Sunday, March 2, 2014

Kristopher "KRITTERBUG"


Kristopher "Kritterbug" ~ Full Trisomy 13  

12/13/2005 - 05/19/2012

 

My son Kristopher was born with Full Trisomy 13 on 12/13/05. He was 6lbs 8oz. and had a cleft lip and palate. He had rocker bottom feet and a little finger attached to his pinkie. He was in the NICU for 10 days until we received his bloodwork back that identified him as having Full Trisomy 13. We brought him home under the instruction to "Make him comfortable at home". During the first year of Kritter's life, he was in and out of the hospital a lot. We had his lip repaired at about 5 months of age. We had a peg tube in place for feeding as he could not swallow anything due to the cleft palate. At his first birthday he weighed around 12 lbs. When he was 13 months old, we moved from Fl to Tx. We had a WONDERFUL pediatrician that set us up with every doctor that we needed for him. We saw GI (didn't like them ), Pulmonology (LOVED), Cardiology, Nutrition, and Nephrology. His GI dr advised he didn't need to see him after a few visits so we found someone else much later. Kritter had cortical blindness, he could only see out of his eyes in certain spots. He was completely deaf. He loved being outside, he would laugh and laugh and his eyes would get all crazy from the sunlight! After
living in TX for just a few months, he began to gain weight and filled out! He began OT, ST, and PT. We had his cleft palate fixed and attempted oral stimulation but he never took it on. He flourished in Texas, going as far as not being admitted to the hospital for over a year! He did really well! He began to go to school, a PPCD program at an elementary school and he got to ride the bus which he loved! I got pregnant in 2009 with our first daughter Calleigh. I had low amniotic fluid and was put on bedrest about 2 weeks before her due date. The same day, Kritter stopped breathing. 7 times. The first time was during therapy. I had to give him CPR. Thinking it was an isolated event, I declined an ambulance ride to Children's. 30 minutes late, we were on our way as he did it again and again. He was discharged a few days later (it was from seizures). 2 days later it began again. He was admitted again. The day before I had Calleigh and still on "bedrest" he was discharged from the hospital. He also was at his heaviest weight, 42lbs! at the age of almost 5. He and Calleigh were so cute together! He rolled over onto her several times and she did the same! I have video of them "beating up" on each other. During the next year and half, he began to decline and he lost a lot of what little strength he had. He began to sleep a lot. On May 19th, the day after our 10th wedding anniversary, he passed away in his sleep. He had a slight cold so I got up with him in the middle of the night to give him a breathing treatment. We snuggled in his bed. Then I went to bed. When my husband got up a few hours later, he found him. It was very traumatic. We knew in the back of our minds that we could lose him any day and we always said when it was
time for God to call him home we would be ready, but still, in your heart of hearts you never want your child to go. I found out I was pregnant 3 days after he passed, then had a miscarriage a week later. Last year on Sept 13th, I had another little girl we named Gentry. She is very sweet like Kritterbug, very gentle and she smiles ALL the time, like he did. Calleigh remembers him a lot. We talk about him everyday. She thinks he paints the rainbows she sees. When ever she sees one, she always calls to me and says, "Look what my Bubba did! He paints the rainbows because they are beautiful and he wants me to see them!" Very wise for a four year old! My advice to any new parent, especially one with a Trisomy child? NEVER ever let a Dr. tell you your child doesn't have a chance. Even if there is a small one, its still a chance. Do I believe that God only gives you what you can handle? No, I believe God is what gets you through it. Having Kristopher is something I would do over again. I loved him. 


Leigh Anne and Kyle 


We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

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Sunday, February 23, 2014

Kevin David Beck Jr.




Kevin David Beck Jr. ~ Full Trisomy 13 ~ May 10th, 2012 

Our baby Kevin David Beck Jr had Full Trisomy 13.  He was born May 10th, 2012 and only lived about an hour and a half.  We are from Taylorsville Utah. I've attached a few pictures.  Also I blogged about our journey throughout the pregnancy which can be seen at http://www.kevinbeckyfam.blogspot.com/ .  Our story begins in January of 2012. Our Baby Kevin was too perfect for this life.  He was such a blessing to our family and continues to bless us from heaven.






Becky Beck

 

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

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Adalyn May


Adalyn May ~ Full Trisomy 13 ~ Born Sleeping  September 18, 2012

As any new parents would be, we were so excited to go to our 12 week ultrasound. Everything was going so well until they brought in the doctor to explain some things. We were told the baby had swelling behind the neck, which could mean a few things. We said a few prayers, and were doing okay until we had an amniocentesis done at our 18 week ultrasound. That dreaded call came when we were told that our sweet baby girl had full trisomy 13. Everything spiraled downward from there, until we were able to pick ourselves up off the ground a little while later.

