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Speech, To Take a Break or Not?

Speech, To Take a Break or Not?

Our son was born with a bilateral cleft lip and palate (BCLP) and has been in speech therapy since he
was 18 months of age.  I value private speech therapy and we are faithful in keeping our weekly appointments, incorporating speech techniques at home to gain consistency and working on a great deal of repetition.

speech therapy

It’s just that at this point we have now added orthodontic appointments to our ‘have to’ weekly list and he has a palatal expander and permanent bar on the bottom.  We’ve been told that his cleft will temporarily widen due to the palatal expander and that his speech intelligibility is going to degrade because of the widening cleft and cumbersome contraption in the roof of his mouth.  All of which we are currently witnessing.

This kid has weekly speech and reading therapy already and now we have added orthodontic appointments!  His therapist believes that there is value in continuing speech therapy and that other things can be worked on while suffering through the changes taking place due to Phase 1 of his orthodontic treatment.

My husband and I have been seriously discussing our options and are leaning towards giving speech therapy a break.  His speech is not going to improve while undergoing orthodontic treatment in preparation for his bone graft surgery, so why not give him a break?  It’s not forever and they are estimating that he is going to need the bone graft in 6-9 months.  Speech therapy can resume after healing from the bone graft.

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Has anyone else gone through this and found value in continuing speech therapy while undergoing orthodontic treatment?  Did you take a break and regret it?  Or was it a much needed break for your cleft kiddo that allowed them to just deal with the ortho stuff?  We have a lot to consider and once we make a final decision I will post an update.  Any input or feedback, even from a therapist’s point of view, is welcome!

 

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Feeding a cleft palate baby

Feeding a cleft palate baby

Having a child born with a bilateral cleft lip and palate is difficult, especially when considering the extra work that goes into feeding.  Your baby will initially be in in the NICU (Neonatal Intensive Care Unit) of your hospital right after being born.  A feeding tube will be inserted through one nostril and will go down the back of your baby’s throat and into his stomach.  The nurses will attach a syringe and push formula or breast milk through that tube and into your little one due to his/her inability to suck, which is in direct correlation to their cleft palate.

After the first day in the NICU an occupational therapist (O.T.) visited us and worked with my husband and I to learn how to feed our baby with a cleft palate nurser.  Ours ended up being a squeeze bottle with a regular nipple that we were instructed to cut in the form of an “X”. This crosscut in the nipple would make it easier for our baby to get the milk out of. Each day the O.T. came and worked with us to get into a rhythm with our baby and to be able to pay attention to our baby’s breathing while feeding him.

This process was difficult for me. I had breastfed my daughter and really wanted to be able to have that same bonding with our son. I knew this wasn’t possible because of the cleft palate but I was upset about it anyway. It felt as if there was just yet another thing I was having to miss out on with my baby that was out of my control and I longed to hold him and just be able to feed him like a normal mother should.  I would cry when seeing the feeding tube and my emotional ups and downs seemed to have a mind of their own at this point.

My husband actually got the whole feeding rhythm with our son down early on and took the lead on that. I concentrated on pumping and upping my milk supply so that we could feed him breast milk versus formula.  It was hard for my milk supply to stay up because I wasn’t having direct contact with my baby for feedings so I drank Mother’s Milk Tea to help and made sure I drank plenty of water.  I also pumped every time my son needed to feed while my husband was the one to actually feed him.

The O.T. informed us that until our baby could get 3 oz. of  breast milk through feeding him with the cleft palate nurser on his own (showing her that his oral muscles were getting stronger and that his need for the feeding tube was no longer) that only then could we be released from the NICU.  It took 7 days.  It seems our little one was determined to eat and get home as soon as possible.

While feeding a cleft palate baby is different and requires you to hold your baby upright and to really pay attention to their rhythm, it still allows for you and your husband to be able to bond.  Your baby needs to eat and being able to do that no matter how alternative the method might be, is still something only you, as parents can do.

And while you might be trying to figure out if you should pump or just formula feed I can only tell you that the decision is yours to make.

Our reasons for continuing to pump and get breast milk into our little one is that I truly do believe it is better for baby.  I also did a great deal of research and read that cleft babies that are given breast milk tend to have less frequent ear infections and recovery time after surgeries is less.  For these reasons we opted to rent a dual breast pump that our insurance did cover for as long as we needed.  Yes, feedings were difficult, especially when my husband went back to work because I would be feeding baby and as soon as he was done and down for his nap I was pumping for the next feeding.  There was not a lot of time for sleep but I do believe that the breast milk was just better for him.  I had also read that you could give your baby breast milk almost right up until surgery whereas a formula fed baby has to stop feeding at midnight.  You can imagine how hungry baby would be before surgery and definitely after!

So I strongly suggest that you research and read as much as you can about breastfeeding and decide whether or not it is for you and your family.  I did feed him all night up until a few hours before surgery per our surgeon’s instructions (be sure to speak with your surgeon about this to confirm) and he slept as they took him in for surgery.  Once he woke up after surgery he was not at all cranky or hungry so for us we felt like being able to feed him and make him as comfortable as possible throughout the process was huge for us.  I would also rub a little breast milk onto his incision to keep it moist and help it to heal.

