Whew... what a weekend

Well, this weekend is definitely one to remember.  As some of you may know, both Ryan and Levi have dealt with quite a bit this weekend and I thought I’d give a little bit more explanation as to what has been happening. 

Late last week, Ryan had noticed some discomfort in his abdomen, which he attributed to indigestion or something similar.  By Thursday night it was continuing to get worse, and nothing he tried seemed to provide relief.  On Friday morning, we decided to visit our local walk in clinic, not only for Ryan, but also for Levi (more about that later).  The Dr. wasn’t sure what was happening either, and sent Ryan home with an antacid, mentioning that if it wasn’t indigestion he would most likely be back with increased symptoms.

Sure enough, by midmorning Ryan had such intense pain that he had to go back to the walk in clinic, where they called him an ambulance to St. Paul’s hospital.  After some blood work and an ultrasound, they determined that the pain he was having was caused by gallstones.  More specifically, there was one gallstone that had become lodged and was preventing bile from passing from the gallbladder.  There were also several more that could be seen on the ultrasound.  Apparently these can be hereditary, which makes sense in Ryan’s case, since it runs in his family.  His gallbladder will need to be removed but this surgery wasn’t able to be performed on Friday, since the surgeon was already gone for the weekend.  He has an appointment tomorrow morning to check a few more things, then hopefully there will be a surgery scheduled for tomorrow.  We’re thankful for a quick response time from the ambulance and for great care from the team at St. Paul’s hospital.  Ryan was seen promptly and diagnosed in a timely manner, and now we’re just praying that the rest of his surgeries and recovery will be just as prompt.    

Now, more on the smaller fellow in my life....

Levi has had a cough for over two weeks now, and we took him to the walk in clinic on Friday with concerns about it interrupting his sleep and the duration of his cough.  The Dr wasn’t able to do much, saying it was just a viral infection and sent us home with a prescription for an inhaler.  We tried using it as prescribed, with not much change.  This morning, we noticed his breathing had gotten more laboured, and we decided to take him to RUH emergency.  There, we were met with prompt service and were very impressed with the care from our nurses and doctor.  The doctor suspected croup, and prescribed two different kinds of inhalers, and an oral steroid.  Since then, it seems like Levi has responded quite well.  He still has a cough that can get pretty scary sometimes, but overall is doing a little better.  

It’s been quite the weekend, with not much rest and too much stress but we’re all getting through it.  We’re very thankful for our healthcare system, and for family and friends who have all contributed to helping these guys get the best care possible. 

We hope to get some more answers in regards to Ryan’s situation tomorrow, and are praying that Levi will continue to get better with the medication as prescribed.  We also hope that this will be the most hospital visits and overall craziness we have in our household for a long time!

It's about time for an update!

I realized the other day that I haven’t provided a new blog post in a long time!  A few people have been asking how Levi is doing, so I thought that now would be a good time to give you a little update. 

Levi is such a little trooper, and we’ve been so proud of how well he’s been doing.  It’s been almost a year since his surgery, and everyone has been very happy with how well it has healed, which has been encouraging to hear.  There is still a very small fistula (hole) in the roof of his mouth, but this opening has actually shrunk quite a bit from a few months ago.  Depending on how the fistula reacts to the development of the tissues on the roof of his mouth, the surgeon may or may not have to perform another small operation to close that up. We have a follow up appointment with his surgeon in June to see how everything is looking.  In the meantime, the fistula doesn’t seem to affect him too much.  It may still decrease his ability to suck efficiently, so we haven’t tried a straw with him, but I don’t think that it’s too serious that he’s missing out on that skill right now.

One of the biggest things that he is dealing with right now is a combination of hearing tests and speech development.  When Levi had his initial lip repair, they also did a small surgery to put tubes in his ears.  Often cleft palate kids have trouble with fluid in their ears, since there is an opening in the palate that shouldn’t be there.  These tubes fell out just last month, which was what we expected.  However, right around the time they fell out he also caught RSV (a respiratory virus) which then developed into a bacterial infection.  It was unfortunate timing, and along with a lot of coughing, there was also a lot of snot.  Yuck.  He was placed on antibiotics, and is perfectly fine now, but since his tubes were no longer in place and there was so much fluid, a lot of it wasn’t able to drain properly.  He had his hearing tested on Wednesday this week, and the audiologist determined that his ability to hear has decreased substantially.  He recommended that Levi go for another surgery to get a second set of tubes.  This will happen in around 6 weeks.  

