Hi Everyone! I left off with day Kailey came home and that's where my Journal ended so I am going to try to continue the story from my memory. After Kailey came home we enjoyed Christmas with her but it was hard for family to understand that she could not be passed around and hard for me to say it, and even more difficult to ask whoever it was that wanted to hold her if they had washed their hands but I had to do what I had to do to keep her safe. Shortly after Christmas 2006 I came down with a terrible case of bronchitis and tried so hard not give Kailey anything. The heart medication she was on caused her to have a cough. Little did I know that the cough had turned into a cold and not long after pneumonia. We went to the Doctor who sent us straight up to the emergency department to have an x-ray of her chest and her oxygen levels checked. It was not good, the x-ray showed alot of fluid in her lungs and her o2 levels were pretty low, so she was admitted to the hospital for 5 days and again I felt like a failure that I couldn't keep my baby safe. That was the first time, Kailey ended up having pneumonia 4 more times over the course of the next year and many more stays at the hospital and each and every time we came home she had an array of new medications. It killed me to see her that sick yet she was always smiling. It seemed that although she was just a baby she never let the bad stuff in, it was and still is an inspiration to me.
When Kailey was 6 months old we went back to the Doctor who notice that She didn't make eye contact with anyone not even me, so we had to work at everyday so that Kailey could learn how to talk or babble as they say. I would have to hold her head and force her to look at me and make eye contact. It took a few months but Mike and I were persistent and she finally stated to make eye contact and babble. Also at six months we were still having to wake her up every three hours to feed her to ensure she was gaining weight as she was still very small for her age. Along with the all the meds that we had to giver every 8 hours and the feedings we were starting to get worn out and decided we needed help. I was given the phone number of a place here in town called the Lansdown Children Centre to call, they provided free services such as Physio, Occupational Therapy, Speech and Language and all other kinds of things to parents of children with Special needs, even though we didn't have diagnosis they took our referral anyways we went on a waiting list.
It would be a few months later that we started with the services. Right now Kailey has physio and O.T once a week and a few different classes that we attend. She also has a Child development worker that comes to the house every two weeks and a speech and language pathologist.
April 30, 2007 we finally had a Diagnosis for Kailey she was almsot 7 months old. We went to London to the gentetics clinic to see her metabolisist. They told us Kailey had a genetic disorder called 1p36 Chromosone Deletion. The only information they had for us was a small print out from the internet that basically told us nothing. That same day Mike and I were both tested for the "defect". It would be 2 months later that we would find out neither of us were the carriers and Kailey was a Fluke, it happened out of the blue. The day we found out I went home and cried. A little relieved to know what we were dealing with and very scared to know what we were dealing with. I went on the net to look up everything I could on it and all the web sited had little or no information on it. This is what I found:
1p36 deletion syndrome is a chromosome disorder that was described for the first time in the late 1990's and early 2000's. The Diagnosis frequently requires confirmation by FISH test, a technology of molecular analysis that only became widely available in the mid 1990's or array-CGH, an emerging technologyPeople with the syndrome have lost a small but variable amount of genetic material from the end of the short arm of one of their chromosome 1's. Their learning and physical developments are affected in relatively predictable ways. Most of the clinical difficulties are probably caused by the presence of only one copy of a number of genes. However, a child's other genes and personality also help to determine future developments, needs and achievements.There are certainly people with 1p36 deletion syndrome who have not yet been diagnosed. The disorder is now believed to affect one in 5000 newborn babies. If this is correct 1p36 deletion syndrome is one of the most commonly observed chromosome deletion disorders and over 900 babies will be born with it every year in the U.K and the U.S ( Currently no Canadian studies are available) Somewhat more girls appear to be affected then boys by a ratio of 38:23 in the largest study.

