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