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Friday, June 24, 2011

Maybe no more glasses in our future?

Caelyn had her eye appointment yesterday and he said that she is doing great. He was very pleased with her progress and said that in the future she may outgrow her need for glasses. He said to watch for things like her constantly taking her glasses off and still doing fine without them. That would be so great for her, though at the time being she is perfectly content with wearing them.

She is doing great today and she has such a funny personality. She is so stubborn and strong-willed and she has quite the temper (I wonder where she gets that from haha)! If you talk to her and say something she doesn't like, she will always roll her eyes at you. She also shakes her head "no" all the time! If she really wants to let you know she not happy we have caught her a few times saying "uh-uh". Its so funny and too cute!! If she really is not interested in what is going on she will turn her head and close her eyes. I think she thinks that if she can't see us, we can't see her. Her favorite time to test out this trick is therapy...it doesn't work. Her therapists all say she is going to make a great actress someday!

Wednesday, June 22, 2011

After her surgery to now..and some good news!

Caelyn has been doing great! She has been doing awesome with therapy and making progress like crazy! She got the okay to resume oral feedings back in November and it has been a constant struggle. Caelyn is very orally adversive and struggles with eating textures. Its still something we fight with on a daily basis. Though, we are fully comfortable now with tube feeding we are beginning to realize that that is not the case for a lot of people. Now that it is summer and we are out and about doing things we are beginning to notice that people often stare at Caelyn and while at the zoo a little boy told his mom, "mommy, that baby is weird." It makes me sad that Caelyn will have to struggle with these types of things her whole life. Now we just just try and educate people about tube feeding and that it is normal. Some kids eat by bottles, others a spoon...ours eats by a tube. No big deal =)




Caelyn went to an eye appointment in early February. They discovered that she was very far-sighted and that one eye was stronger than the other and that was why she holding her head to the side. We had to special order frames from a company that makes glasses for special needs children and we finally found some that fit! Here she is in her first pai of glasses:



Shortly after, Caelyn had a follow-up appointment with her Ear, Nose, and Throat doctor and a hearing exam. Right now, they classify her as having borderline normal hearing. It is something that we are keeping an eye on. She has to have hearing tests every 6 months. Her doctor then discussed capping with us. He said that he felt that Caelyn would be able to begin capping. Capping is basically closing off the trach so that she is able to breathe on her own. She has done so great on it! Within 3 days she was wearing the cap for 12 hours a day with no issues!! Her doctors would like to see her do one more winter with the trach and then they are hopeful that she would be able to get rid of the trach next summer.

Last Thursday we have hit a snag in the road. Caelyn seemed like she was having a really hard time breathing and her lips were turning kind of blue. I hooked her up to her machine and her oxygen saturation levels were only 79%!! Scary!! I took her cap off and she was fine. So I put her speaking valve on and she was fine. Weird. So she was having some sort of difficulty breathing on her own. I made an appointment with her doctor and the earliest they could see her was Tuesday. Yesterday was her appointment and he said that she has a lot of scar tissue on the inside of her trachea that was building up. He also said that she had a superficial infection at her stoma site. She is on a 10day course of antibiotics and he is hoping that once the inflammation goes down she will be able to breathe on her own well again. She has to go back to see him on July 21st and at that time we will evaluate our options. If she is not doing any better and unable to wear her cap, she will have to have surgery to remove  the scar tissue. If she is doing well and we are able to, we are going hold off on the surgery for a few months because her doctor is hoping that we might be able to just get rid of the trach all together! We are so excited!! That would be such a big moment in all of our lives if we could get rid of the trach! Here's to hoping for good news in a month!

The Day Our Lives Changed

We were finally able to take Caelyn home and she was doing great! We were adjusting well to the tube feedings and  they seemed to be going good. After just two short weeks at home, Caelyn starting having increased work of breathing and she seemed like she was having a really hard  time. I took her into her peditrician who hooked her up to a pulse oximeter machine and found out her oxygen saturation was only 88%. He recommended that we give her albuterol nebulizer treatments every 4 hours and come back in two days to see if things were improving. Well, I didn't think they were and when we went back it was confirmed that they weren't. Her oxygen saturation was still pretty low and she was having a really difficult time in breathing. Her peditrician recommended that we check back into Rainbow Babies.

They admitted her and right away her oxygen kept dipping into the low 80s. They put her on oxygen and I was so confused. I didnt understand what was going on. She was just fine 2 weeks ago. Why was this happening? We were on the 6th floor for about 3 days with Caelyn on oxygen trying to figure out what was going on.