We decided that our sweet little girl was going to have a big impact on this world, and that we could touch others with her story. We started a blog and the remainder of the pregnancy we enjoyed each and every
precious moment we were given with our little girl. Every kick, punch, and hiccup will be cherished forever.
On September 18, Adalyn May came into the world. She had passed away a few days prior, so we knew what to expect the day of. We took lots of pictures and cherished every moment with her. Her story will forever live on, and she will forever be remembered and loved. We pray to have siblings for her to watch over from heaven on day.

Follow Adalyn’s family on her blog http://adalynmayourlittleangel.blogspot.com/



We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

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Shayla D. Steans



Shayla D. Steans ~ Full Trisomy 13

October 20, 1998 ~ January 16, 2011


July 2013

The twelve years Shayla spent with us here on earth was truly a blessing. She deeply touched the hearts and spirits of countless doctors, nurses, teachers, family members and friends. She is missed, yet the love she brought us still remains. We saw the best in her, when many of doctors could only see the disorder in her. We will see her again....this is not the end!

July 2010
Shayla was born Oct. 20, 1998 in Atlanta, GA.  We were not given much hope from the doctor's that she would live as long as she has.  We were told that she may be stillborn or pass away soon after birth, but God had a different plan and she is now 11 years old! She has had multiple surgeries and now battles with aspiration pneumonia on occasion, but what a joy and a blessing she is to our family and to everyone that meets her.  When I first heard the words to a song by Luther Barnes and the Red Budd Choir-I'm still holding on, I knew she was going to be o.k.  The first verse of the song says, "They said I wouldn't make it, they said I wouldn't be here today, they said I would never amount to anything, but I'm glad to say that I'm on my way and I'm growing more, and more each day".  She proved them wrong and continues to do so!  Praise God for giving us such a special child and entrusting us with her care here on earth until He is ready to call her home to live with Him with a perfect glorified body in eternity.  I'm glad I found
this site that celebrates children born with this disorder.  There was nothing like this or any kind of support when Shayla was born and in this forum many more people will be able to witness what God can and will do!!  Blessings!

Roshelle Steans roshell1027@gmail.com


We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

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Jonathan Jamari


Jonathan Jamari ~ Full Trisomy 13 ~ Born:  April 6, 2010


My name is Jonathan Harrison and this is the story of my son Jonathan Jamari Harrison.  Jamari was diagnosed with Full Trisomy 13 during my wife’s fifth month of pregnancy.  Jamari is our second child so when we went to the doctor for the fifth month ultra sound, we were extremely excited to find out the sex of the baby. However, we got a lot more information than we expected. The ultrasound tech was doing a typical ultrasound that included the measurement of a number of Jamari’s body parts and organs.  As we were moving along with the ultrasound, the tech told us that she noticed some abnormalities in both the brain and heart and called in another tech to take a look at these two areas.  Any parent, who has had this happen to them, whether for better or worse, knows that when the techs notice things and call in more techs it is a very nerve racking experience.  Your brain starts racing.  You wonder what they may be seeing, is it something major or minor, what the issue may be, or whether there is an issue at all.  You hope that the second tech will say something like “oh here it is” or “you were doing it wrong.”  That never happened with us.  After the second tech took a look with the ultrasound machine and a short deliberation between the two techs, they told us that one of the OBGYN doctors would be there shortly to look at the ultrasound images and to discuss what they are seeing, if they are seeing anything at all.  As me and my wife sat there waiting, pondering what was going on, the techs attempted to reassure us saying the doctor will explain everything.
The first of the two doctors who saw us that day was the high risk OBGYN.  He came into the room and had the tech show him both the brain and heart. He told us the baby had what appeared to be Dandy Walker Syndrome.  Dandy Walker (a congenital brain malformation involving the cerebellum and the fluid filled spaces around it) was a new, unfamiliar term to both me and my wife and we didn’t know exactly what to expect.  He also thought the ultrasound indicated a possible heart problem and so they paged the pediatric cardiologist. After taking a quick look, the cardiologist agreed that there was an issue with the heart and wanted us to schedule an appointment with his office at a later date. Based on these initial results, the high risk OBGYN recommended an amniocentesis. It took us some time to consider the procedure but I am one of those people that needs to know what is going on. I have always been that way and after much consideration between me and my wife, we thought the risk was low enough to proceed with the amniocentesis. Don’t get me wrong, it was not an easy decision but we wanted to be prepared to help our child in any way possible for any condition he may have.  That night was very rough for the both of us.  I do not think we really considered there being an issue with the baby.  We, like most parents, assumed the baby would be healthy.  But with the news from both doctors, we did as most parents would probably do; we researched as much as we could on the internet about Dandy Walker.   When you get news like that, you are not really eager to get on the phone and talk about it and a number of different emotions set in...panic, fear, anxiety, and even a little hope that it’s not as bad as it seems.  I think I may have slept two hours at most that night and I know my wife had trouble sleeping as well.  You sit there and think about all the possibilities about what could happen and how your life will change.  We ended up doing the amniocentesis the next day, which was a Wednesday but we were told the results were not expected until Monday.  Waiting for the results was horrible and having a whole weekend for random thoughts to be running through our head would have been torture.  Luckily, or not so luckily, depending on how you view it, the OBGYN called us on Friday and told us we need to come in to the hospital immediately to get the result, preferably both of us.  Seriously, how many times do you get good news when they say “come in immediately” and “preferably both of you.”  We did not know what to expect but we were expecting bad news.  It turns out the news was even worse than we expected.

