Isla's Medical Fund

Sunday, December 29, 2013

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.

Thursday, October 31, 2013


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.

Wednesday, October 16, 2013

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.

Saturday, October 12, 2013

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 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.

Monday, September 30, 2013

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 25th. 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 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.

Monday, August 5, 2013

Finally...a Picture!!

I know it's been a while since we last posted, but that doesn't mean we haven't been busy...we've just been waiting to be able to post something worth while.

Since we've decided on a cleft team, we've been spending the last month trying to get a good 4-D picture of Isla with a DVD so that she could have a keepsake when she got older. Ok, ok, we also wanted to get another glimpse of her before she came into the world too. But, since Gemma has a DVD with a gazillion beautiful in-utero pictures, we wanted to be able to do the same thing for Isla.

Easier said than done!! We've learned that the reason so many parents don't know that they are going to be giving birth to a baby with a cleft is because they tend to hide their if they already know something is different about them.

Today marks the FOURTH time in a month that we have gone to get her 4-D ultrasound pictures done. (I know, I know...we've already gotten a bunch, but they say that between 28-32 weeks is the best time to do these because they have more body fat and look more like they will at birth). We were determined to get a good shot, but Isla had other plans...she was determined to NOT let us see her.

First her hand was in her face the whole time, the second time her hand and umbilical chord were in the way, the third time she was pressed all the way up against my uterine wall. This time, she cooperated! Yay!! Although now she's running out of room in there, we were still able to get a few good shots. They were even able to peek up into her palate and it "seems" as if it were in tact. (Not going to get my hopes up...but it really did look that way in the ultrasound). And from the looks of seems that she might be incomplete on the left and complete on the right...or even incomplete on both sides because there is not large gap that you can see.


If I were to guess...I would say that Isla will be born looking very close to one of these babies....

Thursday, July 11, 2013

Deciding on a Team

It's so crazy how just one little piece of information can have you view life completely differently. For a while there people starting looking different to me. I no longer noticed what color eyes they had, the color of their hair, or even what they were wearing because all I was looking at was their upper lips. I was determined to run into someone that was born with a cleft. Not that easy. Imagine standing in a clover field and looking for that one four leaf clover...that's what I felt like. It took about two weeks of this for me to finally realize that I will most likely never find what I'm looking for. Not because it doesn't exist, but because the lip was corrected so long ago that chances are I wouldn't be able to tell, even if I was looking right at it.

So while wandering around that clover patch for weeks, I realized that although Isla is going to be born a four leaf clover,  over time she is going to end up looking just like all the other three leaf clovers. And 20 years from now, when a new mom is in my shoes (looking for that lucky four leaf clover), Isla will most likely walk right past her and that new mom will never even know how close she was to finding that rare, miracle.

So knowing all that now, it was time to make the decision on how to get her to that point. Our main goal is to achieve that three leaf clover look with the minimal amount of surgeries and the only way to do that is to find a really great surgeon and team to guide us through this journey.

Since my last post, we have met with the two local(ish) hospitals, Rady's in San Diego and Children's LA. Both hospitals had their strong points, but of course we could only choose one. So I'll sum up the pro's from each hospital first...

Rady's San Diego

We liked the idea that the hospital was only an hour away and I personally LOVED the fact that it's located in San most favorite city of all time (+).  We were really interested in a particular surgeon down there, but during the meeting we found out that he is no longer doing clefts and focusing more on his private practice and that a new surgeon has taken his place. Now, while I'm sure this new surgeon is great (Rady's wouldn't hire someone that was unqualified), it still scared us because there are no long term studies of her work (-).
After leaving the meeting, we didn't have that warm fuzzy feeling we were expecting to receive, but we were still keeping an open mind. There are so many emotions wrapped up in this decision that perhaps a warm fuzzy feeling was just not going come with this one...

