You're probably going to think I'm making it up when I tell you that Max has another completely unrelated rare medical problem. You're going to think I'm just trying to add stuff to make my blog more juicy or that I'm like a crazy hypochondriac mother who invents medical issues! But then if you come spend a couple days with us, you'll start by pointing out to me that Max is coughing and probably make a good joke about he sounds like an 80 year old with emphysema (he does and you would be like the 50th person to say to him 'Max, you gotta give up the pack a day'!) and then we'll try and explain about Max's airway and you'll think ok no big deal and then give us a day or two and you'll be yelling 'OMG, Max is turning blue!!!" and then you'll believe me that in fact we do have a whole other issue we deal with Max!
So from the day Max was born, breathing has been well, a struggle. Both babies were on ventilators for a couple of days from being so premature but Addie was breathing all on her own (or in hospital lingo 'on room air') at 3 days old. We first tried Max on room air or without assistance when he was 2 and a half months old and he finally came off a canula for good when he was just a couple days shy of 4 months old. In between we would try to give him less assistance and he would do great for a while and then he would drop his oxygen stats and start to turn blue and we'd crank up his breathing assistance, There's medical terms for this- bradycardia and apnea- but on the day we moved to the big hospital, one of our favorite nurses Emily who we got to know and love over the next 7 months, had Max and called it a 'Max Attack' and it stuck. So we now had a cute term for when Max would stop breathing but we still didn't understand why. We had lots of tests done including MRI and EEGs and couldn't find a neurological basis for it. The doctors and nurses started to suspect it was more of an airway issue than a lungs issue so when Max was a little over 2 months old he had a bronchoscope where they put a camera down his airway to observe what is going on.
And we got our diagnosis- tracheomalacia which in essence means that he was a floppy airway. Although I normally hate to plagarize and try to put things into my own words, I thought I'd include a paragraph from MedlinePlus Medical Encyclopedia...
"Tracheomalacia in a newborn occurs when the cartilage in the windpipe (trachea) has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, breathing difficulties begin soon after birth...Breathing problems that get worse with coughing, crying, feeding, or upper respiratory infections...Congenital tracheomalacia generally goes away on its own by the age of 18-24 months. As the tracheal cartilage gets stronger and the trachea grows, the noisy respirations and breathing difficulties gradually stop. Congenital tracheomalacia is very uncommon"
So I think that is a pretty good summary. It has nothing to do with his kidney issues and although probably related to his prematurity, is a very rare condition, even in a preemie. The good news is that, as you can see above, it will resolve itself! No surgeries, no permanent impacts. Which is awesome news since his kidney condition and hearing loss have lifelong implications. You'll also note the paragrph almost cheerfully states it goes away by 18-24 months which if you ask us is AN INCREDIBLY LONG WAY AWAY!!! So for the next year or so it seems, Max's floppy airway is part of our life.
What the paragraph doesn't really do justice to is how dramatic it can be. It makes 'breathing difficulties' sound all casual. The most obvious symptom of his tracheomalacia seems to be his hacking cough. When his airway is closing on him, Max tends to cough it open which produces this really dramatic sounding cough. Any doctor from any specialty who would walk through their NICU room would always seem very troubled by Max's cough... like they were pretty sure he might have tuberculosis or whooping cough and we were just oblivious. Max coughs a lot. He's not sick. He just has a mighty cough. Particularly when he eats. And the cough really is not an issue. The real drama begins when he tries to scream. Max can fuss or whine or even cry a little and he's fine but if he gets really mad and tries to really cry or scream, his airway shuts on him and he stops being able to breathe. His little body goes all stiff and he has this sad mouth open wide like he's screaming but no noise coming out look. And since he's not breathing, he goes from angry red to purple to blue. And trust me, it's scary. People who have to draw blood from him, give him shots, or do anything that angers him and have witnessed this always look petrified when he starts doing it.
