The past ten months have been in many respects a time of great joy and great trial! Having been blessed with a new child on the way, our already large blended family, was a bit apprehensive as to how this new addition would change our family. Little did we know that not only would she bring the basic everyday challenges that come with adding a new child, she would also bring the joys and stresses of a child with special needs.
From the time of her conception, which occurred after having my tubes tied, lol, until the morning of her birth I can say nothing followed "normal" guidelines of pregnancy. I had, prior to conceiving her, five normal pregnancies. Our life was already very full with six children from our first marriages and one little ball of fire that we could call all our own. It was somewhere around his seventh month of life that I looked at Don and said something isn't right. I have gained weight and I just feel funny. He was funny?...like funny how...I said funny like pregnant...which we of course had a good laugh afterwards. However, I couldn't let go of the feeling that despite having had my tubes tied after the birth of our son Connor I felt as if I was pregnant. So, at the beginning of December I decided to take a pregnancy test just so I could later on laugh and say gee you are paranoid!!! I am glad to say that day I did rule out paranoia and instead ruled in OH MY GOD...I am pregnant again! My first thought was how on earth will we tell the kids....
I finally found a doctor that was compatible with my insurance and made an appointment for the first week in January. By this time said paranoid weight gain had started to move and I knew that we had very little time before our next bundle of joy would appear on the scene. I went to a normal Obstetrician not thinking that there were any unusual issues. After completing an ultrasound to try to determine what this child's due date was we began to suspect that things were just not right. We found out immediately that we were expecting a baby girl which in and of itself was exciting as the girl's in the house were seriously out numbered.....five boys to two girls! I knew that would at least lessen the blow for the girls.
The doctor said to me that the head didn't seem to be in proportion to the body and that usually indicated some severe mental retardation issues or something that was causing the body to be starved while trying to maintain growth to the brain. We were sent to a high risk OB that ordered another ultrasound and felt there were possible issues with the kidneys as well as her being a very small child. His recommendation was to send me to University of Wisconsin-Madison's Hospital and have a Four D ultrasound done by an OB that does nothing but look at high risk pregnancies. Her determination was that all of my doctor's were paranoid...seems to be a common theme in this pregnancy...and that the due date just needed to be changed to a later date. Leaving her office that day I felt a great sense of relief. They did recommend because of my "advanced maternal age" that I have regular stress tests during the last couple of months of my pregnancy. This was completed in February and her new due date was now felt to be April 22, 2008.
Chloe Girl as we had at this point started calling her was proving to the whole world that she was not going to be listed as typical or normal in any way. She was breach at one doctor's appointment and engaged the next. I could literally feel her turn herself around inside of me. I would go in and see Dr Maenner and say she's breach again, so he would take his portable ultrasound machine and say yep...you are right. Finally when we felt we had her locked in the engaged position, sounds like a mechanical term, we set the date for induction as we felt she would not last until the 22nd. So April 15th would become her due date.
Sure it would....Saturday April 12 started out as an average ordinary day. As the day went on I began to feel strange. Chloe Girl wasn't moving as much as she used to and I just felt achy all over. I had never just gone into labor by myself, one of my children being three weeks overdue before induction, so I had no thoughts that I would go early on my own. I was scheduled for another stress test on Monday so I thought well maybe they will just decide to induce me then. As a precautionary thing I decided to pack my bag that day just in case. We tucked our, at that time, 11 month old Connor Boy in bed and hit the sack at our normal time of about 11 pm. At about 4 am Sunday April 13 I was yanked out of my sleep by an enormous contraction. I rolled over and said to Don I think I am in labor. He said, in his sleep, you can't be. Isn't it funny how hubby's become doctors in their sleep. Four minutes later...boom...another hard contraction. I laid there thinking ok that just can't be. Four minutes later a third one. By this time I am thinking great I am in labor, its the middle of the night, we have a sixteen year old and nine year old asleep in the other rooms...neither of which have any real experience with babies and an 11 month old with no one to go to. My seventeen year old daughter, with lots of baby experience was with her father. I was scheduled to be induced three days later when there would have been plenty of help around, lol!
So I wake Don out of his sleep, we throw stuff together for Connor, warn the sleeping kids of what is going on and off to the hospital we go. We get about five miles from home when out in the middle of nowhere a deer jumps in front of us and yep...we total the deer and our vehicle. We have to limp this vehicle home with my contractions three minutes apart and get another vehicle which wouldn't you know it was low on gas thanks to who we will not say at this time, lol!
