Ellie's Voice

 When Ellie got her trach, one of the hardest things for me was the loss of her voice. She had a soft raspy voice that I loved and she had just started to occasionally coo, but once the trach was placed her voice fell silent. I'm finding that a lot of people don't understand why she cannot talk with her trach. So here's a quick little anatomy and physiology review. Vocal cords are soft tissue located at the top of the trachea. When air passes through the vocal cords they vibrate to make noise. Diagram A shows an airway with a trach in place. The thick black lines show how the air travels in and out of the lungs through the trach which makes it so no air passes through the vocal cords and therefore no noise is created. 

Our biggest concern and the question we asked over and over in the hospital was how would we know when Ellie needed something if she couldn't cry? Now let me clarify, she still cries, she just doesn't make any noise with her cry. We can easily tell when she is crying by looking at her. Her body tenses, her face scrunches up and her mouth goes into it's asymmetrical cry, but no noise. It's kind of like when a baby gets shots and they cry so hard they don't actually make any sound. We felt like we couldn't ever take our eyes off her. There was no worse feeling then when I was sitting next to her in the hospital reading a book while she was sleeping and then I would look up to see her arms flailing above her bright red face as she was silently screaming. How were we ever going to sleep again? The answer, we didn't. At least not for the first few weeks. You see, most trached patients get nursing hours where a home health nurse comes and spends the night with the patient so the parents can sleep. Some people even qualify for nurses during the day so they can go to the grocery store and other things like that. Well, our awesome insurance (said in my most sarcastic voice) will not provide even a single hour of nursing care for Ellie. So it's entirely up to us. We considered tying bells to her hands and feet so whenever she wiggled we would hear the bells and wake up. But ultimately, Scott and I just divided the night into shifts and one of us would stay in her room on Ellie duty while the other one slept for a couple hours and then we would switch. It was tough.

Pretty soon we started to recognize Ellie's new "voice". She always has a gurgly sound coming out of her trach that is caused by all of her secretions. Our ears have become trained to these sounds and can now tell if she's sleeping, awake, or crying just by listening to the degree of gurgling noise she is making. Basically the gurgling gets louder the harder she is breathing so it is quiet when she's sleeping, noisier when awake, and loud when crying. We still have to be in close proximity to hear these subtle noises, though. We also got a video monitor that has been invaluable. I can put her down for a nap and then just carry the monitor around with me and still be able to keep an eye on her. The only thing we hear through the monitor is if she is coughing or if her monitor is alarming, but the video is clear enough we can tell if she is crying by looking at her. We have finally gotten to a point where we are comfortable enough with Ellie's routine and signs that she is awake and needs something that we are actually able to try and get some sleep between all the suctioning, refilling her feeds and humidifier, monitor alarms, titrating oxygen, adjusting her trach mask temperature, along with all the normal baby nighttime wakings and needs. Some nights we get some sleep, other nights...not so much. One night I counted and I had to get up 20 times in 4 hours to do all the previously mentioned things. It's not always easy, but we feel like we have adapted enough that it actually feels doable most of the time now. The few times it has gotten to be too much my saint of a mother came and did a night shift with Ellie so we could get a full night's sleep.

The other hard part about Ellie not being able to make noise is she is not developing and learning how to use the muscles around her vocal cords that are vital for speech development. Remember how speech development is such a struggle for kids with 4p anyway? Add to that the huge obstacle of her trach and things aren't looking very promising for Ellie's speech. This is by far the thing I worry and think about the most with Ellie. I know it is going to be a long, hard, and frustrating road to get her talking. Right now Miles is at the funnest age where he is bursting with personality as he is constantly talking and saying new things. I can't help but smile and laugh at his expressions and enthusiasm with which he talks. The thought of not experiencing this with Ellie hurts so bad I can hardly bare it, so I try really hard not to think about it.

 A couple weeks ago we had an appointment with the ENT where he had Ellie try out a speaking valve for the first time. A speaking valve is a one-way valve that is put on the end of her trach that allows her to breath air in through her trach, but doesn't allow the air to come back out. This forces the air up around the trach and through her vocal cords. Diagram B shows how this works. As you can imagine, it takes quite a bit more effort to push the air out around the trach and so not everyone can tolerate wearing the speaking valve. They warned us that it is also very overwhelming for her because as soon as we put the valve on she is able to smell, taste, and hear her voice. That is sensory overload for a baby who hasn't experienced any of those senses in the last 2 months. I was hoping with all my heart she would be able to tolerate it so I could hear her sweet voice again.We put the valve on and it was like someone turned off the mute button on Ellie. She made a couple funny faces that were accompanied by little grunty breathing noises. Then she settled down and started calmly breathing. It was crazy hearing her breathe through her mouth and nose. I had forgotten about so many of the little noises that babies usually make. She started to cry a little and it was magical hearing a weak little voice come out of her.

