Unfortunately she was unable to do the actual test for fluid because Wysdom was freaking out a bit and he was not going to let anything else get done to him. I have never seen him cry so much. So we are set for an appointment in September, with an ENT. The Audiologist thinks that they may not put tubes in his ears because he has so much else going on.(ng, reflux, heart issues...)Of course I am not happy about the hearing loss but hopeful that it can improve with fluid drainage or with time. At least the right ear seems to have a better level of hearing. To tell you the truth we have been through a lot this last week(plastic surgeon, eye appointment and audiologist)..so in part I am glad that we got some good news. I am curious how many of your little ones have had fluid issues and tubes put in?
Thursday, July 30, 2009
Wednesday, July 29, 2009
Monday, July 27, 2009
The thing is that we had to leave 2 hours before the appointment to get there on time since it is in another city and the traffic there is crazy. Julian and I got up at 5:00am, packed all our bags and car and left at 6:00am for our 8:00am appointment in Toronto. We took our 3 year old daughter with us. This is no easy feat to pack up for a road trip with Wysdom. It means packing numerous items such as (syringes, flush water, an extra ng tube, medications, stethoscope, face tape, kangaroo feeding bag and pump and many other needed items that I won't bore you with).
I was particularly proud of myself... we got to the appointment on time and in an organized manner. We were then able to go to Starbucks in the hospital and have my daughter eat her breakfast on a bench in front of Starbucks, while my son got his ng feed in the buggy and my husband surfed the net. This doesn't seem like much, but it was. We were able to function quite well and it felt like an outing to me. I even commented on this on the way into the parking garage that we had "come a long way" in getting ready for and going to appointments. I was so proud how smoothly things went. I was feeling thrilled that I had finally had an easy day even though we had a busy morning. I had done it!! I was one of those mom's that can seem put together and get through the hectic times. Ya for me.!!! You know what I mean, you sometimes see those mom's who just seem put together no matter what they face!!!
So we packed our two children in the car and all our gear and I drove off to the exit. After going up a couple of levels I heard a huge "bang, bang, smash and then glass shattering". OOPS....that was the glass bottle that I had placed on the roof of the car while I packed.....we laughed and laughed.....I guess I don't quite have it together yet!!!! Being a mom is definitely the most challenging thing that I have done and some days I just have to laugh at it all and know that I tried my best.
Sunday, July 26, 2009
Really, I've had my choice in all of this!! Over a year and a half ago I was sampling in raw foods and eating lots of vegetables, fruit dishes, smoothies and fresh juices. It seems to me that under all the changes, the unknowns and the hospitals, my diet has taken a nose dive. Instead of making the most of my food, I have been just grabbing something on the go or worse, from the cafeteria in the hospital. Even though we are not in the hospital now, I still find that we are on the road a lot to several different hospitals( 4 to be exact) for numerous appointments. My husband and I are usually in a rush and just forget to eat or don't have time. Next thing you know we are starving and low and behold...we end up at a fast food chain again.
Now that I have outed myself...I am making a vow to change. We can't continue to survive in this manner of running off to a hospital appointment and grabbing something from the road or cafeteria.
So I am now going to try to embark on a new health regime and get back to eating like a nutritionist would and should! Wish me luck and feel free to share any of your yummy healthy favorite recipes if you like. Maybe it will help inspire me. I would be really curious to find out if any of you also fell of the healthy food wagon while dealing with the stress of your situations and lack of time?
Ps. Next is to incorporate my new old yoga routine back into my life. Oh and yes the healthy diet will have to start in a day or two as we are leaving for the hospital at 6am tomorrow to get there for an 8:00am appointment. No really... I will try to find something healthy on the way:)
Friday, July 24, 2009
Well today's conclusion is that at the end of this appointment we got another appointment to come back in a month to see the doctor. Wysdoms right eye tends to turn in more and therefore he uses his left to compensate. It really is much more complicated than that, but that is the jist of it. So right now we can put a patch over Wysdom's left eye for 20 minutes a day to help strengthen the right eye.
A patch over his eye wouldn't be so bad if he didn't already have a ng coming out of his nose and a healing pressure spot on his forehead. What can I say my baby has a lot of things going on right now. He is such a trooper.
I am really praying that nothing surgical has to be done and that it can heal or strengthen on it's own. I am just visualizing all the upcoming things that he will need done...maybe a g-tube, maybe tubes in his ears and possibly plastic surgery for his pressure spot on his forehead ( I am still really upset about this). I wish I could minimize all the interventions and appointments that we have....I just want him to be left alone for a bit. We have had such a crazy time with the heart surgery and other complications that I just want him at home playing...Is that bad of me? Yes, I too am getting tired of the numerous appointments...but and there is a but. I am also grateful that we have the ability to have access to all of these wonderful services and if they help him I am there in a minute. So I will suck it up an prepare for the next appointment on Monday, to the plastic surgeons.
