I almost hesitate to write this post. Why? Because I am mostly over this stuff. Aidan is a thriving, active, intelligent, curious, healthy 3 year old boy. Yet it is still possible to be brought back to the difficult feelings of the NICU and his first year or so in a heartbeat.
It happened while on the phone with a friend yesterday. Her daughter is almost 6 months old now. I was commenting about how much I am loving age 3 and how much more freedom I finally have. I said, “Yeah, the baby stage was just not my favorite.”
She replied with an almost tangible indignance in her voice. She told me that she LOVES her daughter’s infancy and she has PLENTY of freedom. I swallowed hard and tried just to move along. But I couldn’t. I had this idea in my head that I was being judged for what I just said. Judged for saying I didn’t love the baby stage. I started my reply. Lots was going through my head and only some of it came out of my mouth (at least I have learned something!).
I told her that I might not have felt that way if we had had ANY help during Aidan’s infancy. We have NO family here and our friends didn’t/couldn’t do much to help us. So for Aidan’s first year we had very, very few breaks. I reminded my friend that her parents live a few miles from her and will take her daughter absolutely whenever she asks. I continued by saying that she also has a full term healthy daughter, while we had just taken home a perilously premature baby on home oxygen and with a saturation and apnea monitor. I reminded her of my “Summer of Puke” and how hard it is to enjoy a 6 month old who is battling such food aversions that he vomits on you 4-6 times a day.
I didn’t even get into all we battled the first couple of years, but when I look back on it, sometimes I am surprised we made it. That our sanity held. That we managed to remain married while things were so hard. So just for a moment I am going to allow myself to remember all we managed to make it through. Bear with me.
Early subchorionic hemorrhage during week 7. Bad quad screen during week 16 of pregnancy. 21 week ultrasound reveals severe IUGR. Amniocentesis comes back with 46XY baby. Preeclampsia hits at the beginning of week 24. Baby doesn’t even weigh a pound yet. Prognosis is grim. Strict bedrest at home. Week 26 sees blood pressures no longer controlled at home and I am admitted to the antepartum ward for worsening preeclampsia. Each day we are subjected to ultrasounds that decide the fate of whether or not I am allowed to carry the baby for another day. 27w 6d. Severe Class I HELLP syndrome. Liver threatening rupture. Platelets nearly nonexistent. Aidan is starting to show some signs of distress. Emergency cesarean. Aidan weighs 1lb 8oz and is 12 inches long.
7 weeks on a ventilator. Bronchopulmonary dysplasia develops sentencing Aidan to scarred lungs. We are fortunate and do not experience brain bleeds or sepsis while in the NICU. We spend 105 days going to and from the hospital until we can finally take him home.
Aidan comes home on December 12, 2005. We are happy but scared shitless. He has home oxygen (not that big a deal once you know what you are doing). But the saturation monitor is another thing entirely. He needs to have it on, especially while sleeping to let us know if he needs his oxygen turned up. Lots of false alarms and almost no sleep for Brandon or me. December 25 sees us back in the ER and Aidan has viral pneumonia. We didn’t even make it 2 weeks at home before something happened.
January 2, 2006 is a night that neither Brandon nor I ever want to relive. Aidan was happily eating a bottle and for whatever reason, he aspirated. He choked a little and vomited. Brandon laid him on his stomach while he grabbed for a spit rag. I looked over and noticed Aidan seemed a little blue. I said, “Brandon, is he breathing?”
Brandon looked and never even replied. He grabbed Aidan, did back thrusts and then turned him over and gave him breaths. I am not sure I have ever been more scared in my life. I called 911 and I kept saying out loud, to myself, “NO! NO! Not now! Not after we went through all this! If you were going to take him, you should have taken him while he was in the NICU.”
Brandon flipped him over one more time to do the back thrusts and I was on the phone with 911. Aidan started crying. Brandon had him breathing in well less than a minute. The 911 operator sent the paramedics to check him out. The paramedics looked him over thoroughly, felt reassured that we had a monitor, and told my husband, “Good job Dad.”
The winter and spring were lonely. The RSV risk was so high we didn’t dare expose Aidan to germs with his fragile lungs. We spent those times in relative isolation. In the spring, Aidan came off his oxygen and we started solid foods. He must have had body memory of that ventilator tube, because he developed a HUGE oral aversion at that time. I spent most of the summer learning what I could/could not do when it came to food with Aidan. And I spent most of the summer cleaning up vomit. Finally around his first birthday, I talked to his pediatrician and said I thought he needed feeding therapy. He agreed and we started. Gratefully, it did wonders and we have not had behavioral or sensory vomiting in a very long time. Probably almost a year and a half.