I quickly call our OB to warn him we were on our way as he handles all his own patients and he tries to convince me as we are forty minutes from the hospital to pull over and have an ambulance come to pick me up. I don't know about most people but I can't see myself giving birth along side the road or in an ambulance. So, after stopping for gas with my contractions two minutes apart off we go again.
This whole ordeal started at approximately 4:20 am and ended in one push at 6:20 am at Divine Saviour Hospital in Portage, WI. Upon birth her apgar scores were originally very low and for an entire hour all I could do was sit across from her in the room and watch as they worked on her and tried to stabilize her. Meanwhile Daddy and little Connor who had the privilege of seeing his baby sister being born were trying to nap in the room we would be moved to. Eventually she was deemed ok enough to be given to me. So an hour after her birth I was able to finally see the red hair that her daddy and the doctors proclaimed to me that she had. I have to admit I was shocked as none of my kiddos had hair at birth and no one in our immediate family had red-hair. I remember thinking to myself what a beautiful little girl...she looked just like a porcelain doll. She was perfect.
As the day went on her breathing became labored. I brought it to the attention of the nurse and the pediatrician decided she was in need of oxygen. Back to the nursery and under an oxygen hood she went. As the evening and next morning went on she did not improve and the decision was then made for her to be moved to Meriter Hospital NICU in Madison. I know there are many parents who have had to watch their child loaded up in an ambulance and taken away and I know that you are well acquainted with that sinking feeling that you get when they close the doors and in the pit of your stomach you wonder if you will see them again. Our little 5lb 11 oz girl, with her brilliant red-hair was put in the care of strangers.
Thankfully the pediatrician that was her primary doctor at Meriter came down in the ambulance and rode with her. We were very thankful for that as we were able to meet him later upon arriving at the hospital and he gave us a great deal of assurance as to what her situation was and that they would get her on the road to recovery as quickly as possible. After all the testing they completed at the hospital they determined she suffered from something that some smaller newborns get called TTN...Transient Tachypnea of the Newborn. After forty eight hours she was much better and on the third day of NICU we were released to go home. For all intents and purposes we felt we had a tiny but perfectly "normal" little girl and life was slowly returning to normal.
The month of May and most of the month of June were perfectly normal. She was a finicky eater and could only seem to handle a small amount of food out of preemie bottles but she was growing and looked as healthy as can be. On June 20th, after spending a day of shopping for our older kids, getting them ready for summer time activities, we came home and settled in for some relaxation. After removing Chloe from her car seat and feeding her she had what I now know to be a seizure. I had never seen a seizure before so I wasn't quite sure that was what it was so I called my pediatrician and she assured me it was probably nothing. The next day was a Saturday and later in the day she once again had one of these "episodes." Then again in the middle of the night, early Sunday morning. I called the pediatrician and she said oh its probably nothing bring her in tomorrow. By this time I knew this was not just nothing and I wanted answers. I called around and found the name of a different pediatrician. I called immediately Monday morning when her office opened and she fit us in. After explaining to her what was going on she called a pediatric neurologist and they started the ball rolling with diagnosing what these "probably nothing episodes" were. I have to say that we were blessed beyond measure that day when we found Dr Andrea Chao. She has been there repeatedly for us as we have struggled to determine who this little girl we were given is and the many challenges she faces.
On June 25th she went in for a sedated MRI. She did very well with the tests. Later that day we went for an EEG. All of these tests were then submitted to Dr Mary Katherine Dominski. We saw her two days later in her office. She at that time told us that Chloe had a condition called partial Agenesis of the Corpus Callosum. This condition explained her seizures, her developmental delays, and her feeding issues. Having been knocked for a loop by this diagnosis we at least had an explanation for her seizures and could come up with a plan of action for our little peanut. She was placed on Keppra for her seizures and those were quickly put under control.
Chloe was enrolled in the Birth to Three program. She received speech/feeding therapy as well as OT/PT. Things seemed to be progressing. I can not say enough about how wonderful our Birth to Three program is. I know Chloe would not be where she is today had it not been for the excellent services they have provided for our family. Not just through her therapy, but their support of our family as well.
In my research of this condition I came to realize that these kids were rarely ever just diagnosed with ACC. They almost always had a myriad of other syndromes. In the process of determining what else might be plaguing our little girl she stopped growing and then eventually the first week in December she stopped eating. We were scheduled to see a geneticist in January to figure out what her issues could be. This issue of not eating brought the geneticist into our life much sooner. When we were at American Family Children's Hospital in Madison, WI she was seen by a variety of specialists to try to determine what her overall health picture was. The geneticist originally felt that she exhibited signs of Prader Willi Syndrome. That was a very scary diagnosis for us. He would not put his complete weight in this diagnosis until he had the tests results. Thankfully they ruled out PWS very quickly.