Children's LA

As we were driving up there, both Randy and I were already cursing the traffic. Not a good sign, since most likely one of us will be having to make the drive once a week for the first two months if Isla is going to need to use the NAM (-). We arrived two and half hours after we left the house...alot different of a commute than to Rady's. So there was one negative for LA and one positive for Rady's.
As we entered the class that they were holding for "new parents of cleft babies", both of the ladies (one a nurse and the other a psychologist) greeted us and we immediately felt extremely comfortable with them (+). During the course of the class, we learned  a lot about the hospital... they are ranked in the top 5 in the country (+), three of their five surgeons hold a double doctrine...they are MD & DDS (+), they have a rough timeline as to when the begin correcting the cleft but each child is treated as an individual (+).

Come to think of it...I can't recall one negative from the meeting with Children's LA (except for the commute of course). So the decision was unanimous and with no discussion...the winner is Children's LA. Both, Randy and I knew as we were walking out of there, that this was the place! And that warm fuzzy feeling did come with this decision :)

We have decided to go with Dr. Mark Urata out of Children's LA and we couldn't be happier and more comfortable with our decision. Although we have heard his bedside manner is not the greatest, his work is absolutely amazing! And from the before and after pictures of his children...the symmetry is so unbelievably perfect that there is no way to even tell that they were born with a cleft.

So now we wait...just like all the other expecting parents out there.

Friday, June 21, 2013

Future Plans

So, since the last update, both Randy and I have been doing as much research as humanly possible to find the best surgeon/cleft team out there. Not at easy as it may seem.... For one thing, every doctor and/or hospital has a different approach. We've found that pretty much anyone can "fix" Isla so that she'll be able to lead a "normal" life...but it's making it look good that's a whole different story. So from an aesthetic point of view, there are only a handful of surgeons to choose from and of course we want Isla to have the best possible surgeon out there.

There are so many different things to decide...NAM or no NAM, Lathem or no Lathem, when to start surgery (one doctor will do surgery as early as 2 weeks of life, while others want to wait all the way until they are 6+ months...and then there is everything in between), nose stents or no nose stents, it goes on and on. But what's to say that one way is better than the the other? I guess it all depends on the individual child as to what route you should go...but unfortunately no one practices everything, so it's up to us as parents to decide the best methods for our children. By FAR the hardest decision  and one the most important decisions that we are going to make for Isla's life. After all...the first surgery is going to set the  precedence for the rest of her life, and we are hoping to make the right decision that will actually minimize the possibilities for future surgeries.

We've spoken with doctors all across the nation and have narrowed it down to two local(ish) hospitals. Either Rady's in San Diego, or Children's LA. We still have yet to meet with them in person, but this will come within the next few weeks, so hopefully we'll have a decision by August as to where we will be spending the majority of our first year. But I'm very confident in the two surgeons that we will be meeting with (along with their cleft teams)...their work is absolutely amazing and by the time these children are one year old, the only way you can tell that they were born with a cleft is because you are looking for it. Otherwise, you would never know.

Whichever decision we make...we know it will be the right one, and we'll explain why we made that decision once it's made. The one thing that we do know is that Isla's first year is going to be very challenging and as most of you know, Randy and I were planning on getting married in May of next year. With all the surgeries and unknowns that we are going to face throughout the year, we've decided to cancel our wedding and put all of our focus on our new little addition and our growing family. We are still going to be getting married, just no wedding. We're not sure of the exact date, but we're actually planning on doing it before Isla get's here :) SOO EXCITING. So stay tuned for the date, because we are going to be having a celebratory dinner/BBQ for all those that would like to be a part of our special day.

Friday, June 7, 2013

Bitter Sweet Day of News

Today was the day that we were going up to Riverside to see an old friend, Buffy. She is an ultrasound technician at Baby's First Photos and we just wanted to get a closer look at her cleft to see if we could get a better idea as to what we are looking at. After doing so much research online, a cleft is not just a comes in so many shapes, forms and sizes. Was it going to be a unilateral cleft lip only, or would it be a unilateral cleft lip and palate? Or would it be a bilateral lip...or (in my eyes) the worst case, which would be a bilateral cleft lip and palate. Here's a visual for you guys....
As we're driving up there, my minds going a million miles a minute wondering about what she's going to look like and hoping for the best case scenario possible. Then all of a sudden my phone rings and it's the doctor with Isla's amnio results. After she took the time to explain to me everything that was tested for (none of them good), she gave me the news that everything came back normal!! Yay! What a relief!! Now we knew that all we were dealing with is a deformity that is totally correctable! Our daughter is going to be able to live a (somewhat) normal life :) The rest of the way up there I stopped worrying so much as to what she was going to look like because I was so happy about the news I just got.

