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! 

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!

One down!

Levi’s first surgery is over!  These last few days have been an emotional rollercoaster, but I’m happy to say that Levi is doing well.  Here’s a bit about Levi’s surgery and our time in the hospital.

We arrived at RUH at 6:30 am on February 13 and Levi was admitted into day surgery.  Despite being required to fast prior to his procedure, Levi was handling everything so well, and didn’t complain at all!  We met with the day surgery nurse, who got us ready, then we headed down to the OR where we met with the plastic surgeon, and the anesthesiologist.  After they explained the procedure, and we asked some questions, we gave Levi some good bye kisses and they whisked him away.  We were told the surgery would take approximately 2 hours (for both the lip repair and having his ear tubes placed, as well), he would be in recovery for about an hour, and then they would send him up to day surgery for another hour or so while the anesthesia wore off.     

We settled in the OR waiting room while Levi was in surgery, praying and hoping for the best during his two hour surgery.  Two and a half hours after being in the waiting room, we finally asked someone if Levi was doing ok.  Turns out he had been in the recovery room for 45 minutes already, without anyone coming to let us know that he was out of surgery.  That was a little annoying, but I chalked it up to a simple miscommunication and was just excited to see my son. 

The surgery went well, and the surgeon was very happy with the result.  He was still sleeping comfortably when he was sent out of recovery back to day surgery.  He was wearing off the anesthesia while Ryan and I sat beside his bed, waiting for him to wake up so we could feed our little man.  Before he was allowed to be discharged, we had to prove that he was able to eat.  So we waited.  And Levi kept sleeping. When the anesthesia finally started to wear off he was obviously in quite a bit of pain and had no interest in eating.  I felt so bad for him and I desperately wished I could do something to help him.       

Since we weren’t able to feed him for several hours, we were admitted to pediatrics, where we were hoping someone could tell us what could be done to help Levi.  After the nurses made some calls, it became apparent that there were no doctors that were willing to assess Levi.  Our plastic surgeon was gone for the day, and the plastic surgeon on call was no help.  The doctors on PEDs didn't want to see him either, because he was a plastic surgery patient.  It was very frustrating to see our son in pain, and not have a doctor to help us.  The nurses were wonderful though.  They believed that not only was he having trouble coming out of the anesthesia and was still very sleepy, that his throat was very sore from the breathing tube they used during the surgery and he was having trouble swallowing.  They administered an IV so he would be able to maintain his fluids, and gave him some morphine to help with the pain of his lip and his sore throat.  This helped quite a bit, and by the morning, his raspy breathing sounded much better and he was able to eat a little bit.  We were so glad to see that he was doing better. 

I’m honestly not sure which hospital stay was harder…  our stay in PEDs when he was an infant was much longer, but he was never in pain.  This time, we were only there for one night, but it was a very long night.  As a mother, it is very hard to see your child in pain and not be able to do anything.  My heart ached, and I cried right alongside him.  I definitely wasn’t prepared for this scenario, as we were told again and again that he would come out of the anesthesia relatively quickly, and we most likely wouldn’t need to stay for night.  This definitely wasn’t the case, and it was an eye opener for what might happen in his future surgeries.  I’m thankful for the nurses who were able to help Levi and that everything ended up turning out ok.

We have been at home for a few days now, and he is doing really good.  His lip is looking better and better as well, and we’re really happy with the result of the surgery.  He’s eating really well, and acting more and more like himself, too.  He still hates taking his medication, but I don’t blame him...  what kid likes taking medication?  He has to wear Velcro arm restraints that prevent his elbows from bending, so he doesn't pull out his stitches.  He gets frustrated sometimes when he can’t move his hands to his mouth, but they allow him full shoulder range of motion, so he is still able to play with his toys.  We feel bad laughing at him, but it's pretty funny watching him play with his toys when his arms are sticking straight out!  Despite us laughing, he is actually handling them pretty well!  We try to take them off as often as we can when we can closely supervise him, so he gets a bit of a break.  He gets pretty excited when he can bend his elbows!        

Levi with his Velcro arm restraints, playing with his toys

We are also very thankful for the prayer support that we’ve received.  It was a stressful few days, but it was a comfort knowing that we had many people supporting us, and ultimately that God was in charge. 