November 15, 2006: Today one of Kailey's nurses, Mary told me some very excititng news. Within the next few days I can finally bring Kailey home!!!!!!! I was ecstatic, and started crying. Today is my mom's birthday and I am so excited to call her and tell the news she will be so happy to hear that. Tracy came up for a visit today and brought up my niece Sarah, what a cutie and she has grown so much in the last month!
November 16, 2006: We sat down with Doctor's today and they have agreed that Kailey is well enough to go straight home. The pharmacist came up to our room today with a list of all the medications Kailey is going to need. Needless to say I was bit overwhelmed and I started to feel scared that I wouldn't be able to take care of my own baby. I cleaned and packed up my room at The Ronald McDonald house, wow it's amazing the amount of stuff a person can accumulate over a month! Mike is coming up tomorrow so we can take her home together. I called Angie today to let her know that I would be able to be at her wedding on the Saturday! OK so back to the medication. Kailey will have to be on a heart medication called Captopril every 8 hours to keep her blood pressure under control and since they don't make the dose small enough I have to cut the pill in half and place in a tube with water, shake it until it dissolves then measure out the dosage. She also needs to be on a protein called Carnetine which is also every 8 hours and sodium chloride 2 twice a day she has one more med called Lasix that makes her pee and she will need to be on that 2 times a day it will help keep some of the fluid out of her body. The pharmacist gave me a chart with everything on it and labels that had matching stickers for the syringes. Also they sat me down and told me all the warning signs to look for and gave me the pager number of the on call cardiologist just in case. I was told to make an appointment with my family Doctor the following week and had all our follow-up appointments booked.
November 17, 2006(32 days old): Today is the big the day!!!! I went up to the hospital early and put Kailey into her coming home outfit, my God does she ever look cute. The nurses came in a gave us some formula and bottles to take home with us so that we would have enough until we could get to the store to by some. The also gave us an extra soother in case we lost one because Kailey loves her soother! I went to the pharmacy to pick up all the meds that were ordered and walk out with a shopping bag full of stuff( scary) We waited all day for someone to come and discharge us, Finally at 3pm the papers were signed and the nurse checked out her seat belt and we were good to go. I sat in the back seat with her while Mike drove home carefully as we had precious cargo with us. The drive home felt like it lasted forever. As I sat there is the car I began to worry that our dog Noble would not be to happy that after a month of his mommy being gone and then showing up with a new baby would react. Noble our dog, was so excited to see me that he peed all over the front door, and he didn't even notice Miss Kailey sleeping in the car seat. That night after we arrived home we headed over to the Church where Angie and Ken were getting married the next day for a rehearsal, we brought Kailey with us and everyone cooed all over but I wasn't allowed to have to many people hold because of the excitement her heart couldn't handle it and she would start to turn funny colours. So we finally arrived home that night and it took me an hour to prepare all the medications and her bottle and then another hour to give it to her, and then I had to wake up 3 hours later to feed her. So I didn't get much sleep that night. The next morning I had to leave Kailey with Mike so that I could go and get my Hair and make-up done for the wedding and get pictures and things done. Mike's parents were going to Watch Kailey for a bit that night. But I think they to were overwhelm with all of the different medications. Anyways long story short the wedding was awesome and went back to pick Kailey up and we had a great night. But she does not like to be woken up and we have to do it 3 times a night.And thus concludes all of the journal entries I have from Kailey's time in the hospital. But don't worry the story doesn't end there, stay tuned!

