Not so bad after all!

As I had feared, last thursday was the day. Heading to our appointment I was nervous, scared, sad, anxious, you name it, I was it. Upon our arrival Dr. K assessed Graham's progress. As we are, he was very impressed. The space on Graham's lip appears to be significantly smaller than when we began, as demonstrated by the pictures I posted last week. Sure, this is good, really good. But, that means is was going to be time to start the nasal molding part of the NAM. This is not so good. For Pete's sake, the poor little guy had just gotten to the point where he tolerated the plate and now we are going to add a wire that sticks into his nose. I was not a fan.

As Dr. K sat designing and building the piece of plastic that would mold my little guys nose into perfection we chatted. He told my mom and I about another blog that chronicled another little girl going through the NAM. In fact, she had her surgery shortly before Graham was born. You can check her out here. Although she started out a little different than Graham, the results are nothing short of amazing. Reading through her blog was like being inside my head when it came to the emotions surrounding caring for a child with cleft lip. It was so refreshing to know that there was someone else out there that knew what I was going through.
Soon enough it was time to fit the plate with the newly added nasal stents. After some adjusting we got a good fit and amazingly enough he didn't seem to mind it too much. Sure, there was some fussing and head shaking, but as he did with the plate alone, he settled in within a few minutes of putting it in. Praise the lord, this might actually be ok. And, it didn't look quite as bad as I had feared.

While we were there I asked more questions regarding the time line of the molding and surgery. As with most things in life, only time will tell. Dr. K said the process would most likely take about 6-8 weeks but we would reassess every week when we saw how Graham was improving. In a few weeks we will have a meeting with our surgeon to talk about timing of the surgery.

That night we had dinner at the beach club with the family. Graham was happy as a clam hanging out on the towel and watching all the big kids. What a trooper!


Our routine

Graham is supposed to wear the NAM 24 hours a day, 7 days a week. While I try to be good about keeping it on him, I do tend to stall a little bit when the tape comes off... or rather, when he rips the tape off. The process of replacing it is heart wrenching. You see the look of relief on his face when he gets it off, then the screams of agitation when it goes back on. I don't believe it hurts him. He doesn't have any sores and the appliance has not been adjusted and therefore is not moving anything right now. I am convinced all his fussing is simply pure agitation. Although we saw glimmers of him getting used to it, those are long gone. He hates it. There is no way around it. The last 2 night have been rough to say the least. Up until the NAM Graham has used his binky to go to sleep. Since the NAM he has refused anything in his mouth with it in. The biggest bummer is when I take it out to feed him before bed, he eats and falls sound asleep. The problem is, I have to get the NAM back in. It ALWAYS wakes him and ALWAYS sends him into a tizzy. I walk with him and pat him until he falls asleep and then try to gently lower him into his chair. Sometimes it works, most the time it doesn't and we start all over. And then we do it all over again at 3am and 6am when he wakes up to eat. I keep trying to get him to latch with it in but have had no success yet. It would be so much easier to just be able to leave it in all the time.

We have gotten into quite the routine with the taping.
1. First I gather all my supplies needed.
-the NAM, cleaned and dried
-cavilon barrier for his skin
-replicare, which is a tape to protect his fragile cheeks from the steri-strips
-steri-strips for both his lip and to hold the NAM in place.
-rubber bands
-rubber band block to prepare the NAM tape

2. I get Graham nice and calm with his binky and a tight swaddle. I usually do it in front of our big windows as he loves to look outside. The first step is to take a really good look in his mouth to make sure that there are no signs of redness or sores caused by the NAM. This time I did not need to replace the replicare on his cheeks but, if I did, this is when I would place that on. The replicare is a this piece of tape that acts as a barrier to the steri-strips. The steri-strips need to be changed frequently so this way we are not continually ripping them off his skin.

3. Next the steri-strip across his lip is placed. The goal of this is to try and guide the 2 closer together. If you look at his birth pictures you can tell that this simple taping method has produced a huge amount of change. I am sure to most this seems like minimal change, but to me it is huge. You can see that his gum has noticeably shifted down and is now actually touching the gum on the left hand side. His lip has been brought closer together and his left nare actually has some shape to it. Seeing these differences makes this process a tiny bit more tolerable.