Our little man looked a little bit different for his four month picture this Saturday… but he is as adorable as ever and we love his new look!  Thanks for reading!

Happy 4 months, Levi!

The way life is

When I was researching cleft lip and palate before Levi was born, I read a few comments by mothers who have children with cleft.  A couple of them mentioned that they actually missed seeing their little one’s cleft lip after it was repaired.  When I read this, I thought to myself, “How could you miss something like that?  I’m excited for the day when our baby can have lip repair surgery!”  Now, it’s the day before Levi’s surgery, and I understand where these mothers were coming from.  When I look at Levi, I don’t see his cleft lip anymore.  All I see is a handsome little boy, with a wide, beautiful smile and my heart breaks a little bit knowing that after tomorrow morning, that smile will never look the same again.

It’s a hard thought to know that the little face I fell in love with 4 months ago will be completely different in less than 24 hours.  It’s not something I thought I would have to experience as a mother.  I also didn’t expect to be bringing my baby to the hospital for surgery at 4 months old.  Sometimes, that’s the way life is, though.  Sometimes, you’ve just got to sit back and trust that God’s got it all under control.  Because He does.  He’s good at that. 

Levi will go in for surgery at 8:00 am tomorrow morning, and the procedure will take approximately 2 hours.  We hope everything goes smoothly, and that his recovery is as quick as can be expected.

It’s comforting to know that there are lots of people praying for us as we prepare for Levi’s procedure tomorrow, and we thank you for your support.  Next time you see our little man, he’ll look a little different!!  (although still as adorable as ever J )

We have a date!

Levi's lip repair surgery has been booked for Thursday February 13. We are both excited and nervous for this date. We've been waiting to hear when this surgery would be booked for and we are excited that a date has been set, but also nervous for our little guy. He's so small and innocent and it breaks my heart that he has to go through a surgery already.  I hope that everything goes smoothly, and pray that the end result will turn out well.  We have lots of family and friends that are supporting us in prayer, and we know that God will be with us as we go through this procedure.

Last year, on February 13, 2013 Ryan and I were enjoying a Caribbean cruise with two close friends, and on that particular day, we enjoyed some time on the beaches in Haiti.  We spent the day snorkeling and swimming and we had a great time in that beautiful country!  On one hand, I would much rather be back there next Thursday instead of heading to the hospital for a 6:30 am check in!  However, on the other hand, last year at this time, I was only just a few weeks along into my pregnancy.  Levi was just starting to develop in my tummy...  Now our son is here to enjoy, and I wouldn't trade that for anything in the world!

I'm not sure if I'm more nervous for the procedure itself, or the recovery and healing period afterward.  Because he will have stitches in his lip, he will have to wear stiff velcro 'sleeves' to prevent him from touching them.  I'm not exactly sure of the details on this, but I'm sure we will have more information in the coming days.  Levi has started becoming more and more active with his hands, and I'm hoping that this gentle restraint won't discourage him too much.  Feeding him will also be a bit different, and I hope that we will soon be able to learn what works best.

We know that God is in control and that He will be with us during these next few weeks... it's just hard to remember that sometimes!  Prayers are definitely appreciated as we get closer to this date and during the days after the surgery as we help Levi through the healing process.   

Thanks for reading!

 

So Many Specialists!

I’ve mentioned in a previous post that we saw several specialists for Levi in the hospital, and we have seen several since our stay.  I thought I would go into a bit more detail about who has all been involved with the care of our son.

The specialist we saw the most during our stay in the hospital was the speech language pathologist that I talked about in my previous post.  She was so helpful, and awesome to work with.  She was upbeat and encouraging, and was essential to us learning how to properly feed Levi.  Since he cannot provide suction on his own, we were trained in using a special bottle called a Haberman feeder.  This is an amazing invention, and we were so glad that something like it exists for children with cleft palate! 