The next part was probably one of the worst parts of this whole ordeal.  Not because the doctor was about
to tell us that our baby had Trisomy 13 (we didn’t know what that was at that point anyways) but because of his reaction, comments, and the way it was portrayed to us.  The high risk OBGYN told us that our baby had Trisomy 13 and he went on to explain what the condition was.  He gave us statistics like “80% don’t survive past the first week” and said the condition is “incompatible with life.”  He repeatedly said he was “sorry for the results.”  He said that we have two options: carry the baby to term if it survived that long or have an abortion.  When discussing carrying the baby to term, he frequently mentioned “palliative care.”  For those that don’t know, that is very broadly numbing the pain while the individual passes away.  We were both in shock and, initially, I thought nothing of his comments but looking back I felt like he had written off our child already.  He told us to consider our options over the weekend and let him know our decision.  I think we both could have given our answer on the spot but because we were still suffering from the initial shock we went home to discuss it.  Now, speaking for myself, I am not completely against abortion and other some circumstances I have no issues with it.  Our situation was one of the situations in which I had no issues with it; however, I never really fully considered it.  I thought about it briefly and whether or not I could live with making that choice.  The answer was “no.”  We felt as though we needed to give our child every opportunity possible to survive and thrive at life.  That was our job as his parents.  I think it was only a couple hours after we received the news that we decided we were going to go forward with the pregnancy.  Once we made the decision, it was like a huge weight had been lifted off my shoulders and I actually felt good about the situation.  From that point on, I was optimistic about the whole pregnancy.  I was still very timid, especially when we got good news.  I wanted to remain optimistic but not over confident.  It was still a very scary situation.

That Monday, we went back to see the high risk OBGYN about our decision.  We confidently told him that we wanted to move forward with the pregnancy.  He told us we were brave and that he respected our decision.  His comments helped reinforce our decision to move forward but I never considered us brave.  We were just parents who wanted to give our child every possibility.  Conversely, after the praise, he went back to talking about palliative care for the baby and how we could arrange it through the hospital.  We patiently listened to him discuss it but my wife and I agreed that giving our child the best opportunity meant aggressive care.  To us, aggressive care was doing everything possible to keep our child alive.  If your child had a heart condition and a brain malformation without Trisomy 13, wouldn’t you still want the doctors to do everything possible to save your child?

The next few months went by with some uncertainty.  We had a doctor’s appointment almost every week between ultrasounds, OB appointments, cardiologist appointments, and other random visits.  The worst part was that we didn’t have one OB doctor.  We were at a training hospital, so almost every time, we had a different doctor.  The first visit to the OB after getting the news, the OB failed to read our file.  The doctor asked happily, “how is the baby doing?”  We had to inform the doctor that our baby had Trisomy 13 and the doctor subsequently called the high risk OB down to talk to us.  The regular OB had told the high risk OB that we did not understand what Trisomy 13 was.  To this day, we don’t know why she told the high risk OB that we did not understand the condition but we think it was because we appeared optimistic over the situation.  Needless to say, it was a long five months until my wife had the baby.  We did get good news during the pregnancy, the baby was growing normal, the fluid pockets on top of the Jamari’s brain were going away, and his heart condition improved leading up to his birth.  I have to say that our pediatric cardiologist was the best and our favorite doctor throughout the ordeal.  He was upfront, respected our decision, and spoke to us in terms we could understand.