We arrived at the place, a little early and was greeted by Buffy...also pregnant, but you couldn't even tell under her scrubs, she looked great! (B&*, just kidding). We started the ultrasound and Isla did not want to cooperate! She really made Buffy work to get some shots of her lip. We did get a lot of this though...
Definitely her fathers
Buffy did a great job making me lie on my side, flip over, get on all fours and jump around so that we could try and get Isla to move into a position that we could see her little face. Whatever she made me do, worked. She zoomed in and you can see it plain as was, what I thought to be, the worst case scenario...a complete bilateral cleft lip and cleft palate.

The picture above shows her yawning...she's laying on her side, so the top of her mouth, closest to the nose is on the right...and there it is. Two slits that go from the mouth all the way up to her nose, making it look almost as if she has a beak...this is the palate. Below is a good picture of the cleft (bad pic of the rest of her face) in 3D and you can really see the lip good.
 Here's a better one of her face below
I don't know if I made a sad face or maybe it was my silence, but Buffy asked if she was giving me more bad news. Although the news isn't the least now we know exactly what we are dealing with and we'll be able to be fully prepared for her birth, and the long first year of surgeries. This was the most informative thing I could have done to date, and I highly recommend doing this for anyone who may one day face the same challenges we are about to go through.
So all in was a very bitter sweet day. GREAT that Isla's brain and chromosomes are normal, but also very sad that she won't be even close to the "perfect looking" baby that everyone dreams about. This isn't going to make her any less loved, or beautiful in our eyes...but we created her and it is now our job to fix her. And that's exactly what we are going to do. So now that most of the "unknowns" are now's time to start looking for the best cleft lip and palate team that is out there. If anyone has any recommendations, please let me know and I will definitely look into them.
Just so you all know...we have decided to put this out there for everyone to read, not because we want your sympathy or for people to feel bad for us...but more so to create awareness so that when Isla does get here, we aren't going to hear so many "Oh, I'm soo sorry", or so many strange looks. We want people to know that it's OK to ask questions about it and not treat the cleft like it's a big elephant in the room.  She will be a just as healthy, beautiful and normal as the next child. Here are some pics that I have found online that have given me strength to know that everything will in fact be just fine....our technology is soo advanced these days, thank God!

Thursday, June 6, 2013

Isla's Ticker

Today was the day for our fetal echo ultrasound so that we could find out whether our not Isla has a heart condition associated with her cleft... and it felt like one of the longest days of my life. Hurry up and wait should be the slogan of the day.

It started out like every other day...get up, get ready, get Gemma to daycare and then off to work. Our appointment was in San Bernardino (about an hour away) at 11:30, so we decided to leave town at 10am. Those three hours at work felt more like three days. I show up to my moms work a little before 10 (she was going with me because Randy had to work) and waited for her to be ready to leave, then we drove an hour, just to wait for another hour in the doctors lobby. See...hurry up and wait.

Finally the nurse calls my name and takes us back... now it's 12:30. She stats the ultrasound, just like any other, but all they are looking  is the heart. The technician that was conducting the ultrasound would make a hmmm sound and then write some  on a piece of paper, so I asked her if she something bad. Her response was, "the doctor will have to go over the results with you." Talk about torture!! I wanted to tell her, " Come on lady...give me a little more than an ohh or awe or hmmm, this my baby your keeping secrets about." But I didn't and just laid there patiently as she  finished the test. The good news was  we were going to get the results as soon as the Dr reviewed the tape, so no having to wait another 2 weeks for results (still didn't make the next 20 minutes  any less painfully excruciating...again, hurry up and wait).