November 1, 2006: Kailey was moved up from Critical care to the constant care nursery, the difference is, instead of one nurse per baby there is one nurse for 2 or 3. She is now on the 7th floor of the hospital and has been doing extremly well. I now get to do all of her diaper changes, feedings and baths. It's amazing what I would have taken for granted had we been allowed to just come home. I have such an appreciation for the small thing now. Everything happens for a reason and I believe that kailey was sent to me to teach me.
November 2-8, 2006: Kailey is now wearing all of her own clothes now and is up to 5lbs 8 oz. Way to go Kailey! She makes the most adorable faces that I have ever seen. Her Auntie Tracy has come to visit with us, I am always so happy when she does! Mike came up for the weekend and the first night he took Kailey in his arms and he held for for almost 2 hours, he missed her so much. The Doctor's are hopeful that soon they will be able to tell us what is going on and how to fix it. As of right now what we do know is that Kailey has an enlarged Heart and an extra valve that connects the right chamber to the left chamber and pushes fluid into her lungs. She will eventually need surgery to repair it. Kailey also has 3 holes and a heart murmer. The Doctor's have explained to me the Kailey was IUGR: In Uterine Grow Reduction. My placenta had an infection and she was not getting the nutrients that she needed which is another reason she was born so small. I can't even begin to tell you how guilty I feel right now and everyone keeps saying that there is no way this is my fault, but she was in my belly for 9 months I should have been able to protect her. And we don't have any answers yet so how can I know for sure it wasn't me?
Noember 9th, 2006: We have been moved out of Constant Care to a regular room, Kailey is doing amazing, she can almost eat 2 oz out her bottle but the NG tube is still in so hopefully soon if she continues to feed well it can come out. My mom finally went back home for a rest, she really needed it, so I am up here by myself now but I talk to Mike everynight on the phone and my sisters to. Our family has been a great source of strength for me. My c-cection is finally starting to heal and the nursing staff no longer have to come every day. I am still on Antibiotics but feeling so much better now. I have stopped pumping breast milk becuase I am just to tired, stressed and I am not even pumping enough for her to drinks a 2oz bottle it has to be supplemented with formula anyways. I feel like such a failure right now.
Mike's mom has come up to fit me for my Bridesmaid dress. I am supposed to be in Angies wedding next week and I have no I dea if I will be able to make it. I have already missed all of her showers and the Bachelorett party, some friend I am. Angie has been so good about it all and comes up to visit every week or so to see how we are doing

October 28, 2006: Michael came up for the weekend and we had Kailey Baptized by Father Blondie. Kailey was still on the c-pap machine so we couldn't put in her a gown but the hospital had a nice lace cloth that we were able to place over her. All of our families were there and Mike's mom Grandma "B" brought up a cake that said Congratulations Kailey and we gave some to the staff that was on that day. Kailey was so good the whole ceromony she didn't cry once. Father Blondie gave us baptizimal certificate and we all went out for brunch. It was actually really nice. A little later on the day Kailey was able to come off the c-pap machine and was just on oxygen nasal prongs. She is a little more pink and looked so much better from the previous 48 hours.
October 29, 2006: Kailey is starting make a little progress, but the Doctor's are still very worried as they still do not have any idea what is going on. They have told me that right now she is a medical mystery. Mike went back home today, it's so hard every time he leaves. I miss him so much and I worry about him being home alone all time.
October 30, 2006: My mom took me shopping today at the White Oaks Mall for some new clothes and shoes. She said she is sick of what I was wearing. But I didn't think were were going to be here this long so I packed minimal. Anyways Kailey looked so much better. Her Great Uncle Ray and Great Aunt Patti came up for a visit today and it was very nice, Kailey opened her eyes and was looking around for almost an hour before she fell back asleep. However we did get some news from the neurologist today. He said the cat scan they did on Kailey's brain showed some very abnormal brain activity and what that exactly means for her he doesn't know. I asked him if she was going to die and looked right at me and said" Babies are born to survive it's what they do!" Later that night I cried alot and my mom was there crying with me.
Ocotber 31, 2006(16 day old): Happy Halloween to Kailey! It's her first Holiday! If we were back at home I would have dressed her in a piglet or sweet pea outfit but instead we put an orange pumpkin hat on her. She was very cute. The nurses said I would be able to hold Kailey in the afternoon and I was so excited it had been almost a week angain since the last night I held her. And so when the afternoon came I was able to snuggle her in my arms while my mom and sister in law Tracy watched on. The nurses gave her a bath I fed her a bottle and we said goodnight.

October 20,2006: My cousin Chris came down to London today to visit( We also work together) She brought down a card from all the people I work with and in it was over $200, They had taken up a collection to help us out with accomadations, food and parking. I can't believe how much love and support I have right now from everyone. I just want to bring her home and start taking care of my Baby!

October 21, 2006: My Dad and Mike's parents came up to London today for a visit. Kailey was having a very difficult time breathing today so they decided to place her on a C-pap machine which pumps the oxygen to her. The Doctor came and talked to Mike and I today and it was decided that if Kailey was still having difficulties breathing then they would intubate her which is where they sedate the patient and put a long tube down her throat and a machine does all of the breathing for her so that her little body could have a rest. Thankfully by then end of the day she was breathing much better with just the c-pap machine and didn't need to be intubated. Thank God my mom has been here with me taking care of me so that I can take care of Kailey.