Feeding initially will be a daunting task, but as you and your  little one get into a rhythm it will become natural and your family’s new normal.

 

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How We Found Out

How We Found Out

Our pregnancy was a surprise.  Leading up to this moment I had gone through a divorce and left that tragedy with a beautiful daughter who joined me in our journey forward. Along our journey we fell in love and he fell in love with us. We took it slow and really made sure that our relationship was going to be one that lasted.  We married and both of us had talked about trying to have a child together.  I had been battling for years with health issues and  hypothyroidism after being diagnosed with Graves Disease and had been told that getting pregnant was not a realistic option for us.  So we continued to work on my health and believed that getting pregnant was just not something we would experience.  We were okay with that.  I had my daughter and felt blessed to have been able to experience a pregnancy and my husband seemed to feel the same.  I started to feel lethargic and thought that my thyroid medication must be off again so I made an appointment and went for blood work.  While waiting for my appointment date I woke up one morning after a strange dream and realized I had missed my period.  I took a pregnancy test and POSITIVE!  We didn’t believe it at first thinking it might be a false positive or something, but sure enough we were going to have a beautiful baby!

We went through the initial doctor visits and scheduled our first ultrasound at 17 weeks hoping to find out the sex of our baby.  I made the appointment after my daughter got out of school so that she could be with us when we found out. All of us were excited and we went to the ultrasound with great expectations.   Initially, everything was going as planned and then I saw the nurse’s face change, her back arched and she kept squinting at the screen and moving  the device around.  She then stated that she was getting the doctor and would be back in a moment.  I knew something was wrong.  We all did.  I felt like my entire body was on high alert and I could hear my own heartbeat.  The next moments are dreamlike and feel as if the moment happened to someone else.  The doctor did come in and he continued to look at the screen and not say a word.  I could not bring myself to ask what was wrong even though I knew something was not right.  The doctor turned the machine off and turned to all of us and said, “well, good news first is that you are having a boy…but it appears that he is going to be born with a bilateral cleft lip and possible palate.”

No one  moved, no one breathed, not one word was said for what felt like an eternity. None of us knew what he had just said or what that even meant.  He began explaining but I could not really focus and still just was not able to comprehend a great deal of what he was saying.  I do however, remember the doctor telling us that we  were not too late in being able to schedule termination before we got too attached to this pregnancy and that after a few months we could try again to get pregnant and that pregnancy would most likely be without defects.

I was horrified!  After believing we could not get pregnant and then having this baby growing inside of me and hearing his heartbeat, his heartbeat, how could someone suggest such a thing?  I was so caught up in what was wrong I hadn’t even been able to process that we were having a baby boy.  Was this doctor crazy?  Too attached to this pregnancy?  I was attached the moment I got POSITIVE and the first time I heard this baby’s heartbeat…I was smitten with the child I was carrying.  I wanted this child and hearing the word defect both hurt and angered me.  I asked the doctor to leave because we needed some time alone.  He left.  Thank goodness for his sake… and my own.

So there we were.  In this dimly lit room lost in our own thoughts and turmoil. We grabbed each other and cried.  All of us.  My husband, my daughter, and me.  I wanted to leave so we tried to compose ourselves and walk out of there. It was not the appointment I had hoped for.  There were no congratulations and the staff seemed to be avoiding eye contact and smiling at us with pity.  I just wanted out.

There was silence on the way home.  Our phones were ringing and going to voicemail with questions from family and friends wanting to know the sex and how the appointment went.  We just could not talk to anyone.   Going home was hard because all of us began looking up what a bilateral cleft lip and palate were.  Once we finally realized what it was it just made it that much harder to figure everything out.  There was so much information about feeding issues, swallowing issues, speech and language issues,  surgeries, ear problems, etc.   It was overwhelming and daunting.  Caring for a child that was going to have to come into this world fighting the moment he was born scared me.  I wondered if I could even take care of this baby and how I was going to take care of a baby that was going to need so much more than just a baby being born without all of these challenges.  Then I worried that my husband didn’t want this baby and might be considering the doctor’s advice on termination and I was even more fretful.

I called my husband and daughter out to the living room so we could all talk. I started crying and I told them that I know this baby is going to have its challenges but that terminating was not an option for me.  I would be having this baby and I would be figuring it out.  I wasn’t sure what the reaction would be and was scared it might not be what I wanted but my husband began crying and he told me that he was so happy to hear me say that because he already loved this baby and even though he knew it was my body and ultimately my decision he really was scared I wasn’t going to want to have this baby.  My daughter (10 at that time) appeared confused.  She said she really didn’t understand what all the challenges were that this baby was going to have but she didn’t really care.  She told both us that she believed this baby asked God to be put with our family because he knew that we would love him no matter what and that we would make sure this baby had the best doctors and the best care. Why would this baby want to be with another family except ours?

I stopped crying and really looked at my daughter; wise beyond her young years. Her words really did make all the difference in how we started looking at this journey we were about to embark on.

Our son has changed all of our lives for the better and I would not laugh as hard as I do today because of his antics.  Our daughter was right – he was meant to be with our family and to teach us what being strong and full of life looks like.

 

What is a cleft lip and/or palate

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