Preston's Diagnosis

Subglottic stenosis

Thats right.  They tell me it is called congenital subglottic stenosis.  Basically what that means is that the cartilage that forms just below the vocal cords, called the cricoid cartilage, is supposed to be a round ring, for what purpose?  To hold the airway open I suppose.  Preston's coicoid cartilage is shaped more like a U allowing less air to move through his airway, and when he does try to move air (when he is sad or mad or coughing) he barks and sounds croupy. It means that when he gets sick and the airway becomes inflamed as is normal, his already narrow airway may make it difficult to breath.  The doctor classified it as somewhere between a 2 and a 3 in severity on a scale of 1 to 4, with 4 being completely closed.  We have been referred to a specialist who will determine if and when he will need surgical intervention.  I wish I had been able to get a copy of the scope photos.  They were pretty cool.  I will ask when we see the specialist. 

Tonight?

What are you doing tonight?  I've got my hands full.  Hilarious comedy provided by Preston and Kinsley!

"How do you do IT ALL?!?"

Almost as often as I get the question "are they triplets?" I get the question "How do you do IT ALL?"  All.  How do I do it ALL?

First off, I have help, SO MUCH help.  I have excellent friends and neighbors who would be at my house at a moments notice.  I have family who will drop everything to help, and my husband who shares my load everyday and night, doing more than his share to keep our house afloat.

But ALL? All the:  Diapering, changing, feeding, holding, cuddling, dishes, laundry, cleaning, dressing, listening, talking, time out, potty training, refereeing, hair, hair cuts, clipping nails, reading stories, kissing all the toes....  And all on very little sleep.

And so for everyone who looks at others and sees perfection and looks at themselves and sees only lacking, I will give you a rare look into my private home.  I say rare, because I try not to let anyone see, not because it is uncommon for our house to look like this.
 

Oh look at those piles! 

We had soup 2 DAYS AGO!

Please no judging...

Yes, the cabinets are open.

This is what I saw this morning
when I came down the hall.

How do I do it ALL?  Simple, I don't.  Just like anyone I set my priorities and write my lists.  Then I drink a coke and go to work.  I get the things done that are most important to me.  I do what I can do, and I let the rest go.  I do my best to not have guilt when I take a nap instead of vacuum the floor (but I usually cant see the floor, so that isn't super hard).

When it gets super hard I think of this poem:

Song for a Fifth Child  

by Ruth Hulburt Hamilton 

Mother, oh Mother, come shake out your cloth,Empty the dustpan, poison the moth,Hang out the washing and butter the bread,Sew on a button and make up a bed.Where is the mother whose house is so shocking?She’s up in the nursery, blissfully rocking. 

Oh, I’ve grown shiftless as Little Boy Blue(Lullaby, rockaby, lullaby loo).Dishes are waiting and bills are past due(Pat-a-cake, darling, and peek, peekaboo).The shopping’s not done and there’s nothing for stewAnd out in the yard there’s a hullabalooBut I’m playing Kanga and this is my Roo.Look! Aren’t her eyes the most wonderful hue?(Lullaby, rockaby, lullaby loo). 

The cleaning and scrubbing will wait till tomorrow,For children grow up, as I’ve learned to my sorrow.So quiet down, cobwebs. Dust go to sleep.I’m rocking my baby and babies don’t keep.

Then I can relax.  I look at my children and they are happy and healthy.  I see in their faces that what they want is my time, not a clean house.

See? Look at those piles in the background, 
and she is still so happy!

So when someone asks "how do you do IT ALL?" I wish they would be more specific.  How do I love my children? It's easy, I just do it all day everyday.  How do I do everything else? I don't, I couldn't possibly.  Not even with all the help I have had and continue to have.  

Plus it is easy for me to put things in perspective and know that one day I will have a clean house, one day I will have a quiet house.  There will be no fighting, no poop diaper smell, no food under the table, enough time for all the dishes and then some, no dirty foot prints on the floors and walls, all the beds will be made and the table will be cleared, maybe even have a table runner and some flowers.  When that day comes, I will look back through my memories to the noisy, dirty moments I get to experience right now and wish I could have them back.  I love my kids and I will take all the mess in the world if that means I can share a special moment with each of my children every day.

