Kenley's surgery

Well, we got the call back from the Doctor on Kenley's sleep study results, and it wasn't what we were hoping or expecting to hear!
It turns out she has severe sleep apnea and her oxygen levels dropped into the 70's multiple times throughout the night. So scary!
So, the Doctor immediately put in an order for her to be on oxygen at home and then scheduled her to have surgery a couple days later. Lets just say that after hearing her results, neither my hubby or I got much sleep, if any, the next couple of nights!
So, Friday morning we took her back up to Primary's for her surgery! It's so scary knowing that your 7 week old baby is going under the knife! Luckily, Primary's has the BEST doctors around so it made us feel a lot better about the whole thing!
Her surgery only took about 30 minutes and the Doctor said everything went great. He was able to trim off the extra skin that was causing the obstruction and he also looked clear down into her lungs to make sure there wasn't anything going on in there.
We stayed over night so they could observe her and honestly, it was a lot easier than I was thinking it was going to be. She did seem a little uncomfortable for the first few hours after but then it didn't seem to bother her.
We've been home for 4 days now and as far as I can tell, it has helped. She still has sleep apnea but the Doctor said that there could be some swelling that is causing it. Although, she will probably still have some sleep apnea for a while, it shouldn't be nearly as bad as it was. Oh, and to make me feel a little more at ease, I purchased one of these neat little things!!It attaches to her diaper and it actually detects her breathing. If there is no movement for 15 seconds, it vibrates to stimulate her. If there is still no movement for 5 more seconds, it sounds off a very loud alarm! It's pretty dang cool! I wish I would have had it with all my kids! What parent doesn't worry if their newborn is breathing when they're asleep?? I know I am a freak about it!
Last night we did another overnight monitoring of her oxygen, this time at home! (thank heavens) It's supposed to record so the doctor can see how she is doing on room air. Unfortunately, the equipment they brought us isn't the best! The monitor would fall off her toe with little movement and then at one point, it just died. So, I'm hoping they got enough readings to tell if she still needs to be on oxygen. We're hoping and praying she doesn't! Trying to keep a nasal cannula on a baby is almost impossible!
We also have had a family trip planned to Disneyland for a while now. At first, I didn't think there was any way we would be able to go but the Doctor says it should be no problem. It actually could be better to get her out of this RSV infested state and into some warm weather. Worst case, we might have to take a few tanks of oxygen to give her at night. I am a little worried to be that far away from our doctors but if you know me, you know I would NEVER put her at risk. And if the Doctors showed any sign of hesitation about us taking her, our trip would be rescheduled in a heartbeat! (Sorry if it sounds like I'm explaining myself, but I don't want people to judge me or think I'm a bad mom for taking her on this trip.)
Anyway, we're hoping that this will be our last visits up to Primary's. Even though it's an amazing hospital, it doesn't mean I like to be there!
Thank you all again for your prayers and support! We couldn't have made it through this without it!

Kenley with her cannula *aka* her worst enemy

Her super cool oxygen machine Getting all dressed up her her hospital clothesif she only knew what was comingtaking a little snooze before the big procedure just out of surgery and daddy having a little too much fun with the oxygenher first meal after surgery she wasn't too fond of her IV eitherthis cute little beaver was painted on the ceiling and she LOVED to stare at it. Home and HAPPY!

Most of you know that our little Kenley has been through a lot in her little life. This post is mostly for my sake so if you're tired of hearing about it, I won't feel bad if you don't read on!