A C-section was scheduled for my wife and Jamari on 15 April; however, my wife’s water broke on 06 April.  We had prepared a birth plan for Jamari in advance, dictating our desire for aggressive care and what we wanted to take place. One of the birth plan conditions, in which we took from a birth plan on Livingwithrisomy13.org,  stated “Jamari is to be offered aggressive treatment. He is to be treated as a child without a "fatal condition".  Some babies with Full Trisomy 13 do survive. Please give Jamari the opportunity to be one of them! "Do not treat him as a baby who is going to die anyway". He is our child, and we want as much time with him as possible. Please respect our decision and help us achieve these goals with our son.”
Jamari was born by C-section on 06 April at 1415, he weighed 7lbs 1oz, and was 22 inches long.  The NICU staff was on hand during the operation and was ready for Jamari’s arrival.  It took a lot of suctioning and what seemed like forever for Jamari to let out his first cry after birth.  It was a sigh of relief for both me and my wife.  As the NICU crew was doing their normal procedures, I began to visually scan my baby for defects.  Trisomy 13 babies are typically born with physical defects to include cleft palate and I wanted to see if I could notice any defects.  I saw none.  He was perfect and I was excited that our baby boy had arrived.  (Despite me not noticing, Jamari does have physical deformities).  Jamari was the biggest baby in the NICU.  Jamari was born with a number of health issues to include Dandy Walker (brain), Tetralogy of Fallot (Heart), and he currently requires his food through a feeding tube.  These are not all inclusive but some of the major ones.  Our little man, with the help of his very supportive big brother, is fighting hard.  For me, beating that one week statistic was a major goal.  Although god-willing we have a long journey ahead of us, I felt a significant sigh of relief when Jamari made it past the first week.  My next goal is the one year mark.  It doesn’t really mean a whole lot because each individual is different but I think it helps me deal with it better.
It’s the end of April and Jamari is doing well.  He is finally gaining some weight and taking a little more milk from the bottle than before.  We love him very much and although scheduling his appointments and keeping up with his medication is a full time job, we don’t regret our decision in any way.  One of the biggest issues we have is dealing with the doctors.  Some of them are great and they understand what we are dealing with and how we feel.  Most of them are not so great though.  They treat Jamari as learning tool and gawking at his deformities.  They also treat every issue as though it stems from his Trisomy 13 and it can be very frustrating sometimes.  I am typically a person who will bite my tongue in an attempt to prevent altercations and to keep from offending people but I find myself increasingly confrontational with the doctors.
(16 May 10) On 03 May Jamari went to the hospital for one of his scheduled appointments.  Prior to him going, we had noticed he was working a little harder than normal to breathe and he had been relatively more fussy than usual.  After his appointment, he was taken to pediatrics to take a closer look at his breathing.  He was admitted to the hospital that day for what we found out later was a Urinary Tract Infection and sepsis.  Jamari was immediately started on antibiotics.  It is now 16 May and Jamari has been gradually improving every day until 15 May.  On 15 May, his stats (oxygen level, respiration, and heart rate) have been off.  He had been completely off oxygen around day three or four of his stay but, as of 15 May, he was back on the nasal oxygen just to maintain his oxygen at the upper 80’s and lower 90’s.  When Jamari was first admitted to the hospital on this visit, I was initially shocked and a little scared but felt better every day as his condition improved.  I believe I am more frightened now than I was when we first came to the hospital.  At least then, we knew what the problem was and why his stats were down.  I am proud to be his father and I enjoy every moment spent with my child, even if it has been mostly in the hospital, but I am scared that these low stats may be the first indications that my son is leaving us.  We know the statistics and have briefly talked about what could happen; however, I don’t think we have completely accepted it and we will never be prepared for it to take place.  The statement that one of the doctors said to us just prior to taking Jamari home from the NICU continues to ring in my head, “you have to understand that with Jamari, it’s not if, but when.”  
Although true, it’s not something I want to accept.

(18 May 10) Something hasn’t sat right with me over the last couple of days and it’s been stirring in my head until its has gotten to the point that I have become really aggravated.  It has to do with medical ethics.  A couple of days ago during morning rounds at the hospital, one of the doctors treating Jamari came into the room to talk to me.  In our discussion, the doctor told me that he had placed a consult for Jamari to see Occupational Therapy because he routinely cocks his bed back when he is lying down.  He said that after discussing Jamari with the ethics committee, they had decided to put a number of consults in for different specialists.  Now at the time, I did not really think anything of it.  We had talked to Occupational Therapy while we were in the NICU and had already had an outpatient appointment with them.  So a consult with them was nothing out of the ordinary.  After thinking about his statement, I have become fairly perturbed over the whole thing.  To think, had he not met with the ethics committee, he may have withheld treatment from my son. He may in the future withhold treatment from my son or feel as though a procedure we want is unethical.  Our son is alive and despite the odds is doing fairly well.  What right does he have to choose whether or not a procedure or treatment is given to Jamari.  His statement alone has now made me question every doctor or nurse that treats Jamari.  I have now decided to ask every person up front “Do you have an ethical issue in treating my child?”  I did that all day today and although my doctor and nurse both said they had no ethical issues in treating my child, there were definitely indications that individuals at the hospital did in fact have an issue with it.  I guess from today on me and my wife will have to take it one question at a time with each person to identify who is on Team Jamari and who is not.  We have also decided to develop a life plan.  During his birth, we developed a birth plan to outline his condition and are wishes for aggressive treatment.  It seemed to be effective during birth so we plan to develop one (that I will attach later) one for his life.