October 22, 2006: Kailey is still in stable condition and had a very good night. We had lots of visitor's today. My sisters came down and all the grandparents are here to. It's a nice distraction when we have visitors!. p.s I am getting pretty tired of hospital cafeteria food

October 23, 2006: Kailey was still doing well today, each day she gets a little better and a little stronger and hopefully I will be able to hold her soon it has been many days. One our Nurses Jodi called over to the Ronald Mcdonald House while we were there for Lunch and said when you come back I would be able to hold her. I was so excited we didn't even finish eating and went straight back. I can't explain the feelings I had today but wow just holding in her in my arms was incredible!

Ocotber 24, 2006: We had quite a shock when we arrived this morning at the hospital! Kailey had done so well the night before and was able to keep her body temperature a normal level for 12 hours they graduated her from an incubator to a minicrib. And if she continued to do well over night she would be transfered out of critical in the morning down to constant care on the 7th floor. I was able to hold her and feed her today. I was in all my glory holding her today. I can't wait to bring her home! (I should also tell you, they took some of the tubes out of kailey just to see how she would do. At this time they still had no idea what was wrong all they could was treat the symptoms and hope for the best)

October 25-27/2006 (10 days old) : When we woke up this morning my mom was so sick she had to go the emergency department to get check out and they told her she had strept throat, well becuase there are medically fragile children staying at the RMH with us, mom had to move out into a hotel for 24 hours and was not allowed into the hospital. So needless to say I arrived at the hospital a little later than "normal" and was hoping to hear the good news that she would be transfered today. But it was quite the opposite, Kailey was so sick and back on the breathing machine and back into the isolet. The doctor's were working very hard to stabilize her but again still didn't know what was wrong. She looked aweful, no longer pink her body was a pale greyish white colour and she didn't wake up once the whole time I was there. I sat up there with her all night and prayed that everything would be ok. One nurse came in and asked if I had thought about getting her baptized and the sooner the better because they just didn't have any answers for me. It was so hard without my husband or my mom there but some how I made it through that night and called the priest in the morning. Michael's Auntie Dawn came up for a visit and brought an awesome home cooked meal for us and stayed with me for the whole day becuase my mom was still at the hotel and not able to be at the hospital with me. Father Blondie came in for a visit and we set up a date for Kailey to be baptized that weekend so i called all of our immediate family to let them know things did not look good we were having Kailey baptized and would they be able to make it down to London on the Saturday.

Alright so I left off the night they transfered Kailey to the London Children's Hospital. After my mom and I arrived it took us over and hour to find where she was and then we had to wait for another half and hour before we could see her. She is what was called the PCCU: Paediatric Critical Care unit. As soon I saw the sign my heart sunk was even more scared to death. I forgot to mention in the last post, that when Kailey was born she was only 4lbs 15oz a very tint baby for her gestational age, I had at 39 and half weeks. So anways we were buzzed into the critical care unit and a nurse showed was Kailey was. She was in a tiny little incubtor with wires hanging out of everywhere. But I was glad to know that the nurse on Duty only had a Kailey as a patient and she would be right there. Of course we never thought about where we were going stay or anything so by this time it was around 2am so we decided to crash in the waiting room which was very unconfortable since I just had a C-section. 7am came very quickly and we back up waiting to be buzzed to hear of any news about the surgery. Turns out Kailey did not require surgery on her brain but they were extremely worried about her enlarged out and the difficulty she had breathing. I kept a journal the entire time we were in London so I think I will write them out on here.

October 18/06 (kailey 3 days old): Kailey had a pretty good day today she seemed to stable. My mom and I were able to get a room at the Ronald McDonald House which is the hospital property. I was able to hold her today but not for very long and change her Diaper. I was really nervous about giving her a bath with all of the wires so I watch this time and learned how so that next time I could be the one to bath her. I noticed Kailey had really taken a liking to the soother but couldn't handle the bottle so she had an ng tubes placed in her. I am pupming breast milk at this point which I am finding really hard to do.

