Last Days of Isla's Wide Smile

Today was Isla's last adjustment with the NAM and to our surprise, we also had our pre-op appointment. They feel as if Isla has done so well that she is ready for surgery now and so they've bumped up her surgery date to next Wednesday. It's only a week earlier than originally scheduled, but nonetheless...it's a week early and only 6 days away! And I don't know how I feel about this. There are so many emotions running through me right now (anxious, happy, scared, sad, nervous, excited) and I don't know how I'm going to handle this...but the doctor suggested valium, ha.

I know Isla is ready for this stage to be over and to be done with the NAM! As we were leaving our appointments today and I was getting the kids in the car, I noticed that Isla didn't have her NAM in her mouth...when I know for a fact she had it on when we left. I looked high and low, under cars in the car seat, in the car, stroller...everywhere for that damn NAM and it was nowhere. Isla had ripped it out, but now I had to figure out where she threw it. So as I'm unloading the girls again, I find it in between her car seat and the car seat base...broken into two pieces!! I freak out, grab the girls and run back into the doctors office. I'm in tears at this point, because I've had to put this in Islas mouth everyday to get the progress we've gotten and I did not want to loose any progress with surgery now only being less than a week away.

The doctor comes out to talk to me and pretty much laughs at how distraught I am over this. I mean come on...a grown woman crying her eyes out about a retainer, lol.  He said, that everything is going to be fine and that surgery is so close, a few days without it isn't going to hurt anything at all. So there is a blessing that the surgery got bumped up a week, because two weeks might have been too long to go without the NAM to get the results we want. Everything happens for a reason, right??

But I'm already starting to mourn Isla's smile...I remember when I first found out Isla was going to be born with a cleft, I would read the blogs of other moms and I ALWAYS came across an entry that said "I'm going to miss that wide smile". And I remember thinking (as many of you might be too)...how? Don't you want your child to have a smile like everyone else? Well...here I am, and now I'm saying the exact same thing. I AM going to miss the smile that Isla was born with and I AM going to be very sad to see it go. But I guess I'm lucky in the sense that I will have two smiles to fall in love with that will both be Isla's.  So between now and then, you better bet I'm going to be taking lots of pictures!

 

Progress

I'm not sure if everyone has heard, but our surgery got postponed until Feb 19th because Isla got sick over Christmas. Our surgeon wants her to be healthy for four to six weeks prior to surgery, so we have been on complete germ lockdown since the holidays in hopes that we can keep the next surgery date. So far so good, but I am definitely getting cabin fever! And poor Gemma is along for the ride. It's not easy keeping a toddler home with you 24-7 without even being able to go to a park, but we're managing. It's just a shame that I have this time off from work to spend with my kids and all of it has to be spent indoors watching Mickey Mouse Clubhouse over and over and over, and not out enjoying life...like Disneyland trips, or days at the park or beach...you know, all those things you wish you had time to do once you're back working. But it's all for the sake of Isla, which makes it's all worth it. And don't get me wrong...I am definitely enjoying every second that I get to spend with my kids, I just wish we could do more.

So now, we have been using the NAM for 3 months with 4 more weeks to go. We've had the nose stints in for 4 weeks now and there has already been such a dramatic difference in her nose! Her columella (the piece of skin between the nostrils) has grown from about .5mm to 3mm!! The doctor told us that by surgery date, he feels that Isla's columella will be just as long as every other kid her age...which makes me happy, because that just means less surgery for her in the future.

 

The hardest part about this last stretch with the NAM is the new taping technique. And once it's in, it's not coming out until bath time, or the tape gets wet from spit up and I have to redo it. But all the tape just hides her lower face completely and I'm just really looking forward to seeing her WHOLE face...repair or no repair.

 

Do you guys remember that show Home Improvements? Do you remember Mr Wilson the neighbor? You NEVER saw his whole face...the lower half was always covered up by the fence. Well...that's how I feel with Isla.

 





Stage two of the NAM

Sorry it's been some time since I've posted anything, but I've been (im)patiently waiting for stage two of the NAM so that I can post Isla's progress...and here we are!! Finally we are working on her nose.  I'm not too sure she's as happy about it as I am...even though she looks pretty happy here.

When we first started the NAM, the piece below her nose (premaxilla) was 11mm away from the rest of her jaw line. It is now only 3mm and perfectly centered! I'm amazed at how far the NAM has brought us thus far.