On one hand, it’s a bit discouraging to know that Levi will have to go for yet another surgery in his short little life, and get put under again.  But on the other hand, it’s very encouraging to know that this is quite a simple surgery and will help not only his hearing but also his speech development.  At this point, because he has had fluid in his ears for quite some time, he hasn’t been able to properly hear sounds or words.  We have had several speech therapy appointments, and have gotten lots of tips on how to work with Levi.  We have noticed some progress over the past little while…  he’s been trying a few new sounds, and definitely understands concepts and instructions.  Despite this, he is still a bit behind where he should be in speech development, and we have a ways to go.  This surgery will help clear up his hearing and hopefully help catch him up in the speech department.  He also can’t hear himself properly, and often is quite loud.  This upcoming surgery will hopefully help with that, too!  

So that’s where we’re at right now!  Thanks to those of you who have been praying for him; we appreciate it.  And thanks for reading!  

Cleft lip / palate clinic

As I mentioned in my previous post, we took Levi to a cleft lip / palate clinic a couple weeks ago.  He saw a pediatrician, pediatric dentist, registered nurse, speech pathologist, audiologist and his plastic surgeon.  So many specialists!  After a long day of their assessments, they all agreed that he was doing very well!

He’s developing just as he should, with just a few things to watch in the months and years to come.  One thing that might be slow to develop is his speech, so we will continue to work with him on words and sounds.  Occasionally, cleft palate children have trouble forming words after a palate repair, because the muscles in the palate aren’t quite the same as yours or mine.  Also, cleft palate children often have a nasal sounding voice, which can usually be corrected with therapy.  He will continue to have speech therapy appointments, to see if his palate has affected the amount or the sound of his words.   

The other thing that we’ve noticed are his teeth aren’t coming in quite like they should on his upper gums.  We were told that this would most likely be the case, basically because the roof of his mouth and his gum line didn’t quite form properly.  He has several teeth already, but one of them has formed kind of behind his gum line, closer to the roof of his mouth.  I asked the dentist why this tooth had formed there, and she said that the bone tissue where his teeth are forming had just migrated a bit from where it should be.  We were wondering what they would do with a tooth that’s obviously not where it should be, but she said they would just leave it where it is for now, especially if it’s not bothering him.  She explained that the alveolar bone that holds the tooth in place would decay if there was no tooth there, so they want to preserve that bone until they can adjust it when he is older.  He will have a bone grafting surgery when he’s closer to 7 or 8, to rearrange and fix the bone of his upper gums before his adult teeth come in.  Then comes braces!  Fun!  

Other than those couple of things, Levi is doing really well.  His hearing is perfect (he still has tubes in his ears, which will most likely fall out sooner than later), the pediatrician was pleased with his growth and development, and the plastic surgeon is very happy with how the palate surgery turned out.  He still does have a small fistula (opening) in the roof of his mouth close to the front, but the placement and size is favourable for speech development and eating at this point.  She will plan to fix it when they do the bone grafting surgery a few years from now.  His lip repair is also looking pretty good lately, and we’re pleased with how that has healed.  It is so different than what it used to look like, especially after the second revision, and the surgeon said it will change over time as he grows.    

Ryan and I both had no doubts that Levi was doing well, but it was definitely nice to have it confirmed!  Our little guy still has lots of appointments and procedures down the road, but he’s doing awesome and handling everything so well.  We are so thankful for the specialists that have helped Levi get to this point, and for friends and family supporting and praying with us through it all!

Thanks for reading!

11 months old?!

Well, it’s been so long since I’ve posted… I figured it was time for a bit of an update!

I can’t believe that Levi is already 11 months old!  These eleven months have flown by, and I’ve thoroughly enjoyed spending time with my sweet little man while I’ve been on mat leave.  I’ll be heading back to work next month, and it’s bittersweet for me.  I’ll miss spending as much time with Levi as I’ve been able to, but it will be nice to get back and use my degree again.  I also really appreciate the day care that we’ve been able to set up.  His grandma and nana will each be able to take Levi for one day a week, and then we’ve found a great friend from church who is willing to take him for the rest of the week.  We are really comfortable with this arrangement, knowing that he will be with people we know and trust.  