Ugh, I meant to post this yesterday, but since we have been home things have been a little busy.... Anyway, both babies were released! We are so happy to be back together. I will post pictures of the kids in the hospital soon I hope. They were both so cute in the little gowns.

Kinsley update, and Preston comes to stay

The RTU is desighned only for short stays of observation. They like to keep it under 24 hours, but can keep you as long as 48. When it was clear we were not going to be able to go home the doctor admitted Kinsley to the Infant Med/Surg floor. Can I just say, I LOVE our attending doctor. She is wonderful. We really are lucky because she is the head infant doctor in the hospital. We mostly see her residents and medical students, but they are all on her team. We have also seem the ENT. Here is where it gets difficult. I understand how so much of medicine is based on the opinion of the doctor. Here with the team approach there are several conflicting opinions. The ENT (who is not my favorite person) put Kinsley on some acid reflux in order to keep the acid from iritating her airway further. The attending stopped that after two days, then reinstated it when the ENT pushed for it. The attending wants Kinsley scoped yesterday to make sure there are not other problems that are not going to get better. The ENT is refusing to scope for another 4 days. The nurse thought Kinsley could use some oxygen to help her relax and not work so hard, called someone and got the order. Then she put on a nasal cannula and started oxygen. Not ten minutes later the resident doc came in and said "take the oxygen off, that is not a good idea.". However, all in all we are having a good experience.

Yesterday in the early hours of the morning Kinsley was really struggling. The nurse ended up calling the docs in twice before they gave her a dose of racemic epinephrine. It was scary and I would not have wanted to be home during her extremely labored breathing. Then when the doctors did the rounds again this morning the attending said if that happened again she would be more comfortable with Kinsley in the pediatric ICU or PICU. This news did not make me happy. Then I got more news. Jared was on his way to the ER with Preston, who was having difficulty breathing, and had had a terrible night of retractions and labored breathing. We had a couple hiccups, but the ER gave Preston some racemic epinephrine and admitted him to our room.

So now I have two babies in the room with me. After the treatment Preston has been doing great. He is still really loud when he is breathing, especially when he is asleep, but he is having very slight retractions if any, and doesn't seem to be struggling. Also he had kind of quit eating and he is back to eating. In fact today he wanted two full feeds only 2 hours apart. He normally takes them 4 hours apart. Kinsley is also doing fantastic.

After Preston was admitted Kinsley started to get really worked up. They called the doc and ordered the racemic epinefrin, but by the time they had it all ready Kinsley had finally calmed down and was breathing pretty well. It wasn't great, but it was under control. I got her to sleep and Preston to sleep and I took a nap. We all slept really well. When Kinsley woke up she was not laboring to breath almost at all. Her strider is lower pitched, which means some of the swelling has gone down. She is doing so well I'm becoming cautiously optimistic that she might be discharged tomorrow. She did get a little worked up and was struggling again, but we were able to control it with cool mist, and she is sleeping peacefully once more.

I also couldn't help it, and put the babies into the same crib. There are lots of wires to get tangled in, but the babies seem to enjoy the closeness. I'm sure it must be lonely for them to be here when they are used to so many others.


It is now 11 pm

We had a little breathing issue with Kinsley. She couldn't relax and was struggling hard to breath so we gave her the racemic epinefrin again. It worked wonders within ten min she was as quiet as she could be. But they won't release her until she can go at least 24 hours without needing it. Also her little fit woke Preston and now he isn't interested in sleeping. I hope we can get better soon. Tomorrow was supposed to be the 6 month wellness check up. I guess we won't make it. :)

Keep praying for us, I know it is helping.

Sweet Kinsley

We may be the only people who have ever taken a baby to the ER for the rhinovirus...

 Let me start at the beginning. First this is my disclaimer. I am not a medical expert, or even a medical novice. If I have misspelled or butchered any on the diagnosis or treatments I'm sorry.