Now that her premaxilla is 3mm from her jaw, they can finally add the nose stints. This is going to help elongate Isla's columella (the piece of skin between the nostrils). Right now, it's only about 1mm long and without the NAM, having surgery now would give her a smashed/flat looking nose....which is not what we want because that just means more surgeries down the road to correct that aspect of her nose. Our goal is to minimize as many surgeries as possible. With only 5 weeks left before surgery, I'm hopeful that this is going to get accomplished, but fearful that 5 weeks might not be enough time...either way, I'm putting all my faith in our cleft team since they are the experts at this. Surgery is set for January 28th, it's going to be here before we know it! Eeeek.

The NAM

We're officially on the road to repair!

While doing all of our research before Isla got here, we decided on a pre-surgical technique called a Nasoaveolar Molding Device (NAM), should her cleft be complete and affecting the nose...which it is. What this device does is pull her midgumline back in line with the rest of her jaw and it will also help shape her nose. This is going to hopefully reduce 2-3 surgeries down the road as well as reduce the possibility of bone graft on her gum line by 60%. So, to us...the NAM was a no brainer. It's more work on our end, but what's 3 months of work for your baby to help prevent them from all the pain that they will endure with all the additional surgeries down the road?

Below is a picture of what the NAM will be doing for Isla. Before the NAM, that piece that looks like it hangs off the nose is actually attached to the tip of the nose. So unlike you or me...Isla doesn't have the cartilage in between her nostrils to create a point of the nose. Without the NAM, the repair would make it seem as if her nose was flat, but as you can see from the picture below...the NAM really does wonders for the nose.

 

The alternative is to let the nose do what it wants and then wait until she's 4 or 5 in order for her to have her first nose job.

 

 



Because she is so small and growing so rapidly, this process is only going to take 3 months! Every week we have to go in to see the orthodontist and he adjusts the NAM (which looks just like a retainer that most of wore...there's just no teeth for it to attach to and that's why we have to tape to her face). After the 6th to 8th visit her gumline should be fully aligned with the rest of her jaw and that is when they will put the nose stints in and also begin taping the upper lip to down to elongate it. This process is supposed to only take 4 weeks! So, up until her first surgery, which will be sometime in January/February she will be sporting this look.

Insurance will be the death of me

It's no wonder that our country is in the financial state that it's in. I've spent the last two weeks on the phone with our insurance company trying to iron everything out for Isla's care, just to come to the realization that everyone that is on Medical (or state payed insurance) are the people that are getting the care that they really want.

Isla is three weeks old today and as of yesterday she finally saw her cleft team. Not sure if you remember, but back when I was pregnant we decided on going to CHLA...well, not anymore. We will now be going to Rady's Childrens and I couldn't be happier about that, but it still doesn't mean that I am happy with our Insurance company!

When I was first researching cleft teams, we spoke with a nurse at CHLA that strongly advised me to go with an HMO because it was going to save us a TON of money. I remember specifically asking her if  it was going to be hard to get a referral over to them for the treatment of our daughter, and she assured me that no one ever gets denied. I then looked into the numbers, and she was right! It was going to save of thousands of dollars by going with an HMO rather than a PPO, so that's what we elected to do.

This has been the BIGGEST nightmare of my life so far! Here's a little peak into what my life has been like...

1. Isla is covered under me for the first 30 days of life (I am contracted with Hemet Medical Group)
2. Hemet Medical Group does not contract to any Children's Hospitals
3. Because Isla was in the NICU until October 2nd...the insurance company will not allow her to switch Medical groups otherwise her NICU stay will not be covered, but she can be effective as of November 1st.
4. I spent two weeks trying to get a referral to see the Dr. we wanted to see in CHLA, with no luck.
5. Finally on week three, we got a "temporary" approval from Hemet Medical to go down to Rady's Children's Hospital for a consult...however, now they won't approve any ongoing care and want us to go with their approved hospital Loma Linda
6. I now have to file an appeal with my Insurance company so that the care will be covered for the next two weeks, until she is transferred to her own Medical Group (Children's Physicians Group).
7. I called to confirm the transfer of medical groups for November and the insurance company did not have the right group selected for the transfer. And because I called to confirm this AFTER their cutoff date, they said that the transfer would not be effective until December now.
8. After calling and speaking to probably every single person at the Insurance Company I FINALLY got a hold of someone that actually knew what she was doing and she completed the correct transfer for me.
9. Although, Isla is now going to be under the right medical group to see the specialists that she needs...her Pediatrician isn't covered under that group. FML!!!

