Surgery is done and all is good

I just wanted to let everyone know that Wysdom did have his surgery this morning at 8:00am. Everything went really well. We got a room quite a bit later but we are happy. The hospital is swarming with the swine flu so we are keeping a low profile. Wysdom has been a little cranky as expected. However he did smile and his cheeks look so good tube free!!! I just got into Ronald McDonald House and I am so happy that we have a place to bring Blyss.

Thanks everyone for your prayers and support for our family. It worked!!!!!I am exhausted and am going to hit the bed. Thanks again.

Poem For The Day

31 For 21 Challenge: Day 30

It is 4:00am and we are just packing up to go out to the hospital. I though that I would share a poem for the day and start the day off right.

A child is like a butterfly in the wind.
Some can fly higher than others;
But each one flies the best it can.
Why compare one against the other?
Each one is different.
Each one is special.
Each one is beautiful.
Author Unknown


"The soul is healed by being with children" Fyodor Dostoyevsky

Guess what? Yup Surgery is back on.

31 For 21 Challenge: Day 29

Here is a picture of Wysdom with his contraption on. He wore this all night and was NOT happy.




Here's the good, the bad and everything in between.Yesterday after we relaxed and got Wysdom comfortable, I started to make some calls to all of the doctors and therapists that we frequent. I rebooked everything that I cancelled earlier this month. I also booked Wysdom's appointment for his H1N1 shot.( I have decided to get it but that's a whole other story) Anyways after about 10 minutes of making all of these calls, we got a call. Yup you guessed it. They rebooked his surgery for Friday at 8:00am. They can't guarantee that the same thing won't happen in that we get there and it's cancelled, but we have both of the original surgeons involved so we are going to give it a try. I am excited and tired at the same time. I am truly ready to move on. The thought of having the ng for another month was very frustrating since his skin and throat are so irritated. So we are happy. Luckily I didn't unpack too much. So we will be leaving the house at around 5 am to get to the hospital for 6:30am. My mom again, will be taking Blyss for the night so that provides us with some help. We may also get a room at Ronald McDonald House tonight which would be great as they have games for Blyss and provide great free accommodations.

On a bad note I got sick last night. I actually had the scare of my life because I starting having intense stomach cramps and had to run to the bathroom( no pun intended) I was quite sick. I thought that maybe I had the swine flu or something crazy from the hospital that I may have picked up. After a couple of hours of cramps and upset stomach I started to feel better. I read over the symptoms for the swine flu and knew then that I didn't have it. So we have come to the conclusion that I may have gotten food poisoning from the lunch we had. I ate a salad with my diner and after that is when I got sick. I am feeling a little rough today with all the chaos and stomach cramps....but I am on the mend. I have been wearing a mask for the last 2 days anyways just so that Wysdom wouldn't catch anything.

I just wanted to say thanks to everyone for supporting me during this busy and crazy time. We will keep you posted. Keep your fingers crossed that the surgery is a go. Everyone have a Happy Halloween!!!!

Surgery Cancelled. Is it too early for wine?

31 For 21 Challenge: Day 28

Just to let you all know we just walked in the door to our house. It has been another crazy day today. Just wanted to let you all know that Wysdom's surgery has been cancelled. We left at 7:30am this morning all packed for several days and drove an hour and a bit and when we got there the surgeon told us that it was cancelled. He said that the hospital is over flowing and there are absolutely no beds. There is an OR spot but no where to put him!! We are being rescheduled for later next month. So frustrated!

Anyways we bumped into our cardiologist and he did a whole work up on Wysdom and then sent us home with this contraption that is called DCG or Dynamic Electrocardiography which will stay on Wysdom for 24 hours and then we have to drive back tomorrow and drop it off. It has about 4-6 leads that stick on his chest then he is wrapped in tape and has a mesh shirt put on him. I will take some pictures later, now I just need to gather myself and relax for a bit.

Thanks for all the support and prayers. We truly do appreciate it. Even though today is crazy it's still worth it because we love this little man so much!!!

