Saturday, August 29, 2009

Look "I did it!"

We got our "I did it" shirt in the mail a little while ago. We just took some pictures of Wysdom wearing the shirt for the first time this week. Isn't this shirt adorable? It is inspired and created by Jennifer over at Three's A Charm, where proceeds from this shirt will go to purchasing a copy of the book "Gifts 2" that will be donated to local organizations and hospitals in the Sacramento area. Isn't that so cool!!! For more information check out Jennifer's blog post.

Wysdom has accomplished lots of things so far in his 9 months of life. Here are some of the things that he has done.
  • Had open heart surgery and battled back from numerous complications
  • Rolls over by himself
  • Is learning to sit up
  • Smiles a thousand times a day:)
  • Says "dad da da da"
  • Claps his hands
  • Lights up a room with his smile
  • EATS oatmeal and veggies and fruit
  • Plays and interacts well with toys and people
  • Battled and survived RSV
  • Went on his first outing to African Lion Safari

Wysdom has grown into an active little boy who gets into lots of new things daily, too numerous to mention. We are so proud of you Wysdom. You did it!!!

Tuesday, August 25, 2009

Good news...cardiologist appointment

Yesterday we went to Hamilton for a cardiologist appointment. They did an echo on Wysdom. The overall prognosis since his open heart surgery in May is positive. Initially they had mentioned that he may need a second surgery. Today they still think that it could be a possibility that he would need another surgery in couple of years or he could be just fine. Right now everything looks great and there is no fluid accumulation around the heart. This was a concern as I have cousin who died after OHS many years ago due to fluid around the heart. There is some mild leakage of the mitral valve on both sides, with the right side having a slight increase of leakage, just slightly over mild. So right now it is considered minimal and Wysdom is doing well. I am very happy that the appointment went well and that he is stable. Yah!!!!!!!!!

The meeting was very calm, but Blyss and Wysdom joined up together to make a lot of mess in the office. Blyss held a huge bottle of bubbles that they had in the cardiologist office. While holding the bottle( the size of a large soap bottle) Wysdom proceeded to stretch and kick the bottle out of her that the whole thing spilt on the floor. Life is never boring:)

So the next step is that we go back in 3 months(yes..fewer appointments) and then we will likely have a sedated echo in another 6-9 months. I am so relieved that he is doing well. They also took him off his last heart related medication(lasix). So he is now down to just 2 reflux meds.

It turned out that the woman doing the echo is a girl that I went to high school with. So it was nice for us to catch up and for her to do the echo. Wydom must have known...because this was the calmest that he has ever been for an echo. She even held him for quite a bit after the echo, so that was nice. On another note, today we met with the feeding team and had some big improvements too...but I will post about this later in the week.

Thursday, August 20, 2009

I cannot lie...

I cannot lie. I am tired! I am tired beyond belief, a kind of tired that a 3 or 4 hour nap does not erase. A kind of tiredness that several naps do not erase. I can feel it every part of my being. A tiredness that comes from months in the nicu, rsv, ohs, reflux and feeding issues. It's funny.. when I read others post I don't get that feeling of tiredness from other moms. I am starting to think.. is this just me or is everyone coping better than I am? Or is it just a phase that I am in? Or is it the first year that is the hardest? I wonder, what is the secret to managing everything? When I read others post's I am always amazed at peoples energy, and ability to go to the zoo, or shopping or to a friends house...we are so not there yet. I wonder if others just post about the positives or is it that they have adjusted and are just...positive.:)

I feel that I have so much too do and so little time to do it in. We go to 4 hospitals for Wysdom's care each focusing on different elements of his care. So it is not uncommon for us to have a week where we are at 2 or more hospitals. For example, today we met with our pediatrician at one hospital in town and tomorrow we are going out of town to another appointment at a different hospital. On Monday we go to see his yet another hospital.

I think one of the things lately that is contributing to all my exhaustion is dealing with all of the professional who all have a different spin on things and have their own ideas on what needs to be done. I must say that I have a new meaning and appreciation of the word "advocate". We spent the majority of this week and last week trying to advocate on Wysdom's behalf with our pediatrician to get a simple referral. This process included many phone calls to her office, sending information about the clinic that we would like to go to, calling back and forth several times. And guess what..still no referral. It is something that we are going to have to fight a little harder for and this all takes time! Then we have a feeding team that comes weekly to see how he is progressing. They want to know how much he eats? What he eats? However they are not so free with their suggestions on how to get him to eat or what techniques might be useful for him. So instead I research oral motor development on my own and talk to other mom's who have feeding issues in attempt to get some information.