(10 July 10) It’s been a long time since my last update.  Jamari is doing fairly well.  He has had two separate surgeries (nissen fundoplication and gastric feeding tube, and then a hernia surgery) since then and is recovering well.  He has been home for over a month now.  It has taken some time to adjust to the feeding, carrying oxygen everywhere, and all of the things entailed in his care but it is definitely worth the time we get to spend with our child.  Last week, his G-tube popped out at home for the first time ever.  We had never seen it happen before and, although we practiced once on a doll, we were not sure exactly what we were doing.  My wife put the tube back in, we filled it up with water and I took him to the ER because we had never done it before and because it had not been 6 weeks since his surgery.  While in the ER, it popped out again and because the nurse did not know what to do, I put it back in Jamari’s stomach.  So up to that point, me and my wife have successfully put his G-tube back in with no previous experience and no help from medical staff.  When the pediatrician comes to see me, he tells me we are waiting to for radiology to ensure it’s in the right spot.  I told the doctor that maybe we should put a new tube in because this one has popped out twice in the last hour (seriously, who is the doctor here).  He agreed and this is how the conversation went from there:  Dr.- “Have you ever put one of these in before.” Me- “About 15 minutes ago when it popped out in the other ER room.”  Dr.- “Ah, good! So you have some experience.  I have never done this before and would like to watch you put it in.”  Me- “That was the first time ever for me and I am not sure I put it in right.”  Dr.- “It looks like you did a great job.”  There is not much else I can say about that situation.    
(05 Oct 10)  It has been a long time since our last update.  I think for the most part, we are just enjoying Jamari being at home.  Although both Jamari and his brother, Jaiden, keep us extremely busy (as most kids do), we really enjoy watching him develop.  He has been doing really well at home, and he continues to grow and get bigger. He still feeds through his G-tube but we have also been feeding him peas, bananas, prunes, and carrots through both his G-tube and by mouth occasionally. He really enjoys eating but we try to limit his food by mouth for fear of aspiration.  We had the first modified barium swallow test done to see if he was aspirating.  At first, the speech therapist told us he did not appear to be aspirating but they wanted to take a closer look at the study.  After the closer look, the speech therapist believes that he may in fact be aspirating.  It took us three months to get the first test scheduled and now they want us to do another one to reconfirm the results.  It can be very frustrating at times but we definitely do not want Jamari to catch pneumonia.  As far as his development goes, he appears to have become more responsive to our voices.  He responds mainly to my wife’s voice; however, when he hears his older brother, it’s as though he gets really excited and starts moving his head around to try and locate Jaiden in the room.  He still cannot hold his head up for long periods of time and he is not able to sit up on his own but we are very hopeful.  He does smile sometimes but most of the time it is while he is sleeping.  My wife also says he laughs in his sleep but unfortunately I have yet to see or hear it.  We always say that he is playing with his Granny (her mom) and Papa (my dad) in his sleep.  Although his development is behind that of kids his age, we are very pleased with how he is progressing.  He loves to be held, especially when we hold him up to where he can walk with our assistance.  Jamari is a happy baby for the most part and a lot of times he only cries because he wants one of us to pick him up and talk to him. It’s great until he does it at three o’clock in the morning while everyone is trying to sleep.  Thankfully, we finally got approved for respite care and, as of about three weeks ago, we have a night nurse that comes 5 days a week, 8 hours a night to watch Jamari while we sleep.  It is really awkward having someone in your home while you sleep but overall it has been a great help.  I think right now, our biggest medical concern for him is his heart.  He has Tetralogy of Fallot and, although the severe case in which we were expecting during the pregnancy ended up being a mild case, it is still something that needs to be fixed.  Our pediatrician told us that it is a decision we will have to make sometime in the not too distant future.  There is a fine line between Jamari being healthy enough to undergo the surgery while at the same time getting it taken care of before his condition starts getting worse.  I think that is going to be a rough decision for us.  We both know it is a decision we will have to make but we really don’t discuss it unless we have too.  Whatever our decision, I know we have to make it together if we are going to get through it.  So until that time comes, we will hope for and do what is the best.  For the most part, we are at the mercy of our doctor’s recommendation. We are also fortunate enough to know a surgeon (we met with him personally during my wife’s pregnancy) who has a lot of experience with T-18 heart surgeries and would be willing to do Jamari’s heart surgery.  I would think that it would not be that hard to find a doctor willing to do a necessary surgery to save your child’s life but apparently once they have been labeled as a Trisomy child, opportunities disappear.  I know I personally called a number of pediatric cardiologists to see if they were willing to do the surgery during my wife’s pregnancy.  Not one said yes.  Some didn’t call back but most told me it would be hard to find a heart surgeon willing to do the surgery. Luckily we ended up with a great cardiologist who put us in contact with the heart surgeon.  As far as my personal life, I am really honored and privileged to have the wife and son that I have.   Jaiden could be in the running for the “Proudest Brother Alive” award if it existed.  He loves his brother very much and, although he doesn’t understand all of the medical issues going on with Jamari, he is so happy to play with him at any opportunity he gets.  Jaiden is always telling us what we did wrong or reminding us to make sure his brother gets his food or medicine.  He also gets really excited whenever Jamari does something for the first time or does something he doesn’t do often.  Jamari has a hard time opening both of his eyes (he typically only opens the left one) and every time he opens both of them, Jaiden gets so excited and makes sure that both me and my wife know that his eyes are open.  I love him so much.  My wife is also amazing.  She bears the brunt of the work with Jamari.  I tell her all the time that it is a full time job scheduling his appointments, doing his paperwork, dealing with his nurse, and taking care of him.  She does all of this while at the same time attending college online. She also gets the least amount of sleep out of the two of us. I believe she has been and will continue to be extremely vital in Jamari’s development.  Since she was pregnant, she has talked to Jamari everyday and continues to do it to this day. I hope she knows that I really appreciate what she does for our family and don’t tell her I said this but “I love her a lot too.”  

