Our Story.

I got this idea from CONFESSIONS OF A CF HUSBAND. If you haven't visited their blog, I highly suggest it. Their family is such an inspiration. They have been through many trials, life and death situations and in the end they always pull through with amazing faith. It's yet another blog where they are brutally honest and I like that about them.

This entry will be a "reader's digest" version of our story up til now. It is intended for new reader's who come to my blog and don't know our whole story. I have gotten a few negative "anonymous" comments lately and I feel like part of that is because people are coming here and not fully understanding where we are and where we have been. . Let's face it, to go back and read all my entries would take FOREVER and who has time for that?

I will update this as time goes on.

Without further ado:

Our Story

My husband Allen and I got married September 10, 2000. Allen put me through school to get my Medical Assisting Certification in the first year of our marriage. I graduated and immediately began working in Dr. Pierre's office. She is a pediatrician and now considered a part of our family.

In May of 2002 Allen and I began trying to conceive. I was taking my temperature every morning, tracking my ovulation and using ovulation predictor kits every month. Six months went by and I was still not pregnant. Deep down I knew something was not right and was becoming frustrated.

I went to my OBGYN who did some preliminary testing. I was told that my progesterone level was low and that if I did get pregnant I would likely miscarry early on, possibly so early on I wouldn't even know I was pregnant. I was prescribed Clomid to enhance ovulation and give my progesterone level a boost.

I took Clomid for two months and I had MASSIVE abdominal cramping during ovulation both months. An ultrasound revealed I had several eggs maturing and there was fluid in my abdominal cavity......a sign of ruptured follicular cysts. I had ovarian hyperstimulation from the Clomid (my ovaries reacted strongly to the medication and it caused me to produce MORE eggs that were likely not mature enough to fertilize). My OBGYN told me to stop taking it and referred me to a Fertility Specialist.

The Fertility doctor examined me and said that my progesterone level was NOT low and that we should just keep trying. I was very upset as I had taken Clomid for two months that I did not need. This explained the hyperstimulation from it as my hormones had been fine after all.

I changed OBGYN's and he ordered a Hysterosalpingogram. This is a test to make sure your uterus and fallopian tubes are open and normally formed. It was painful but the results were normal. In June 2003 my doctor did a Laparoscopy to evaluate me for possible Endometriosis. He found that my reproductive organs were "pristine" (his words not mine!). I had one tiny adhesion on my left ovary which he easily removed.

In Early July of 2003 I contacted the fertility doctor again. I set up an appointment for August for genetic testing on Allen and I. This was really the only test we had not done and the Fertility Doctor required it before moving on with any assisted reproductive procedures. Once that came back normal we planned on having an IUI late in late August.

Well as always God's plan was different than ours.

On July 25, 2003 (Allen's birthday) we found out I was FINALLY pregnant with Makily.

WE WERE ELATED.

There was no need for the genetic testing so I canceled the appointment with the Fertility Specialist.

It just took us longer to get pregnant was all...or so I thought.

We found out we were having a girl and I was THRILLED. We painted her room pink and I bought TONS of dresses. All of my ultrasounds were normal. No problems were seen and we were planning on having a "six or seven pound healthy girl". At 28 weeks I asked the midwife when I would have the triple screen to look for genetic abnormalities with the baby. She looked perplexed and said "Didn't Dr. X order it"? I told her he had not and I was not sure when it was to be done as this was my first pregnancy. She explained that at 28 weeks I was too far along to do the test. She said the results would be inconclusive. I was young and had nothing to worry about she told me. She said the chances of my having a baby with a genetic problem at my age were very slim.

So I didn't worry.

Makily was born three days before her due date. My labor lasted for 48 hours. The morning of the second day I was admitted to the hospital and they broke my water. They discovered that Makily had a bowel movement and we were told it was nothing to be overly concerned about. The nurse said she would just need to be suctioned extra at birth. We were very uneasy about this and so we called Dr. Pierre. She said she would attend the birth and to call when I got to the pushing stage, which we did. I vaguely remember seeing her walk in while I was pushing Makily out.

Makily was born at 8:07 pm on April 1, 2004.

She weighed 5 lbs 10 oz and was 19 inches long.

She was also in severe respiratory distress and limp as a rag doll.

I thank God to this day that Dr. Pierre attended her birth. I do not think she would have lived otherwise.

Minutes after Makily's birth I noticed some extra skin on her cheek. It looked much like a flesh colored mole. We were told it was a "skin tag" and that she had a few more along with a cleft palate.

I knew at that moment something was terribly wrong.

Makily was transferred to a level III NICU 30 miles away within an hour or two of her birth. She had severe pulmonary hypertension secondary to meconium aspiration.

Genetic testing was immediately done due to the skin tags and cleft palate.

She was sedated and on a ventilator the first eight days of her life. We could not even touch her during this time. Her heart would RACE and her oxygen levels would plummet. She could not handle ANY type of stimluation or stress. One day we came in and they had draped a cloth over Makily's eyes and taped cotton balls in her ears. Even in a drug induced coma the sounds of other's babies crying and the beeps of the machines was too much for her brain to handle. I remember thinking that must mean something but I didnt know what.



When she was six days old Makily was diagnosed with Partial Trisomy 11,22 which is now more commonly known as Emanuel Syndrome.