In case you’re having trouble picturing why Levi can’t provide suction, press your tongue to the roof of your mouth and make a sucking motion.  Now, imagine that the roof of your mouth has a space that is open all the way to your nasal cavity and any pressure that you are trying to form escapes through your nose.  It just doesn’t work, and that’s what Levi is dealing with right now.  It’s not painful for him, and he doesn’t know that anything is wrong; it’s just the way he is right now.  His cleft lip is actually quite minor and doesn’t affect his eating at all, but his cleft palate is what causes feeding to be a bit more of a challenge.

We also met with a geneticist at the hospital.  He asked about our family history, to investigate whether this was hereditary.  Both Ryan and I do have distant relatives that have cleft lip and/or palate, but none of them were closely enough related to affect Levi.  He also ran some blood work to determine if the cleft lip and palate were a part of a larger syndrome, but the tests all came back normal.  This was a definite praise item, as I had read that occasionally cleft lip and palate are found in combination with conditions like Down’s syndrome, etc.  Despite having these challenges to deal with, we are blessed that his cleft lip and palate are not as severe as they could be, and that he does not have other more serious conditions.

A few weeks after leaving the hospital we attended a Cleft Lip and Palate Clinic at RUH.  These clinics are held once a month at the hospital, and those who have been affected by cleft attend to be assessed by a multi-disciplinary team of specialists and to have their questions answered.  We were told to expect a fairly long day of appointments by a variety of different specialists.  Our first appointment in the morning was for Levi’s hearing test by an audiologist.  Often, cleft palate babies have fluid in their ears because of the space in the roof of their mouth.  Sure enough, Levi has fluid in his ears and will most likely be sent to have tubes put in.  They will hopefully be able to do this minor surgery at the same time as his cleft lip repair, so he can get both of these operations over at once.

After this first appointment, we sat in our assigned waiting room, where all of the specialists came to us.  It was nice not to have to pack up Levi every few minutes to move to different offices!  It was here that we spent the rest of the morning, being seen by a whole bunch of different people.  The cleft lip/palate coordinator came in to explain how the system works, and answered any questions we had.  Then we saw our feeding consultant again, who asked us how the bottle was working for Levi.  With her was a dietician, who ensured that Levi was gaining enough weight and eating the right amount.  Next was a pediatrician, who assessed Levi’s development at that time.  Following her came the plastic surgeon that will perform Levi’s lip and palate repair.  It was nice to finally meet her, as we had several questions for her.  Finally, Levi was seen by a pediatric dentist.  She explained that Levi probably will have problems with tooth development as he gets older, as his gums aren’t quite formed properly.  She mentioned that as his teeth come in, he will be sent to see an orthodontist.  Ryan and I both had braces, and we figured any of our kids would probably need them anyway… so this wasn’t a surprise to us! 

So many specialists in such a short amount of time!  It’s amazing to me that RUH has assembled such a wide array of people into a group specifically designed to help families dealing with cleft lip and palate. It’s been a bit overwhelming at times but we feel well taken care of, and know that whenever we have questions or concerns, there are people there to help us out.  Thanks for reading!  

It is Well...

This morning in church we sang the hymn “It is Well with my Soul”.  This has always been one of my favorite hymns, and the lyrics resonated with me today.  I wanted to share some of them with you: 

When peace like a river, attendeth my way

When sorrows like sea billows roll;

Whatever my lot, Thou hast taught me to say,

It is well, it is well, with my soul.

It is well, (it is well)

With my soul, (with my soul)

It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,

Let this blest assurance control,

That Christ has regarded my helpless estate,

And hath shed His own blood for my soul.

You may have heard the story about the author of this song.  Horatio Spafford wrote this hymn after going through the horrific experience of losing all four of his daughters in a shipwreck.  It was always amazing to me that someone who had gone through such a traumatic time could still bring himself to sing these words. 

I don’t claim to be going through an experience as devastating as what Horatio went through, but Ryan and I do have our own trials that we are in the midst of right now.  These lyrics remind me that whatever may affect our family and through the trials that will come, Christ knows what we are going through and He is right there walking with us.  This amazing assurance allows me to say, “it is well with my soul”. 

There are some days that are not very easy.  There are some days that I wonder why a person as small and innocent as Levi has to be seen by so many specialists and will have to undergo several different surgeries.  There are some days that I feel inadequate to deal with all of the things that are required of raising a baby with cleft lip and palate.  But each day I know that Christ sees my trials and gives me the strength to carry on.  He is faithful and I am thankful for His unending love and compassion toward me.