Pre Halloween: Snow white a frog and a devil

31 for 21 Challenge: Day 28

Well just in case I didn't get out of the hospital in time, I got the kid's all dressed up in costumes last night. Sorry there is no time to edit the pics...but just wanted to share our fun. Wysdom has 2 costumes. The frog was a costume that Blyss had when she was a baby and the devil I just picked up. Truly he is an angel, but that is all that they had left in his size. Well it's one am and I am off to bed. Enjoy. I love the frog at the end. I am going to do some editing and blow that one up. And of course Blyss makes a perfect snow white.

The Hospital: Getting Ready and Getting Nervous

31 For 21 Challenge: Day 27

We are spending the day getting ready for Wysdom's G tube and ear tube surgery tomorrow. Really I know it is not that major of an operation and I shouldn't be to worried or nervous...but I am. It seems with each new hospital visit and procedure that I tend to get more and more nervous.It is like all of the previous hospital stays come flooding back to my mind with each new one. Crazy!! Maybe I am more nervous because I now know what will happen or maybe because Wysdom is a complicated little man. I know I will get through this fine as I made through his 8 hour OHS and three week recover. It's just pre surgery jitters and butterflies.

This time I am optimistic that our stay will be good and just praying that we can stay germ free. We will be on the general ward as we do not have private insurance so this is a bit of a concern. However on the plus side, we have stayed at 3 hospitals for extended lengths of time and this one seems to be the best so far for us.

We have to be there at 9am for his 10:30 surgery. Although I don't have nerves of steel I have been blessed with the ability to plan, organize and coordinate things. I think my previous jobs in social services and outreach have honed my skill. So our agenda today is the following:

*Pack a bag of toys, clothes, blankets and diapers.
*Bring health card, phone book and planner
*Call cardiologist to see if they can visit him on the ward and do the EKG while we are there instead of next Tuesday so we don't have to make a second trip
*Pack a bag for Blyss( she will be moving around and staying with us and also with my mom)
*Pack all of her and Wysdom's Halloween costumes...as I am not sure where we will be.
*Pack all of his medical and feeding equipment including his pump, syringes etc.
*Call Ronald MacDonald House to see if they have room for us as we live an hour away from the hospital and only one parent can stay overnight and we will also have Blyss.
*Find and have backup numbers of hotels just in case we can't stay at RMH
*Review Wysdom's restricted feeding protocol
*Bring Blyss to swimming today
*Pack breast pump and all attachments
*And then the usual stuff like making dinner and giving baths etc.

Oh yes and BREATH!!!!! I am sure there is a lot more but you get the idea of how my day is going. I had planned to make homemade Halloween cookies with Blyss but instead I passed that duty onto my mom. (gotta love mom's)

Well that's my post for today. Wish us luck and I will keep you posted I am going to try to keep up with the challenge as we are almost done. We are told that we will have to stay for 3 nights for sure. Then as long as everything is okay we should be home on Halloween Day. Last night I got Blyss and Wysdom dressed up in their costumes and took some pictures so I will share those on Wednesday. I am so excited to get the ng out of his little nose and kiss those two cheeks!!! He is going to be so happy to get rid of the ng as I know my extended family is too. Well I am off to swimming.

Pumpkins and Hot Chocolate

31 For 21 Challenge: Day 26

Well after yesterdays drama I thought I would post some fun pictures. We do have a lot of fun around here to so it's only fair that I share that as well.We have gone to the pumpkin patch twice this month. This is my first time ever in my life going to a pumpkin patch. Blyss had a great time and so did Julian and myself. I am sure Wysdom loved it too. He was licking the fresh crisp air.Unfortunately his new snow jacket is a little big and awkward for him, but otherwise he was great.


Here is my big boy!!




Blyss is loving the activities.




Some yummy squash that Blyss picked up that we made into soup.