The thing that really gets me is...We pay for our insurance, we work, we pay our taxes, we don't ask for handouts, but yet we're treated as if we are second class citizens when it comes to getting the right health care. Now, if I was on Medicare and getting our insurance for free from the state, then we could go wherever we would want to go, with no red tape whatsoever. Doesn't that sound a little ass backwards?? You would think that the working class...the people that are actually paying for these services... would be the ones that would get the perks to go wherever they would like to go. Instead, the people that are sitting there with their hand out and ass on the couch are the ones with more rights than us. Now that's some motivation to get to work and be a contributing member of society...NOT.

Apnea Monitor

In my last post, I left off where we were waiting on the sleep study results, so I'll start there. The results came back in on Wednesday and  they were good...no obstructive apnea! However...they were still going to send us home with an apnea monitor. Apparently all babies are born with a slight case of central apnea, so during the test she held her breath for a period of 13 seconds...which is enough for insurances to send us home with this handy dandy machine that will let us know when and if Isla stops breathing for more than 19 seconds and also if her heartbeat raises too high or goes too low. Sounds like a parents dream come true right? No getting up every hour in a panic, just to "check' if your babies breathing (all you moms know what I'm talking about).  WRONG! Let me introduce you to nightmare number one...

The Apnea Monitor

 

 

They should have prescribed a case (yes a case...a bottle wouldn't be enough) of Xanax with this because all it is, is an anxiety builder. The thing goes off...alot! But not because Isla isn't breathing, but because of machine error. So, instead of waking up on my own to make sure she's breathing, I'm being woken by this machine (that sounds just like a smoke alarm going off) to let me know she's not breathing or her hearts not beating. Talk about PANIC! But everything has been just fine with Isla, and this machine might find a new home out in the garage very soon.

 

Besides the Apnea Monitor, Isla is a very easy baby overall. We've had her  home for a little over a week now and there have been no issues. She eats like a champ and sleeps like a baby. She's up over her birth weight and right on track to have her weight were it needs to be for her first surgery around 3 months  of age. 

 

Now, the next step is to get her into seeing her cleft team...which has been a whole different obstacle because of HMO bullshit. But hopefully we will have something figured out this week, and on the road to repair.

 

 





When Days Feel like Weeks

It’s hard to believe that it’s only been five days since we’ve welcomed little Isla into the world. There has been so much that has happened that it feels more like a few weeks ago, rather than only a few days. Both Randy and I apologize for not being able to answer everyone’s questions individually, but as you can only imagine…time is not something we have a lot of right now.

For those of you that don’t already know, we welcomed Isla Pearl Smith into the world at 11:38 am on Wednesday September 25^th. She came into the world screaming, pink, eyes wide open, weighing in at 7lbs 8oz and measuring 20 inches long. She is a beautiful healthy baby girl! And just as we suspected, she was born with a complete bilateral cleft lip and palate (CBLP).

 

 Both, Randy and I, fell in love with her at first sight. And the special bond that Randy and Isla already have, words cannot even describe. The look of contentment, joy and fulfillment in Randy’s eyes when he holds her just melts my heart. And the way that Isla looks at him...you can tell that she is definitely going to be a daddy’s girl. And as the days move along (even though it’s only been five) that bond they have just grows stronger and stronger…so much so, that Randy has to leave the room so that Isla will let me feed her, otherwise she just screams and screams for him to do it. Some have asked if that makes me sad or jealous, and truthfully….I wouldn’t want it any other way. Just being able to witness that bond they have makes my heart feel complete and whole.

We are so thankful that we found out that Isla was going to be born with a cleft when she was only 23 weeks in utero. It has given us the chance to prepare for what is to come, but it still hasn’t been easy. Since Isla was born with a CBLP feeding and breathing was definitely going to be the first obstacle that Isla, and us, were going to have to overcome. There was quite a bit of noise or gurgling with her breathing, almost as if she was choking on her tongue, but all the nurses seemed to think that was normal… especially for a baby with a cleft.  So, Isla seemed to have the breathing part down.