I know I have heard that the first year is the hardest, but I am beginning to wonder if it settles down. Don't get me wrong. I love Wysdom with all of my heart but most of my time seems to be eaten up by appointments and feeding not to mention the complexities of his reflux. Some days I just would rather lay in bed and cuddle with him or watch him smile instead of all the hustle and bustle, but our schedule just doesn't allow for much of that. Other days I would just rather ...sleep!!

Friday, August 14, 2009

Yeah for physical therapy...

Wysdom showed off today...he pulled out all of his new tricks to show our physical therapist, Kathy. Kathy has been away on holidays for a couple of weeks and today Wysdom aimed to please. It was almost like he said "hey this is what I can do...where have you been?" I haven't even seen him do some of the stuff that he did. He had lots of fun and just kept going like the energizer bunny. Since the open heart surgery we have seen some new skills from Wysdom and a huge increase in energy and stamina. Before he could only tolerate a little bit of floor time before getting winded and then fussing and crying. Now he just seems to love it and have much more fun.

The PT was able to notice a huge difference and she was very pleased. Wysdom now comfortably lays on his tummy and props on his elbows for an extended amount of time. He also is starting to kick a lot and build up his stomach muscles. We had him in the Bumbo chair for a while and he really tolerated that longer than we thought. He still has quite a bit of work to do before he can sit...but we will get there. He has to strengthen his shoulder and back area....however we are moving in that direction. He even threw in a da... da... da... and some clapping. It was a great day following our not so hot day with the feeding team(previous post).

So now, my new goals are to help him strengthen his arms by getting him to do almost like a supported push-up, to continue to help him sit in the chair with support, help him develop more of his trunk muscles by sitting on a bouncing ball and to practice rolling over. Yes this can all be daunting if you include the feeding skills that we need to practice, mixed in with the numerous hospital visits and appointments....BUT we are doing remarkably well and I must say I am pretty proud that we are handling this all.. We just need a BIGGER agenda book!!

Tuesday, August 11, 2009

Feeding, g tubes and sippy cups!

I had my feeding team come today for a visit. They include a dietitian, an OT and SP. They have been working with Wysdom since he came home from the hospital after birth(about 2 months of age). They have been pretty conservative in regards to his feeding. Prior to his OHS in May my OT worked on fine motor skills. They didn't want to push him or try anything until after his surgery.

So fast forward to post op. They have been coming to visit us and trying to see what Wysdom will do orally. (To recap from an earlier post. he breastfed and bottle fed for the first month and for the remaining 7 months he spoon fed a little and has an ng since birth). So since OHS the plan was to try to get him to eat orally while he has his ng in. At their instruction I have focused on starting cereals and fruits/veggies. For the last month we have worked our way up to eating cereal twice daily with a little fruit or veggie added. There has been really not talk of introducing liquids orally though. So I just assumed once we got the solids started that we would turn to the liquids.

So here comes my frustration!! So today I mentioned to them again that I have an appointment this week with a GI doctor re: a g tube. I have had this appointment since prior to Wysdom's OHS. I asked them what they thought we should do. The sp said that "in 6 months time she doesn't see him taking in all of his liquids needed and that she is not confident that he could be tube free". So my frustration is that yes we have been focusing on cereal...but why are they not helping with liquids. Today I had to ask them to give me some ideas of next steps and a possible sippy cup to try. It seems like they have made up their minds before even giving it a try. Ugh. I was very upset today. They haven't watched him try to drink, haven't suggested ways to get him to drink. They have just been talking about how much cereal he is eating and what foods. Today I think if finally hit me that they really are not doing much to help us at all, besides writing down his volume of cereal and how often he eats.

Sooo....I am a little stressed out and frustrated and upset with the whole feeding thing. Really I am not upset at Wysdom of course...just the whole process of it all. To think I have waisted all of this time meeting with them weekly and they have made up their minds already before they have tried anything. As you can see I am very emotional about this. I have now decided to do as much work myself in trying to teach him to take liquids. I am going to do my own research on what steps to take and what works and doesn't. If in the end he needs a g tube, so be it. At least I will know that I have tried.