Crazy Day: Never a Dull Moment

31 For 21 Challenge: Day 25(late)

Well today was an eventful day. Just as my in laws drove in from out of town for the day, Wysdom pulled out his ng tube again. We always go to the hospital where they put it in. It has never been an option that we put it in ourselves because he has the weighted ng tube and therefore he gets an x ray done each time a new one is inserted. So today when my husband called the hospital the doctor was like "can you feed him his formula with a syringe for the night?" Ah NO! Big NO we can not. He only takes a few mls from the syringe. For Wysdom to take 135mls would be impossible. The doctor told my husband that the pediatric ward where we would go to get the ng put in was swarming with the flu and that the nurses were also very busy.

Okay...so plan B. Put the ng in ourselves, something that we have never done. So we got all prepared and my husband tried the first time to put the ng in. He had a screaming baby and lots of resistance. So I tried and got it in. However when we checked for the pop(with a syringe and stethoscope to see if we could hear air in the stomach)we could not hear anything. Normally we are able to pull back some air in the tube to see if we get some stomach fluids. If there are fluids, then we know that the ng is in the stomach not the lungs. Well when we pulled back today, we got blood. Can I just say that I was totally freaked out for a bit. I thought that I punctured something and hurt my baby. So we quickly pulled the tube out. This was not a great idea since we knew we had to put it back in. So calmly we discussed what it could be and figured that it was probably blood from his throat or so we hoped. So I put the ng back in again and pulled out some blood. Honestly, it looked like mucus with blood mixed in it. So we called the hospital and the doctor on call said that it was probably that and he wasn't surprised at there being some irritation. So it was done and in. Yah we didn't have to go into the hospital and that's a good thing because I definitely don't want Wysdom getting the flu especially with his g tube surgery coming up on Wednesday. Poor thing though, I can't wait until the ng comes out so his esophagus can heal. So after that we all calmly sat down for something to eat. My first request...WINE!!!

Wysdom's Birth Story

31For 21 Challenge: Day 24 (late again)

Well I need to go back to the delivery to give you an idea of what a fighter he is. During the pregnancy he faced many issues such as too much amniotic fluid, small size and faulty umbilical cords. I was stressed out a lot however Wysdom calmed me most of the time with his regular movements and flips. He was a very active baby. I also became a part of the down syndrome online group at Baby Center. This gave me tremendous support durring my pregnancy. The moms on this board talked to me daily and answered my questions and concerns and listened to my fears. My fears turned from being about a baby with down syndrdome to wondering if he would survive. Three weeks before my due date they decided to induce me. I was given two days notice that this was going to happen and the main reason was that Wysdom's growth had stunted and my umbilical cords were faulty and not supplying what they needed to be. For a couple of weeks his growth remained the same and he was a little one only weighing around the 4 pound mark. So we headed for the hospital.

With my daughter I had a midwife and planned to have a natural birth at home. Although the home birth was not a possibility with her, I had a birth plan and had wonderful prenatal care. When I unexpectedly became pregnant with Wysdom and before the diagnosis, I envisioned the same process that would include the most natural birth plan.

However I was in for a bit of an adventure. During the delivery my husband Julian, got food poisoning and he had to be absent for most of the delivery. The birth that I had anticipated had turned into a crazy ordeal of "let's try this procedure" and "we have never seen this happen before". For someone like me who wanted to use a midwife and have a natural birth...I ended up with the most technical event know to man.:) I had things done that I have never heard of before..."like cervical stretcher", "probe to be placed in fetal skull", "ultrasound during labour", 'can't find the fetus" and much more. Fortunately I was blessed with the gift of a Douala from my coworkers and she was able to give me support during the labour. After 12 hours it was clear that I was not going to be able to have the baby vaginally. Wysdom's heart rate would slow down every time my medication for the induction went up. I wasn't able to dilate over 5cm over a 12 hour period. It was the scariest event ever. I thought that we were going to loose him.

Finally I was wheeled away for an emergency c-section. Unfortunately an epidural couldn't freeze me properly for the procedure. All but an apple size patch of skin was frozen. For whatever reason this patch would not freeze even at the highest possible dose of drugs. Next came the spinal and next came faces of panic when I still felt one area. Finally, the apple size patch froze and the procedure began.

