy. I figure we should bypass my eggs altogether and then we will have our best shot.
Obviously money is an issue here. I have an appeal in to our insurance company and am awaiting a reply. My argument is that if we have another ES child not only will the insurance company be forced to cover Makily, they would have ANOTHER expensive kid to cover. It would just be cheaper for them to pay for IVF with donor eggs. If our insurance company comes through and decides to pay we do not plan on starting the process until late next year.

Please pray for our family and pray for God to show us the right way.

2 words that make me sick to my stomach....

Balanced translocation.

2 numbers that make my stomach churn.

11 and 22.


These words and numbers used alone and NOT together are not a problem to me. It's when you group them together I get nauseated. I see them online or hear someone else say Balanced translocation, my heart skips a beat and I get excited, then sad. Excited because FINALLY someone else knows EXACTLY how I feel and shares this rare "fluke" with me.......Then sad because I know they have walked the same hard road I walk, felt the same guilt and self hatred I have felt, but mostly asked God why more times than they can count.

When Allen and I were trying to conceive (ttc) we had fertility testing done. I was convinced I had endometriosis or some other female disease or syndrome that would leave me infertile for life. I was mortified at the thought that I would never be able to have children. I would obsess about what was wrong with me fertility wise....before I even knew there was something wrong with me. I don't know why but I always feared not having children. I was never one of those people that went through life saying "i'm going to be a doctor, a nurse, an astronaut or even the president". I just wanted to be a mommy........okay so there was that one year I wanted to grow up and be a rockette, realizing back then that I was way to short to even be able to try out...I decided I would be fulfilled and happy being a wife and mother. (although sometimes I will do kicks in the living room to entertain Makily from time to time....JUST KIDDING...okay not really)
So after 6 months of trying my stupid obgyn told me I had low progesterone and that he would prescribe clomid (mild fertility drug). I FREAKED out. All my years of worrying and wondering what was wrong with me had come to fruition...I HAD LOW PROGESTERONE.....I knew it, I just knew something was wrong. So after reeling in depression over that diagnosis I began taking clomid. This medication made me cry all day long and want to watch Steel Magnolias and Lifetime original movies long into the night. My first month on clomid I had HORRIBLE pelvic pain and went in to have an ultrasound. Oh the joy and fun that was. Imagine holding about 2 gallons of urine while having someone press on your stomach in the midst of stabbing pelvic pain. This lady had ZERO sympathy for me and my busting bladder and actually had the nerve to ask if I had drank the 2 gallons of prescribed fluids before the test. (okay not 2 gallons but it sure felt like it) YES I DRANK ALL OF IT! Then she instructed me to drink more....I gulped down another 8 ounces and laid down for more torture. She finished that part of the ultrasound and then told me to empty my bladder....but just a little....ARE YOU CRAZY I am thinking...just a little!? How am I supposed to do that.....I feel like a racehorse right now and you want me to pinch it off!?!? So I waddled with my legs crossed to the bathroom and peed....just a little. This was torture! I lay back down on the table and she explains she is going to do a transvaginal u/s. *sigh*. For those who do not know what that is....it's basically a "probe" type device that is err.....uhmmmm inserted into the vagina. So imagine holding what is now half a gallon of pee with said probe in vagina moving around pressing on my bladder. I have never held pee this hard in my life.
So the obgyn calls with my u/s results and says I have several follicular cysts bursting everywhere. Fluid in my pelvic cavity and that it's a good sign that I am ovulating. Oh wonderful. The next month on clomid I experienced the same pains BUT they were even worse than last month and I was walking hunched over. I went back to the obgyn and he said "well you have cysts bursting everywhere and I am just missing something so I want to refer you to a specialist in Gainesville".
So off to the specialist we go. We sit down with the doctor who tells me that he can't find the lab results saying my progesterone level was low. I show it to him to which he replies "13.7??? that is not low progesterone, who told you it was low?" MY OBGYN DID, WHO DO YOU THINK!??! He then explained that my level was NORMAL and that all the pelvic pain from the previous 2 months of clomid use was most likely caused by ovarian hyperstimulation. (I matured too many eggs at once) His advice was to try for another 5 months. If we wanted to do some very preliminary testing such as genetic or hormonal that we could but he felt we should wait another 5 months. I agreed and besides my hormone levels were fine and genetic testing...sheesh I don't have any genetic problems, I didnt even think twice about it.
I had a few other procedures with my NEW obgyn and even had a laparoscopy that was normal. Finally I was starting to think that all my worrying and wondering was for nothing. I was NORMAL, I needed to stop stressing and I would get pregnant.