Levi has been doing awesome and I think he’ll do well with the arrangement in fall too.  He is such an outgoing people person and I think he’ll enjoy spending time with others outside of our home on a daily basis.  His grandma and nana are excited to spend time with him, and our friend from church has two little girls, so it will be fun to see Levi make new friends with them.  

He has been eating really well too, and tries anything we give him.  He has yet to refuse a new food and I’m crossing my fingers that this will continue as he gets older!  He still has a slight opening (fistula) in his palate, where the repair didn’t quite close, but it doesn’t affect his eating too much.  Some softer foods still come out his nose, and he sometimes sneezes while he’s eating, but it doesn’t seem to bother him too much.  We are scheduled to go to RUH for a full cleft lip and palate clinic again tomorrow morning.  You may recall from a previous blog post that he was at one of these last November when he was still a newborn.  At the clinic, they will have all of his specialists come and assess him, answer any questions we might have, and let us know what the plan is for the future.  He will most likely have to go for a minor surgery to fix that small opening, so we will see what his surgeon says.  We’ll also speak with his speech pathologist, pediatric dentist, pediatrician, dietician, audiologist and probably a few others.  It will be a busy day, but I’m looking forward to hearing what they all have to say.  I’m also glad that it was booked before my mat leave came to an end!

Another thing that is coming to an end is my year of expressing milk for Levi.  When I started breast pumping when he was first born, I had a goal to try to pump for the full year but told myself to give it a try and see how it went first.  The first few months were tough and it was hard trying to fit in the sessions throughout my busy days with a newborn, but as the weeks went on, I got into a routine that worked.  I’m pleased to say that I’ve been able to express this whole time!  It definitely hasn’t been easy, and there were days when I wondered why I was doing it, but it was nice to know that even though Levi wasn’t physically able to breastfeed, he was still getting my milk.  I’ve started decreasing the number of sessions each day, so I will be able to stop completely when I head back to work in the middle of October.  I’m down to 2 sessions now, as opposed to the 6 or 7 that I started with when he was born!  This does mean that I have to supplement with a bit of formula, as fewer sessions equal less milk, but he’s still getting mostly breast milk throughout the day.  As I mentioned in a previous blog post, I also have come to the realization that it’s ok that Levi is getting some formula, too.  Stressing over how much milk I’m expressing each time is not going to help anyone!   

Since I’ve started decreasing the number of sessions, I’ve definitely noticed that it’s nice to be able to spend less time expressing each day!  I roughly figured it out, and by the time I’m done my last session in October, I’ll have spent approximately 53,280 minutes pumping this year.  That works out to 888 hours, or 37 (full 24-hour) days!  When I first became pregnant, I definitely didn’t envision spending a month of my mat leave tied to a pump kit.  I also didn't envision having to deal with the challenges of a child with cleft lip and palate, but sometimes you've got to take what comes and trust that God will bring you through.  And He has definitely helped our family get through this year!  As for pumping, it’s actually been not too bad.  I’ve been able to figure out how to do most things around the house while I pump, and it’s so portable; I’ve been able to take it anywhere I go… including camping, road trips and Las Vegas!  Like I’ve mentioned before, if anyone is in a similar situation to us and is considering expressing milk for their little one, I encourage you to go for it!  It’s definitely possible, especially if you have the support of your husband, family and friends.  I also highly recommend the Medela Freestyle pump with a hands free kit… this is, in my opinion, one of the best pumps on the market and it has worked so well for me.

So there you have it… a bit of an update on where we’re at right now!  I’ll try to post again after we’ve heard a bit from his specialists.

Thanks for reading!

Two Down!

Levi’s palate repair surgery was just over a week ago, and he is doing very well.  I thought I’d give a bit of an update on how the surgery went, and how things have been going here.

We took Levi in for surgery on the morning of Thursday, June 19.  He had been fasting since midnight of the night before, and despite it being more than 12 hours since he was able to eat, he was still his calm, content self.  He amazes me sometimes with what a mature, laid back attitude he has at only 8 months old!  He is such a joy and we’ve really enjoyed learning more about him and his personality over the past few months.  Because of this though, we found that it was lot more difficult to give Levi up to the doctors to take him in to surgery this time.  Since we knew more about Levi and his little personality, it was going to be that much harder to see him in pain.  