Even though Wysdom's heart rate was unstable through out the labour, he came out strong and screaming and feisty. Feisty is what they called him!!! And yes I got what I wanted more than anything else...to hold my baby. right away.. and what a beauty he was. I truly think knowing about his diagnosis while being pregnant had been a bleassing for me. When he was born, all I saw was a baby. I had no fear, no tears of sadness just plain old magical love. Love at first site. He was perfect and of sooo cute. All of the things that they focus on in the ultrasounds like nuchal fold, space between toes, curved fingers didn't appear to me and still don't.

He didn't need any oxygen and was breathing fine on his own. After we held him and took several pictures they took him the the NICU. He was in a little incubator for a couple of days. The only medical thing that was really needed was the intervention of the ng to help him with getting his nutrition. He had a great suck but would tucker out after a short period of time. Because of his AVSD they did not want to tire him out. As well he was only 4 pounds at 3 weeks shy of full term so they wanted him to gain weight.

Although he did great at the start we remained in the hospital for the next 2 months. Feeding became the major issue that kept us there. The hospital wanted his weight to go up and his feeding routine to be established. I breastfed him and then he was topped up with the ng for the first month. He was such a fighter and has a strong suck. However even with the strong suck we had some latch issues. After the first month we were transferred to a local hospital. This is where Wysdom picked up an oral aversion and stopped nursing and taking the bottle. This is also where he caught rsv. I guess you can say that our move to the second hospital was not the best choice for us. This is really where we saw Wysdom fight for his life for the first time. He was put on an IV while fighting rsv and was almost sent back to the first hospital for intubation. This Iv took four hours to get in. It was a nightmare. Luckily for us after a week or so the worst was over and he seemed to be able to deal with the rsv and started to recover quickly. After exactly 2 months we were finally discharged with Wysdom, his ng and a handful of medications for his heart. It didn't really matter to us....we were just so happy to be home and this is where we saw Wysdom start to thrive.

How we found out that Wysdom has DS.

31 For 21 Challenge: Day 23

I am pretty tired since Blyss and I are sick, so I am reposting the story of how we found out that Wysdom had down syndrome and the journey we went through.

Here it is:

I had a two year old girl named Blyss when I found out that I was pregnant. It was quite the shock, the pregnancy I mean. My husband and I wanted more children but we were not ready yet. We had only been married for 2 years and months earlier we just moved into our new home. I was in such shock when I found out that I was pregnant that I did the pregnancy test several times. After purchasing the third test…we realized we were going to have another baby!!! Fast forward to a year and a bit later and we now have Wysdom, an eight month old miracle baby with unparalleled strength. This post is the story of how Wysdom came to be.

Weeks prior to finding out that I was pregnant, I actually thought that I had something wrong with me. I was experiencing lots of cramps and pain in my side. At the time I worked at a nutrition store in town and some of the staff, including myself would try to self diagnose. Did I have IBS? Did I have food poisoning? I was sent for an early ultrasound to even see if I had a tubal pregnancy. Nope…it was not’t IBS (irritable bowel syndrome), I was pregnant!!
When the doctor asked if I wanted to do the screening I agreed and was sent for my ultrasound and blood work at a nearby clinic. It’s funny how you can look back and see the instant your life changes. During the ultrasound, the technician acted funny. I couldn't’t quite put my finger on it, but she seemed tense or distracted. She asked several questions about my daughter Blyss and how she was doing. I just knew that something was not right. At this particular clinic, they give you the results to carry over across the hallway to hand into the receptionist before you complete your blood work. With this little yellow paper in hand I walked over to the receptionist, but before I gave her the sheet I memorized the nuchal fold number on the page. To be honest I don’t know why, but I just did.

Later that evening I popped on the Internet when I couldn't sleep and looked up anything I could find on nuchal fold thickness. I just knew that something was wrong and I cried myself to sleep after looking at many different pictures of what could be. In the morning and next day I tried to shake off this vibe that I had. I went out shopping with my sister and mom, but did not feel that good and was quite distracted. Earlier that morning I had told my husband about my suspicions that something was wrong and he called the lab to see if he could get any information. Of course not!! After shopping that day I came home and one of my first words were “did anyone call?” The answer to that questions shattered our lives.