Now for the feeding. I was hoping that I was going to be able to breastfeed, but because she has no palate, she doesn’t have the capability to create suction…so that idea went out the window. Now we had to find out what bottle she was going to accept. Easier said than done… Just to give you an idea of what these bottles are like…you have to squeeze a little bit of milk in her mouth as she tries and sucks…so during the feedings she would spit everything up. There are only three bottles that are conducive to cleft babies and Isla wasn’t accepting any of them.  

Randy and I were terrified to go to sleep that night because we feared that Isla would choke, so we had decided to take turns sleeping.  At around 9pm the lactation and nursery nurses took her from us, so that they could try and feed her. They also wanted to hook her up to monitors to make sure that her vitals were ok while she was feeding and not having any desaturations in her oxygen, heart rate or breathing. While we were thankful we were going to be able to get a little bit of sleep, something didn’t feel natural about handing over our newborn little girl to someone else…but we knew it was for the best.

When we woke up in the morning and met with the nurses and the attending neonatal doctor, they told us that they wanted to take Isla to the NICU in Redlands (Unfortunately  the area we live in does not have a NICU of their own, so we have to travel an hour away to get the care she needs). Isla did not do any better with them throughout the night and only got in 10ML of milk at the most,  and her oxygen actually de-sated to somewhere in the mid 50’s while they were trying to feed her. (Anything below 92 is considered low oxygen).  

We knew before Isla was born, that there was a possibility that she was going to have to go the NICU, but it still didn’t make it easy to hear.  But like I said…we had already prepared ourselves for the worst, so when we were following an ambulance out to Redlands that was carrying our newborn daughter, we were surprisingly strong and OK. I feel for those mothers and fathers that are not as fortunate as Randy and I, and find out about the cleft when their baby enters the world. I can guarantee that if I didn’t have 20 weeks to mentally prepare myself, I would probably have been committed to a psychiatric ward.

 

 

We weren’t allowed to see Isla as soon as we arrived to the hospital.  They had to admit her, try and feed her and check her vitals to make sure she was stable.  They also gave her a feeding tube to help assist with the feedings should she need it. Once we were finally allowed back to her room, her practicing nurse came up to us and asked us “Why exactly was she admitted to NICU again?” Apparently this nurse had absolutely NO trouble feeding her and she took down a whole 40ML of formula on her own with no spit up! And even better…her vitals remained completely normal, so no desaturations in oxygen! Maybe we didn’t give Isla long enough to try and figure this hard world out? None the less…she’s at the NICU, so it’s better to be safe than sorry, so they will be monitoring her for at least a few more days.

 

Right about now is when things started getting really hard for me. Although I was prepared for most things that are cleft related, there was one major thing that I wasn’t prepared for.  I wasn’t prepared to have to split my heart into two separate places. What I mean by this is…I also have a two year old at home, so when I would leave her to spend time with Isla it would kill me inside and then when I had to leave Isla to go home to Gemma that would kill me too. No matter where I was, I felt as if I was a terrible mom for not being able to be with the other.  I have never wanted anything more in life than to be able to have my heart under one roof again. I wanted more than ever to get Isla home and by the sounds of everything it was looking like we were going to be able to do that by Sunday!

Since Isla has been at the NICU, she has had absolutely no trouble eating. She  pulled out her own feeding tube less than 24 hours of being there. She is now taking 2oz every 3 hours and has not had any issues, so we were sure that Sunday was the day that she was going to come home. Sunday was going to be the day that she could meet her big sister. Sunday was going to be the day that we would be able to start our normal, yet crazy lives under one roof. But all Sunday turned out to be, was the day that she had a desaturation and the day that they were going to decide to keep her longer.

 

 

I remember driving up to the hospital on Sunday with this big sense of joy and happiness. Randy  said he felt like he was going to pick up a new car and take it home. (to translate from boy language, that meant he was really really excited).  So you can imagine the disappointment we felt when they told us no…she’s staying.

They have now ordered a sleep study to be done. Apparently babies with clefts have a higher risk of sleep apnea related SID’s due to obstructive apnea, so the doctor believes that this test is extremely important. I completely agree…breathing is not something to mess with…ESPECIALLY when you hear the word “SIDS” as part of the sentence. So to circle back to the first few minutes of her life, it was possible that she was choking on her tongue, but we won’t know the answer to any of this until Wednesday.

As of right now, that is where we are…waiting on the sleep study.