Nicholas Wyatt Usher

May 31, 2007.

Click here for Video Montage

My FACEBOOK profile name is Christie Mcallister-Usher

Update: Wednesday June 20, 2007

Hello Everyone,

I have FINALLY been able to sit down long enough to send in an update. Lots has happened since my sweet little boy Nicholas was born almost three weeks ago. We had the funeral on Friday, June 8. It was a very nice service. Jon and I decided that we would write what we wanted to say and had the minister read it on our behalf. It was pretty hard to just write everything down...I cannot imagine having to read it to everyone myself. The minister's sermon was very nice, it was about how there is no such thing as a meaningless life regardless of length. If you wish to read it, here is the link:

http://kiwirev.wordpress.com/2007/06/08/125-minutes-a-funeral-sermon-for-nicholas-wyatt-usher/

I really like that he referred to the length of Nick's life as 125 minutes and not 2 hours and 5 minutes. It just seems longer. At the end of the service I carried out Nick's urn, made completely of sand and had footprints pressed into it walking up the length of it. At the grave site, Jon lowered Nick's urn into the ground and we both emptied the dirt back on top. I am so glad that we were both so involved in everything, even though I probably shouldn't have carried the urn because it was quite heavy (we used an adult sized urn and put little stuffed toy in it with Nick's ashes). I feel like we brought him into this world and we were going to help send him off to heaven the best we were able to.

Also, since the funeral, I have developed an infection of the lining of my uterus. Apparently this is quite common and I guess when you think of the state that my body was in from the toxemia and HELLP syndrome along with the stress of planning the funeral and everything I am not surprised that my body wasn't strong enough to fight an infection off. So, now I am on antibiotics and am slowly getting better each day. It is fun to wake up and see what I am able to do each day that I was not able to do the day before.

Jon and I have really taken the motto one day at a time to heart. Each day is special and we focus on that and try not to spend so much time worrying about what will happen tomorrow.

The other day we watched all the videos from Nick's birth and funeral. I am so glad that we have those tapes especially since I don't really remember much of the five minutes that I was able to hold my sweet little piece of heaven. But when I watch the video I start to remember a little bit of what was said. I was also able to see all the other stuff that happened while I was asleep from the general anesthetic. I must say it was totally worth buying the video camera just to have to make those memories, I have really struggled with the fact that I cannot remember much of holding my son when he was alive and now that we have videos to watch it is almost just as good, almost.

We had a lady come while I was in the hospital to do a foot and hand moulding of Nick, we haven't gotten it back yet but I cannot wait to see how they turned out. I will send pictures when we get the moulds back.

Update June 1, 2007

Our precious baby boy Nicholas was born by C-Section at 12:50 PM on May 31, 2007. He blessed us with his presence for 2 hours and passed away at 2:50PM. The plan was to not have a C-Section but due to the health risk that Christie was having they had to proceed ASAP for a C-Section. She has been diagnosed with HELP syndrome where her body's organs are not functioning as should be. The doctors were very concerned for her health but the most important thing we wanted was for both her and I to hold Nicholas will he was alive, we were able to. He blessed many in the 2 short hours we was alive and many special moments were caught on video and pictures. Christie's condition is slowly improving but the doctors said it takes time (2-3 days) before her body should be functioning as per normal. We will definitely send pictures in once Christie is able to come home from the hospital. Please keep us in your thoughts and prayers for a speedy recovery for Christie.
Jonathan Usher.

Nicholas weighed 4 lbs 14.9 oz
Nicholas was 18 inches from head to toe

Update 5-17-07

Hi Everyone!

I just wanted to send a little update. I am now off work on Maternity Leave. Yesterday was my first day...kind of strange but I was so busy doing other things that it didn't really feel like a day off but like a day of "getting things done".

I had a couple of doctors appointments which is why I am sending this email. when I saw my OB, he checked my blood pressure and it was up a little bit. We are currently doing some blood work the check my kidneys, liver, and a few other things to make sure I don't have pregnancy induced hypertension. My blood pressure has always been good until now. I will be seeing him again next Tuesday and we will be keeping an eye on that to make sure things don't get out of hand.