We went home after she started eating again and anxiously awaited the results. December 19th I received a call from Dr Rice's associate stating they had the results of Chloe's tests. The FISH test had revealed that she had a genetic deletion in her first chromosome. This also happened to be the worst snow storm we had up to this point in the year so she suggested we meet on Monday for the formal results. Anyone that knows me knows that I was not going to wait that long. After discussing the situation with Dr Greg Rice from the Waisman Center he agreed to meet with me that afternoon. He sat us down and proceeded to tell us that she had what was called 1p36 Deletion Syndrome and began to explain what it was. I can honestly say it was like I was there listening to the situation but time had stopped and all I could think of was the day she was born and all the hopes and dreams I had for my little red-haired girl, vanishing.
Since December 19, 2008 life has changed drastically. I have since found the most amazing group of people that not only can sympathize with me, but have also walked the same path that I have. When I need a shoulder to cry on they are there...if only through the computer, lol. I have to say that I never thought I would go on a site like Facebook, but have come to realize that my daily connections with the other 1p Mom's is crucial to maintaining sanity.
In the past couple of weeks we have had to make a very tough decision as a family for our little Chloe Girl. After catching a respiratory illness on February 6th and battling through it over a very long weekend we decided to admit her into our local hospital. At this time she once again stopped eating and due to not eating along with the illness her weight dropped from an already very small 14 pounds to 11 pounds. We had been struggling with whether or not to have a g-tube placed. It became apparent to us that she needed this more than ever. She could not take fluids of any kind to include her medicine. So on February 12 we transferred, once again, our precious little cargo to a different hospital by ambulance. Thankfully, this time I was able to ride along side her the whole way.
Chloe had started experiencing some strange head movements so upon arrival at St Mary's hospital in Madison not only did they place an NG tube for feeding they also attached her to a 72 hour video EEG to see if they could find a cause for these movements neurologically. Of course, she had none of the strange movements again until after they removed it on the third day...what can I say she is a handful! She quickly started gaining weight with NG feedings and we managed to have only one incident of her pulling the tube out. Friday February 13 Dr Yaffe, the gastroenterologist, came to see us and said that it was his plan of action to have the tube placed on Tuesday. We discussed in length the pros and cons and having seen her dip so dangerously low in weight we knew we needed to do something to help her receive the proper nutrition she had to that point not been getting.
We spent an uneventful weekend at St Marys. Her weight continue to go up with the NG feedings. Her virus continued to subside and she no longer needed any type of assistance with breathing. Sunday morning Feb 15th Dr Yaffe informed us that he wanted to do the upper GI as we had been moved up to Monday and they needed to check her out before placing the button. She sailed through that with no issues and again the rest of our Sunday was uneventful.
Monday morning Feb 16 the nurse came in at 8:00 am and said its time to go Mom. I was allowed to carry her to the PICU on the floor and hold her as they readied all their needed equipment. Dr Yaffe, Dr Go, the pediatric surgeon and Dr Benson entered the room. Dr Benson, the pediatric intensivist, administered the anesthesia with me right there holding her hand and rubbing her head and off to sleepy land she went. They suggested I go get a cup of coffee and relax and they would let me know when she was done. I went to the patient/mom kitchenette and found that there was no coffee, brewed a pot quickly and got a cup of coffee. I started back to the PICU to find them all coming out saying she's all done you can go on in.
I walked in and saw my poor little peanut still completely passed out from the anesthesia. Her new little button in place and her hair still sticking straight up from the EEG leads they had yet to remove from her head. She was so tiny and looked so vulnerable, but at the same time there was tremendous peace knowing that we could now give her what she needed. The proper nutrition to ensure better growth and a higher chance for development.
For a long time I saw the placement of the button as failure. Now having been home for a week and seeing how much improvement has already taken place I can say that the only failure was in not doing it sooner. She now weighs more than she ever had before. Seeing how much better her skin tone is and she isn't struggling to just get enough food in her to survive has been a blessing beyond my wildest imagination. One wise mom said to me, as I made the comment that there is something inherent about being able to feed your child that makes you feel as if you failed to have to resort to these measures, my dear you are feeding her in a way that it takes a stronger special mom to be able to do. I don't know if I see myself as stronger or more special than any of these other moms but I do know I see myself as wiser than I was. Its amazing at how much she teaches me everyday about being a mom.
Please stay tuned for more updates on the Life and Times of Chloe Girl...