It is well with my soul.  

The Beginning of Our Journey: Part II

So, onto part two!  As I said in my last post, we were in the hospital for two weeks after Levi was born.  This post will explain more about our experiences there, and what it was like to spend time in both the NICU and pediatrics at RUH.

On October 15, 2013 at 2:52 pm, our son was born and Ryan and I were so excited to finally meet him!  When he was delivered, he wasn’t crying as he should, and our excitement turned to worry as we wondered what was wrong.  The doctors and nurses hovered over him as they tried to get him to cry, and we didn’t get a chance to really see him for several minutes while they worked on him.  It was very nerve-wracking to not know what was going on.  Eventually, a nurse came over with the information that it was a boy, born with cleft lip and palate and he was breathing, but not quite as efficiently as he should.  She mentioned that they were going to take him down to the NICU where they would assess him more thoroughly.  I was allowed to hold him for a few minutes, and then they whisked him down for his assessment. 

Ryan and I were worried, but glad that he had safely arrived and knew that he was in good hands as they tried to figure out what was wrong.  Eventually, we learned that Levi had been born with a collapsed lung, which was why he hadn’t been breathing quite right.  They were going to perform surgery on him to place a tube into his lung and were going to keep him in the NICU while they monitored his progress.  We waited for what seemed like ages until we were able to go visit him.  It was heartbreaking to see my son lying in an isolette, hooked up to all those IV’s and monitors, but I was happy that he was breathing on his own and the nurses said he was doing relatively well.  We weren’t allowed to hold him at that point, as he had just had the chest tube put in and it was so hard for us to watch this tiny little person lying there so helplessly, and not be able to cuddle and kiss him. 

Levi spent the first part of our hospital stay in the NICU, which was quite a difficult time, especially because it has quite a few rules to follow.  This was understandable, as it is a very sensitive environment, but also draining as a parent.  Only two visitors were allowed to see Levi at a time, and one always had to be a parent.  When a visitor came to see Levi, Ryan or I would take them into the room, teach them their proper hand washing protocol, then spend some time with our little man.  We also had to call in to the receptionist every time we wanted to see Levi, and there were certain times of the day when we weren’t allowed to visit him.  This was certainly not how I envisioned my first few days of having a baby.  My dreams of having a newborn included having a night or two on post-partum, a cute take-home outfit and a happy welcome home shortly after having our baby.  I did not anticipate the reality of what was happening…  the requirement to call a receptionist before I could see my son, having my little boy laying in an isolette with wires and tubes strapped to him, and not being allowed to hold him.  Ryan and I could not understand why this was happening, and asked God to give us strength to deal with this trying situation.  And God is faithful.  He gave us patience and strength as we dealt with nurses and doctors and also as we started to learn about Levi’s condition. 

Over those first couple of days, we met with several specialists, and it was fairly overwhelming to have just had a new baby and have all these people explaining what was going to happen with your child.  One of the people that we met with most frequently was a speech language pathologist, whose specialty was in feeding.  Because Levi has a cleft palate, he is not able to provide the suction necessary for breastfeeding, so she taught us how to feed him using a special bottle.  I was still very adamant that I wanted make sure Levi was getting breastmilk, though, so I began to express milk to use in his bottle.  This in itself has been a test of patience, as I not only have to feed him, but also spend time after his feeds to express my milk.  It’s been a long haul, but I’m glad he is getting the most nutrients that he can.  Also, one positive to having Levi using a bottle is that I’ve been able to share the joy of feeding him with not only Ryan, but also Levi’s grandparents and auntie! 

While he was in the NICU, he was being fed initially through an IV.  When they decided he was ready for milk, they used an NG tube, which ran into his nostril, and straight into his stomach.  Because he was fed passively for this time, it took us a while to learn how to feed him using the bottle.  At first, we would only be able to feed him a small amount by the bottle and the rest would be placed into his stomach via the NG tube.  Slowly, we learned how to feed him and he became much more efficient at eating.  Before we were allowed to leave the hospital, however, the doctor’s continued to monitor his weight gain.  They decided that he was healthy enough to leave the NICU, but not to be discharged, so we were sent to pediatrics. 