Thursday, July 23, 2009
During the final week when we were deciding what to do these events occurred. My sister had a little girl come on the swing next to her daughter at the park, the girl had down syndrome. Within the span of another day or two my sister encountered another child with down syndrome . Then the ultimate sign was that while my husband and my sister were at a local festival they sat down at a table to eat something. While sitting at the table, a teenage boy with down syndrome sat right next to my husband. He casually sat there eating french fries. My sister and my husband were in awe. We couldn't believe that this was all happening within a week......Isn't this amazing considering that my sister or husband never really met anyone with down syndrome before I was pregnant with Wysdom.
It still gives me goosebumps when I think about it. I have to believe that they were guiding us on a path to acceptance. Ask for guidance or a sign and you will surely get one......that's the magic of the universe. Now it's a little more than a year later and we couldn't imagine our lives without Wysdom, our little chubby man.
Tuesday, July 21, 2009
- Writing a Journal
- Taking a break( mine was a Starbucks green tea latte- my break time ritual)
- Reading books ( mine was 800 pages and I read it all at his bedside)
- Taking short walks
- Connecting with other parents who have gone through it or are soon to have their child going for surgery
- Writing a care page
- Getting sleep when I could
- Looking at pictures post surgery prior to our surgery date
- Asking the surgeon and medical team all possible questions (during pre op)
- Researching OHS procedures
- Taking vitamins(B vitamins help with stress and keep energy up)
Useful things to have?
- Hand cream!!! Your hands get dry after sanitizing so much
- Tea bags( you can always find hot water)
- Books, pens, paper
- Phone cards
- Loose change for parking
- Stuffed animals, musical toys for your child
- Pictures of other family members to post on bed/crib
- Friends and family visiting you
- Baby socks as their feet get cold
- Your advocating attitude
- Cd's and cd player (especially if your child gets jumpy with all of the commotion in the recover room such as nurses entering in and out.)
My Hospital Tips
Since we have spent over 3 months in total at three different hospital since Wysdom's birth, these are things that I found that worked for me.
- Be an advocate for your child. Speak up if you are not sure of something or someone
- Have everyone clean their hands
- Sanitize the crib/bed rails and also ask staff to do so
- Ask staff to sanitize stethoscope
- Central line management is crucial in managing bacteria
- Beware of pressure points from cpap masks on child's forehead(trust me on this one)
- Advocate if you do not like or get a bad feeling about a staff
- Praise the staff that do a great job. Thank them, treat them to cards, coffee etc. and appreciate how they take care of your child with the love of a mom.
- Cry when you need to..you usually feel better afterwards
- Ask for help if you need it
- Make sure to ask about medications and times, read labels on medication
- Check your breast milk label if you are still breastfeeding
- Read discharge summary for accurate information
I hope something in here helps someone who is going for an upcoming surgery with their child. You can do it. You may think that you can't....but you can and you will find a strength that surprises you. The outcome is sooo worth it. The energy that Wysdom has now is amazing compared to how he was pre surgery. So so worth it!!!
ps I love this picture of pre op...he reminds me of superman in his cape!!!
Sunday, July 19, 2009
As it turned out our hunch was right and we had a girl. So the name Wysdom got tucked away. Little did we know that having spoken of Wysdom at that time sent the universe working. Two years later, a baby boy was to be born.
When I became pregnant for the second time, Julian and I immediately remembered the name Wysdom. However I didn't know if it fit anymore. Could we or should we give our son the name Wysdom while knowing that he had Down syndrome? Would he get teased more? Would he like it? Or be able to say his own name? Even though I loved the name, I somehow now had reservations about it. It was Julian's ultimate determination and insight that turned us back to the name of Wysdom when I strayed. Why shouldn't he have this name? Wasn't he created in thought two years earlier? Why shouldn't he have every right that any other baby would.? And so it was written so to speak, and Wysdom was chosen. Wysdom Elijah Gordon was born.
Now we love it and couldn't picture him with any other name. Our son needed a name that could stand up beside his sister's name of Blyss. Now we think that no other name would seem to fit this little soul who has touched so many lives with his spirit and joy.
Saturday, July 18, 2009
With my daughter I had a midwife and planned to have a natural birth at home. Although the home birth was not a possibility, I had a birth plan and had wonderful prenatal care. When I unexpectedly became pregnant with Wysdom , 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 Doula from my coworkers and she was able to give me support during the labour. (Doula contact at bottom of post)
After 12 hours i 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, and is.
MAAntenatal, Labour, Postpartum and Sleep Doula
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.
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…..