Occasionally I can coerce a big old grin out of him.
It makes my heart melt.

4. The last step is the worst. I hate it with a passion, as does he. I prepare the rubber bands on the block by folding one steri-strip around each one. This is going to become the anchor that will hold the NAM in place. The NAM is gently placed in his mouth and secured with the tape and rubber bands... and then the crying begins. Although he still hates it, the amount of time he cries gets a little shorter each day. I am sure that will all change tomorrow when the nasal wire is added. My stomach is already in knots.



A glimpse

I love when it is tape change time and I get to see a glimpse of this little guys face!
We love you so much Baby G!


NAM day 2 - 6 weeks old

After a trying first day amazingly enough we had a typical night. Come 6 am though, Graham was having nothing of the NAM being put back in. I was having nothing of getting out of bed at 6. So out it stayed for an hour while we both caught a few more z's.
Finally it was time to get up and get going. I cleaned the appliance, like I do 3 times a day, replaced his tape and took a close look in his mouth before securing it back in place. Sure enough there was a small red area on his upper right gum. As I replaced the NAM I couldn't help but cry. I know this is for the better, I know in the end it will be worth it but right now I feel responsible for hurting my baby. I feel like I should be protecting him from all this pain but instead I am the one doing it to him. Soon enough he chimed in and we were both a blubbering mess. Fantastic. Here we are supposed to be getting ready to head to Lake Chelan as a family and we are both on the floor crying. Luckily I quickly snapped out of it, realizing that I need to be the strong one here. I need to give him all my energy, it can't be wasted on feeling sorry for myself. He, on the other hand was not so easy to settle. I walked, I swayed, I shushed and nothing worked. I so badly wanted to rip that thing right out of his mouth. But I couldn't. I couldn't just give up when the going got tough. This is about him, not me... Remember! I decided I would make a quick phone call to Children's just to let them know what was going on since we were going to be leaving in a bit for the weekend. Sure enough they wanted to see him.
I packed all three boys in the car and off we went. Dr K got us right in and quickly spotted the problem. After a few adjustments and a pep talk from the orthodontics team, we were off. Graham fell fast asleep on the 5 minute drive home, thank goodness. We packed up the car, picked up Dan and headed out to the lake. Hey, I told Dr. K, if we were going to be miserable this weekend we might as well do it in the sunshine!
Graham, and all the boys, were troopers on the way over. We made it with no stops!
Once there we tried a feeding with the new adjusted NAM and Graham was still resistant. We took it out had a good nursing, a clean diaper, replaced it with only a little fight and he was good to go. Amazingly enough he was not fussing. The whole evening was more of the same. Although I wouldn't classify him as "liking it", he is definitely tolerating it. His fussy times are a bit hard because he will not take his beloved binky with it in. But usually a good swaddle and some bouncing will get us through.
At this point the idea is just to get him used to the device. Because his palate is not involved in the cleft the NAM is doing very little right now. Next week we will add the nasal wire. This will help to mold his left nare into a better shape prior to surgery. This part I am dreading!
On another note, G is 6 weeks old today! He had been getting really good at his smiles until the NAM came along. I am anxious to see those again someday! He is a champion nurser and eats every 3-4 hours like clockwork. He is getting stronger every day and loves to hold his head up and look all around. We have finally graduated to size 1 diapers, and yes, momma cried. He still hates to be put down during the day so in order to get anything done I pack him in the moby or Bjorne and go about my business. Every once in awhile I get lucky and he takes at least 1 good nap in his seat. Overall, he continues to be a relatively easy going baby. For that I am thankful, because Alex is enough if a challenge for me right now!

Snoozing on the way to Lake Chelan.


