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! 

Time Flies

Levi is 6 months old today.  

What?  

That’s crazy!  I can’t believe how fast these 6 months have gone.  There’s a saying that I came across when I first became a mom… “Days drag on, years fly by”.  I hadn’t fully understood this until these last few months.  I realize now that it is so true and I think all mothers would agree with me on this.  

Don’t get me wrong.  Not all days drag on.  Some are over just as soon as they start, but there are days that seem like they will never end!  It never fails, though, that each time I’m taking Levi’s month by month picture, I’m thinking “Where did the month go?  Why is the time flying by so quickly?”.  It seems like next time I blink, he’ll be running around exploring the world around him, then graduating high school, then fitting his tux for his wedding.  Oh dear.      

It’s a bit of a blur to look back on these 6 months, but there are a few things that stand out for me.  Holding him for the first time after giving birth is a highlight, as well as the first time we were allowed to hold him while he was in the NICU.  Seeing him smile for the first time, and hearing him laugh are also forever in my memories.  Watching him learn to roll over at 3.5 months made me one very proud mama, and hearing him babbling away is enough to put a smile on my face every day.  He is starting to sit on his own, and I’m sure before we know it he’ll be on the move and getting into everything!

He has blue eyes, long eyelashes and dimples like his daddy and so far, he has blond hair like his mommy (although this might darken, as Ryan’s did!).  He does not like to miss anything and enjoys being around company.  He loooves to eat, and clearly recognizes that his bottle means food!  He enjoys playing with toys, and has already chosen a few favourites such as Sophie the giraffe, a few stuffed animals and a little blue and orange ball that he got from his Uncle Jace.  

He is such a happy, content baby.  He has been sleeping through the night for several months now and it is easier and easier to put him down for his naps during the day.  He loves to smile and it doesn’t take much for him to light up with a delighted grin.  He is also very ticklish and will laugh and squirm if someone is tickling him.  He enjoys chewing on his toes, rolling over to get a different view and charming the socks off anyone who he lays eyes on.  I enjoy every minute that I get to spend with him, even if those minutes include cleaning up poopy diapers or holding him while he cries.    

He has been through a lot in his short little life, but he is a trooper and has handled all the curveballs like a champ.  He has several more procedures and surgeries to come, but I know he will handle them just fine.  

Ryan and I are enjoying parenthood and are having a blast raising this sweet little guy.  He is such a blessing in our lives and we thank God every day for giving us this precious gift. 

Thanks for reading! 

Some thoughts

I thought I'd share some of my thoughts on breast milk, formula and expressing milk, as these things are usually at the forefront of my mind each day.  Let me know if you have any questions!   

Ever since I learned about the benefits of breast milk, I’ve always wanted to breastfeed my children.  I took several nutrition classes in University, and there I learned the nutrients it contained and how it helps provide the baby with the best start possible.  When I found out that our baby would be born with a cleft lip, I did a ton of research to see if breastfeeding would still be a possibility.  As far as I could tell, just a cleft lip wouldn’t affect the process, and I was relieved that I would still be able to breastfeed.  However, Levi was born with both a cleft lip and palate, which changes the situation entirely.  As I mentioned in a previous post, due to his cleft palate, Levi is unable to generate the suction needed to breast feed.  Initially, when I found this out, I was devastated.  I thought that I was going to be missing out on providing him with colostrum and all the living properties of my milk.  

This didn’t turn out the be the case!  We sat down with our feeding consultant (a speech language pathologist) shortly after Levi was born, and she explained that giving Levi breast milk was still an option.  She explained that expressing breast milk was something I could look into if I wanted, and went into the logistics of what I would have to do.  First of all, I would have to start pumping regularly right away to signal my body to start making milk.  I did this, and at first I was so frustrated that I wasn’t getting anything.  Literally nothing.  I remembered a nurse telling me that this would happen, but I didn’t believe her and assumed I would at least get something!  I was discouraged at first, but kept trying.  It took a little while, but eventually I started to get a few drops of colostrum.  I was so excited!  Levi was still in the NICU at this point, and the first time I brought my milk down to him, it was a measly 4 or 5 drops.  I was excited that I had something, but afraid they would laugh at me for bringing such a small amount.  Was I ever wrong!  The nurses congratulated me, and treated this tiny amount like gold.  That was very encouraging, and I continued trying harder to increase my supply.  Two days after Levi was born, I was producing more and more milk, and I was getting more comfortable with the process of pumping.  

I have discovered that exclusively pumping is an art.  It requires patience on the part of both parents, as well as dedication and commitment.  Levi is now almost 6 months old, and I have been able to give him breast milk continually since our time in the hospital.  I am happy that I’ve been able to do this, but it has definitely been an adventure!  I have pumped everywhere from my car to a bathroom stall.  At first, when I wasn’t as comfortable with pumping, I had to feed Levi, then pump afterward.  Each feed took twice as much time, and it was like I had twins!  Since then, I have discovered a way to pump while feeding Levi, so I can do both at once.  This has saved me so much time, and I have been so thankful for the hands free kit that came with my pump!  