We were told that the nuchal fold was thick (which I already knew). We were also told that there was a marker on the heart and a mass on the brain. My midwife gently explained to me about a counseling appointment at a hospital about an hour away that I could attend in the next day or two. Of course we wanted go and get more information. After meeting with the counselor we decided to go with CVS testing to see what was wrong with our baby. I would not do amniocentesis because it was too early and anyway the thought of the needle freaked me out. To me the cvs testing sounded safer and the doctor who would perform it seemed quite confident in our meeting. She was very nice and very straight forward and open. She later would say things like “I am not sure what you should do, maybe pray” She never pushed anything on us. We also met a lovely social worker. In about a week’s time we got the results. Prior to the cvs results we were told that our blood work suggested the highest risk for Trisomy 18 with a one in 6 chances of the baby having it. We met with our counselor and she gave us the results- The baby doesn’t have Trisomy 18, or Turner’s syndrome we were told, but rather Down Syndrome. We really did not know what to do as we never thought we would be in this situation. Yes I was in my mid thirties, but we weren’t prepared for this. Really who is? Just hearing those words put us in shock!

Since we found out so early in our pregnancy around the 12th week or so, it left us with way too many weeks to talk about what we would do. We talked, cried, slept, argued and went through hell those weeks. We seemed never to be on the same page. Our main issue was fear and money. We thought about how could we financially handle this pregnancy? Also we were afraid of how it would all turn out. Would the baby walk? Could he or she talk? All of these were questions that we had to find out about.

Over the next several weeks we went through an immense amount of stress. Friends and family all had different ideas of what to do. Yes they would say that the ultimate choice was mine and that whatever we decided they would stick by us. Some thought having this baby would ruin our lives. When the stress became too much to bear, we decided to book an appointment for termination the following week. When I thought about it though, I would get a sick feeling in the pit of my stomach. I researched how and where the termination would be done and in a week’s time it would be over we thought. However on the Friday afternoon about a week away from the appointment, my sister noticed that I was ill at ease and told me “Don’t do this if this is not what you want to do” At that moment I called the counselor and requested more guidance. She let us know that we still had choices to do whatever we wanted. In the meantime we met with a family with a little girl with Down Syndrome, I talked to a mother of a teen with Down Syndrome and I read voraciously. The mother of the teenager said this “if you want to parent this child, you will and can”. This and the families we met stuck a cord with me. One afternoon when the counselor called I asked (without my husband knowing) what the sex of the baby was? I just needed to know. It’s a boy she said! Finding out the sex of the baby was the last thing that tipped the scale and our final decision was to keep our baby. It made the baby real in our minds.

The pregnancy was hard, with stress and medical issues popping up here and there. Too much fluid, small baby, stunted growth were things that we heard. The most shocking news was that Wysdom had a heart defect called AVSD and that this would need surgery. Wysdom was delivered 3 weeks early due to faulty placenta that didn’t allow him to grow. He was born via emergency c section on November 27th 2008 at the weight of 4 pounds and change. It was love at first sight as he screamed and fought his way into this world. All the medical staff said he was feisty!! I should have known from the delivery that he was a fighter and that he was meant to be here, but that’s a whole other story that I will save for the next post…..
Posted

Taking it easy

31 For 21 Challenge: Day 22

We are taking it easy today. We spent the early part of the day with my grandmother. Blyss has picked up a cold even with my best efforts to keep the house cold free. My crazy hand washing and sanitizing,immune boosters and vitamins and such did not keep us out of the cold zone. I am hoping that she will get better in a couple of days and that Wysdom will not catch it as he has his g tube surgery next week. So we are just taking it easy and trying to get better.

e newsletter

31 For 21 Challenge: Day 21 (late)

Here is a description of an e newsletter called Bloom, that I have joined. It is not specific to down syndrome but shares information on many different things from books, articles, to online videos relating to children with special needs. I find it interesting so I thought that I would share.