I have been having some swelling but nothing too out of control and it is expected to have a little bit my doctor said so that too is good. I also saw the pediatrician. She has asked me to let her know when I feel that I am going into labour so that she can be available for us in the delivery room. This is good news because last time all she told us was that she would try to make herself available. Now, she wants to be told right away so she can make arrangements. I am very happy about that.

Oh! One other thing, on Sunday, I though Nick might have "dropped" but when Dr. Davis checked me yesterday he said that he is "dipping" but has not dropped. I am very happy about that. He is in the head first position and is getting ready but is still waiting. Jon and I keep talking to him and ask him to wait just a little bit longer at least until May 28, I will then be 37 weeks and his lungs should be developed enough that he won't have that as an additional problem.

Anyways, just wanted to let all of you know how things are going. Please keep us in your prayers. Talk to you soon,

Christie
christie_usher@yahoo.ca

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Update: April 15, 2007-Sunday
 
Well, it hasn't been that long since I sent an update but I feel that enough has happened in the last few weeks that I wanted to send one before I forget.
 
We have found out that Nicholas' translocation comes from me.  I unfortunately am a carrier of a balance 13-14 translocation which is how he got his T13.  I know that there was nothing that I could do but I can't help in feeling guilty that somehow my body could have done something to make sure that he was a healthy normal baby.  I am starting to accept that I cannot control everything in my life but I so wish that I could take away all of his problems and give him a good chance at a long and happy life.  I know that he will have a good life no matter how long he is with us but it is something I wish I could change knowing that it came from me.  The good news is that according to our genetic doctor we have a less than 1% chance of this happening in future pregnancies but I cannot help in feeling a little bit skeptical at this point in time.  Jon is very happy about those odds and is holding onto that.  
  
I guess if we would have known about the possibility prior to getting pregnant it would not have changed our minds to try but it might have been easier to accept the T13 diagnosis if we knew going into a pregnancy that it could happen.
 
Other news is that we saw Nicholas' pediatrician.  She is very nice.  She has agreed to try to be available when I go into labour even if she is not on call.  I am very thankful for that.  It will be a little bit more comforting knowing a face rather than just meeting for the first time.  Our NICU nurse, Gloria who is also very nice has agreed to come in for the labour as well even if she is not working.  I cannot thank them enough for making this as important to them as it is to us...it feels good to know that so many people are willing to help and be available for us when needed.  

As far as surgery for Nick, we were told that he would not be able to have any heart surgery for the hypoplastic left heart syndrome or any aortic arch problems.  Mostly because what he would need would be a heart transplant or another type of surgery that would be very dangerous with, at best, mixed results.  We were told that with the surgery there is a large chance that he could die on the table.  I guess we will just have to see how he is doing to know if they would consider it for him or not.
   
Yesterday was a very exciting day for Jon and I.   Jon finally, after weeks of trying got to feel some of Nick's kicks.  I will never forget the look on his face when he did get to feel it.  Smiling from ear to ear.  I am so glad we were able to share that special moment and I will not forget it.
 
Well, my due date is fast approaching...9 weeks and counting I am finally in the single digits!  So scary how fast everything has flown by in spite of everything that has happened.  If it is even possible, I think because of the T13 diagnosis it almost feels like time as gone even quicker than before we knew.
   
I am very thankful for each day that I get to feel Nick moving and knowing that he is doing well.  I am also thankful for all of the support from everyone on this website and the message board on yahoo as well as our families.  I know that without the support from all of the moms that I have talked to, this journey would be a lot harder.  Thank you to everyone who has touched our lives and offered your support and friendship.  I will send another update after our next ultrasound on April 24...Until then, lots of love and hugs.
 
Christie
christie_usher@yahoo.ca
 

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Hello, My name is Christie Usher . My husband Jon and I were told that our son, Nicholas Wyatt, has Trisomy 13 Translocation (13 onto 14). Nicholas' due date is June 18, 2007. We live in Medicine Hat, AB, Canada

Our Journey started when I was 17 weeks pregnant. Our first ultrasound questioned the possibility of a two vessel umbilical cord instead of the regular three vessel. At that point, we were not too concerned because our doctor told us we would watch and make sure that there was no problems and would follow up with another ultrasound in about six weeks. Six weeks later we went for our second ultrasound. The tech wasn't really saying too much but kept using "the baby is in a bad position to get the best pictures" excuse for why she was spending so much time looking at his heart and face. Two days later I was not feeling good and was quite sick.

