Thursday, December 16, 2010

A Baby is Better in Person! ^.^

If you choose to look at any post on this blog, please look at this one :)

When I saw pictures of kids with clefts, I pretty much just saw the cleft and not that baby. When I see Daniel not only do I love him to death because I'm his mommy, but I see an actual baby, not a birth defect. For this reason I have included some videos in this post so hopefully you can get a feel for who Daniel is and how stinkin' cute he is in person! :) 


Here is a video of Daniel's lovely newborn cry. The green glow is coming from a special photo blanket/pad that helps with Jaundice. Daniel was under the biliruben lights for awhile, but he hated them so much that they had to use this blanket instead.







Daniel sleeping. He was so tired that you could lift his arms and they would flop right back down. :) 






Daniel and Ryan hanging out on the couch:






Daniel in his "Play Gym." He enjoys being on his back so he can stretch, kick and wiggle. Looking up at his toys helps keep him entertained while he plays on his own.








See? Isn't he even more adorable when you can see more than just a still shot? ;)

Pictures Galore!!!

Here are some of our favorite pictures of Daniel. Enjoy!

One of his latest smiles. LOVE THIS!!



Daniel takes flight



Cuddling with Grandma



Cuddling with Daddy



Cuddling with Mommy... 



He likes Cuddling



But still gets pretty mad at times



His special bottle fell as I walked by, but didn't completely fall off the table



Eating



And eating



And eating! He loves his food, and get quite upset when you take it away to burp him



Out like a light!



About one week old and getting more and more awake



Making funny faces




When his umbilical cord had just fallen off



Getting ready for his first sponge bath at home



Just finished bath time! He really enjoyed it.



Flexing those guns!



Getting ready for his first boxing match! (Just two days old, here)




Three days old and still a little swollen. Loved those pudgy cheeks!



Swaddled nice and tight and ready for a nap.





^.^      We love our Daniel!      ^.^

Tuesday, December 14, 2010

A Cleft What?

A bilateral cleft lip and palate. 


While in growing inside a warm belly Daniel's upper lip and palate didn't fully come together! This is one of the most common birth defects, affecting about 1 in 700 children in the USA, and closer to 1 in 500  newborns in Utah. Nobody knows what causes it, though it is linked to smoking and genetics. 

Basically there is a gap in Danny's lip and gum line, and there is no palate. You can pretty much see straight up into his nose when he opens his mouth. It can be pretty cool to look at.


You can easily see the septum dividing his nasal cavities.
 His front gum line is protruding forward with his lip on top of that



Here are some links if you want to read more about clefts:

This is a cosmetic defect only, and does not affect brain development, learning, or any other aspect of regular growth or development anywhere else in the body. With our wonderful modern medicine, it can be repaired through plastic surgery and orthodontic interventions - almost to where any scarring or abnormality is undetectable. His lips and mouth do not hurt Daniel, though he sometimes has raspy breathing and gets mad when he spits up if milk gets up into his sinuses. He will probably need some speech therapy at some point as his mouth changes with the various surgeries and repairs.

We knew that there was a possibility of a cleft before our son was born, so we were prepared, however it ended up a little worse than we were hoping for...
          Some kids are born with just a cleft lip on one side. 
          Some are born with a cleft lip on both sides. 
          Some with just a cleft palate on one side, others with a cleft palate on both sides. 
          Some kids have both a cleft lip and palate, but just on one side. 
          Daniel has a cleft lip on both sides (though one side is quite minor) and pretty much has no palate to speak of! However he only has a gap in his gumline on one side. Yay!


Not the prettiest picture, but here you can see up into his sinuses - pretty crazy
The small white blob in the middle is a lovely boogie. Ick.
Again you can see how his gum line and part of his lip comes too far forward


Surgeries Galore!