It all started at her 2 week check up when the Doctor heard a murmur. It's pretty common for babies to have murmurs but they usually go away within the first week of life. Not only did he hear it but it sounded different from the "normal" kind of murmurs. I kind of new something wasn't right cause he took an extra long time listening. He told me what he thought and called his partner in to confirm what he had heard. The other Doctor also took a LONG listen and they starting talking in medical terms. I was lost! They told me they were concerned and that I needed to go straight up to Primaries so she could get an x-ray of her heart. So, we did! As soon as we walked in the door the phone was ringing. It was the Doctor. He explained that the x-ray showed that her heart looked enlarged and that the Cardiologist wanted her to come back ASAP for an echo-cardiogram. I wasn't too worried up until now! So, they got her an appointment and we took her back up for more tests! Not before Preston and my dad gave her a beautiful priesthood blessing of course!
When we arrived, we found out that the echo would take 45 minutes or longer! Are you kidding me? My 4 week old has to lay still for 45 minutes while some guy does an ultra sound of her chest?! Well, she did and she did awesome! Watching the screen of my tiny baby's heart was not easy! You realize just how fragile these little bodies are.
After the test was finished, we met with the Cardiologist. She explained that her heart actually wasn't enlarged but she did have the murmur. She said that right now it's small enough that they weren't too worried about it but they want to follow up in 6 months to make sure it's not putting any extra strain on the other side of her heart! Phew! Glad that's over!
Note: while we were talking with the Cardiologist, we were feeding Kenley and she got this concerned look on her face and asked if she was always that noisy while she ate! That brings us to our next journey!
Kenley has always been pretty squeaky, we just always thought she was a "noisy" baby. I don't know if it's because she was awake more or if I just became more aware of it but her noises were becoming more like wheezes and seemed as if she was struggling to get her breath. So, I called the pediatrician and told the nurse what was going on. She suggested that I bring her so they could take a listen to her breathing!
I took her in later that day and as soon as the Doctor walked in he just stood there and listened. He listed to her lungs and said that they sounded perfect. He sat her up and watched her little chest as it worked extra hard while she was breathing. He said that the sound she was making was called Strider and that there was most likely some sort of blockage in her airway. He told me that I needed to take her straight up to the ER at Primaries and that he would call them to let them know we were on our way! Again...SCARY!
So, we pawned off the kiddos to my heaven sent mother and headed straight up! They took us back and hooked her up so they could read her oxygen levels. While we were there, her oxygen dipped a few times so they decided to admit her to monitor her more. During the night, her oxygen dipped a few more times so in the morning they had the ENT come and do a scope of her throat! NOT FUN! It confirmed that she had Laryngomalacia -(Laryngomalacia (literally, "soft larynx") is a very common condition of infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction. It can also be seen in older patients, especially those with neuromuscular conditions resulting in weakness of the muscles of the throat. However, the infantile form is much more common.)
Apparently, this is also pretty common! The ENT, however, thought that since her oxygen levels had dipped that many times, that it would be best if she had a sleep study to get more accurate readings. They wanted her to stay that night to have it done but it was a weekend and apparently they don't do them on the weekend. (We were actually happy about this since there was only one chair/bed that was made for "skinny" people. The 2 of us trying to squeeze together on this "bed" was not pretty!) So, I called first thing Monday morning to schedule her an appointment and they told me that they were booked out until March! Okay, I was under the impression that they wanted it done ASAP so I called the ENT and asked him if he thought it was ok to wait that long. He said no way and called the sleep lab. They called back Tuesday morning and got us in that night. (last night)
Let me just tell you, nobody should have to go through that, especially a 6 week old baby! It was a nightmare! She had to be hooked up to so many wires it took over 30 minutes just on her head! She was not happy and with the Laryngomalacia, when she cries, she has a hard time breathing. So, she would cry and then have to stop just to catch her breath. It broke my heart to see her like that! At one point, I wanted to punch the tech and tell her to freaken back off! I seriously almost told her to unhook her and be done. Luckily for her, I kept my cool and let her finish her job. =)
Kenley wasn't having it and of course couldn't fall asleep. I ended up holding her the entire night patting her and humming so she could sleep. Thankfully she was able to sleep a solid 4 hours before her cannula came out and the nurse had to wake her up to put it back in! We were there a total of 10 hours and I think she said they were able to get 5 hours of readings! To make things worse (for me) there was no TV in the room, my phone didn't get service at all, there was no rocking chair so I had to sit on the side of the bed to rock her, there was a camera 8 feet from my face, and all I had to look at was the walls around me and a sink. Oh, and there were so many wires coming out of Kenley that I couldn't even burp or change her diaper with out getting tangled up! Okay, I feel better now! I'm just thankful that it's over and we made it home alive! It's a little scary driving on NO sleep!
Now, we just have to wait for the results. If it's not restricting her oxygen too much then they'll just wait and see if she grows out of it. If it is restricting it then they'll have to do surgery to remove the extra cartilage which I guess is a pretty risky surgery since there's a chance of permanently damaging her vocal cords! So, pray that she won't have to have surgery!
Hopefully this will be the last of our little adventure! So far, in the 6 weeks of Kenley's life, she's had an X-ray of her heart, an x-ray of her throat, a 45 minute echo-cardiogram, a tube down her throat, 2 nights up at Primaries, and has been hooked up to a bajillion wires! Poor girl! And she's still the best baby ever!
Thanks to everyone who has called or sent messages! We're so grateful for all the support we have! And especially thank you for your prayers! That's what we are needing most of right now!

Our first stay up at Primaries

Our luxurious sleeping quarters
(yes, Preston eventually ended up on the floor but only until we got in trouble for making a 2nd "parent bed"! Give me a break!

Getting hooked up! Not a happy girl!
Seriously, can you see why I wanted to punch that girl?

All I have to say is, thank heavens for family and PEPSI!