(Dec 2011) Jamari (FT13) had his fourth surgery in 18 months. The doctor attempted to save his vision by removing the cataract from his left eye which they believed would go away from lack of use.  Unfortunately, the ophthalmologist said that there is a stalk (artery) in his eye that is blocking at least part of his vision.  It is supposed to slowly dissipate after birth but his is still there and because it is a live artery, it just bleeds if you attempt to do anything with it. His other eye is too small for the cataract machine and therefore they did not attempt to remove the cataract. The surgery did not help his vision, in fact, it made it worse and we believe he is unable to see anything out of that eye anymore.  Now, Jamari will use his fingers to open the eyelids of his small eye so that he can see.  Other than light, we are not sure exactly what he is able to see but the ophthalmologist has listed him as legally blind.  Jamari also received Botox in his saliva glands because he drools and spits too much and it is causing his face to break out. Additionally, they did a CAT scan to check his ear bones and canal because his ear is causing him pain. The surgery went well but two days after we brought him home, he started getting sick.  His condition was very similar to this past July when he was admitted to the hospital for pneumonia. They took a chest xray and alot of his airways were plugged with mucus.  Because he wasn’t in respiratory distress, they allowed us to keep him at home on oxygen.  He is doing much better now and we are grateful.

(4 July 2012) So, I just wanted to update everyone on the status of Jamari.  He was admitted to the hospital on the 4th of July for continuous vomiting, which looked like bile by the time we arrived at the hospital, and
intense pain from what appeared to be cramping.  They did an x-ray and saw what looked like an obstructed bowel.  They decided to wait overnight to see if the bowel would fix on its own.  However, that night, Jamari developed a temperature of 102 forcing them to do exploratory laparoscopic surgery to see what was going.  Luckily, there was no obstructed bowel.  It turns out Jamari’s colon is not aligned the same as in most people (who would of thought, lol).  They ended up giving him an appendicostomy, thinking that would help move things along with his bowel.  They did not notice any other issues or any necrosis during the surgery. After the surgery, they put him on an IV and TPN fluids, and we sat and waited for him to pass gas or have a bowel movement.  After a couple of days, Jamari had not had a bowel movement and his lipase levels in his pancreas began to skyrocket day by day.  They did multiple x-rays and an ultrasound and found out that Jamari had developed pancreatitis.  We were told that normal lipase levels are between 27-300 while Jamari’s were hanging around 2500 and actually reached 3900 at one point.  He also had what the doctors called “sludge” in his pancreas.  We were told this is indicative of issues with the gall bladder and at the point they believed that the gall bladder was atleast part of what was causing the pancreatitis.  They wanted to take out his gall bladder but his lipase levels continued to rise forcing us to postpone the surgery twice.  They also took him off of the TPN thinking the fats and proteins in it were causing his elevated lipase.  It did not help and his levels continued to rise.  After doing some research on our own, we found out that cystic fibrosis also causes pancreatitis.  We suggested that although kids with Trisomy 13 typically give a false positive for cystic fibrosis, Jamari’s respiratory issues may be an indication he actually has cystic fibrosis and could be causing the pancreatitis.  They agreed that this could potentially be what was causing the pancreatitis.  A couple of days after coming off of the TPN, the doctors decided to get some fluids in Jamari’s stomach and put him on a continuous feeding of 10ml an hour of Pedialyte.  That helped and over a couple of days his lipase levels began to lower.