I called my doctor to let him know and his nurse told me to come in the next day because he wanted to go over my ultrasound results and check me over. Jon and I went in and we were told that there was some questions as to whether Nicholas had some heart abnormalities and possible cleft lip. We were not told of any diagnosis of Trisomy 13 or 18 at that time nor was it mentioned that it could be a possibility. Our doctor sent us to Calgary to the Maternal Fetal Medicine Clinic. We were seen within a week and had a more specialized ultrasound done. Again, the "the baby is in a bad position" saying was used and two different techs had to try to get the best pictures. They had me lying on either sides as well as on my back. Once the ultrasound was completed a doctor came in and asked us what we knew about our son's condition. I told her that we knew about the umbilical cord, possible heart problems, and possible cleft lip. She told us that he had hypoplastic left heart syndrome where the left side of the heart is smaller than the right, for us it was almost half the size. They also had a hard time seeing the Aortic Arch.

They performed a fetal echocardiogram but even then they could not see it. She confirmed that Nicholas has a bilateral cleft lip which in most cases comes with a cleft palate. We were told of some other problems, an extra finger on the right hand next to his pinky as well as a brain condition called Dandy Walker Variant. She didn't really go into much detail as to what problems this would cause for Nicholas except that he would be severely handicapped, if he survived. It was at this point where she offered to do the Amino right away. We agreed to do the Amino, being from out of town and wanting to know as much about what was causing these problems as possible. She told us that they were going to do the FISH test to see if Nick has Trisomy 13, 18 or 21 but she was leaning more towards 13. The Amino was very unpleasant. Although it was painful at the time my husband and I were so emotionally drained and tired that the pain of the Amino didn't really seem to matter. They had to re-insert the Amino needle twice because I was moving too much and couldn't control my breathing. I was so scared of the possibility of them hurting my son or the 1/200 chance I could miscarry that I was shaking so badly.

Once the Amino was done I cried so hard, not because of the pain from the needles but the pain in my heart, we were all alone and being told so much and mostly not understanding why, how come, or what our options were. We then saw a genetics counsellor and had Trisomy 13 explained to us. We were also told that all of Nicholas' problems were fixable, on their own but surgery would not be an option for our son with the diagnosis of Trisomy 13.

We were given the news that trisomy babies do not survive. Since then, we have had another ultrasound. Nick is growing at the correct rate, he is 2lbs 8oz. At our last ultrasound a week ago the tech saw his Aortic Arch no problem twice! Unfortunately, because we cannot do fetal echocardiograms here in Medicine Hat, we do not know the status of the arch. However, I feel some reassurance that at least it is there and can be found. At last a little bit of hope.

Last week is when we found out he has a full extra finger which Jon and I are excited about rather than just a nub, a full finger could come in very handy for playing music or sports, one might even consider it an advantage over just the regular five fingers us regular people have. Each day gets better and easier to accept all of the problems we are dealing with.

Jon and I have a very supportive family and they have been wonderful. I know that Nicholas chose us for a reason and we are trying very hard to be prepared as much as possible for any situation that may come along when I go into labour.

We will have to be very assertive with our birthing plan and make sure the doctors and nursed know and understand our wishes for Nick's birthday as well as what we do and do not want done. I am still unsure how far I want to take his treatment but I am sure that when the time comes to make that decision God will guide us in the right way. I guess the hardest thing for us right now is that this is our first child, we don't have anything else to compare to or really know what to expect nor do we know what a "normal" delivery would be like for a "normal, healthy" baby.

All I know and believe is that God does not make mistakes and everything happens for a reason. We would not have been given this path in life if we could not handle it. I think that Jon and I have become better people because of Nicholas and have come to appreciate everyone in our lives, especially each other a lot more.

I am willing to accept emails from anyone who has questions or wants to tell me about their story or just offer advice or some words of encouragement. Thank you to those of you who have posted your stories on this website, had it not been for you, I would not have shared our story and would not have so much hope for our son. Just knowing that there are some children that have survived birth and are living with trisomy 13 gives me hope that Nicholas could be on that list as well.

Christie Usher
christie_usher@yahoo.ca