NAM day 1

Our appointment was at 1:30 and we arrived with a sleepy well fed baby, thinking that would give us the greatest chance of success. My mom went with us for support and my dad was nice enough to keep Alex for this appointment. Once in the clinic we set Graham down in the boppy (love it how they use a boppy in the dentist chair for the infants). He immediately opened his big blue eyes and glanced all around. Soon enough Dr. K fitted the appliance and that was the last of happy Graham. After a few adjustments and teaching me how to tape it, it was in for good... and we heard about it! Graham was not happy and neither was momma. I hate seeing him so upset! I had the inclination to take him and run out the doors but we had another appointment to go, we were stuck! During the appointment Dr. K cut diwn a few of G's binkies to fit with the appliance. This kid LOVES his binkies, surely they would help us get through this. But nope, this kid was not having it and getting madder by the second. On to the next thing. I figured I may as well feed him to see if I could calm him. I was actually eager to try since so many had told me that nursing may be even easier with the NAM. Yeah, well that was a lie! He was having nothing of it and it was seeming literally impossible for him to even be able to latch. I can see how it may be easier to feed by bottle, but with the button in the middle of his face it was literally impossible to get anything in his mouth. I thought maybe in the comfort if our home we will find a position that would work.
Soon enough our craniofacial nurse checked in and quickly let us head home.
At home things were no better. We tried feeding again to no avail. That's when I promptly removed the NAM And fed the poor kid. He was exhausted. He ate until his heart was content and he was out. I slipped the NAM back in with only a few whimpers and rocked him back to sleep. Ahhhh! A couple hours later we did it all again and he was out for the night around 10.
One day down and who knows how many to go. It can only get better from here right?

Graham getting his NAM.

Graham with his perma-frown.


NAM update

1 month stats
Weight: 8 pounds 10 ounces (25th percentile)
Length: 21 inches (25th percentile)
Head: 37 cm (25th percentile)
Last tuesday was to be the day we started NAM. While I was not am not crazy about the device for the simple fact that it is somthing on my sweet little baby's face, I have resigned myself to the fact that this is absolutley going to give us the best outcome. I mean, come on, this is my little guys face, of course it is worth it!
However, G- man decided to through a little wrench on our plans...
Since Graham was born we have noticed that he was quite a loud breather, but the doctor's reassured us that this was to be expected. Over the past few weeks this has gotten worse, with less of a "noisy breathing" sound and more of an obstructed airway sound. I say "obstructed" because it appears very difficult for him to move air during these times through his nose, yet he is able to catch a few gasps through his mouth until I can get up and calm him. The puzzling thing is that he does not do it all the time. He has perfectly good hours of sleep with little to no noise interrupted by these intermittent struggles. There seems to be no rhyme or reason. We have him sleeping upright with the thought that maybe it is reflux but it seems to do no real benefit as when he is in bed with us he is no worse.
When we went in to our clinic visit I expressed my concern to the dentist. Needless to say, he was not comfortable starting the NAM with these unidentified breathing issues. And, unfortunately the whole craniofacial team was out for the week. Fortunately, we got an appointment set up for friday with a new (to us) doctor and headed over to our previously scheduled 1 month pediatrician visit.
Dr. C was concerned and agreed with not starting the process. She gave us the option of being admitted to the hospital and "observed" on monitors. We all know that this comes with it's risks too and I was not so much a fan. We toyed with the idea of starting a PPI (proton pump inhibitor, aka. anti-reflux medication), but we NICU nurses know that there is a lot of controversy over weather or not they really work in infants. In the end we agreed that we would watch him a little longer to see if maybe it is a passing thing and see what craniofacial had to say on friday. One thing Dr. C was not so concerned about was his 27 ounce weight gain in only 22 days! And she wanted me to start supplementing with bottles! Pa-sha!
The next 2 nights were relatively uneventful and we met with Kelly on friday. After a lengthy discussion and a overwhelmingly normal exam we decided to start Graham on some Zantac to see if there was any improvement. She felt comfortable with following through and starting the NAM with the knowledge that it can always be taken out should Graham get worse. She also wanted us to continue the nystatin we were on for thrush to make sure that there was no evidence of it when we introduced the device.
So... while I don't feel there is any huge improvement with the Zantac (if anything he has been much more spitty) he has only had 1 self resolved period of difficult breathing. Tomorrow we will visit the dentist, Dr. K and I assume he is going to be ready to start. Graham's cleft has made a huge improvement with the taping and I am nervous, yet excited to see the progress with the NAM.
Last night as I lay Graham down to administer his medications I thought to myself, never in a million years did I ever picture this. This is what I do at work. My little boy is not supposed to need all this stuff. I am not supposed to be spending my maternity leave in doctor's offices and hospitals, worrying about wether my little man is going to stop breathing, putting cavilon, replicare and steri-strips on his face daily, and administering his medications.
But now this isn't my work, this is my life. This is my perfect littlest guy and I wouldn't have it any other way. I would do anything for him and I can't agree any more with Dan when he says "he was meant for us".
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Before and After