(16 JUL 12)They attempted to do the gall bladder surgery again today but it was cancelled because of room availability issues.  Jamari’s lipase levels are currently around 2300 and trending downward.  They are now also saying that Jamari has a variant of cystic fibrosis and it is not what is causing the pancreatitis.  As of right now, the plan for the week is to conduct an MRCP, which is a fancy MRI that shows a good image of the biliary tract and pancreatic ducts.  Apparently, the surgery team has been asking to do this for a week or so now but the pediatric team did not want to do it because it requires sedation.  We were oblivious to that whole decision.  I am kind of perturbed in the reasoning behind the pediatric team’s decision to do the MRCP.  Apparently, autopsies of children with T13 show that they typically have abnormal pancreatic ducts.  I politely asked them what their studies of living children with T13 showed.  They had no answer or response for that question.  After the MRCP, we are planning on having the gall bladder surgery by the end of the week.  The reason we are still going ahead with the gall bladder surgery is because the way it was explained to us is that gall bladder caused the sludge in the pancreas.  If it is not removed now, the gall bladder could cause the pancreatitis to return and if it does, the pancreatitis will be much worse.  That is kind of where we stand right now.

 (20 Jul 2012) On Friday, Jamari had surgery to remove his gall bladder.  The surgery went much longer than they expected but there were no issues and they brought him to the PICU to recover.  The doctors have stated, and we agree, that they want Jamari to always recover in the PICU regardless of the surgery and regardless of whether he is able to go to the peds ward.  The first day went well.  His lipase went down to around 900 and they started him on Pedialyte.  Later that evening, they switched from Pedialyte to something called Breeze based on the dietician’s recommendation. They got up to about 20 mL an hour (continuous feeds) before his condition turned around Saturday (21JUL) morning.  He started spiking temperatures around 101.5, the Breeze was going right through him and coming out essentially the same way it went in, his lipase was back at 2200, his white blood cell count was low, and his heart rate was hitting over 160 at times.  His heart rate and oxygen are always a concern with his Tetralogy.  In an attempt to counter the recent changes, they took out his central line (which was in too long anyways, two weeks is max and we took it out just over two weeks) and put in an IV and then they took him off the antibiotics. The thought is that either the central line was causing an infection which lowered his white count or the antibiotics were causing it.  I was confused at first because I thought infections raised white blood cell counts but I was told that certain infections or bad infections can take over and cause the count to decrease.  That is very concerning to us.   
They also mixed the Breeze with his normal milk, Elecare, to see if that would thicken it up.  I think we have a very good team of doctors. We are fortunate enough to be at a military hospital where our pediatrician and specialists are in the hospital and all the clinics are located in the same place. I was due to transfer a year ago but we decided to stay another three years here in Hawaii based on the medical care and doctors alone.  We weeded out the doctors that aren’t on what we call “Team Jamari” a long time ago.  Jamari’s pediatrician is also one the senior ranking and most experienced doctors in the hospital, which has been very beneficial to us.  The hospital is also a training hospital and, although we do not want the new doctors operating on Jamari, we do find that it is an opportunity to educate the young doctors.  And in the end, if we have an issue, our pediatrician will help us make things happen if we need him too.   Also, the Infectious Disease Dr. showed up the second day in the hospital.  He said he was following the case and as long as we didn’t see him, things were going well.  We haven’t seen him again and I have assumed things were well from his aspect.

(04 Feb 2013) Jamari turns three this April and will start school.  Its kinda nerve racking but we have been working with the schools and our doctors to get everything in place.  Also, we have tentatively scheduled his heart surgery for June to correct his Tetralogy.  We have to get a CATSCAN under sedation followed by a meeting with the heart surgeon in April.  The heart surgeon is out of San Diego and travels to Hawaii every three months do perform surgery.  If everything goes well, the surgery should be the first week of June.  Jamari has had a number of surgeries in his life but this is by far the scariest.  Not sure I really want to do it but I know he has to have it.  I’ll keep you guys updated as we go through the process. The doctor in San Diego who is willing to do heart surgery on T13 babies is: Dr. John Lamberti at the University of California, San Diego. The number there is (858) 966-8030.

