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