The surgery took 2 1/2 hours.  It was a long wait, but finally we got the call that he was in the recovery room and starting to wake up.  We visited him in the recovery room, then they brought us up to our room in Pediatrics after a while.  Levi struggled for a bit with coming out of the anaesthesia and was groggy for a few hours, but he ended up handling it much better than his previous surgery.  They kept him on IV fluids for the night, but to everyone’s surprise he was actually able to drink quite a bit of milk that same evening.  He was a hungry little boy and we were happy to feed him!  We had also been told by his surgeon, that he would be able to be fed with the same bottle we had always been using.  That was so nice to hear, as I wasn’t really sure how we were going to feed him!  He did so well those first few times, and we were very impressed.

The night in the hospital was a bit rough, and Ryan and I didn’t get very much sleep (sharing a cot between the two of us, and waking up every few hours to give Levi pain meds does not equal much rest!) but it was still WAY better than our first experience in the hospital after Levi’s lip surgery.  This time all the doctors and nurses were expecting us, and it was much more organized.  By the morning, Levi was doing quite well and we were discharged by around noon.  After all was said and done, we actually ended up spending less time in the hospital than we did the first time!  We found this funny, since we had been told the first surgery wouldn’t require an overnight stay.  We felt this hospital stay to be much easier to deal with since we felt more prepared, and knew what to expect.  It was, and always will be, difficult to bring a child into the hospital for surgery, but since that is the reality for our family, it’s nice to feel prepared!  

Friday evening, the day we were discharged, was a bit of a challenge.  We had a bit of trouble keeping up with his pain medication, and all of a sudden he had no interest in eating at all.  Despite being on the maximum dosage of pain meds that he was prescribed, he would cry out in pain as soon as we tried offering him the bottle.  What we think happened, is that in the hospital the roof of his mouth was still frozen from surgery and he couldn’t feel any pain while he was eating.  Then, when we got home, it wore off and he noticed how sore it was.  It was a struggle for him to eat and sleep for a couple days and nights, but by the end of the weekend, we seemed to have everything under control.  

He has to wear the same arm bands that he did last time, to prevent him from putting his fingers in his mouth and pulling out the stitches.  He’s a bit more frustrated with them, since he’s learned a lot more about grabbing and holding things.  He’s also just trying to figure out how to crawl, and the arm bands do not help that situation, so he’s a bit annoyed by that.  All in all, though, he’s doing really well considering the circumstances.  We are still excited for this coming Thursday, which is two weeks from his surgery and the day he can stop using those silly restraints! 

We had a follow up appointment with his surgeon yesterday, and she said everything is looking good at this point.  She will see us again in a couple weeks, just to make sure everything is continuing to heal properly.  She did mention that there are a couple weak spots in every cleft palate repair that sometimes don’t heal quite as well and may cause a small opening, called a fistula.  She said that if that happens, it won’t be as big of a deal to fix as the original surgery.  He won’t have to wear the arm restraints and it won’t affect his eating.  That was good to hear, but we are still praying that his repair will continue to heal properly and there won’t be any fistulas that form.  

We hope that this will be his last surgery for a few years, until he has to have a bone graft to repair the little notch in his gumline.  That will be when he is 8 or 9 years old, so that’s a little way down the road.  If something happens in the meantime, and we have to make a trip to the hospital again, we’ll just take it as it comes.  We’ve been there, done that!  

We want to thank those of you who offered prayers and words of support during this time, and those who brought by meals, too.  We really appreciate it and it meant a lot to us to know we have a whole bunch of people who are thinking about us and our little guy.  

Thanks for reading!

Mixed emotions

Levi’s palate repair surgery is tomorrow, and I can’t quite decide how I feel about it.  

I’m excited to get it over with and have this surgery behind us.  I’m scared that it will be worse than the last surgery we went through.  I’m nervous that something will go wrong and the palate won’t heal properly, or that Levi will have a lot of trouble learning how to eat during the healing process.  I’m also hopeful that everything will go smoothly and that all of my concerns will be unfounded.

I’m just one big bundle of mixed emotions today!  As a parent, it's hard to let my little one have this procedure done, knowing that he will be in pain and uncomfortable for a while afterward.  However, on the other hand, I know that this is in his best interest and will help his eating and speech development in the long run.

Man... parenting is tough sometimes. 