Our basement remodel started at the end of March with the hopes of having it complete for the June 10th arrival of the G baby. Well, we came close! All construction was done by the deadline and carpet was laid June 16th. Not too shabby!
Here are the amazing results...



Tyler's Room

Family room

We couldn't be happier with the results! The basement went from a place I only went to do laundry to one of our main living areas. And the boys love their new "toy room". Tyler was a little hesitant to move to his downstairs room at first but has managed to grow quite fond of it.
As with most projects, we went way over budget so the decor and furnishing will have to wait! Stay tuned for more pictures when we get all the fun stuff in!



Suncadia... minus the sun!

This year our family trip was to Suncadia. We filled two houses with a total of 25 people and despite the lack of sun, had a memorable time. Thanks mom and dad for another successful Cross Family summer vacation... 25 people and no fights, now that's an accomplishment!

All 13 cousins...
(the morales boys were missing from the picture)

spent 5 days swimming,


Walking with only a diaper and t-shirt ( yes, that is my WT little boy!)


Snuggling this little dude,

Picking all the "M's and M's" out of the trail mix,

Watching Elmo on the computer,

And playing at the park.
We got to meet up with these cool cats too! Alex and Erin may have been found together in the treehouse... we are going to have to watch these two in the years to come!

It was so relaxing, I most definitely was not ready to leave! I am pretty sure the boys weren't either.



4 blissful weeks

Graham Henry you are four weeks old.
Wow, what a 4 weeks this has been! You have been such a blessing and we couldn't imagine life without you.
There are so many things that I want to remember about these first 28 days with you in our lives...
The way you always have your hands next to your face, as you always did in my tummy.
The way you grab my finger behind your ear whenever you are nursing.
Your 2 cowlicks that I am sure are going to cause you a lot of grief in the years to come, but right now I love them.
Your strawberry blond hair. I hope it stays!
The way you always scoot closer to me in bed and I always wake to find you snuggled in close.
The way you grunt and snort while eating.
The way you can occasionally find your thumb.
Your big blue eyes that catch any contrasting colors and study them for so long.
The way you pull your legs up and stick your bottom out whenever I pick you up.
The way you won't let me put you down.
The way you always poop just minutes after I change you.
Your tiny little ears.
The way you scrunch up your forehead.
The way you hate to get your diaper changed.
The way you look just like your older brothers.

Much to my surprise we have been blessed with yet another wonderful baby. Your night time schedule consists of only waking once at 2-3 am and then again around 6-7 am. Most nights you spend the first few hours in your co sleeper and then get to snuggle in with us after the first feeding. In the last week you are much more alert and will spend about an hour awake after your feedings. You love to be held and are not much for anything that demands you being put down. Hence the swing and bouncy seat have gotten very little use.
The most exciting thing is that you flashed your first grins on your 4 week birthday! Mommy immediately took off your tape so we could catch the full smile. We can't wait to see more of these!
Graham, there are no words to express our love for you. Your brothers are so proud to have you in their lives! Mommy is thoroughly enjoying each and every second of you and daddy is constantly planning all the fun outings he is going to have with his 3 boys.
We love you Baby G!