Ellie with her speaking valve on

We now use the speaking valve on her a couple times a day and she will usually tolerate it for a couple of minutes. She's getting better at figuring out what to do with her tongue and how to control all the muscles in her throat and mouth that she doesn't usually have to worry about. We mostly just hear little cries, but we have gotten a couple laughs out of her that almost brought me to tears. There have been a few times where I felt like she was going to coo, but then she started coughing and gagging and I had to take the valve off. Someday I'll hear those sweet coos again. The big kids love hearing Ellie make noise. The minute Brynn and Mason walk in the door from school they ask if Ellie can wear her "talking nose".

Brynn laughing at a noise Ellie made

Their favorite thing is when she cries or coughs really hard and it shoots the valve off like a popped cork. They think that is the funniest trick that Ellie does. As Ellie learns to tolerate it better we will have her use it for longer periods of time, but for now we just enjoy the few moments we have of hearing Ellie's voice. 

Soccer

Another soccer season has come and gone and I had my usual love/hate relationship with it the whole time. I love seeing my kids get out, be active, and have fun. I hate three days a week being dedicated to practices and games. Juggling little ones and dinner time around to get to games takes a lot of effort and is stressful. But overall I still think it's worth all the hassle to give them the experience of being part of a team and learning new things.

This was our first year experiencing girls' soccer. It was the greatest. Ten happy giggling girls running around the field kicking a ball. When someone fell down half the girls would stop to make sure they were okay before continuing to play. Brynn's team were the Blue Peacocks. Brynn was at a bit of an advantage the first game as she was clearly one of the only girls who had spent the last two years playing against her brother in the backyard. All the other girls were still trying to figure out what exactly they were supposed to be doing as Brynn ran up and down the field scoring goal after goal after goal. By the next game more girls were getting the hang of it and Brynn had to work a little harder for her goals for the rest of the season. I could watch Brynn run around with a huge grin on her face all day long. After Brynn's game we would leave the world of smiling, giggling girls and would enter the world of crazy and aggressive boys.

This year Mason moved up to the 8 and under division. It's a whole new ball game with these big boys. They're bigger, faster, and much more aggressive. Most of the time Mason was the youngest one out there but he hung in there and was able to get a few goals during the season. The team never could quite decide what their team name should be so sometimes they were the Green Gators and other times they were the Green Hulks.

 Miles would come to the games and bring his own soccer ball to kick around. He loved running out on the field and kicking goals during water breaks, but loved doing it in the middle of the game even more. We definitely got our workout keeping up with him during the games. I think we're going to have to lie about his age or something because there is no way he is going to wait around for 3 more years to play soccer.

We've put away our cleats and shin guard until soccer starts again in the spring. Now to decide what to do for the next 6 months.

4p Noses

 When we first received Ellie's diagnosis of trisomy 4p we had so many questions and very few answers. Just as I was resigning to the fact that Ellie's life was going to be full of unanswered questions, I found a facebook group for families of children with trisomy 4p. There are 81 people in the group that represent 43 people with trisomy 4p ranging in age from Ellie to a 28-year-old. I was so excited. I had read every article I could find and knew about a lot of possible problems Ellie might face, but to be able to see pictures and talk with other parents who were dealing with it first hand was more than I had ever hoped for. When I checked out the group for the first time I was secretly hoping to see children who were leading perfectly "normal" lives, but as I started reading some of the conversations going on, my high hopes were shattered as I read about seizures, severe scoliosis, IEPs, medical tests and procedures, and assistive devices that fill these children's lives. I stopped reading. It was too much. I started just looking at the pictures instead. I was overcome with emotion as I realized that Ellie has the 4p nose. Some of these kids look more like Ellie than her own siblings do. After 3 months of feeling so alone and scared I was finally surrounded by a group of people who knew exactly what I was going through. I have grown to care so much for all of these people who I have never even met. I find my heart aching for their setbacks and celebrating their accomplishments right along side them. There is one little girl, Natalie, who I feel especially close to because she has had a lot of the same issues as Ellie and also required a trach.

 She was successfully decannulated almost a year ago when she was 2 1/2. She just started preschool and her mom reports that she is doing great. When I saw this picture of her walking down the hall on her first day of preschool with her older brother I wanted to print it out and hang it on my wall because I loved it so much. Can't you imagine this same scene playing out three years from now with Miles and Ellie? I can only hope for as much. Watching this sweet girl gives me hope for Ellie's future.