Because of the severity of Daniel's cleft  he is in for quite a few surgeries the first 5 years in his life, starting with a minor surgery January 4th to get a prosthetic palate that will be adjusted and replaced as he grows. It will also be attached to his protruding gum line and help bring it in, kinda like braces for teeth. He will have his lip closed at 4 months on March 3rd. After that comes a surgery to get a soft palate around 9 months, another surgery between 18-42 months for another soft palate repair. He will get his hard palate repaired around 4 years old, and a bone graft to fix his gum line around 6 years old. Around 6 to 7 years he will get any neede nose and lip revisions and after that there will be various orthodontic procedures to align his teeth and keep his jaw aligned. The hard palate prosthesis is also frequently adjusted until the reapir at 4 years.


UGH!


But we are very, very grateful that we have such great surgeons so close with so much experience repairing clefts. We have heard great things about the team at Primary Children's Medical Center and are happy that we are in good hands with them.

Monday, December 13, 2010

There and Back Again...




A NICU Tale of Daniel Ryan


NICU =  Newborn Intensive Care Unit

After spending his first hours of life in the NICU, Daniel returned there once more later that night. :( On my way to feed him in the nursery, Danny spit up a ton while lying on his back. Because his nose isn't separated from his mouth he was unable to breathe. I grabbed him and knocked on the nursery door, getting help from a nurse to quickly suction all the spit-up goo out with a bulb syringe so he could breathe. She called in the NICU team who hooked him up to monitors to see his heart rate, respiratory rate and oxygen saturation - which were not to their liking.

They rushed him away as I helplessly followed (Ryan had gone home earlier to get some sleep since we live just a few minutes from the hospital). It all happened so fast and I was confused as to why he needed intensive care exactly - but hey, my baby was unable to breathe just a few minutes before and was currently coughing and sputtering. I was too shocked to really ask any questions.

Daniel was in the NICU about ten days. At first he was hooked up to an I.V. and has a tube going down his throat to suction excess air. He had chest x-ryas taken to make sure he didn't breathe in any spit-up. After one night the tube in his mouth was removed so we could feed him, and after a couple of days, once his blood sugar level was satisfactory, the I.V. that gave him nutrition was removed as well.

They had to tape up and cover the I.V. because Danny kept pulling on it.




For the remainder of Daniel's stay he just had leads on to measure his heart rate, respiratory rate and oxygen saturation. It ended up being the oxygen saturation that gave us the most trouble. He would have little episodes where his oxygen saturation would drop for more than a minute and wouldn't go back up unless someone stimulated him. He needed to go two to three days without "destat-ing" before they would let him go home.

You can see the leads on his chest and foot that measure his vitals

Here are his vital signs. The green number is his heart rate, the white his respiratory rate and the blue number is his oxygen saturation. That is the number we were most concerned about. It kept dropping to 88 or below and sometimes wouldn't go back up without stimulation from a nurse


It was very frustrating having Daniel in the NICU for oxygen desaturation, since it seems that any baby could have the same problem, but you wouldn't know unless they were hooked up these monitors and leads. There were a couple of times where he was almost ready to go home, but then he would have another minor "episode" and we had to start the clock over again in counting 48-72 hours without a de-stat. Daniel seemed right as rain during most of his stay, but it is better to be safe rather than sorry. It would be super scary had we taken him home and then he stopped breathing or turned blue!

Daniel was also under the bili-light to help bring down his biliruben levels, which were never too high, but since he was in the NICU it was no trouble to put him under the lights just to be safe and make sure that jaundice wouldn't be a problem. At first he was just under the bili-light, but then the staff wrapped him in a photo-blanket instead since he hated being un-swaddled. :)

Here is the bili-ruben light


Daniel had cloth sunglasses taped on to protect his eyes :) 

You can see the photo-blanket glowing green underneath his normal blanket


The gray cord is attached to his photo-blanket/pad. I thought Daniel sometimes looked like a little glow worm with his blanket. Ryan and I also joked that it was a kryptonite blanket they put on Daniel to keep his super powers at bay and keep him from flying around the room, ha ha. :)


Besides these things, the stay at the NICU was pretty uneventful. I would spend the afternoons there feeding and holding Daniel, then Ryan and I would return there in the evenings to say hi and feed him once more if it was time for him to eat. Both his grandmas came to spend the day with Daniel and me, too. His grandpas also visited him while he was in intensive care. Yay for family visits!