This was both a blessing and a disappointment.  It was a blessing, as now we would be able to actually stay with Levi in his room, but a disappointment, as we would have much rather taken our son home!  The rules in Peds were a lot less strict, but the day to day routine became draining.  Levi would wake up, I would call a nurse to bring some milk, they would take his vitals, I would change his diaper, feed him, then he would go back to sleep.  Repeat every few hours.  For days.  Each day ran into the next… a blur of beeping machines, a different nurse each shift, doctor’s rounds in the morning and waiting.  Always waiting.  Waiting to hear new information, waiting for nurses to bring milk and take Levi’s vitals, waiting for doctors to assess our son, and waiting to hear if we could be discharged.

Now, don’t get me wrong.  I fully appreciate the fact that we have amazing medical care in our country.  RUH was a blessing for us, and we thank the doctors and nurses who treated our son, however, Ryan and I became frustrated that we were being kept in the hospital even though there seemed to be no reason for it.  Now I don’t claim to be a medical professional, but I felt that Levi would have been perfectly fine to be discharged far sooner than we were allowed.  I felt that I could do just as good of a job feeding him at home as I could in the hospital.  That was not my call to make, though, and we understood that they had Levi’s best interest at heart.    

Finally, we were allowed to come home with a day pass on October 26 to see how he would do overnight.  Levi rocked it.  He ate like a champ and we were so proud of how well he did for his first night at home!  We came back to the hospital the next morning for one last assessment and after a few final hiccups, we finalized the paperwork for our discharge!  Hallelujah!  We brought Levi home on October 27, 2013 and we were so excited that we could finally be together as a family in our home!

Levi has been doing awesome since we’ve been home, and it’s been a joy to watch him develop and grow.  Even though being in the hospital was not something I had planned for, or wanted to experience, it definitely opened my eyes to those families who have children in the NICU or pediatrics for months at a time, or longer.  Two weeks felt like a lifetime, but it was nothing compared to the time spent in the hospital by many other families who have premature babies, or children who are sick.  We were blessed that Levi was a healthy baby, with only a few minor complications and thank God that we had the expertise of the medical professionals at RUH and are now able to raise him in the comfort of our own home.

I look forward to sharing with you more about what we’ve been up to since we’ve been at home!  Thanks for reading!    

Levi in his isolette in the NICU - 1 day old

Learning how to feed him - 2 days old

Our happy little man...  3 months old 

The Beginning of Our Journey: Part I

Hello!  Hope this post finds you well, and staying warm on this chilly day!
So I've decided to try out my hand at blogging...  it's a new thing for me, so bear with me as I figure it out!  It seems like a great way to update everyone about what's been going on in the life of our family.  We've had a lot of people interested in what's going on with Levi since he was born, so I thought I'd spend a bit of time every now and then and share some information with you.

Before I get ahead of myself though, maybe I should start at the beginning and explain a bit about what's been happening in the last few months!

In early March of last year, Ryan and I found out we were expecting our first child.  We were beyond thrilled, as we had been trying for a while.  We had come to the point where we were quite frustrated and questioning why we were being made to wait, but decided to trust God's timing.  Sure enough, God's timing was perfect as always!  My pregnancy couldn't have come at a better time, as we were just finalizing the sale of our house in the city and moving to a house in town that was more suited for raising a family.  Also, we learned that two of our best friends were also expecting and were due just weeks before us!  We were so excited to have friends to share this pregnancy and parenthood with!  It was definitely an answer to prayer and we began eagerly anticipating his or her arrival in October.  Telling our parents was definitely a highlight, as this would be the first grandchild on both sides of the family.  They were so excited for us, and I think they were looking forward to the arrival of this little one as much as we were!

We had several ultrasounds, and at each one it was amazing to see this little person growing inside me.  At our 20 week ultrasound, we could see individual fingers and toes and I was in awe of the miracle of this little life.  The tech showed us our baby's profile, and arms and legs and pointed out little hands and feet.  He gave us no indication that anything was wrong at our appointment and we left feeling blessed and ecstatic that everything was going smoothly.  Then, at my doctor's appointment after the 20 week ultrasound, my doctor told us that the ultrasound report stated that our baby would be born with a cleft lip.