Which probably makes you wonder what is he doing chilling out at home with us? Well, Max being home is a wonderful miracle and blessing. There were many times when we had to talk about a tracheotomy or putting a hole in his throat to create an always open airway or about having him stay in hospital until he can go a week without a Max attack (he can go a day or two now but not really close to a week yet!) In the end though, Max's attacks are all about managing them. A nasal canula doesn't really help because if his airway is shut, blowing oxygen is his nose doesn't help terribly much. So all you can really do is get him to calm down. Because if he stops being mad and relaxes, his airway will open back up. So we pick him up and pat his back and try to get him to look at us and soothe him. And most of the time, this works pretty quickly and he calms down. Sometimes he stays mad for longer but eventually just wears himself out and gets this troubling almost passed out expression and will then start breathing. Very rarely he gets super mad, finally passes out and then forgets to start breathing again. Then he have to use an ambo bag and push 100% oxygen in really hard and force his airway to open up and trigger breathing again. This, thankfully, is very rare. It has happened twice since he's been home. Both times because we put a feeding tube down his nose which he HATES. But I will tell you both times were two of the most panicky scary moments of my life. BUT, we did it. We were able to very quickly get him breathing again.
So Max is home because we are actually the best people to help him because he feels soothed by us and because we've seen it happen so many times now, we don't panic (most of the time!) and are able to calmly reassure him and get him to calm down and breathe again without any help. And on the 2 occasions we had to help him more, we are trained to do that and can. So we believe we are the best people to help sweet Max over the next year until he grows out of this. It's just a big deal. Al and I have never left Max with his grandparents and so for now, we aren't able to go out just Al and I because one of us needs to be with Max at all times and we always take his ambo bag and often his oxygen when we go places. We don't drive anywhere alone with him because we want someone in the backseat- just in case. So Max going out is just a big deal. And really like 99% of the time, he's totally fine. But we can't take our chances and leave him with anyone else or just load him in the car without all of that. Lately i've gone a few places- to a baby shower, out to eat, up to school or to a friend's house and just brought Addie. And I feel bad because people are like 'where's Max? he didn't get to come?' and I worry people think I'm favoring Addie by taking her out. It's just that I can't take Max out by myself and so Al has to come too and it's just a bigger deal and harder to pull off. And with Al's mom here, she and Al have been really good about taking Max out on special trips with the two of them while Addie is at extra doctors appointments or with my mom. So we are making sure he still gets to do stuff. It just kinda takes a village with these two!
I'll have to write another post at some point about 'developmental milestones' because it's really a whole different story. But the short version for now is that Addison has some minor developmental delays- she is actually doing really awesome for having been born 2 months early and having lived in the hospital for 8 months. She is hitting targets around her 'adjusted' age (meaning she should have been born 7 months ago so she is developing the skills that a 7 month old has). She's sitting by herself, rolling all over the floor to get to her favorite toys and really trying to crawl. Max is much more significantly delayed. He can push his head up but cannot hold it steady and he can reach at things but is not always able to grab them. We don't really know what the difference between them is or exactly why Max is more delayed. We've had brain scans done and his brain appears perfectly normal so there's no clear reason. His tracheomalacia did mean he was on a lot of oxygen support for his first few months of life and more confined to his bed. He had lower amniotic fluid while in utero and Addie spent her 7 months in my belly kicking Max down and trying to take over. His airway problems mean he uses more energy breathing and he has had periods where keeping his oxygen levels up on his own is difficult. But, for whatever reason, he's just behind where he should be (which is no big deal) and behind where his twin sister is (admittedly, a little harder). But he's got a great new physical therapist who is super positive and really believes in Max and thinks he'll be caught up by 2. And neurology will check on him in a couple more months just so we can keep making sure we're not missing anything.
Oh but sweet Max- if you have had the pleasure of meeting him, you would know he is the most delightful baby. He has the sweetest disposition. Which is awesome because if crying triggers an episode, we are so thankful he rarely cries. He has so many reasons to be grumpy but he's just the happiest little boy. He loves people and he loves being held. He is really the sweetest baby. His sister is equally as gorgeous but fiery and hilarious- totally different personality. Max is our cuddler. And his smile is the most beautiful thing. When I get home every day and he sees me, his whole face lights up. My babies are both miracles (and all babies are!) but oh, if you had seen how hard Max's first few months are... and then see how awesome he handles everything now.... wow. He amazes me. He's got a lot of medical issues but I know God made him perfectly and his body may have its weaknesses, but his heart and little soul are just flawless. He melts my heart.