October 19/06(4days old): Today was Kailey's sctual due date and again another good day but we still don't have any answers as to what is happening. All they could tell me was her heart was enlarged she had a chance of going inot congestive heart failure, her sugar levels were still really low as well as her potassium levels and they have no idea why. I was able to feed Kailey her bottle today oh man what an expeirence. Also today was the first time she had sleepers on, yeah no more naked baby!+

October 20/06(5 days old): I went down to the emergency department today to have my staples removed from the c-section and was told I had a massive infection and ended up spending most of the day away from Kailey which mad me very sad. I couldn't stop crying. The doctor's decided that home care would come to the Ronald McDonald house everyday to pack my incision and tlet it heal from the inside out. Holy painful!!!!!

This all I have time post for now but will continue on a little later on, hopefully today!

January 8, 2009

Hi everyone! So it was suggested to me by one of my family members that I should start up one these. not only would it keep family and friends updated but maybe my story might help another family out. Also who knows might be theraputic for me to put some of this out there.

My story begins about 3 years ago in January 2006 when I found I was pregnant. It was such a happy day. My husband and I had been trying for 3 years to have a baby and I was strarting to loose hope hat I wouldn't be able to concieve on my own. But that special finally arrived. We were so overjoyed and overwhelmed it was the most amazing feeling to know that I had little person growing inside of me. I had few scares during my pregnancy but nothing more than a scared forst time mom who was worried. Other than that it was pretty unremarkable. The day we found out that "it" was a girl I wanted to go out and buy everything pink. Near the end my husband painted the nursery and we put the finishing touches on and then it was time to wait.... I went into False labour on October 4th, 2006. I had steady contractions that were 3 minutes apart so off we headed to the hospital. After an overnight stay nothing happened and we were sent home to wait for real labour to begin. I have to tell you that every Docotor's appointment went fine and everything always seemed to be great there were no concerns or issues. I was messuring the way I was supposed to and gained the usual 25 pounds. Fast Forward to Friday Ocotber 13th, 2006. I woke up that morning not feeling the greatest and could barley feel the baby move but I really though nothing of it becuase she more active at night time anyways. So the next day when I woke I could feel hre kicking but it felt week and just didn't feel right. That night I started to throw up and had really bad back pain and still couldn't feel her moving, it had been hours, so back up to the hodpital we went and they put me on a fetal monitor. After a couple of hours the nurse came in and said "Well your not in Labour we are prpbably going to send you home after the Doctor checks you out". I thought to myself I know I am not in labour but I can't feel my baby moving. So the O.B came in checked the monitor and a worried look came over his face, he said the baby a low resting heart rate and that I would need a C-section becuase he didn't think the baby would be able to tolerate natural birth. So I was preped for surgery and scared to death. Kailey Heather Carey was Born on Ocotber 15, 2006 at 1:15am. They quickly lifted her up over the blue svreen to show her to me and she was a bluish grey colour and was not crying, they quickly took her out of the room and had to recessitate her. It would not be until 12 hours later that I was able to see her but not touch her and to find out what was going on. Kailey had been born with very low sugars and a heart defect and they had no idea why or what happened. 2 Days later the Paediatrician and a NICU Nurse took me and Mike into a small conference room, sat us down and told us the most heart wrenching news I have ever heard in my etire life up until lath point. Kailey had water on her brain and would require surgery that couldn't be done through the hospital we were staying at and they wouldhave to Transfer her to "Level 3" child care hospital but that she would be able to come back to our local hospital for recovery. That night a special team from the London Childrens Hospital came down to Brantford to pick her up. I was not allowed to go with her I had to follow behind. But I still hadn't held my baby yet and I couldn't stop crying. All I wanted to do was let her know that her mamma was there for her and loved her and everything was going to be ok. So Before they took away I was allowed to cuddle her for about 15 minutes. Then I had to wait to be discharged actually I had to sign myself out so that I could to London to be with her. I was on some pretty heavy meds when I left and could barley walk let alone drive an hour away so my mom came and picked me up and we drove together to London a very rainy night.