So if you have any experience around feeding or just have a story to share I would love to hear it. If your child has a g tube, I would love to hear how that is going and if you are happy with it because it may become a choice we have to make. As well I am looking for info on sippy cups that you may have chosen to use? I have heard mixed reviews about using sippy cups in relation to oral motor development.

In all of this, Wysdom tried squash today and I think he actually liked it....he only spit a little bit out=) Thanks for listening!!

Friday, August 7, 2009

An Appointment Free Week equals...FUN

Wow... this has been a strange week, we have had a full week with no appointments. Trust me I am NOT complaining. I don't think that we have ever had this since Wysdom's birth. Actually to be honest I don't think we have had this since we found out about Wysdom having Down Syndrome. While pregnant, I had numerous prenatal visits located about an hour away from home and made the trip almost weekly. Since his birth we have had ongoing weekly appointments with a Speech Therapist, Occupational Therapist, Physical Therapist and Early Intervention Worker. Plus we have been in the hospital for a total of almost 3 months. So this week has been a rarity. I really don't know how we ended up with a free week so to speak...but it is nice and I will take it anytime. Don't get me wrong, I appreciate all of our therapists and the work they do with Wysdom but I never quite realized what fewer appointments would allow us to do.

Just look at the list of fun things that we were able to do this week in place of therapy appointments and hospital visits. I know this probably doesn't seem like much but for us this is a big deal. We hung out at my parents house and watched Blyss swim in the pool with her cousins. Wysdom got to chill out on the deck and relax in the summer air and have fun with his cousins too. The adults had a fancy chocolate martini made by my sister(yum!!). Blyss got to go to the park and splash pad and took her first swimming lesson of the summer. I got a few hours to relax and go to Chapters for a break and I was also able to visit with my friends at the health food store where I used to work before maternity leave. Julian got to have a close friend come visit us and meet Wysdom and Blyss.

I realized that when we are busy with hospitals and appointments I don't really feel like socializing too much as we are just keeping up with things and are functioning at fast pace. I think as a family we have really missed this part of our lives..I mean I think we have missed socializing and doing fun things outside of the home. was nice. Next week or so we might try for a bigger outing to African Lion Safari or Niagara Falls. I will keep you posted.:)

Thursday, August 6, 2009

Siblings...and dealing with it all

This is Wysdom's big sister Blyss. Today Blyss and I had a good day together. We went to the park to visit some animals in a petting area, then off to a splash pad, followed by swimming lessons. It has been a really tough adjustment for her with Wysdom's arrival. Not so much that she didn't want a brother or anything like that. It is just that as a family we have gone through a lot. She has had to be put on the back burner at times, when Wysdom's medical issues take precedent. We have also had to limit visitors into our home to prevent Wysdom from getting sick. We have been home more often than we previously were. So it has been a difficult year for her in some respects. So today was really a spur of the moment "mommy and Blyss day"

Blyss really loves her brother and is very protective of him. He loves her too. You can just watch the intensity in his gaze as he watches her move around him. He looks like he just can't wait to grab hold of her and squeeze her. We are truly blessed to have Wysdom and also to have such a wonderful big sister. Through all of this medical stuff...we are sure that she is going to be a doctor. She checks his heart with the stethoscope, says "let's give him the domperidone"(his reflux meds) and constantly warns others about his ng tube. Julian and I have tried to shield her from most of the hospital stuff as much as possible....but she hears things and picks it up. She loves the Ronald McDonald House where we have stayed twice for each of Wysdom's hospital visits. What I do know is that she will love and protect Wysdom like no other! He is lucky to have her and she is lucky to have him. Ah the love of a Sibling!!

I would be curious to see how other siblings handle life with medical issues and mega appointments ? Are there any special things that you do for them?

Monday, August 3, 2009

From oatmeal

Yes. my ng baby is starting to eat!! Ya!! This is a huge accomplishment for us and Wysdom. Wysdom has had an ng for all of his life. The first month he breastfed and bottle fed with a top up from the ng. He really breastfed well with a good suck and everyone was really impressed but he just didn't have the energy to finish all of his feeds orally, due to his AVSD.

