So I like to frequent preemie parenting websites, find articles, and give my input and experience when I can. I most recently was doing a bit of research on certain more common developmental delays caused by prematurity, and stumbled upon the article "Ten Most Common Preemie Health Problems" I of course out of curiosity continued to the site. As I read...I laughed....as I read more...I laughed more....and as I finished the article I wondered...
"How awesome is my child!"
I don't know about you but when I get sick, I am down for the count.
I don't know if you have taken care of a really sick person, but that's my job, I do it on a weekly basis and man....we can ALL be such babies when we are sick- me included. But, excuse my language, damn, not my child! As I read this article, all but TWO, let me reiterate, TWO...of these problems did our son have to fight through!
Lets start at the beginning....
We began our NICU journey fighting sepsis. Between high fevers, low blood pressure, respiratory failure Blake fought against all odds. With the help of vasopressor drugs, ventilator support, and antibiotics Blake survived infection...and then developed....
What. A. BIG. Blow. Just as we thought things were looking up, the hill became much deeper. Bilateral brain bleeds, the possibility of Blake's quality of life being that of a vegetable, the threat of his brain tissue being all damaged, necrotic (dead) tissue. The weight of the decision to continue treatment or to let nature take its course lay heavily on Zach and my shoulders. But....
look at us now! even if the outcome had been different, and Blake was not as active as he is, his smile alone would have confirmed we made the right decision. Blake's heart never stopped, so we never gave up hope! If he could keep that heart beating we could keep fighting for him too!
maybe the least worrisome- he did get to sport some awesome glasses for a while, and definitely rocked a better tan then his mommy and daddy did all summer!
Ugh! That dang belly! The biggest and most life threatening, that resulted in 3 of his 9 surgeries. If I could explain to you the feeling of despair Zach and I felt the day the doctor at Deaconess showed us Blake's blackened abdomen...oh I wouldn't even want to describe to you that feeling. NEC almost took Blake's life. As the infection spread and the more intestine became necrotic, Blake became more sick. He stopped moving, are wiggle worm lay still for two days. My family and Zach's family surrounded us, as the NEC got worse so did Blake's blood pressure, and respiratory status. Blake was baptized. Blake was loved. Blake was told goodbye...
And then a turn of fate, a miracle, if I can ever describe one occurred. God answered prayers and our son woke up, his breathing improved, his blood pressure stabilized, he became strong enough to survive that vital helicopter ride to Riley's. If you ever doubt in something bigger then all of us, then you have never witnessed a miracle...I myself have a constant reminder in something, someone bigger than us, living in my house!
#5- Respiratory Distress Syndrome
For over a month and a half we watched our son in a box, only able to touch him through 2 tiny doors. We watched as the ventilator setting went as high as they could go until we switched to another of the three ventilators. We never thought we would see the day that he would not need a machine to breath, we waited for the day we would hear him cry. After receiving doses of surfactant, multiple breathing treatments, and lots of time for his lungs to mature we were finally able to come off the ventilator on June 8th, just two days shy of Blake being two months old!
#6-Apnea of Prematurity
Apnea is a very common problem seen in preemies, because babies born before 34 weeks, their brain and lungs are not finished developing, which causes the babies to have periods where their breathing stops and heart slows down- scary huh?! Yeah, I can't count how many times we had to tap on Blake's head, rub his foot, or provide some kind of stimulation to remind him to take a breath. Luckily for most preemies this is something they eventually grow out of...I can still remember the first day we didn't have a "A&B" (Apnea and Brady) episode! It was such an exciting day...and just one step closer to getting home!
Those dang blasted eyes! I remember the day we found out Blake had progressed in his ROP enough that he was going to need surgery...it just so happened to be the same day we found out TWO other surgeries were being scheduled for the same week. I am sure I looked like a crazy person, the final straw...
As a mother, a mother of a preemie at that, we had literally hit every wall you could get. My little 1lb 6oz baby was now 4 lbs and already was covered in scars and had multiple surgeries basically on all parts of his body. I wanted ONE thing. JUST ONE! It was the day I finally lost it, all anger, sadness, loneliness, came up all at once and formed into lots of tears, yelling and questioning. Now looking back on that day, jeez I get exhausted just thinking about it! It ended up being the easiest surgery Blake had, he didn't have to be placed back on the breathing machine, and was only gone for about 30 minutes before he was back in our arms. Only some redness and sensitivity in his eyes for a few days and then he was back to his normal self. So glad those big blues were saved, it would have been a shame if he couldn't see the beautiful world he fought so hard to stay in!
Yet another problem that caused yet another surgery! When born prematurely, sometimes, the ductus (opening) between two major vessels is unable to close on its own. It causes abnormal circulation which can effect blood pressures, heart rate, and even breathing. This surgery is quite complicated but done often. They deflate the lung and go in through an incision made on their back, to get to the open ductus. This surgery is known to go one of two ways...wonderfully with immediate improvements in vitals, breathing, etc. OR it ends with many complications...thankfully after Blake's PDA surgery, other than some major swelling, Blake did very well!
#9- Bronchopulmonary Dysphasia
Although Blake had some problems not listed on this list...including hernias, hydrocephalus, UTI's, etc...etc...etc... We were lucky to not have problem 9 or 10 on the preemie health list!
We proudly kiss and love our child's scars! The strength and fight in this little child overwhelmed us daily! We count out blessings everyday!