Every mothers worst nightmare is hearing the words..."there is something wrong with your child". And it doesn't make the blow any less painful, when they are talking about your unborn child...a child who you have yet to meet. This nightmare is now our reality and this blog is going to document our journey.
It's definitely been a while since I've updated anyone on our journey with Isla's Cleft Lip and Palate, and that's because we've been living a "normal" life for the last five months! Ever since Isla's palate repair she's just been your everyday child; playing, laughing and enjoying life. It's still amazes how far she's already come from her birth, and even this time last year with the NAM battles and her first surgery looming over her. She is truly amazing and her strength, happiness and determination is what give me the courage and strength to get her through all this.
Yesterday we had our first "cleft team meeting". For those of you who don't know what this is, once a year we meet with her team which consist of:
All these doctors play a very important role in the journey that Isla is and will be taking through the rest of her life. Up until now, we've only had interaction with the plastic surgeon, orthodontist (yes, cleft children get to see an orthodontist before the average person...usually starting at 2 weeks old if using the NAM) and the ENT. But as of yesterday that changed.
The appointment only took about 2.5 hours, which isn't bad given the amount of doctors that you have to see, and everyone of the doctors seemed extremely pleased with her progress and her results thus far...except the speech therapist. This wasn't a complete shock to me, since Isla doesn't make very many sounds. She has a lot of "words", just not sounds, so they all pretty much sound the same and only a mommy's ears can really tell the difference.
As of right now, Isla is making all of her noises in her throat and not actually using her soft palate to block off her airway to create sound. She can only make a, h, e, i, l, m, n, o, u sounds, and from what the speech therapist told me...she would be able to make those sounds even if her soft palate was never repaired. Which of course is discerning to me, but Isla has amazed me through every step of our journey so far, so I have no doubt that she will continue to do so during this next road in our journey.
So, here we go. Step one (the initial repairs) have been done, and we are about to embark on step two of our journey...speech. She starts February 29th and will be going two times a week for as long as it takes. We got this!
The night leading up to palate repair was horrible. I couldn't sleep, and was full of anxiety. I couldn't believe that my little girl, who is so happy and normal was going to be have to be put under again for another surgery. I knew it was for the best; she was going to be able to eat real food after this, suck from a straw and also learn to say things other than "mama", but still it's not something any parent should have to worry about. And packing suitcases should be something fun, not something stressful.
For some reason hospitals have what I call the "gremlin rule"...no food after midnight. It doesn't matter if surgery is at 7am, 10 am, 12pm...it's always no food after midnight. Why is that?? But how do you explain that to a 10 month old? Sorry...I know you're hungry but you can't eat. So, the morning was already rough with a hungry baby. The apple juice we were allowed to give her at 9am somehow got us through till the hand off at 12:30pm. But it took a lot of distracting on our part to make her not have a meltdown.
The time was approaching, it was now 12:15, so I figured we should get her dressed in her hospital gown and of course, Isla was hamming it up so it was a perfect opportunity for a photo op.
Shortly after they came and took her back to surgery. She was also having tubes put in her ears along with the palate repair, and the overall procedure was to take 2 hours. This is when the tears start...
2 long hours go by and our pager finally goes off! We are escorted back to the consult area where we are to meet with the surgeon so she can tell us how everything went. Of course that walk felt like a mile with all the thoughts that ran through my head. "How did she do", "where there any complications", "is she in pain"...the list goes on and on. When we got to the room, we were greeted by Isla's plastic surgeon, Dr. Gosman, and she let us know that everything went great. That all the NAM work we did in the beginning really helped with the repair by pulling everything together so that there was less tension on the repair. Dr. Gosman had a very proud, energetic smile to her explanation, which made me feel a lot better, because normally shes very straight faced and matter of fact (almost to the point I've felt that she doesn't like me lol).
After meeting with Dr. Gosman, I went back to recovery where Isla was. When I first got there, she was still asleep and looked so peaceful. About 10 minutes into me sitting with her, she started coming out of anesthesia and she was like a bat out of hell. Screaming, wailing her hands all over the place. I was trying to console her, only to be beaten in the head with her no no's (arm restraints) over and over and also having ripped my shirt off with her feet from kicking. It took three different medications for the nurses to sedate her again. Talk about heartbreaking!!!! For any moms having to bring your child into surgery...just know that the WORST part of everything is when they are coming out of anesthesia...my bruises lasted a good week from that episode.
The first night was pretty rough, she was up alot and in pain. I didn't try feeding her at all since she was on her IV drip and I couldn't imagine making her try and use any of her muscles inside her mouth for anything. Even when she swallowed her own spit, she would cry out in pain.