The organization is a is located in Toronto, Canada and is called Bloorview Kids Rehab and is is Canada’s largest children’s rehabilitation hospital. This is their vision: "to create a world of possibility for kids with disability. We pioneer treatments, technologies, therapies and real-world programs that give children with disabilities the tools to participate fully in life".

BLOOM the magazine addresses the unique joys and challenges of parenting kids with disabilities by combining firsthand family insights and advice from leading professional experts.You’ve reached the online family of BLOOM where you will find community, friendship and best practices to assist you in raising a child with a disability.
To get their e newsletter go to the following link http://www.bloorview.ca/bloom/

An interesting book.....Changed by a Child

31 For 21 Challenge: Day 20

I have always been an avid reader. Things did not change when I found out that I was pregnant with Wysdom and that he had Down syndrome. I devoured books. One of the books that I am reading now is called Changed by a Child by Barbara Gill. My blog is acting all wonky so for whatever reason I can't post the link.

This book is great because it is filled with short one page stories and inspirations. Each comes with a quote at the start from an author or a family with a special needs child. It is not exclusively written by parents with children with Down syndrome; however the author does have a child with down syndrome. I like it because for us busy moms we can flip through and read a short story at a time when it gets really hectic.

Being an Advocate!

31 for 21 Challenge: Day 19

Again and again I learn that as parents of Wysdomn we MUST be the strongest advocate for our child. We have learned this from Wysdom's open heart surgery, several months in the hospital and a battery of medical visits and appointments. At first we used to think that professionals had all the correct answers and best practices in mind for our son. That the pediatrician would remember which medication they prescribed. That our doctor would have an idea of the side effects of the drugs they prescribed for our son. This has especially been the case when Wysdom was first born. I mean I have never had a baby with Down syndrome before, and especially never had a baby with a heart defect. Truly neither had any of my friends or coworkers. So naturally I looked to the medical profession to tell me what is best. What formula to use, how to feed him, what medications to go on and so on. This was really compounded by the fact that my son has a heart defect. That created a sense of fear and dependence on the medical field to help keep him alive.

Still all in all it is our right and responsibility as parents to ask questions? It is our responsibility to discuss things that are a concern to us and to get a second opinion if we are not sure of something. We as parents are ultimately the ones responsible for our children. For example, now when I am in the hospital I ask more and more questions. What is the name of the drug? What is it used for? What are the side effects? Why does he need it? These are things that at first, I took for granted. I used to just trust that the medical field would know more about certain matters and that the right thing would be done.

Over time my husband and I have learned that we can and must monitor and get the doses of medication adjusted when we feel it is needed or has been neglected by the doctors. It is us who double checks what he is being given in that tiny needle or syringe while in the hospital. It is us who states that our child is not well and insists extra tests. It is us that know how hard it is to get a vein for and IV site. We know our child best. This is not only the case in the medical field but also when dealing with therapists and other professionals. After having a visit from a therapist who stated that she had never worked with babies before, let alone anyone with Down syndrome, my husband and I were concerned. How could someone who states openly that they have never worked with children and have only done physical therapy for seniors, be chosen to work with our son. At some point in my life I may have settled for it, but not now. We have to speak up daily to ensure that we are getting the correct services and care for our son.

We are responsible for our child’s well being. I think this especially rings true for parents with little ones that are medically fragile and are exposed to numerous medications, tons of test and multiple surgeries. We the parents, are the central hub of all the information. We tell the ENT what the surgeon said and then we tell the pediatrician what the cardiologist said and so on and so on. There is no system developed for specialist to communicate and share information with each other. They often work independently in their own little area and often don’t communicate with others. We are the nucleus that takes in all the information and disseminates in to all.

We are there to comfort and love our child, to be their cheerleader but also there is a need to advocate on their behalf, to say what they cannot say, to see what no one else sees and to protect them with all of our being. We are their advocate and their voice!

A newborns conversation with God: