June 21, 2016

Let's Get This Ball Rolling

Mama bear had to come out full force this week.

We've had to push for the past few weeks to get things rolling along for Aiden. Everyone in the NICU has always agreed that he will need a trach. David and I have been on board and very anxious for this to happen. It's a light at the end of the tunnel, and more of a chance he'll get to come home. So the minute he was showing signs of being stable and on the ideal vent settings, we started asking what needed to be done to make it happen.

The moment we opened our mouth about it, it became a game to get viable information from anyone. Although there has been nothing but talk of a tracheostomy since his birth, everyone suddenly didn't know what to do about it. David and I ended up feeling like we were babysitting.

We knew what doctor we wanted to perform the surgery. There is a specific one that has worked on the small handful of other children with Aiden's same diagnosis in Utah. Any surgery, and especially general anesthesia, is very tricky on a person with any type of skeletal dysplasia. There are some pretty scary precautions. A wiff too much of anesthesia could send a little person into cardiac arrest. The collagen gene mutation causes their airways to be soft, and therefore very easy to puncture. So finding an ENT, General Surgeon, and Anesthesiologist with experience on operating on children with dwarfism is worth its weight in gold. And naturally, we refuse anyone but these doctors to come near our child.

I can't tell you how many times and how many people I told this to. But each time I gave them that list of doctors, the NP would go consult with another doctor. And each doctor didn't want to do the trach because he wasn't comfortable operating on a child like Aiden.

Three times this happened with a specific NP. On the third time the NP came back to me, said she had talked to an ENT that was on vacation so he said he wouldn't do it anytime soon. And the NP wasn't sure when he would be back from vacation, so we would have to discuss the trach at another time. I was flabbergasted and dumbfounded. The logic escapes my mind - even if I didn't request a specific doctor, why would you come back and tell me that?

I'm nice enough that I felt bad afterwards, but I got real snarky with that NP. I questioned her as to why the doctor I requested wasn't consulted yet. And said I refused to have anyone but those doctors operate on my child, and I wanted her to go talk to those doctors right now and then get back to me.

Finally they talked to who I wanted. And guess what? This doctor said a trach wouldn't be an issue and he could get us in in a few days. And now we are officially on the schedule for a trach and g-tube this Thursday. Bam.


I've had many family members and friends question if this is really the right decision for him. I know they mean well, but when it comes down to it, why does it matter? He is going to need long term respiratory support - and that's OK! It's not permanent, and there are much worse things to go through. And the best part is he can be a normal baby (within his realm of normal, of course). Yes it's not an ideal situation for any child. But if this means he can live, then I'll take it. And one day he'll have an awesome scar he can show off to his friends.

Also, ending note, this means I will get to see my baby without tape on his face for the first time. I can't wait to see and kiss that upper lip all over.

June 15, 2016

Crossing The Biggest Milestone: A 3 Month Tribute

We have come across a very big milestone in Aiden's life.

During one of our many visits to Maternal Fetal Medicine while I was pregnant, we had a conversation with one of the doctors that has been sticking in the back of my mind since Aiden's birth. After a two and a half hour, extensive ultrasound, I tearfully sat through another conversation about how his diagnosis was "lethal" and we should consider terminating him. But this particular day was a little different. It was a new doctor this time, much younger and much more sympathetic to our situation. As she went over the diagnosis for Aiden and we once again heard the words "on average lives for three hours"; she followed it by saying, "in some rare instances they can live up to three months of age. But not very often, and those three months are very rocky and they usually go downhill and deteriorate quickly."

As I said before, and as I'm sure you could imagine, that sentence has been stuck in my mind ever since it came from the doctor's mouth.

I cannot tell you how many times I have thought and wondered if he was only going to make it to three months of age. We have had many scary days that seemed like he was following that path precisely. In his earlier days, I have seem him turn black as his heart rate plummeted a dozen times. And each time a tiny thought would enter my mind of, "Could this be it? Is he one of the few to make it to three months?" I almost lost him that weekend when he was having heart failure and his lungs collapsed, and I pleaded with Heavenly Father to let him get past that three month marker. I have seen him in a medical coma, his body not even breathing on its own and in such a deep sleep he appeared to be gone. I've clutched his little hand during these moments, whispering to him to "keep going". Even on his good days the thought of 'three months' has weighed on my mind, but I've never wanted to admit that number out loud. I'm not superstitious, but I almost felt like I would jinx things and saying it out loud would unravel all the progress we have made.

Three months ago today my Clive Aiden was born. And he's once again proven doctors wrong.

I don't know if I could ever adequately describe how proud I am of this little boy. It almost seems a little silly to be so boastful about an infant, but he has accomplished more in his little life than anyone I know. And he has taught me more about life in these three months than my humble age of 27 years has given me.

He has taught me how precious life really is. Even every second of every day is meaningful and full of opportunity to do good. He has taught me that my priorities were out of order, and that I need to take time to enjoy the quieter moments and not be so busy. And he has taught me the value of life. That the quietest and most unique people around you are often the ones that have the most to say. That there is no such thing as a disability, only your ability to make the best of your situation. And that there is always value to the lives of everyone around you, even if they have a disability that makes their value different then our own.

He has continually knocked down every barrier a doctor has placed before him, I can't believe this one-of-a-kind kid gets to be mine, and I look forward to our future. I can only imagine what he will continue to show and teach me as we enter this very different world together.

June 13, 2016

Emotions As A NICU Mom

As a NICU parent, you have emotions and feelings that no other parent will experience. These feelings run very deep and often manifest themselves on top of each other. There is a popular statement among NICU parents that "no one really knows what it's like unless you've had a baby here". And that's really the truth.

As an attempt to sort my own complex feelings, I've compiled a list of the emotions I navigate every day. (A little self-therapy never hurt anyone!)

I'm putting this first because it's the forerunner for all other emotions. This isn't a ran errands all day tired. Not even an up all night with a collicky newborn tired. It's a dragging your feet, feel it in your bones, look back and wonder when you got in your car and drove to this destination, tired. A tired that puts you into a amnesia-dazed fog. You will have entire stretches of the day that you don't remember. You will wonder how your body is still functioning. No amount of sleep will feel like enough. And yet, somehow you keep on trucking along. I've never experienced anything like this before. I almost wonder if it's becoming dangerous for my own health, but realistically what could I do about it?

You will be jealous of the parents next to you as they prepare to have their baby discharged. You will be jealous of the baby that whizzes off the ventilator in a month while your baby is still intubated. You will feel an especially sharp sting as you see friends and family post anything baby related on social media. Seeing those newborn photo shoots will make what you are missing out on with your own baby very apparent.

When you spend hours on end in a tight hospital room shared with multiple families, you get to know the people around you. You become fast friends and you share mutual empathy for each other. They are truly some of the very few people that know exactly what you are experiencing. And it's very refreshing to get to speak to someone else that can not only relate to you, but someone you can swap medical info with and not have to go into lengthy explanations. It's a breath of fresh air and makes the entire experience a little easier to swallow.

Because of the genuine empathy you feel towards other parents, there is nothing worse then having your child do well while the other family is having a rocky week. You know exactly what they are going through and the worries they are juggling. You see their tears and silently shed a few for them yourself. You ask how their baby is doing, and after receiving a sullen update, the guilt comes hard and fast as they inevitably ask how your baby is doing as well, and you have to answer them by saying, "Really great!"

Guilt lies everywhere else in your life as well. No matter what you do, guilt follows. You feel guilty for leaving your older children with family while you visit your baby. You feel guilty when you leave your baby that evening when he's still wide awake. Heck, you feel guilty for not technically scrubbing in for exactly three minutes before you go to your baby's crib. The guilt is real, and silly, and constant. No matter what you do, guilt follows for some ridiculous reason. 

Feeling hyper-sensitve and guilty about everything also makes you prone to feeling judged by people around you. When you can't come in one day, you will feel judged by the nurse. When you have been there most of the day, you will feel judged by the nurse. When you can only make it in to see your baby for a couple of hours, you will feel judged by the nurse.

They don't do anything in particular to make you feel judged. They are always understanding of the situation you are in and deep down you know you are the unrealistic one. And yet, something about them always replying with a varied, "sounds great, you just do what you can..." no matter what situation you have for the day, makes you second guess yourself.

So similar to guilt, you are constantly worrying about everything. And when I say everything, I mean everything. And the things you worry about are over things you've never experienced before. How is he doing? Do I really understand what's going on with him? Is he really making the progress I think he is? When he wakes up when I'm not there, is he ok? Am I spending enough time with him? Am I spending too much time with him? What is his future going to look like? How does the doctor really feel about his future? Have we been able to really bond through this? He's had so many care takers, does he really know I'm his mommy?

Then there's your other children: Are they doing ok with the babysitter? Do they really understand what's going on? Are they feeling any resentment towards me for not being around? Am I with them enough? Am I with them too much? Do they still feel loved by me? How are they really coping through all this?

I could go on and on and on...