Finally...the Dr!!! He  came in, asked me a few questions, sat down and started reviewing the tape. As he was very quietly going over everything (it was so quiet in the room that if you dropped a pin, everyone in the room would have stopped and looked) the nurse opened up a box of tissues and put them on the table next to me. Now I thought I was sure...Isla is going to have a heart issue... now I'm just waiting for the Dr to tell me how bad. They really need to train their nurses better because once the Dr stopped reviewing everything he looked at me and said... "your babies heart is perfectly fine". OMG what a relief!!! He went on to tell me how her heart is exactly where a baby at that gestational age should be. F that nurse for (in my eyes) intentionally trying to torture me some more, but Hallelujah, phew, thank you baby Jesus, God, the universe and everything else larger than us out there!!! Although we are not fully in the clear yet (still have to get  the amnio report back) now that we know her heart is healthy, chances that she has a chromosome missing drastically reduces!!!

Tomorrow we go for the 4d ultrasound,  so hopefully we get a better idea of how bad, or not bad  cleft is.

Friday, May 31, 2013

Research, Research, Research

There's nothing like the feeling of forever, like waiting for the results of what could be the most life changing news of your entire existence. But, there's nothing else that I can do...but wait, and research!

I swear that I'm going to be an expert on cleft when this is all said and I should be right? But I've found that this is the most common birth defect that is out there, effecting 1 in 500 children around the world. Those are some pretty good odds, considering I have more facebook friends than that...I just happen to be the 1 in 500 of those that it has affected...but hey it had to be someone right, and they say God only gives you what you can handle. But give me a break God! You must think I'm one of the most bad ass women that has walked the earth for all the curve balls you've thrown at me throughout the years.

Anyways, not only is it super common, there is no known reason for why it happens. So I'm not to blame!! But then I thought...if it's so common, how come I don't know anyone that has had this? Well, it's because it's fixed so early that you would never know. Did you know Payton Manning, Tom Brokaw, Cheech Marin, Joaquin Phoenix, Carmit Bachar all had cleft lips (there's more, I just didn't want to keep posting). My point's out there and it can happen to anyone. And she looks just like everyone else to me...

If anyone would like to read more on cleft...this is probably the most informative site that I've found... . I haven't gotten in to reading much on the different syndromes that could be associated with it, because I feel like I don't need to freak myself out anymore. I read one and it wasn't I'll just stopped there. Plus, I'm staying hopeful that it's just a cleft and nothing more...

Since the news a few days ago, I've made another ultrasound appointment with a childhood friend of mine. The technology she has is the best in the area, so we'll be able to get a really good view of her and see just exactly what is going on in there. This appointment is for next Friday so stay tuned. The echo ultrasound for her heart testing is next week sometime, so hopefully we'll know the condition of her heart by then. I also made an appointment with a specialist at Rady's children's hospital for the end of June, to start getting some counseling on what is to come, get a second opinion and just to meet the doctor that will be doing her surgery.

I'm being as proactive and positive as I possibly can, which is definitely helping :)

Wednesday, May 29, 2013

Not so routine...

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. Well as of May 29, 2013 this nightmare is now our reality and this blog is going to document our journey. I'm hopeful that everything is going to turn out just fine, and I'm hoping that this blog will one day become encouragement for anyone else that may have to go through what we are about to....

On May 28th, we went in for our routine ultrasound. I'm 22 weeks pregnant...just about to turn the corner to 23 (yes...every day counts when you're's the ultimate countdown). This is my second child and there were  no issues with the first and up until this point, there has been absolutely nothing wrong with this's actually been easier than first. So the ultrasound appointment was more of excitement to make sure that our baby was still a girl...and she was! At the end of the appointment, the technician wanted us to come back in to speak with doctor so that he could review everything and determine if we needed further care. Not once did she mention that there could be complications, so I figured this was just something routine that this doctors office did just so that they could collect more money from one more unnecessary visit. I made the appointment for the next day, before work just to get it out of the way.