Kinsley has always been a noisy breather, we figured she was just fat or had a minor anatomical problem she would outgrow. We recently took Preston to an ENT with some similar symptoms and the insurance was unwilling to pay for a scope to find out what the problem is. The reason they don't want to pay, is the procedure is rather simple, but is only done at Primary Children's Hospital with such young children. Primary Children's Hospital is out of network. So we figured if they wouldn't pay for Preston they wouldn't pay for Kinsley. I have been planing to discuss this with our pediatrician who we have a wellness visit to see on Wednesday.

Everything was going well. Kinsley seemed to be a little noisier than normal and I was just waiting out the storm to get her to the doctor. Then last Thursday night I was putting her to bed. She seemed to be struggling to breath just a bit. I unwrapped her and she fell right to sleep. I thought "good thing I'm seeing the doctor in 6 days, I will have to talk to him about this." I put her in the vibrating chair (she was not doing well when I lay her flat) and went to bed. I was awakened at 330 am Friday morning by what sounded like one of the babies vomiting. It was a cough followed by a gag. I got up to check and clean up whichever baby had vomited. I first checked Kira and Preston who were in the crib and they were both sleeping peacefully and dry. I leaned down to check Kinsley and noticed that she was really struggling to breath. She was also dry, but I picked her up and held her under her arms. Her eyes were closed, her skin was pail and clammy. In my half sleep state I thought "she can't breath." and then I said "Jared, she is having trouble breathing!" He immediately jumped out of bed, and was at my side. He took her into the living room where he tried to wake her from her daze. He then grabbed his stethoscope and listened to her lungs. She was still not responding well and struggling to breath. We called Jared's folks who came right over to watch our other children, and we headed up to Ogden Regonal Medical Center ER.

By the time we got to Ogden Regonal, she was doing well. Super noisy breathing, but she was smiling and playing with me. Half way there we almost turned around and went home. Once we got there they took us right back. They listened to her and watched her. It was a mystery. They gave her a breathing treatment called racemic epinephrine, and a dose of decadron, both steroids. Then we had a chest x-ray. Everything came back normal, the breathing treatment seemed to have helped maybe a little. She was still noisy and was having chest retractions, but she was not breathing so fast. We were discharged and decided to follow up with our pediatrician that day.

I called the pediatricians office and our normal ped was out of town until Monday. I thought about waiting but decided not to because we were headed into the weekend. I didn't want to end up in the ER again. We saw DR Hildebrand, who I really like. She listened and gave Kinsley another dose of decadron. She watched her and decided she thought it might be Laryngotracheal stenosis, which is a broad spectrum of problems that means basically that there is a narrowing or softening of some part of the larynx. In order to find out the exact problem we needed to see an ENT and get her scoped. (refer to our earlier problem with Preston.) we decided to have a fight with the insurance.

Because it was Friday afternoon I tried to call the ENT, but the office closed before I could schedule an appointment. Kinsley did relatively well Frday night and Saturday. I had a haunting feeling the issues were not over. She would not sleep because she could not relax. Her chest contractions were fluctuating between worse and better, her breathing noisy. All these things had not changed. But what could we do? Nothing until Monday morning. So we put the kids to bed. Before we settled down I had Jared film her breathing. We had a humidifier on her, and he gave her a blessing. We climbed into bed but I couldn't relax. I decided to check her. Before I got out of bed I could hear she was in more distress.

She started couching and choking. I pulled her out of the swing and sat her up right. She was so noisy and her chest retractions were so bad. I resolved I would just hold her and watch her until morning. Then I would switch with Jared so I could get some sleep. As I was sitting there holding my baby who was struggling to breath, Jared got up. He said "Well let's take her in." but what are they going to do? Where are we going to take her? The insurance only covers HCA facilities and there are not any in the valley that take children her age.

We decided to take her to St. Marks. That is where they were born, and would be a shorter ambulance ride to Primary's. We walked into St. Marks about 1:30am Sunday morning. They knew immediately they would transfer us. But they gave her another round of racemic epinephrine. This time it helped a ton. She relaxed and was breathing great. They did another chest x-ray. The nurse thought she might be a little dehydrated because she poked her twice and couldn't get an IV. They sent us out without one, and she still doesnt have one. By 2:30am we were loading into the ambulance. I got to ride along and Kinsley kept looking at me like she was a little frightened about where she was. Then she had a bad cough attack and vomited all that was left of her 11pm bottle from the night before. She was breathing hard before the ride was over.