I have also discovered that the amount of milk that I produce can vary incredibly depending on several factors.  Being stressed out, not drinking enough water, not eating a healthy diet, or not pumping often enough are all things that seem to decrease my supply.  During my research, I have learned that a pump is not nearly as effective as a baby at getting milk out of the breast, so these factors affect the milk supply even more so than a breastfeeding mother.  Also, if Levi has a growth spurt, it’s sometimes a bit more challenging to keep up with him!

A few weeks ago, I found it incredibly hard to keep up with him.  He seemed to be eating more than normal, and I seemed to be producing less than normal!  As you can probably guess, this math does not add up.  Usually, I had just barely enough for each of his feeds and I often had to take some out of the freezer.  This was quite stressful.  It also posed a problem, as Ryan and I are going on a short anniversary trip in May and I would like to have enough in the freezer for him to have while we are away.  Our solution to this problem is to add a little bit of formula to a few of his bottles throughout the day.  At first, I was disappointed that I had to give him formula, however I came to the realization that it’s ok!  I had become so stressed out over the fact that I was struggling to keep up with Levi, and that there wasn’t any extra in the freezer.  As I mentioned in the previous paragraph, being stressed out does not help milk production!  This system has allowed me to be much more relaxed about feeding Levi, and I know that he is still getting the majority of his nutrients from breast milk.  Also, since starting this system, I've been able to produce more milk than I was before.  I believe it is a combination of becoming less stressed, as well as consciously thinking about how often I am pumping and my diet throughout the day.  I try to pump every three hours (except at night), I try to eat a healthy diet and drink more water throughout the day.  I also found a recipe for "lactation cookies"!  They are made with a couple ingredients that supposedly help increase milk production.  I'm not sure how effective they are, but I'd happily eat a couple cookies each day if there's a slight chance it could help with my supply!  I am happy that I am able to continue to provide breast milk for him and that he is getting the benefits of this.  I realize that many mothers are unable to breast feed or choose to provide their children only with formula and that is ok, too. 

Having to express breast milk is definitely not what I had pictured when I visualized feeding my baby, but I’m glad that I’ve been able to continue to do this for him.  I’m also very thankful for my double electric pump and hands free kit… I can’t imagine doing this with anything less!  If anyone out there is considering expressing milk, I just want to encourage you and tell you that it is possible!  It’s a lot of work, but it’s also very rewarding.  Good luck!

Thanks for reading!

Hooray for elbows!

So we had Levi's two week follow up with his plastic surgeon today, and it went really well.  She said she was happy with how everything is looking, and gave us the go ahead to stop using the arm restraints!  Yay!  Levi can bend his elbows again!  He is very excited about this, and is enjoying playing with his hands and chewing on his fingers.  He missed the freedom of having full use of his arms, and seems thrilled that he doesn't have to wear them anymore.  Ryan and I are pretty excited too, as it was getting tiring to always watch out for his arm bands; adjusting them when they slid down, taking them off one at a time to dress him and always making sure that he wasn't putting his hands near his mouth.  Everything took a lot longer!

The surgeon noticed that there is still a little notch in his lip, but mentioned that can easily be fixed when they do his palate surgery.  We had noticed that his lip isn't quite perfectly lined up, but I think it looks ok, and it's definitely a lot less noticeable than before the surgery.  She did mention that things may change as he grows and develops as well, so they'll see what it looks like when it comes time to repair his palate.

The other thing she mentioned is that they will most likely plan to repair his palate when he is around 9 months old.  This was a bit of a surprise to me, as I was always told it would be around a year old.  It would be nice to have it done this early, for the closer he gets to a year old, the more chance that the cleft palate will affect his speech development.  I guess we'll see when it actually gets booked!

Levi has a follow up with his ear specialist next week, to see how his ear tubes are doing.  He had them placed at the same time as his lip repair was done and so far he seems to be doing very well with them.  It's been neat to see him respond differently to sounds now that he has those in.  Before the surgery, he had quite a bit of fluid in his ears (which is common with cleft palate children) and it was obvious that he wasn't hearing as clearly as he could.  You know how things sound when you're under water?  That's how Levi was hearing prior to his surgery.  Now he responds much quicker to voices and sounds.

It's been amazing watching Levi develop and change over the past 4.5 months.  His smiles and laughs are wonderful and it's been fun to see him start to roll over.  It's also been great to see his personality develop.  He is such a content, happy little man and has continued to display these characteristics despite the challenges that he is facing.  It's been a joy to watch him grow, and Ryan and I are looking forward to walking through the next years with him; through his next surgeries and each new milestone.  It's definitely exciting and I hope Ryan and I are up for the challenge!  We, again, thank you for your thoughts and prayers as we continue on this journey called parenthood.  

Thanks for reading!