Finally I did.

After 15 months of trying we found out on Allen's birthday I was pregnant. HOW EXCITED AND BLESSED I FELT!

Fast forward through a very normal happy pregnancy and very normal ultrasounds.

I had Makily and the MOMENT I saw her I KNEW something was wrong with her. I knew it was bad....I just didnt know what. They diagnosed her with trisomy 22 when she was 6 days old. They werent sure if it involved another chromosome but they said it may involve 11. I asked how this happened and it was then that it hit me....I knew. This was what was wrong with me all this time. The thing I had brushed aside and never gave much thought too....genetics. The doctor told me it could be a fluke and just one of those "things that happen". OR that Allen or myself could be "carriers". He explained that if one of us was a carrier it is possibly the reason why it took me so long to get pregnant. Most trisomy 11 or 22 babies are miscarried early on before you even know you are pregnant.
My heart was sinking fast. Taking in that Makily would be severely handicapped in EVERY WAY, being told they werent sure of her life expectency and then BAM......now it may be something you passed down to her......you did this to her. It was too much for me to take and I was so angry. I hated the world.

They took our blood to test Allen and I the same day. I got into a fight with the lady at the hospital lab because she was a raging B*tch and was very rude to me, she was confused of what test was being ordered and instead of calling upstairs to the doctor...she took it out on me and talked to me like I was a 5 year old.....I had enough that day. I told her if she had any compassion or had any brains she would know that the testing we were having was LIFE ALTERING and that I had a baby in the NICU and I didnt need her crap!! I ended up telling her she WAS NOT touching me or drawing my blood and then breaking down into hysterical tears. We got the blood drawn by a nice man that was there. The lady did get in trouble I don't know what kind but I know she was reported.

A week later I was walking into the NICU to see Makily. She was having her g tube surgery that day. She was 3 weeks old. I was at the "scrub station" and I saw the geneticist walk in. He came up to me and said "Caldwell right?" I nervously said yes and he said "oh well I got your bloodwork back". My heart is pounding now....what is he going to say, surely if it's bad news he wouldnt tell me here in the hall by the scrub station. Just say it.....SAY IT! He said "you are a carrier...if any of your family members are of children bearing age they should be tested too". With that he walked away.
So now I am standing there realizing that all of Makily's problems were genetically inherited and linked to a crappy gene I gave to her. Knowing that if Allen and I have any more baby's that they may be just as sick or sicker than Makily. Even worse they may die soon after birth or be still born. I slowly walked to Makily's crib, I picked her up being careful not to pull any of the tubes and wires attached to her. I sat down in the rocking chair with her, held her tight and cried my eyes out. In between sobs I told her how sorry I was that I did this to her. That I would do everything in my power to make it up to her.....to make her life the absolute best it could be. I was so damn sorry.
There were days upon days that I hated myself. I hated the world, I hated normal people. Happy people made me sick. People with healthy baby's made me angry. Pregnant women made my skin crawl. I would sit on the shower floor crying and screaming at God. Why would he do this to me? What kind of God would play such an awful cruel joke. I had begged him so long for a baby and so he sends me a sick one....then makes it my fault that's she's sick to top it all off. What had I done so wrong? This was the darkest time of my life. I had suicidal thoughts, horrible thoughts that scared me. I wished I could run away and live on the beach by myself. Maybe if I ran far enough away from my problems they would vanish. I imagned myself driving the car off of a bridge. Life no longer made ANY sense to me and I didnt sign up for this. I now had a handicapped child AND could not have any more children. Well I guess I could but taking that chance make me sick. I just couldnt be faced with the decisions that I would be faced with or deal with that. I remember I couldnt even watch TV without being sickened by the meanless shows and stupidity. None of it mattered or made sense to me anymore.

They say that time heals all wounds. I tend to agree, but some wounds leave bigger and deeper scars then others. My balanced 11,22 translocation is my "big scar". I will never truly be over the fact that I have this "weird thing" that most doctors don't understand. My heart will ALWAYS long to carry another baby in my tummy feeling it kick and grow, knowing that my body formed that child and protected it from all harm. I will never be able to get pregnant naturally without being a total basketcase fearing that my baby may have to go through all of the things Makily has gone through....or that it may die.....or worse that I may be faced with the decision of if that baby would be better off in heaven than here with me. I pray that one day God WILL allow me to have another child. A brother or a sister for Makily that will adore her and that Allen and I can love as we love Makily. That is my dream, we will see what the future holds.


Only God knows.

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.

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.