Around 4am, the rounding doctor came in and took a peek inside Isla's mouth. He said everything looks great and she should be able to go home today. I thought he was CRAZY. I mean...she still hadn't eaten anything, she was just taken off morphine an hour prior to him coming in and the typical stay for plate repair is at least 2 nights. He assured me that he wasn't crazy, and that she had such minimal bleeding that he guessed she would take her first drink around noon and by the afternoon we would be good to go.
There was not one thing inside me that believed him...ha. But he was RIGHT!! At noon she started taking sips of formula from a spoon and by 4pm she downed 4oz out of an open cup. I couldn't believe it...he really wasn't crazy lol. Isla even was feeling so good that all she wanted to do was go on rides in the wagon they had. Talk about a resilient little human being.
Now we're home and she's back to her old self...well, not as far as sleeping through the night goes, that still needs some work. I'm so thrilled that my little girl now has a palate...something that we all take for granted. And hopefully, this will be her last surgery for 3-4 years.
Today we had our pre-op appointment for Isla's palate repair. Up until now, I think that I've been in denial about this surgery. I mean...I know it was going to happen, but I just haven't put too much thought into it because life's been pretty normal and I like it this way.
Her surgery is set for August 7th (two weeks from today) and it will be about a 3 hour surgery. They are going to repair the hard and soft palate, which I can only imagine is going to be worse than the lip/nose repair. She's going to have to learn how to swallow all over again, and eventually she'll be able to suck for the first time!
The hardest part about all this is going to be our recovery time. Our plastic surgeon has very strict post -op rules.
6 weeks of wearing arm restraints
6 weeks of eating ONLY formula out of a squeeze bottle
6 weeks of no solids
6 weeks of NOTHING in her mouth
6 weeks of pure hell
She explained why she is so strict, so I will do my best to relay the information she gave me. She said that our hard palate is made up of these tiny little fibers that all fuse together, and that is why the skin there is so tough. And when you create scar tissue in that skin, it gets even tougher. During the first 6 weeks, she is going to be very sensitive to getting a hole (called a fistula) in her hard palate, and this can occur with even a finger touching it. These holes are not easy to repair once they happen, she said, and the reason being so is because of that hard scar tissue that will be formed after the first repair. She also told me that there is a 50:50 chance that once a fistula occurs, that she will need multiple surgeries to correct it, which is obviously not what we want. And this is why she is overly conservative with her recovery rules.
They are also going to be repairing the soft palate and repairing the muscle as well. This is what will help with her speech later on. Without the repairing of the muscle, she will have a lifetime of speech therapy...so fingers crossed she repairs it perfect!
If any of you know Isla, you know that restraining her for 6 weeks is going to be the worst part of this whole experience. So prayers, good vibes and energy please! We will need it.
Sorry it's been quite some time since my last update, but we've been trying to live as normal of a life as possible in between surgeries. Isla is now 4 days shy of turning 10 months old, and boy...is she a firecracker! She has so much spunk and character, that I can already tell she's going to keep me on my toes for the rest of my life. And despite all that she's already been through, she is one of the happiest little girls I've ever seen. My heart is breaking and dreading her upcoming surgery in 2.5 weeks. But...this should be the last one for a few years, so I am looking forward to getting it behind us.
This next surgery that she will have, will be to repair her palate. Right now, she has a quarter size slit down the middle of the roof of her mouth and her soft palate is pretty much non existent (the part where your punching back hangs from). I'm really not looking forward to this repair at all, but it is necessary for speech and eating purposes.
I will keep everyone posted as time goes on...but just wanted to let everyone know to keep her in your prayers over the coming weeks.
Well...it's been six weeks since Isla's cleft lip repair, so it's safe to say that we've made it to the other side! The first week of recovery wasn't as bad as I was anticipating, but that could have also been because she was pretty heavily sedated for the first five days so all she did was sleep like a newborn again. I'm still amazed at the work our surgeon, Dr. Amanda Gosman, did down at Rady's Children's hospital.
We now have our official palate surgery date...August 7th! Yikes. I'm definitely not looking forward to that one, but that should be our last surgery for a good 3-4 years. So we're ALMOST in the clear...for a little while at least.
Since Isla's lip repair I've been working on a new website, www.cleftopedia.com, with another cleft mommy. Before I get into the website, I want to tell you a little about her. Her name is Danielle Zierer and met her through a cleft support forum on facebook. We have so much in common that I call her my East Coast twin. And when I say we have stuff in common...it's almost freaky. We both have two kids...both the same age, with our youngests (Isla and Will) being only 5 days apart born with the same exact cleft. Our birthing stories are pretty much identical with both of our kids. Our husbands look alike, and have the same interests. Both Danielle and I were considering moving to Tennessee until we found out we were pregnant. The list can go on and on, but one of the biggest things that we had in common was the troubles we went through when we first found out that our little ones were going to be born with a cleft lip and palate.