At the end of the third day, some doctors from pulmonary came to talk with me. They said they felt it would be better if Caelyn went downstairs because they would be able to watch her closer down there and give her more one-on-one attention. I didn't know at the time, but by downstairs they meant the PICU. Man, that was scary having my baby in the PICU and no knowing what was going on or if she would be okay. We were in the PICU for two months. In the course of these two months, Caelyn went apneatic on multiple occasions and would constantly desaturate; sometimes all the way down to 13%. They finally came to me and said that they thought the best decision for Caelyn would be a tracheostomy and a gastric tube. I was shocked. I couldn't understand. Caelyn was just fine two weeks ago, and now they have no idea what is wrong with her, but they want to do life changing surgery?? We thought, prayed and debated for a long time but they were trying to rush us because they said that Caelyn really needed this to be okay. So we finally decided to go ahead with it and on September 30, 2010 Caelyn had her surgery. Our life was changed forever. Caelyn now requires 24/7 care and she cannot go anywhere with me, my husband, or her nurse.



I was so relieved to see her after surgery, but all I could do was cry. She looked so pitiful! I was also feeling sad about how her life was going to be from this point on. Then we had some lighter moments. Cory and I just had to chuckle at Caelyn because they had her on morphine. When she woke up her eyes would be spacy and she was would have this look on her face like she didn't have a care in the world. It was pretty comical. She recovered very well and she was off of the ventilator later that night. She did amazingly well with her recovery and her development seemed to improve by leaps and bounds. She hit a small bump in the road however when she got a sore around g-tube site which turned into MRSA. It was really painful for her, and we had hold off on her PT for a little while.



After a long 2 month wait we were finally able to out of the PICU and Caelyn headed upstairs to the 5th floor. We had to stay here for another couple of weeks while Cory and I both went through extensive training in how to care for Caelyn and all of her needs. While we were here Caelyn met some incredible therapists that helped her tremendously. Then the day finally came when we were able to go home. We were so happy, excited, anxious, and nervous all at the same time! This is when they set Caelyn up with home nursing. This has helped us so much! They watch Caelyn overnight so that we are able to sleep. I know it doesn't seem like much to them, but it makes a world of difference to me not to have to wake up with Caelyn 10 times a night and then take care of her all day long.

Over the next couple of months, Caelyn would be in and out of the hospital 3 times dues tracheaitis and bronchitis/pneumonia. She spent her first Halloween in Rainbow.


Caelyn is doing great now and is making great progress in therapy!

More Testing...

That first hospitalization we ended up being admitted for 2 weeks because the doctors felt while she was there she should see the specialist that she needed to see since we live a distance away from the hospital. Opthomology came and examined her and gave her the all clear, but I was not convinced. She also received PT, OT, and speech everyday while she was in the hospital and they recommended that we continue upon discharge. Therapy has made a world of difference for Caelyn!! At this time, PT expressed concerns that Caelyn's hands were always "fisted". They thought she might have "trigger thumbs" so they wrote up an order form for hands splints for Caelyn. At first I felt bad that she would have to wear them, and I thought "great. another thing for people to stare at. Poo Caelyn." I couldn't have been more wrong! They have helped her hand flexibility tremendously and after 3 short months, she no longer needs them!

She also saw neurology that day, and that is when our perception of Caelyn leading a healthy "normal" life was shattered. They came and saw Caelyn at her bedside and noticed that she was very hypotonic. She was like a wet noodle. She had very little muscle tone. They felt at this time, it would be valuable for them to do an MRI. Her MRI was scheduled for the next afternoon. I was so nervous because they told me that she had to be sedated. So that night they put the IV in. I felt so bad for her! She was not allowed to eat after midnight as her test was scheduled for the next day at noon. They next day came and they did not get her in until close to 5 pm!! Poor Caelyn was so irritable and starving!!

So finally the day came when she was able to come home and just as we were packing up and getting ready to have out Caelyn's neurologist came to discuss the results of her MRI with us. I can still remember the exact conversation like it was yesterday, though at the time I think I was in a daze. She informed us that Caelyn has a small cerebellar volume with some ventricular loss. So basically she has a small brain and a small cerebellum. She then went on to explain that the cerebellum was responsible for balance, coordination, and expressive language. She also said that they are finding more and more things that are connected to the cerebellum every day so it might have more of an impact of Caelyn in the long run than what we realized. I was just trying to process what all of this meant for Caelyn and for us, when she started the conversation again. This time it was to inform us that this is what was causing Caelyn's dysphagia (eating/swallowing difficulty), her muscle tone issues, and most likely Caelyn would never walk. What?? What did she just say?? My sweet little baby might never walk?? I was in complete shock. I couldn't believe it. How was this fair? What a minute...what did she just say? Caelyn may never talk either because the cerebellum is responsible for expressive language. I thanked her and we left. We were silent pretty much the whole way home. How could my sweet Caelyn never be able to walk or talk? My mind was racing...