That January, Aidan had to have a minor urological surgery. We had no idea what was about to happen. About a month later, Aidan got VERY sick. Fevers of 105+ for a few days at a time. The night I knew something was really wrong, we were in bed with him and he woke up suddenly and vomited bile. He was lethargic and we both knew a trip to the ER was our next step. The ER doc ran all the expected tests. He did a chest xray, urine sample, and drew blood (just in case, he said). Well, somehow the lab lost the urine sample, but the chest xray was clean and we needed to wait on the results of the blood culture just in case. I think we went home with antibiotics and he had been rehydrated while in the ER. He was tired and listless the next day, but did better. The following morning, my pediatrician called me and asked me where I was. I told him I was at home. He informed me that Aidan’s blood culture showed Enterococcus growing in his blood. Aidan had sepsis. This was deadly serious. I needed to get to the hospital right away. The doctor had already called and done the preadmission over the phone.
Aidan spent the next two weeks in the hospital on IV gentamicin and ampicillin. I had a nagging feeling that this somehow had something to do with the surgery the prior month, so I called the doctor who had done the surgery and explained my theory. He told me that we could set Aidan up for a VCUG. This test shows the dynamics of the kidneys, ureters, and bladder and would show if a bladder/kidney infection had been the source of the sepsis.
The test was conclusive. Aidan’s left ureter had mild reflux allowing urine from the bladder to travel back up mildly into the kidney. Not normally a problem when the urine is sterile, as it normally is, but a huge problem when you have a urinary tract infection. Aidan likely got the UTI after surgery and it travelled to his kidney where it went into the blood and he became septic.
The condition was called VUR and occurs in about 5% of kids. The angle of insertion of one or both of the ureters into the kidney allows for the flap to allow backflow into the ureter and up to the kidney. We could wait for Aidan to outgrow this (at about age 5or 6) or do a minimally invasive procedure where a bulking agent called Deflux is injected into the bladder wall to bulk up the area near the valve and prevent it from backflowing. We chose this. As a result of the kidney infection that moved to sepsis, Aidan’s left kidney was scarred minimally. Gratefully his right kidney is measuring a bit larger than average so it seems as if his body is compensating. His left kidney is still slightly smaller than his right, but it is growing on the same trajectory as the right one, so the doctors believe he will be just fine. Even still, we need to have kidney ultrasounds every couple of years to be sure.
Meanwhile, Aidan was sleeping poorly. When in our bed with us, I noticed he seemed to sometimes pause for several seconds, and then almost gasp a bit when he took his next breath. It sounded a bit like sleep apnea to me and I asked his pediatrician about it. He referred me to an ENT who told me his tonsils and adenoids were big but not huge and she would want a sleep study to confirm apnea prior to feeling ok about surgically removing tonsils and adenoids from a 1 1/2 year old. We went for the sleep study. The results were horrendous. Aidan had 54 obstructive apneas in 7 hours of sleep. During REM sleep, he had an arousal almost every other minute. The theory was that many former preemies have some transient low tone in their trunk. When we sleep, all our muscles relax, including the ones that hold our airway open. So in a sleeping, former preemie with borderline tonsils/adenoids, there was a “perfect storm” being created for obstructive apneas. His tonsils and adenoids came out the following month. He slept like a different kid.
At this point, Aidan had gotten pretty healthy. He was about 1 1/2 years old adjusted age.
Even reading through this sounds overwhelming now. I can’t quite believe we went through all that in such a short period of time. We also spent the first couple of years worried about his developmental milestones. He managed to reach them all on time, but it doesn’t stop a preemie parent from wondering if it will happen. Instead of joyfully watching your child sit for the first time, or roll for the first time, a preemie parent wipes their brow and thinks “Phew! He managed to do that one on time. What’s next?”
So to bring you full circle, perhaps you might understand why the comments of my friend hit a nerve. It isn’t as though I didn’t love Aidan and didn’t WANT to enjoy his infancy. I just couldn’t. It is hard to enjoy anything when you are living through that much fear.
As we celebrate bringing him home to us 3 years ago today, I mostly don’t think about that stuff. I mostly live in the here and now. The now of a precocious 3 year old boy who is giving us a run for our money. He is bright. He is funny. He is joyful. He is loving. But it took a lot to get us here. And while I don’t think of the hard times very often anymore, they will always be there with us. They are part of our experience as parents. They played a part in shaping who we are today. The way we navigated them (I believe) speaks highly of us as a family.
The sting of prematurity never fully goes away. But gratefully I can say that it does fade into the distance a bit.