Joy and Gratitude 
The NICU teaches you an entirely new perspective on life and how to find joy in the smallest of things. Never in my life would I think poop was such an exciting feat. Or that getting the chance to change that poopy diaper would be the most exhilarating moment of my day. I crave getting to change a diaper so that I get a small moment of normal contact with my baby. As I sit and watch his monitors by his bedside, I am thrilled as I see a gray bar on his ventilator monitor indicating he just took a breath on his own.

I've never thought so much about simple things we never pay attention to, like taking a breath. The smallest of occurrences can bring you to tears of joy.

You come to appreciate each precious minute you have with your child and you notice the tiniest of details. And those little things are what you have to hold on to as you painfully return home from the hospital without your baby for the 89th day in a row.

It's a tough life, and not one I would wish on anyone. But through all the fears, worries, guilt, and exhaustion, your sweet baby always manages to help you feel a small moment of happiness. Even if it's just watching and counting how many breaths your child is taking, the joy can be found. And those moments of joy help all the other emotions quiet. 

June 04, 2016

A Whole New Baby

Nothing much has changed since my last update - and that's actually a really good thing!

As we officially enter the month of June, I'm swelling with pride for my little man. I keep thinking back to a month ago when we didn't know what was going to happen with him. He was in such an unstable state. The slightest movement would send him into an emotional frenzy. Every 3 hours they had to give him extra sedatives on top of his scheduled medicine just to keep him comfortable and happy. And he was rescued on that high frequency ventilator on very high pressures.

He had become known as a highly unstable child around the NICU and nurses were nervous to take him. At this point is when we had our last care conference and told doctors to do everything needed to keep him going until the end of May.

The first part of the month I was feeling so discouraged and helpless. I had nightmares of Aiden's funeral and was desperate for some hope. At times I truly felt like I was going to lose him and my faith was dwindling. I prayed nonstop for some signs and answers that we were doing the right thing. As May continued, and as you can see from my previous posts, my prayers were answered. And my big, strong boy has made strides in the past month.

We told the doctors to give him the month of May to see what he does, and look at us now! We are starting off June with a completely different baby!

Time to be weighed! They only weigh Aiden when I am there because I'm one of the few people that
know how to put on his c-collar properly. But the benefit to that is they will always bring him
off the scale and right into my arms for some cuddle time!

We haven't necessarily made any leaps and bounds medically, and honestly I wouldn't expect that. But he is in a very stable place ever since we switched his ventilator to conventional air. His needed pressures are relatively low. His CO2 levels have been in a very good range and oxygen needs in the low 30's. This tells us his lungs are working well with pushing the oxygen in and CO2 out, and that his pulmonary hypertension is starting to heal. They have been continually weaning him off of his sedation, and he hasn't even seemed to notice. He is able to tolerate being handled much better, and can be soothed when he gets upset. And it even seems like we got his food intake under control. He's growing at a good pace, starting to make his own curve on the growth charts, and he's not getting overloaded with extra fluid. (In fact after some pushing on our end, they started using the growth chart for achondroplasia (most common type of dwarfism) for him. He's in the 1st percentile on that chart, but it has given them a base line for a curve to start to form for him.) And he's learned that his c-collar is a good thing as well, and only gives us some raised eyebrows as we put it on him.

That's a lot of big steps for him to make in one month. I feel like I finally have a happy, normal, functioning baby - as much as he can be.

The next steps for him will be a tracheostomy. And, of course, there has been a debate in the NICU as to when we should do that. Some people think we should wait a few weeks and see if he needs to be trached after all. Other people argue that we all know traching will need to happen, so what are we really waiting around for? His medical team has decided to give him a few more weeks and then reassess. Those wanting to trach has pointed out that he will need higher amounts of support as he recovers from surgery, so they want him to grow a little more so that he has the room to go up as recovery happens.

After those few weeks, I am going to do my best to push for a trach to happen. It's been interesting, as I've told people about his pending tracheostomy, I've received a resounding "Awe, that's too bad...". I know everyone means well, a trach isn't necessarily the best news, but I actually think of it as some of the best news I've received! A month ago we were talking about letting him go, now we are talking about a procedure that is going to get him home. And until he gets home, he can be a normal baby. He can be picked up, moved around, put into bouncers, and put on the floor with toys. He can finally be held by his sisters and other family members. He can thrive and flourish! I feel so anxious for his trach to be placed. I want to walk in there and say, "Just do it already!".

So at this point we need to keep praying that he will continue to grow, thrive, and get those lungs stronger. He needs to get to lower pressures and support on the ventilator so that he can be trached and get home. I envision we will be at the hospital for six more months. But at least there seems to be a positive end in sight!

Rocked to sleep in mommy's arms - the best place to be!