Going into this procedure, I do feel that Ryan and I are a bit more prepared to handle what might come our way.  In February, for Levi’s lip repair, we had no idea what was to come and that made it a bit more challenging to deal with some of the bumps along the road.  For example, we were told that it would be a day surgery and we would be able to take Levi home for night.  However, this didn’t end up being the case and we had to scramble to get our things to the hospital to stay the night.  Also, because he originally wasn’t supposed to be admitted for night, there were no doctors available to properly assess him or prescribe him the proper pain medication.  

This time we’ve been told ahead of time that he will be kept overnight, since the surgery is a bit more difficult.  This is nice to know, so we can bring everything we need for an overnight stay.  There should also be a better system in place for Levi’s post-op care, as everyone knows that he will be admitted.  Having gone through one surgery already, I now feel as though I have a little bit more knowledge as to what might happen and the questions to ask.  

A big prayer request that we have is that Levi will be able to come out of the anesthesia comfortably and that his throat won’t be as sore from the breathing tube.  That was one of the big issues we had with his last surgery.  He couldn’t sleep comfortably because his throat was so sore, his breathing was laboured and he kept coughing.  I hope that this won’t be the case this time.  

The other prayer request is that he would be able to learn how to eat during the period of healing time.  I’m actually not certain on how we are going to feed him, as we aren’t able to use a spoon or his bottle.  We can’t use anything that would touch the roof of his mouth.  I’m sure we will be instructed on the proper procedure, and I anticipate that we will see his feeding specialist after his surgery.  From the research I’ve done, it sounds like they will have him on IV for a while after the surgery to keep him hydrated and to give his mouth a break after the trauma of the procedure.

I’m not sure how surgery will go, but we do know that God’s got it all under control and He’ll be right there for every step.  We’re also thankful for your thoughts and prayers… your support is very much appreciated!  

Thanks for reading!

Surgery #2

I got a letter in the mail the other day, stating that Levi has been booked for his palate surgery!  I was excited that we got some information, and expected the date to be in the fall sometime.  I read further into the letter, and saw that it is booked for June 19th!  That is so soon!  I was pretty surprised to see this, as we had always been told that this wouldn’t be repaired until he was 9-12 months old and on June 19, Levi will be just 8 months old.  As I thought about it more, however, I became excited that the surgery is so soon.  For one thing, we will get this over with and we won’t have to think about it all summer.  Next, I had been wondering lately how we would introduce Levi to different textures of food.  Since starting him on solids at 6 months, we’d been told to keep everything very smooth and pureed so no pieces would get lodged in his cleft.  Since his palate is now scheduled for repair already next month, we will be able to start that much sooner!  Another reason is that since there is a space up through his nostril, when Levi is eating there is usually some food that comes out his nose!  He usually just sneezes and keeps on going, but I can't imagine that it is very comfortable!  I'm sure he will appreciate having that fixed!  And the last, and I think most important reason, is that it hopefully will improve his speech development.  He will still have to see a speech pathologist for assessment, and it sounds like he still might have difficulty with proper speech, but I hope that the effects will be minimized after this surgery.   

Many people have asked me what will happen with this surgery.  Honestly, I’m not 100% certain, since I haven’t been able to get details straight from his surgeon, but I’ve done some research myself and this is what I’ve been able to find.

Levi was born with a cleft of both the hard and soft palate.  This means that there is a space all the way from the front of his mouth to the back, much like the following picture.  These diagrams are what I believe will happen with the surgery, however, like I mentioned, his procedure may end up being slightly different if his surgeon uses a different technique. (This information was taken from  WFU Plastic Surgery )    

When the roof of the mouth doesn't grow together properly, the condition is called a cleft palate. To repair it, the surgeon will make an incision along both sides of the cleft.

Tissue is drawn together from both sides of the cleft to rebuild the roof of the mouth.  (The areas that the tissue was drawn from will then regenerate itself)

From what I have learned, it sounds like the palate that is formed will be functional, but not as firm as yours or mine.  He may have some trouble learning to eat after the procedure, but with guidance from his specialists, we should get the hang of it.  Also, since he doesn’t have the proper musculature in the soft palate, he may still have trouble with speech development and forming certain sounds.  He will be seen by a speech therapist, who will assess his speech development after the surgery and determine how his new palate is functioning.  

Occasionally, there are multiple surgeries required to completely fix the palate, however we are praying that this is not the case for Levi!  We hope that this surgery will provide him with a functional palate and that there won’t be any complications or need for any corrections. 

Thanks for reading!