A lot of you have asked what Ellie's 4p means for the rest of her life. While all the children with 4p have different challenges and capabilites, there is a lot of overlap in their presentation. I've learned that some of the more common problems include feeding difficulties from an early age sometimes resulting in feeding tubes, difficulty walking with most kids not walking until they are 3-4 years old and requiring assistive devices and braces, speech delays with children ranging from non-verbal or non-conversational to being able to eventually talk, seizures that occur multiple times a day and are very difficult to get under control even with multiple medications, small size and stature, many orthopedic issues including severe scoliosis, prone to frequent respiratory infections, eye and vision problems, unexplained sleep issues, and dental issues like extra or missing teeth.
Reading that list of problems can definitely feel a little depressing and hopeless. But I want you to look up at every single one of those kids and notice that no matter what their development levels or medical conditions are they all have one thing in common. Every single one of them has a smile on their face. These children bring so much happiness and love to everyone around them.
Ellie is extremely interactive with us. She makes eye contact, smiles at us, tracks us around the room, and definitely knows and responds to our voices. She's a mama's girl and when she looks at me there isn't an ounce of doubt that she knows who I am and loves me.

That's all I need. Any other milestones she reaches along the way will just be a bonus. 

I am so grateful for all of our new friends and the help and support they provide as we try to figure out 4p.

Blessing Day

Today we were finally able to bless Ellie. In our church, we don't baptize babies. Children get baptized when they are eight years old (or any age after that for converts) and they are able to choose for themselves. But we do have baby blessings. Basically, an LDS baby blessing is where a man with the priesthood (usually the baby's father) officially gives the baby a name on the records of the church and a blessing. The baby is usually wearing white, and although a baby blessing is about more than the clothes they wear, there is often a lot of focus put on the blessing outfit. With that being said I have always loved the idea that a girl's blessing dress is the first of three white dresses she will wear in her life. The other two being when she is baptized and gets married in the temple. Sadly, I'm not sure if Ellie will ever have the chance to have either of those white dresses during her life so I really wanted her one and only white dress to be something special. I like it when a blessing dress represents more than just the latest trends and so I was planning on Ellie wearing the same dress my mom was blessed in as a baby (remember how Brynn wore the dress I was blessed in). But even at almost 4 months old the dress was way too big for Ellie. As a matter of fact, all the dresses I looked at were too big for her. So my amazing mom, who has a very special relationship with little Miss Ellie, offered to crochet a dress for her that would be just her size. The really amazing part is she decided to do this only 48 hours before Ellie's blessing day. We found the perfect pattern and two days later this was the finished product.

The closest thing to a smile she would give us during our photo shoot.

Words cannot describe what this little dress means to me. This is a very special dress for a very special little girl. It is simple yet amazingly beautiful and radiates the love that went into making it. The pictures don't even begin to capture how beautiful Ellie looked in her dress.

We blessed Ellie at home with just our immediate family rather than in church since we are still a little leery of taking her around a lot of people. Scott gave Ellie a very sweet and tender blessing that only a father could give. It was a wonderful day for Ellie.

The Fam

Grandma Nancy and Grandpa Val

Pooky and Papa

Hale cousins. AZ cousins skyped in for the party.

Grandma Linda and Grandpa Mike

Mama and her girl.

Mom and Dad

New Beginnings

It's time for the obligatory back to school post.

Mason, the first grader.

So far Mason is loving first grade. He is thrilled to be in Mrs. Nelson's class since "she is the nicest first grade teacher". The things he was looking forward to the most about going to first grade all day were eating lunch at school and having three recesses. It's been a big adjustment for all of us having Mason gone all day, but it is fun to see all that he is learning while he's gone.

Sporting his Lego Chima backpack.

Brynn, the 2nd year preschooler.

The two weeks between when Mason started school and Brynn started preschool were the most painful weeks of Brynn's life. She missed Mason so much and just couldn't wait to get back to Mrs. Young's class. The day finally arrived and she was so excited!

With Mason gone all day Brynn has promoted Miles from nuisance to playmate. He follows her around all day doing and saying anything she tells him to. He loves getting all of her attention and she loves bossing him around so it works out perfectly.

 Brynn, Miles, and I were able to sneak in a little outing to the splash pad one day, but I had to give Brynn strict instructions not to tell Mason about it because just that morning he had informed us we weren't allowed to go do fun things while he was at school because that wouldn't be fair. Sorry dude!

These two had so much fun running around playing together. I kept having flashbacks to two years ago when it was just Mason, Brynn, and me going on fun outings every day.

Ellie started her own kind of school last week. She started occupational therapy with Kids on the Move. One of the first things we are working on is her clenched hands. She now gets to sport these super cool braces on her hands to help bring her thumbs out. It's fun to see how much more she is opening and using her hands already.

A side by side comparison to show how the braces help her thumbs.

It should be a great school year!!

Family Swim

Ellie joined us for her first family outing at a fun Labor Day BBQ and swim party with our cousins, the Jenkins. Don't let her face fool you, she loved her first swim...or at least she didn't hate it.

This is what our summer was supposed to look like!! Better late than never.

Just for fun I threw in some pictures of all the kiddo's first time swimming.

Top Left: Mason 2 months old   

Top Right: Brynn 3 weeks old

Bottom Middle: Miles 5 months old

Bottom Left and Right: Ellie 3 1/2 months