So, this is my first time blogging - please be patient with me...
Currently there are 3 members in our family. Chad: the strong, mostly silent husband of 9 years. Ethan Michael (aka E): the super funny, a little naughty 5-year old. And me, Jess. I could go on for hours about me, but that is not the purpose of this blog!!
On or around December 2nd, we will be adding another member to our family - Gabriel Jude. We are so very excited!!! E is the most excited, however, because he stated very clearly that if the baby was not a boy, he would be moving to his grandma's and taking the baby to the big city to trade it in. Thankfully we are having another boy, so the threat of leaving E alone with the baby is not nearly as severe as it could have been!
On July 20th, we had our 20 week ultrasound. It was confirmed at that time, that while all of Gabriel's vital organs were perfect, he was going to be born with bilateral cleft lip and palate. Of course, like all mothers, I was completely distraught. I spent 2 days crying and wondering what I did wrong to cause our son to have challenges in his life he just didn't deserve to have. My mom called me on day 2 of crying and told me to get my shit together because I was strong enough to handle this. And she's right. I don't like it. I don't understand it. But I will get him through it.
So, by now you may be wondering exactly what a bilateral cleft lip and palate is and what is done for such a thing. Between the first 5 and 8 weeks of baby's development, his lips and palate (the roof of his mouth) are formed. Sometimes something happens in that process that causes the baby's lips and palate to not fuse together. There are several kinds of cleft lip and palate, including unilateral (one opening) and bilateral (two openings); incomplete (does not go into the nose) and complete (the nose is impacted also). At this point, we don't know if Gabriel's clefts are complete or incomplete and we don't know how much of the palate is involved. Could be just the hard palate, could be just the soft palate, could be the entire palate. While ultrasounds are amazing at detecting these conditions, they are not great at giving the full details - so we will have to wait until Gabriel is born to know how severe the clefts are. Since we don't know, we are proceeding as if the situation is the worst it could be - but praying for the best.
We met with Gabriel's plastic surgeon a week after diagnosis to discuss the plans for how to deal with this. He seems great - a lot like a surgeon, but has a very big heart for cleft kids. Plus, 2 nurses and my OB have all used the word 'brilliant' to describe him, so how can we go wrong?! During our meeting with him, we discussed what will happen in the event the palate is impacted:
Immediately after his birth an orthodontic surgeon will make a mold of his mouth so that he may custom make him
a Latham Device (Google this if you are curious – it looks a little like a
medieval torture device) - I will certainly post pictures of this when the time comes. He will also have an Echo done to make sure his heart
is ok, his hearing tested to make sure he can hear, and probably all sorts of
other tests to rule out any other issues (which we don’t anticipate any based on
the ultrasounds, but it is better to be safe). Often, cleft is a symptom of another syndrome, so they need to be sure everything checks out OK. He may or may not be in the NICU at this time - a lot of that depends on whether or not we can feed him with a bottle. There are special bottles for cleft babies. They are very expensive, but basically take the need for sucking out - since the baby will not likely be able to suck at all. And yes, you guessed it - that means that breastfeeding is not an option.
At 3 weeks old, the Latham device will
be implanted. This device will try to get the palate as much back together as
possible to make the reconstruction surgery easier. We have to tighten a screw
in this device once a week – which my husband has already declared that he and
Ethan will just happen to be busy every time that needs to occur! Lucky
me.
At approximately 3-5 months old, he
will have his gum line reconstructed. This will involve a bone graft as there
will likely be two spaces in his gums that are open as well. In case you are curious as to where the bones come from for the grafting, they will come from a cadaver. Many, many surgeons will take bones from the baby's hip, but ours has found that the cadaver works just as well and requires less pain for the baby.
So, let me just do a little plug now to thank those who give their bodies when they are done with them. We never knew we would need you, but are glad you were kind enough to give of yourself to spare our son some pain. End plug.
At approximately 9-12 months old,
he will have the lip and palate reconstruction surgery. The surgeon is hopeful
that he can take care of both sides of Gabriel’s mouth at the same time, but
wants us to be prepared that two surgeries may be required depending on the
severity of the clefts. An ENT will also likely put tubes in his ears (if he hasn't already) as 95% of babies with cleft have ear problems.
After that, he will work with a
team of specialists including a pediatric dentist, a speech therapist,
specialized nurses, a pediatric orthodontist, the plastic surgeon, and I am sure
many others until he is 4-5 years old. Hopefully by that point, he will no
longer require any additional surgeries and no one will ever be able to tell how
difficult his first year (or years) of life was.
If this sounds like a lot, it is. If I sound like I am taking it all in stride, I'm not. I have bad days. Days where I come home and cry. These are the days Chad reminds me that we are strong enough to get our baby through this. Believe me - I am trying to be.
Well, certainly not all posts will be as long as this one - but I thought you'd need to know where we have been before I can tell you where we are going. I will hopefully get some pics up as soon as I figure out this whole blogging thing...
Chat soon!