At first Daniel was on a 3 hour schedule like the rest of the patients there - getting woken up, his diaper changed, and fed every three hours. But the last few days of his stay the nurses let him kinda make his own schedule. :) Daniel would always want to eat more often or sleep longer than 3 hours. He kept the nursing staff on their toes and they worked around his schedule and not the other way around. :)

Mommy feeding Daniel some dinner



Daddy kissing Danny's hand. It was always very emotional for both of us to leave him at night



Sleeping so peacefully



Daddy feeding Daniel dinner :)



He had a nice amount of hair when he was born. This is him only one day old.



One of Daniel's first "smiles!"

After ten days in the NICU Daniel was finally ready to come home. He may have had to stay a little longer, since he had only gone two days without having a de-stat episode and not three yet, but because it was the weekend there was a different doctor in charge. Dr. Liu was there when Daniel was first admitted and she was surprised he was still there. She saw that he had gone two days without his oxygen saturation dropping and promptly discharged us. YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!



All dressed in his own clothes, getting ready to leave!


Daddy was so happy


Mommy was, too



Family picture time!



We could finally be rid of our NICU hospital bracelets.
Daniel came home to us on Friday, November 12th



A view of a beautiful winter sunrise from our deck


It is hard to describe the emotions felt during this time, but having Daniel come home in time for my birthday was the best present I could have gotten.



Sunday, December 12, 2010

And Unto us a Daniel is Born!








Daniel Ryan Bickmore  
Born Wednesday, November 3rd 2010 at 10:48 AM. 
He weighed 8 lbs 7 oz and was 20 inches long!

Above is our first family photo - taken Friday November 12th, the day Daniel was discharged after spending 10 days in the NICU. Danny came home to us just in time for my birthday, which was the best birthday present I could have received! 

A bit about Labor...

I was induced at midnight on November 3rd because of a minor tear in the amniotic sac. Instead of getting an epidural, though, I used relaxation techniques from a program called Hypnobabies. However, I couldn't have done it without help from my wonderful Hubby and Doula who used counter pressure on my back and hips and supported me when things got  rough. I think the pitocin made things much more intense and difficult than they would have been otherwise. At one point the contractions were coming one right after another with hardly more than a few seconds between each one. UGH.

 I am not a very outspoken person most of the time and completely surprised myself by being very vocal as I brought Daniel into this world. As things became more and more intense my "ahh" sounds turned into tones, which then evolved into improvised music as I sang through each contraction! I have often related to people the power of music when I explain a little bit about music therapy, but this day I was able to experience it first hand like I never had before! Thinking back it seems a bit embarrassing, but I still marvel at how music was a great distraction for my brain and a wonderful outlet for the intensity of each contraction. Also, since music can communicate so much, by singing I was able to let those around me  know how long and intense each pressure wave using chord resolutions and dynamics. :)

Post Labor

Because Daniel would be born with some sort of cleft, the NICU team was present to make sure everything was ok with his breathing. Unfortunately it was a bit too snuffly for their liking so they whisked him off to the NICU just as soon as they could for monitoring. :(  However, it is better to be safe rather than sorry, but it was so very difficult to see him taken away after seeing him for just a few short moments. Gratefully, Ryan was able to be with Daniel the whole time so he wasn't alone.


Being Weighed




He didn't like the flash of the camera :)





Chilling in the NICU. We just LOVED all those wires...




He wasn't in the NICU too long that first day, but his mommy was so happy to finally be holding him!






All bundled up and so sleepy...





He opened his eyes for just a bit while hanging out in our room that first night





Baby Toes!






I just love those tiny, little feet!