Don't get me wrong, there are a ton of resources out there for AFTER you have your baby, but there wasn't anything for soon to be mommies of cleft baby. The amount of research that the both of us had to do was so overwhelming that it took us the remainder of pregnancies to get a, somewhat, good grasp on what direction we were going to go with our babies. (If you've been following along with my blog, I wrote all about the headaches and stresses of trying to narrow down a cleft team in my post from June 2013 titled "Future Plans".)
One day Danielle and I got to talking and decided we wanted to do something that would help future moms in our position, and that's when the idea of Cleftopedia was born. It was originally going to start out as a document that we were going to post onto the Facebook support group, but there was just too much information so it transformed into a full website.
The best thing about Cleftopedia is it wasn't just put together by the two of us...it's been put together with the help of over 200 other cleft families AND growing! Now when a new mommy is searching for a cleft team in their area, they will be able to see what pre-surgical techniques each surgeon does, hear real reviews from real moms, and even be able to see before and after pics. All I know is...if I found this site while I was pregnant with Isla, I would have been one happy camper! So I hope that Cleftopedia will be able to do that for any new cleft mommy that stumbles across it.
The last night before surgery was a rough one...not for Isla, but for me. I was full of so many emotions...anxiety, fear, sadness, excitement, happiness. It was almost too overwhelming. I was anxious because of all the unknowns; was the surgeon going to do a good job? Was Isla going to handle anesthesia ok? Was I going to like her knew smile? I was sad because I had fallen so in love with who she was...that big wide smile just melted my heart and I couldn't imagine her being anymore beautiful than she already was. I was excited only because it was my last night dealing with the NAM. And I was happy that we were finally going to be able to put this stage behind us.
Arriving at the hospital only intensified all of the emotions I was feeling the previous night. I told the nurse as we were handing Isla over that I felt like I was about to get on a really scary roller coaster...you know that feeling where your stomach is in your throat, you can almost taste your adrenaline, but there's a tinge of excitement and anticipation in there too. I wanted so badly to cry as I gave her to the nurse.
The next few hours were horrible for me. All I could think about was my poor baby being cut open and then sewn together. I was sooo nervous that I wasn't going to be happy with the results, that it made me nauseous. But somehow I held it together...and this is why and how...
Isla's surgery date was on my dad's birthday, Feb 11th. It was originally supposed to be on the 19th, but through a strange set of events they bumped it up to that date. I really feel my dad had a part in that...almost to let me know that he was going to be watching over her and that everything was going to be ok. (For those of you who don't know...my dad past away 7-4-08). Knowing that, and with the overwhelming amount of prayers and support we received from all our friends and family, made me somehow get through those few hours with some peace. So again...thank you all that prayed for our family, that sent their positive energy for a successful surgery and every ones well wishes. Without all of that, I know I would have been a mess.
After a little over two hours of Isla being back in surgery, our pager went off. She was done!! The surgeon then spoke with us and told us everything went great, Isla is perfect and she was recovering. Now we had to wait another hour to see her...longest hour EVER!!
It was time...we get to see her! And that roller coaster feeling came over me again. As I walked into the recovery room, I saw our sweet baby lying there so peaceful with her perfect new little face. All my fears, anxiety and sadness left my body and was replaced with pure joy. The surgeon did an awesome job and I don't think it could have turned out any better. She is perfect!
They moved us up to our hospital room where Isla woke up for the first time since surgery. My heart was breaking because of all the pain she was in. I handed over a perfectly happy baby and they gave me back another perfect baby, just super unhappy, uncomfortable and in pain. This was probably the hardest part for me...I wanted to be able to take that pain away from her, but there was nothing I could do except make sure that nurses gave her her pain meds on time every time. I held her all night long, and slept maybe a total of two hours total.
Morning came and Isla woke up...this time with a smile! The nightmare was over and now we've successfully made it to the other side!
Isla is so strong. She is more tired than usual, but pretty much back to herself. She's managing her pain extremely well, back to eating regularly and smiling and talking every time she's awake. She's my hero.
In less than a week, she will be getting her stitches out. And then in about three weeks they will be taking out her nose stints. After that...Isla gets to just be a kid for a little while! No taping, no devices, no stitches...just a regular little adorable baby! I
This morning I woke up and Isla had been without the NAM for less than 24 hours and I was feeling really defeated. There was already a noticeable difference in the shape of her nose and with 5 days still left to go, I was really starting to worry that all the progress we've done was going to be set back. So I emailed Isla's ortho and asked him if there was anything I could do in the next few days to at least maintain what we've done so far. And to my surprise...he had already fixed the NAM for us!! Apparently Isla has been one of his best patients as far as progress goes, and he also wanted to see her go all the way through with it. So we went and picked it up...and I never, not in a million years, thought I'd actually be happy to see that thing!
But as we were driving down to San Diego I got a call from the hospital. They've moved up her surgery date again! Now it's on Tuesday the 11th!! Only 4 days away, yikes!!!