And so began our unexpected journey.

After the initial shock of that statement, I had a million questions for her.  What exactly does that mean?  Is the palate affected?  How will this affect breastfeeding?  Why did this happen?
She tried to answer as many of my questions as she could, but also said there might be a chance that the diagnosis was incorrect.  She said, before we crossed any bridges, that we should go for another ultrasound when the baby was a bit bigger, so we could make sure that their diagnosis was correct.  So, we had to wait until week 30 for another ultrasound.  Those 10 weeks were pretty hard for me.  I struggled between feeling like the ultrasound tech must have made a mistake, and knowing that the diagnosis was probably correct.  I didn't know what or how to pray...  I asked God to heal our baby, I asked Him for the diagnosis to be wrong and for our baby to be fine, I asked for patience as we waited but also was angry that this had to happen at all.  I blamed myself for causing our baby to have a defect, even though no one knows for sure why cleft happens.  Over the weeks I was a mixture of emotions.  I was sad and angry that the joy of having a baby had been tainted by this news, but still hopeful that it was wrong, and happy that God had allowed us to be pregnant in the first place.  Ryan and I talked about it, and knew that whatever the outcome of the 30 week ultrasound was, we would be ok.  We had friends, family and God on our side, and we also had each other to lean on.  By the time our ultrasound came along, I had come to terms with whatever God had in store for us.  I had a feeling that the 20 week ultrasound was correct, and felt that I would be ok when we heard this confirmation with the 30 week report.

Sure enough, we had our 30 week ultrasound, and the tech was actually able to show us our baby's cleft lip.  This was formally confirmed with the following report at my doctor's appointment.  I was not angry or sad, and I felt prepared for this news.  I knew that God had this baby and us in his hand, and He would be with us as we raised this child.  So, with this confirmation, we came to terms that our baby would be born with a cleft, and continued to be excited for the day that we would meet our little one.  We asked for prayer from our family, friends and church and I know that their prayers and support helped us as we prepared for our little one's arrival.

Now, I am a person that likes to be prepared, so during the last few weeks of my pregnancy, I did as much research as I could about cleft lip.  At the time, we were told it would be unlikely that our baby would have a cleft palate too, but I researched that as well, just in case.  It turns out that Levi was born with both a cleft lip and palate after all, so I'm glad I felt prepared for that as well.  During my research, I learned that cleft lip / palate happens when the tissues of the baby's mouth aren't completely formed during the first few weeks of pregnancy.  There is no known reason as to why this occurs, but it is apparently one of the most common defects that babies are born with.  Cleft lip is more often on the left side of the mouth (which Levi's is) and is more commonly in males than females.  I found that interesting!  I learned that our baby would have to undergo plastic surgery to repair the lip at around 3-6 months of age, and again at around 1 year to repair the palate.  I learned that we would be meeting with several specialists after our baby's birth, to arrange surgery dates and to learn about how to care for a baby with cleft.  I discussed our baby's condition with several people at RUH, and asked many questions of nurses, and doctors.. anyone who would talk to me, really!  I wanted to be as prepared as possible for this little life that would be placed in our care.

Our son Levi was born on October 15, and we were beyond excited to welcome him into our lives!  He is such a little miracle and we fell in love with him immediately.  He was born with an incomplete cleft lip on the left (which means it does not extend all the way into the nostril), and a complete cleft of the hard and soft palate (which means there is a space in the roof of his mouth all the way back).  I was disappointed that he did end up having a cleft palate, as we were told he most likely wouldn't, but we were blessed to welcome our son into the world, and thanked God that he had a safe arrival.  I was glad I had researched as much as I had about cleft previous to his birth, but there was still so much information for us to learn.  We ended up spending two weeks in the hospital with him as we learned how to care for a newborn with cleft, but I will go into more detail about that in Part II!

Thanks for reading... hope you enjoyed learning a bit more about our little family!   I look forward to providing you with more updates about Levi and this unexpected journey that we are on.

Levi: 5 days old