(06 April 2013) Jamari turned three today.  This is something I posted for his birthday: “They told us he probably wouldn’t make it to term and that we should consider aborting. He was born a few months later. They said he is not expected to survive past the first week and that we should focus our efforts with the hospice providers. He came home the next week with a tube in his nose and a lot of medicine. They said babies with his condition statistically don’t live past a year and that we should make arrangements. He tasted icing for the first time on his one year birthday. They said because he is predominately blind and deaf that his communication would be limited at best. He laughs when he’s happy, shakes his head when he disapproves, and cries when he’s in pain. They said he would never walk. Since he turned two he’s been using a specialized walker to get up and down our floors. They said they can no longer assess future impediments to his growth and development and that he would go at his own pace. He stole their hearts. HAPPY THIRD BIRTHDAY JAMARI!

(04 June 2013) Jamari is scheduled for heart surgery on 17 June to correct his Tetralogy of Fallot.  This is probably the scariest thing I have encountered in my life.  I almost fell off a mountain while riding an elephant (I thought the elephant was going to roll us), I have been inside a cage with four tigers, and I have been deployed to Iraq but this is by far the most petrifying thing I have ever dealt with.   I do not know how I would be able to function without my little guy.  My wife tells me that I have to think positive and only have good thoughts.  I try my best not to think negatively but every so often those thoughts creep in my head.  I like to be prepared for everything as much as possible but I definitely have difficulties with this because it is out of my hands.  Until you have a special needs kid, I don’t think you really understand what a blessing they are.  Most people just see the long hours, the constant and tedious care it requires, and how it drastically changes your life.  I don’t think they see the great things about it.  With most “normal” kids, we find ourselves as parents doing our best to teach them the things they need to know in life to survive.  We teach them to be strong and stand up for themselves.  We try to teach them patience in this new “I want everything now” society.  We also try to teach them about how to be hard workers and how that is the way you overcome obstacles in life.  Trisomy kids are the opposite, they teach us everything.  They teach us to be strong by making tough decisions, going against unsupportive doctors,  and dealing with the most adverse medical situations (remember the first time the G-tube popped out and you were alone).  They teach us patience as they go through life at their pace when they are ready.  Charts, graphs and words like “normal” or “average” do not apply.  They teach us what hard work really is.  I used to think it was just working twelve hour days and not getting a chance to eat all day.  That was hard work and still is for most people.  My son is only three and has undergone atleast six surgeries (I lose count sometimes); that is hard work.  The doctors were not sure he would be able to sit up on his own but through physical therapy, Jamari can sit up on his own; that was hard work.  I now know what hard work really is and Jamari does most of the inspiring and teaching in this house.

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

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Nora


Nora ~ Full Trisomy 13 ~ Born:  February 9, 2013


A little bit about us... My husband, Jerry, and I have been married for two years and Nora is our first baby. I'm 35 (the dreaded advanced maternal age) and Jerry is. 37. We live in Atlanta but met while living in NYC - I was there for 7 years and Jerry for 3. I am in healthcare IT sales and Jerry is a recent law school grad (late in life career change) and working at a bankruptcy firm. As I mentioned, we declined all prenatal screening so both Nora's sex and her condition were a surprise.

A bit about Nora...as we all can agree, our kiddos are amazing and she continues to defy the odds everyday. She was sent home on day 10 of life with hospice care and we started the "death watch" so to speak. Well,
Nora had other plans and just continues to kick but. She has an asd and vsd and both are showing very promising signs of closing. Her murmurs are now totally undetectable and her pediatrician (with cardiology agreement) has been trying to get me to titrate her lasix dose DOWN but I'm too chicken. She's on room air and has been since day one. We had some serious scares with apnea in the beginning but she has now gone a couple MONTHS without an episode. Her only true outward manifestation is anopthalmia though we are hopeful that she can sense light and dark out of a teeny tiny left orbit. She currently has an NG tube though we are working very hard to get her a g tube or button placed. She feeds by bottle but is very inconsistent although I am very hopeful that removal of that annoying tube will improve that. She was recently dx with a bowel malrotation so we are in the process of finding a surgeon who will correct and place a button in the same procedure.

She was originally dx with holoprolosephaly in the nicu yet the study was technically inconclusive since she moved (day 3? of life). We are also hopeful that we can get this test repeated while she is under general for the gut surgery. In all, Nora is doing fantastic. She weighed 12 lbs 6 oz at her peds appt last week, up from 5-4 on her day of discharge. Se is happy, active, sweet and beautiful. I have attached some pics.  



God bless you all and I hope to meet some of you at the SOFT conference in July!


We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

BACK TO LIVING MIRACLES PAGE