At St. Marks trying for an IV

Kinsley in the ambulance.  It is not clear because the ambulance was bouncing all over the place!

We checked into Primary Children's ER, where they gave her another round of racemic epinephrine. She was finally quiet. Then she got another dose of decadron, which she threw up. They left us in that room until almost 6am. It was terrible. There were 3 chairs and a small sized gurney. No where to take a nap, and nowhere to put Kinsley. They wanted to monitor her but said they didn't have a bed in the Rapid Treatment Unit (they call it an observation room). Finally they moved us at 6am.

Sleeping Jared holding sleeping Kinsley in the ER

Now we are in the RTU. There is a large cage looking crib, a semi comfortable chair and a couch made into a bed. That is where Jared and I have been taking turns sleeping. The ENT came in and talked with us. He wants to scope her next week, hopefully after some of the swelling gets under control. He started her on acid reflux meds just to keep some acid from further iritating her throat. They did a virus check where they shoved a cotton swab up to her brain it seemed! And did another x-ray, this one of her throat. We finally have some answers. She came back positive for rhinovirus. Before you freak out realize that rhinovirus is the fancy way of saying she has the common cold. We took her to three different ERs and in an ambulance for a cold. Fantastic.

In the RTU

They also think she has what is called Tracheomalacia. This would be the underlying cause and why a simple thing has made her breathing so difficult. They could see in her throat x-ray that when she breaths out her treacia collapses on itself causing the noisy and difficult breathing. They will have to scope her for sure. Tracheomalacia is a sub category of Laryngotracheal stenosis, so we might be getting somewhere.

For now they want to hold us again overnight, just to watch her and probably give her another dose of racemic epinephrine. Then we have to wait out the rhinovirus before they can scope her and make a definitive diagnosis. If it is Tracheomalacia we will just have to monitor her until she outgrows it. There are things they can do, but not unless it is effecting her eating/gaining weight, or her breathing long term, not just while she has a cold.

In her crib cage in the RTU

Thank you to our friends and family who rushed to our aid and continue to help us everyday. You are the answers to my prayers.

Birthday Camping Adventure

For my birthday we decided to go camping with our little family.  Just Jared, me and the 5 kids.  We went to a little campground called Little deer creek campground, it is located in midway among the Wasatch Mountain State Park.  The campground was nice because it was so empty.  We were really the only people camping there.  The older kids loved it and played in the dirt the whole time.  Lincoln especially thought it was perfect.  He loved what he called the "white dirt," he found it in the fire pit.  We are at a stage in our lives where we are not having ground fires, so the fire pit was basically empty, and as soon as we got there the chard logs were quickly pulled out of the "white dirt" so the kids could dig.

At one point Lincoln and Katelyn were dumping dirt onto a stick that was taller than they were.  Katelyn ended up dumping a bucket full of ashes right on Lincoln's head, in his eyes, and mouth.  This was taken after I had done the initial wash of his mouth and eyes.  I then took him in and gave him a real shower.

Day two we went on a hike through Cascade Springs.  It really was just a walk around a series of pools that are at different levels and there are so many small waterfalls.  We loved it.  We didn't take a tripod, so the only photo we got with the whole family was taken by a bystander photographer and it didn't turn out great.  Oh well.  You can still see how we managed to cary all of our babies.

The only way we were really able to go camping with three 5 month old babies was two fold.  First, we had a tent trailer.  There was hot running water so we could make bottles without boiling water at 4 am.  The other thing we did was take these chairs.  They are my absolute favorite for my trio.  I use them all the time.  they recline and I can prop bottles and feed them, and they each have a toy ring that keeps them entertained for a few minutes while I have my hands full with something else.

We had a great time and I had a great birthday.  It was our first camping trip since the babies were born and it went better than I could have hoped for.  We did write a list with two dozen things we had left behind that would have been nice (like hand soap, towels, Katelyn's sandals, enough water bottles, etc...).  At least we didn't get scared away, which is good because we have a couple other camping trips lined up for next month.