Tuesday, September 28

Equipment Woes

We've had our fair share of not your usual new baby stuff. There was the crazy traumatic birth and the five months in the NICU, with all of its unique NICU kind of crazy.

We've also had some equipment to contend with. There was the oxygen concentrator that hummed all day and night while Bryce was tethered to it for the first months we were home. And the tiny but mightily awful NG tube. NG as in nasogastric tube. As in you hold him down while I shove this tube down his nose and try not to land it in his lungs but rather in his belly and then let's make an educated guess as to which it did land in, all while he screams and I cry.

But back then we were more accustomed to how unusual our lives were. Everything in our lives was upside down. We didn't live at home and then we did but it didn't feel like home. Our old friends were new friends and our new friends (nurses, doctors and therapists) were old friends. Upside down was very much right side up to us at that point.

We discovered that if everything seems like its falling apart it probably is but if you try hard enough, cry long enough and pray loud enough you can probably survive it.

And slowly but surely our lives began to resemble those of other new parents, despite us having been parents for nearly half of a year. We returned to home and then to work, we went through the day on only a few hours of sleep but were rewarded a million times over by the joy of a baby finally in our home, in our bed, in our lives and forever in our hearts.

Then around thanksgiving Bryce smiled and our worlds changed forever. Every day every thing that we did was to illicit a smile from his sweet face. And everything else was to pass the time until we could return to his smiling face.

Sure we've had more tough times since Bryce came home last November. We endured emergency brain surgery, returns to the hospital, a scary Cerebral Palsy diagnosis and hundreds of sleepless nights worried the latest teething jag was actually a shunt malfunction we might be missing.

But we also had the home medical equipment company come take away that annoyingly loud and large oxygen concentrator, along with all of the superfluous tubes and tanks accompanying it. And the NG tubes are long lost history. Thank God. We now have a house full of toys, high chairs, walkers, jumpers, bottles and baby food. We love it.

And then we go to a mom's group or a Gymboree class where all the other baby's are sitting, saying words, eating table food, crawling, walking and using their hands equally. And we can't help it. We don't say anything, we diligently smile through but we both feel it. The sudden realization that our baby isn't normal, that he's so far behind even his adjusted age that it can't be ignored. It's like being kicked in the stomach. We spend so much time with just us and Bryce that we are used to him, he's just another baby. But then we see babies in Vail half Bryce's age toddling around happily while playing with the shooting streams of water and bounding back to their parents with huge grins on their innocent faces. And just like that our bubble is burst.

And we come home to therapy appointments galore... but it's okay because we are so lucky to have Bryce in our lives. We know this.

Then the therapist says we need equipment. We need a stander, maybe a sitter/stander that is a "substantial piece of equipment." Because by 18 months babies need to spend several hours a week standing in order for their growth plates to properly respond, otherwise his legs won't grow long enough for his body and he'll have new issues to contend with. And since he's not going to be standing on his own by 18 months we have to get a $3000 - $4000 piece of equipment to strap him to every day so that he'll bear weight on his legs.

And by the way, we also have to get him a SPIO suit because his body isn't giving enough bio feedback. He forgets sometimes that he has a right arm and he should try to use it. So maybe this compression garment that he'll wear every day will remind him.

Don't get me wrong, I'm happy to have a therapist to inform me of these things. And happy to have the resources to get these things for him. Sometimes though you just want your baby not to need them.


  1. I know what you mean about other kids the same age being way ahead. I've started just lying about Jack's age when I don't want to deal with all the questions. I don't know if thats good or bad, but it makes all the questions from strangers go away! And sometimes that can be a good thing because then I don't dread being around other little kids as much and I know its super good for Jack to be around other kids to see what they are doing.
    I love your blog header. He is SOOO cute!!

  2. Preemie delays are hard. My niece was born a week after my girls. All babies were born at the same gestation, but she is so much more ahead of Lillian. I guess maybe Lily being growth restricted may have had something to do with it. But we get our babies to be babies a teeny bit longer. And I think we appreciate milestones all that much more. We have special babies.

  3. I'm like Tricia, we lie about Luke's age too. Sometimes I just don't want to answer all the questions. You know all the stuff I would offer as advice. You've heard it before. You're doing a great job, Katrina. Thank goodness for our blogs - where else would we vent? :)

  4. I watch and many times my heart is sad but not because Bryce is not like all the other babies but because of all the question by others and the fact they don't understand.One thing I do know is that I am very proud of you as a Mommie to Bryce and Caleb as his Dad.I thank God each day and sometimes many times a day for Bryce and his parent.One smile from Bryce and all is grand.


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