It's the morning of the 29th and I'm getting ready to leave the house. I didn't see a need to drag my fiance all the way to the doctors at 7am just for them to say, "everything looks great, have a good day", so I just went and even brought my 19 month old daughter with me since it was on the way to her day care. When we got into the exam room and laid on the table, I was excited again to see our new daughter (I'll take every glimpse I can get)...the doctor lubed up my stomach and started the ultrasound. Gemma, my daughter, yelled out BABY when her new little sister came on the screen. I told her that was Isla, her baby sister...she then kept saying "hi Isla, hi Isla". All in all a very joyous visit...until....

The doctor zoomed in on her face and then asked one of the nurses to hold Gemma. At first I just thought it was because she kept bumping me and it was disrupting his exam, but as soon as the nurse grabbed her, he stopped, looked at me and said..."did our technician tell you what our concern was yesterday?" I thought...concern ??? WTF do you mean, I thought this was just a routine visit. I responded with a confused, "no". My heart sunk when the words "we believe your daughter has a cleft lip and possibly a cleft palate".

He continued speaking, but I don't really know or remember what he said after that. I was in complete shock. All I was thinking was, how could this be happening?? Is this for real?? I came out of my shocked daze when he asked me if I "wanted to do the amniocentesis now, or wait." I looked at him and said "what, why would I need that" and he said "it's because we need to rule out any other chromosomal disorders that are associated with cleft."

Now my head was spinning and I really felt like I was in the twilight zone. Not only is my daughter going to have a deformity (which is can be fixed, thank God), but there might be something else wrong?? Of course I agreed to do the amniocentesis right there, I mean...why wait?? The results are already going to take 2+ weeks to get back, why add anything more to that excruciating two week waiting period.

They pulled out a needle the size of my forearm and jabbed it right in my stomach, I didn't feel much until they started extracting the amniotic fluid and then I felt extreme pressure and immense pain. I think at that moment, reality set in and I jumped out of my confused daze because I just started crying. Maybe it was the pain that made me snap back into it, who knows. But I was flooded with a gazillion thoughts. At first I blamed myself, I thought what could I have done to prevent this? I've missed a few days of my multi-vitamin...could that have been the cause? I sometimes have a cup of coffee...could it be the caffeine that caused it?? Could it have been from my smoking prior to finding out I was pregnant? Or the drinking I did when we were in Costa Rica (which is when she was conceived).  All I could think of during that amnio procedure was how horrible of a person I was to have caused this to my unborn baby...and now I have to pay the ultimate price.

Once the doctor finished the procedure (which only took less than a minute, but still felt as if a whole day had passed by during that time), he also informed me that they heard a slight irregularity in heart beat so we need to schedule an echo ultrasound to get a more in depth look.

Nothing like dragging out the pain and slowly driving that knife into your heart...why not just tell me everything at once?? Why did he have to drag everything out?? At that point I was speechless, I had no words...which is unusual for me. I finished the appointment in almost a zombie like state, got my next appointment for a month out, and I should hopefully hear something in two weeks. But for now, I needed to rush over to my OBGYN and get my rhogam shot, so I didn't start building up antibodies against my unborn child since I'm RH-.

Whoa...definitely not the "routine" visit that expected when I went.

I got in the car and immediately Google "cleft lip/palate"...BIG MISTAKE. They show the absolute worst of the worst pics on there and I had a meltdown. I immediately scheduled an appointment at the 4D ultrasound place we have in town, so I could see for my self just how bad it was. From what we saw on the really wasn't too bad.

You can see a little slit above the lip, but at least her lips look as if they are in possibly we're looking at only a unilateral cleft...a maybe just a partial. Either way...she still looks absolutely adorable to me, and I can't wait to meet her. Seeing this definitely put some of my worries at ease, and seeing her made me know that everything is going to be just fine. I don't believe there is any way that anything else could be wrong with her...but all I can do at this point is wait, and pray...