The Long Road Ahead

Little did we know that that first day at Rainbow Babies hospital would be the beginning of a very long road. Her first appointment was with ENT. They did a scope that day in the office and found that although her airways were smaller than normal and sort of "smushed" that they were normal. They also did a hearing test which Caelyn of course failed. They scheduled her for a barium swallow study the following week.

In the mean time, we met with Caelyn's geneticist. She got the results of Caelyn's blood work which all came back normal. Her geneticists are at a loss. They suggested I follow up with all the specialists to get a full work-up on Caelyn hoping that this might give us some clues at to what is going on. So we left that day and made all of our follow up appointments. We were able to get into cardiology right away. They found out that she had a PFO, which I was told was okay and that they weren't concerned. They want to see her back when she is around 6 for a follow-up to make sure it is closed. We also got an ultrasound of her kidneys which came back normal. Thank God!!

This same week, Caelyn began Help Me Grow. This program has been great. They hooked us up with Early Intervention which has been an amazing thing for Caelyn. We went for her initial assessment and we found out that Caelyn was developmentally delayed in all areas (which we already suspected, but suspecting and confirming are two different things). They made a plan with goals for her to work on.

This brought us up to the time for Caelyn's swallow study. They took her back to radiation and only one of us could go back with her because we also had our 2 year old and she was not allowed back there. In the next 5 minutes, our lives would change forever. They started feeding Caelyn and within 2 minutes they immediately stopped the test. They took me outside and informed that Caelyn was aspirating everything that she was eating and that something had to be done right away. Boy, was I shocked when they said that "something" was Caelyn had to be hospitalized to get an NG tube and Cory and I would have to go through training before she would be released home. This was probably one of the hardest moments for us. We thought we were just going for a test, and now not only were we not going to be able to take Caelyn home with us but now she can no longer eat by mouth and we will have to learn how to tube feed her. This added a big burden to her care. We were a little overwhelmed. I just felt so bad for her. So was so little, innocent, and helpless!

New Beginnings

I have decided to start this blog not only for a friends and family to have a place to follow up on Caelyn's life, but also to share Caelyn's story with the anyone who is interested. Throughout this journey we have had no one to look to for support, but hopefully we will be able to provide that to someone else.

To start from the beginning, my pregnancy was a normal one. Caelyn Paige was born on April 12, 2010 at 10:48am, weighing in at 6lbs 1oz and 19.5 inches long. Right after her birth, she just wasn't breathing correctly. They let me visit with her for a few minutes then took her to the nursery because they said she was being a "lazy breather". This was a very scary time for my husband and I as we were unsure as to what was going on with her. They brought her back to us an hour later and everything seemed to be going great. Caelyn's peditrician came in to talk to us and informed us that Caelyn has a high arched palate and that he would recommend seeing a geneticist because of her facial features he thought she might have some sort of genetic syndrome.


When it was time to leave the hospital we were informed that we had to come back in a few days because Caelyn still had not passed her newborn hearing screen and she also had jaundice that they wanted to recheck. When we went to follow up her jaundice was resolving itself, but she was still unable to pass a hearing screen. That said that sometimes this is caused by fluid in the ears and they wanted to see us back in 2 weeks. We went back two weeks later and she was still unable to pass, so at that time we were referred to an ENT doctor. We went to see the ENT and they could not get her to pass a hearing test either and he informed that they would wait until she was 2 years old to insert ear tubes and I didn't agree with it at all so we decided to seek a second opinion.

During this whole time, Caelyn was having a lot of difficulty in eating. She was a very noisy breather and she was gasping for air when she ate. I took her to see her peditrician and he said that I had a too fast flowing nipple (which wasn't true) and that it was normal. So once again, I went searching for someone who would believe me. We ended up seeing to ENT at WVU. Once again, she failed her hearing screen. This time they decided they wanted to sedate her for an ABR and they would do a scope of her nose at the same time. She was unable to get in for 7 months.

This is when we made our decision to move back to Ohio. I knew that there were doctors there that I knew and I trusted and that would listen to us. As soon as we moved back, we set up an appointment with our girls' peditrician. Her immediately set us up with an appointment with an ENT and geneticist at Rainbow Babies and Childrens Hospital in Cleveland. And that is when our journey truly began...