Wednesday, February 9, 2011

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 e
nded 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!


9 comments:

Krystal said...

I'm really glad to be filled in on everything. We'll be thinking of you guys and praying that Kenley's health just keeps improving.

Val Murphy said...

Sorry again things have been so rough...I totally know how hard it is to watch people hurt your baby...everybody just tells me "they wont remember it" but it still doesn't make it easy. You are an awesome mommy, cute little Kenley is adorable. Hoping/praying for the best for you guys! See you tomorrow night I hope :)

Amber said...

Keri....oh I am so sorry for you and Kenley! I know how helpless you can feel when the drs and nurses are doing all the stuff to these tiny babies. (jase was in the NICU for a week.) Im glad the Drs are on top of everything and catching anything that could be bad.

Contgratulations on the new little one and our prayers are with you guys! She is so beautiful!

Megan said...

I can't even imagine! I'm so sorry! Cayson had tons of problems when he was born and there were many a nurse that I had to leave the room to refrain from killing them. It's hard to be the mommy when you can't do anything to fix it for them. I'll keep praying for you guys! Prayers, priesthood blessings, and lots of love can make miracles happen!

Deb and Stan said...

Yeah....I'da punched her!

FrankandAsh said...

wow that is awful! I can't imagine the roller coaster you guys have been on. And what the heck a second parent bed, did they really get mad at you? Thank goodness for the power of the Priesthood. I hope the results are good and that she doesn't have to have the surgery.

Bryan and Sarah said...

I'm so sorry that you and Kenley have had to go through this. Hanging out at the hospital and doing tests is so crappy. We'll keep praying for you. We'll especially pray that Kenley won't have to have surgery.

Nimo said...

So sad to see all that your little girl has been through. Praying for the best, always! Children and parents are resilient. Hang in there!

KAT said...

Oh Keri...what a ride you guys have had with this sweet little baby girl!! And i feel so bad she has gone through so much in such a short time!! You guys are such strong people and little Kenley is a little fighter!! I'm glad the surgery went well. We keep you in our prayers and we luv ya!!