The world stood still as the doctors explained that Makily would be severely mentally and physically retarded. The picture that they painted was that Makily would likely be much like a "vegetable". We were not given much hope of Makily having any kind of quality of life.



I wanted to die. All the dreams I had made for Makily disappeared in that moment. I can't describe the emotional pain of that. I would not wish that on anyone. I felt like my heart had been ripped out of my chest. I would never laugh or smile again. My life was over. How was I going to go on like this? How could I stand by watching my child suffer knowing there was nothing I could do to help her.

A week later a blood test on my husband and I showed that I am a carrier of the 11,22 balanced translocation which caused Makily to have Emanuel Syndrome. All along our reproductive problem was due to my genetic flaw. Typically babies with Emanuel Syndrome are miscarried very early on. Like my original doctor had said I would have miscarried before the embryo would have even implanted......before I would have even known I was pregnant....my hormones had nothing to do with it though.

What I find extremely ironic is that had I not gotten pregnant in July, we would have had the genetic testing THE VERY NEXT MONTH that would had found my translocation. Just a few more weeks and we would have likely decided not to try to get pregnant naturally any more.

Makily was definitely meant to be here.

Makily stayed in the NICU for a month. She had a g tube placed at three weeks of age as she did not have the coordination or strength to suck enough to gain weight. The cleft palate coupled with Pierre Robin Sequence also made oral feeding even more difficult.

Once we brought her home Makily screamed and cried the entire time she was awake.

Nothing soothed her.

We tried EVERYTHING.

Dr. Pierre switched her formula to Alimentum. We assumed at this point she had horrible colic.

At six weeks of age an upper GI revealed she had MASSIVE reflux and trace aspiration when oral feeding. The reflux was surprising since a Ph probe had been done the day before the G tube was placed and it was NEGATIVE. We were told to stop orally feeding Makily as she was at high risk for aspiration pneumonia.



Medications were tried to control the reflux to no avail. Makily continued to be extremely fussy and inconsolable during this time. Allen and I were incredibly sleep deprived and on top of that I was dealing with Post Partum Depression. I had an incredibly hard time adjusting to "Our New Normal". It was not the life I had planned for our family and I was deeply mourning that loss. This was not the happy, normal life I thought it would be.

Finally when Makily was three months old the doctor decided to do a Nissen Fundoplication to stop her reflux. The day before the surgery she had a gastric emptying study to make sure her stomach was emptying properly. It wasn't. Her stomach emptied VERY slowly, it took more than five hours to empty two ounces. Normal for a newborn was 30 minutes. We fed her every two hours during that time and so she was still full from the previous feed. No wonder she screamed constantly. They also decided to do a Pyloroplasty help her stomach empty more efficiently. She spent two weeks in the PICU. While she recovered well from this she had some respiratory scares the first night out of surgery.






We were in and out of the hospital much of the first year of Makily's life. Typically for g tube malfunction problems or pneumonia. At one point she was overdosed on narcotics by an inexperienced resident doctor.





She almost died that night and this was not the first or last time we have almost lost her.

Makily had a Grand Mal Seizure in the middle of the night June of 2006. She had been on seizure medications ever since. To this day we do not know why she had that seizure and none before then. The doctors believe she is at higher risk for seizure due to a few brain malformations she has. In July of 2007 she had a heart catheterization to repair several holes in her heart. She recovered very quickly from this and has done well ever since.

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Makily began Pre-K last year at age three and is doing VERY well. She is a happy little girl whom I have watched claw her way back from the brink of death. She truly is the STRONGEST person I have ever known. Her smile will light up a room and her laugh is known to make an entire room go silent just so everyone can hear it.

She has pure joy.

Makily is able to sit and and stand up. She can't talk but she knows how to get what she wants. We have started using a PECS board for communication and she does well with that. We pray that one day she will walk. She is 100% G tube fed although we do give her tastes of things and try to get her to eat. It's an uphill battle.

When Makily turned three Allen and I decided we would foster to adopt. Due to my genetic problem we are at risk of having multiple miscarriages or another child with Emanuel Syndrome. Adopting was too expensive ($20K) for us as we know Makily is going to require life long care, we worried about having a loan for an adoption looming over our heads. IVF was also out of our reach financially. It is also not perfected for people with genetic conditions like mine and so the success rate is pretty low. We couldn't see spending that amount of money on something that was more likely to fail than not.

We began the process to get our foster parenting license in April of 2007. Due to issues with staffing at our agency it took a year for us to get licensed. WE received our foster license in the mail in April of 2008. Our first placement call was on May 2, 2008. It was for a four month old baby boy that for blog purposes we call "Little J".



It wasn't long after "Little J" came to live with us that we decided if it was possible we wanted to adopt him. We love him like he is our own. Fostering to adopt is not without many unknowns and his "case" has been up and down many times. At the time of this writing "Little J" has been with us for nearly six months. Things are very much in our favor for now but we realize that can change at any moment. However this turns out though we just want what is best for Little J. To know that he is safe and loved no matter where that is, although we pray it is with us.


We have had one other placement since we became licensed. "Snuggles" stayed with us for five days until they could find a more permanent place for him.


Right now we are only licensed for "one child age 0-2" but we are willing to take other little ones for respite or longer once "Little J" is older.


So that's Our Story up to now.

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