After the first month in the hospital in Hamilton we got transferred to a hospital closer to home.(we were in the hospital for 2 months after his birth) Wysdom was put in a PICU and this led to two changes that affected his feeding. The first is that the staff and the ped's doctor took on the idea of feeding him orally no matter what. If he was tired...he was bottle fed even if he was struggling. After about a two days of this and after constant complaining...I freaked out and put a stop to it. They were telling me I had to feed him even when he couldn't breath well and was choking. Trust me it was CRAZY and my husband and I were stressed out!! Wysdom developed what I think was an oral aversion to the bottle feeding. The second thing is that a few days later he caught RSV and had to be put on an iv for a week. Needles to say his routine was ruined and he didn't really know what to do. I tried hard at home...but he just stopped taking the bottle. He would bite on it. He would try to breastfeed but couldn't get the milk out. So we continued with the ng.

So for months my husband and I been ng feeding him. I still try the bottle and breastfeeding...but he doesn't get it. He also has reflux to so it has been hard but we have managed. We have actually become quite good with using the ng and pump. It just leaves you a little bit immobile though. As well we were up all night doing feedings every three hours and his feeds run a rate of an hour. I am also pumping milk, so it has taken it's toll but I am happy that he is still getting breast milk.

So after his heart surgery about two months ago, our therapist decided it was time to give feeding a stronger focus. I was given the okay to feed him cereal. Well it has been a month and a bit since we started and he has slowly been eating cereal. First we started with rice and now have moved onto oatmeal. I add in prunes, or banana. He started with half a tsp and now we are up to half a tablespoon. He seems to enjoy it and he keeps getting better at it. It is still hard don't get me wrong, he plays a lot with his food and pushes a lot out with his tongue....but he is still getting some and I am thrilled. I know that he needs time to learn how to eat.

We have the next month or so to decide if he will be able to continue to eat or if we should go the g-tube route. I am so praying for him to eat. I am not against the g tube or anything. It's just that after heart surgery and all the complications, I am not that eager to go back into a hospital and have him put to sleep. So my next step is to keep increasing his cereal and then look to see how he is going to take in all of his milk. My feeding team comes next we will see what happens and what they suggest. If anyone has any suggestions or things that worked for them I would love to hear you!!!

Saturday, August 1, 2009

Plastic Surgeon..and My Baby's Pressure Spot

Okay here it is. I might as well post about my little Wysdom's pressure spot. It is why I take mostly side profile pictures these days. I am going to share my story so that I can just post pictures of Wysdom with the scar on his head and not have to feel bad about it anymore. And so I don't have to cut his forehead of when I take pictures.

This pressure spot occurred while we were in the hospital for Wysdom's OHS in May. He had trouble coming of the breathing tube, so they used an alternative to cpap mask for his breathing. The mask was tight and heavy and ended up creating a pretty large pressure sore on his forehead. They covered it with some tegaderm and a day later it had developed into a whole the size of a quarter or larger on his head. We are currently being followed by the Plastic Surgeon at Sick Kid's Hospital where he had his initial OHS. Monday they took a look at it and thought that it was healing quite well. It has taken almost 2 months to close. Now that it has closed we are to wait a week or two and then start to massage the area with oil to help prevent it from raising. It will take 18 months to heal and we are not to allow any sun on the scar area.

I don't know if I will stop being angry with myself over this pressure spot. I regret not speaking up louder about this and getting them to figure something out. I did complain, but ultimately it was my husband who created an alternative way for Wysdom to wear the mask in the last couple of days, that I am sure prevented more damage. This pressure spot also happened during the time that he caught pneumonia and also the day that they moved him into a make shift room. While advocating for a different room and dealing with the pneumonia the pressure spot got ignored somewhat and I still feel bad about it.

I really don't see it when I look at him everyday. However I do notice it when I introduce Wysdom to someone, or when I look at pictures that I have taken. I find that I end up taking a lot of side profile pictures or cut part of his forehead off. If I take the picture head on I try to retouch the pictures afterwards, or just don't end up sharing them. Truly I am telling this story and sharing this picture so that I can start to post more pictures without having to worry about how people perceive his forehead. And so that I can start to forgive myself about this too. So here he is with his scar and all. Also I wanted to share this story so other's who go for heart surgery can avoid this same mistake if possible.