I opened a bag and within a second a flood of memories came back from a single smell.
The smell of the NICU.
Sterile purell, that’s the best I can do to describe it, and that’s probably pretty accurate because I’m pretty sure that stuff lines the halls. It’s a terrible and wonderful place, the NICU. I pray you never have to experience the highs and lows that it brings; but never in all my life have I been more thankful for modern medicine and the doctors and nurses who have devoted their lives to saving others.
The day Ronan was born was a whirlwind and honestly I don’t remember much of it. I remember coming to see him for the first time but I don’t remember many details. Based off of pictures we have I know he was not intubated. From the moment he got to the NICU he was placed on a cooling blanket to stop further brain damage from the loss of oxygen during birth (you can read more about this process here). He was on the blanket for 72 hours. Since his body temperature had to stay lower than usual we could not hold him during that time. This was heart wrenching; I wanted nothing more than to just pick up his cold naked little body and snuggle him.
The next morning as we walked down to Ronan's room we saw what no parent wants to see... a team of doctors huddled outside your child’s room. Things had taken a turn during the night and the nurses were seeing signs of seizures. After some tests the doctors confirmed he had in fact been seizing. At this point they decided to monitor his brain activity and watch for more seizures, he was also placed on phenobarbital to help the seizing. This was a hard day, we watched them place leads all over his head making him look like some sort of experiment. He also became more and more sedated; he began to swell and his breathing became so difficult he had to intubated. Slowly we started to realize the severity of his condition.
When Ronan was taken to the NICU I figured it would just be for a few days. I knew he would have to be observed, but I just figured since he had a heart beat after delivery that he would be “okay” after a little while... little did I know. Honestly, I really think God shielded us from the truth about Ronan's condition that first week. It really didn’t hit us until we talked to the nurses, midwife, and doctors that delivered Ronan. We really don’t know how long Ronan was without oxygen inside of my stomach before he was born, but based on when I felt my uterus rupture from the time he was actually taken out it was at least 15 minutes. Based on that information and some googling, we began to realize there could be some major brain damage.
MRI & Diagnosis
As the days went by we stared at that brain monitor like it was our job. It was terrible. Any slight move of the lines would make us start wondering if there was something happening inside his little brain, when they weren't moving we grew more concerned. It was literal torture. It took several days for him to get an MRI, I believe it was almost a week before we had the results. Then finally, we heard that the Neurologist would be coming to our room. Hands sweating, heart pounding Ryan grabbed my hand as we watched the Dr. lift our child's limp hands repeatedly. He muttered things to his colleagues and they shook their heads in agreement before beginning to give us his diagnosis.
The exact words aren’t that important, but they gave us the news. Due to the time he went without oxygen he did suffer damage to his basal ganglia, a part of the brain that is primarily responsible for motor control. Both ganglia were impaired, only time will tell how this will affect his life long-term but right now the biggest issues he has, as you all are aware, have to do with his ability to coordinate the necessary muscles to swallow and suck. His technical diagnosis is cerebral palsy; but that has a broad definition. We are praying and hoping that his brain is able to heal as he grows. This is not uncommon with infant brain injury; the brain often heals and compensates for itself because it’s developing rapidly at this age. That was the bad news; not so bad considering everything he went through! Ryan asked repeatedly, “So he’ll know who we are? He’s all “there” cognitively?” The answer was a resounding YES! Since there were doctors and nurses around we held our composure until we were alone, but the tears of joy were flowing like Niagara Falls. Our little boy would know his mommy and daddy and that was what was most important to us.
Anyone who’s been in the NICU will tell you the highs and lows are extreme. There’s really no middle ground in there. After the MRI results we were pretty hopeful, things were looking up but then we slid into another valley.
Because of his condition he was not able to manage his secretions very well, meaning each time he was extubated he couldn’t maintain his breathing without nearly drowning himself with saliva. After two failed attempts, and some research on the meds he was on, we asked the doctors to wait three days before trying to extubate him again. This would be the final attempt and we wanted to give him a fighting chance. If he wasn’t able to breath on his own, he would need to have a tracheotomy. Obviously a trach wouldn’t be the worst thing in the world, after all, we faced much worse in the weeks prior; but we wanted to be sure we did everything we could for him to have as “normal” a life as possible. After we did some research we found out the medication he was on for his seizures was extremely sedative. In fact, it was so strong it took 72 hours for just half of it to be out of his system. This was working against him every time they tried to extubate him. So we pleaded with the doctors to wait three days for the medication to be completely out of his body giving him the ability to fight through his breathing. Ultimately that’s exactly what happened but not after going through the worst night of our stay in the NICU.
The first 8 hours of his third and final attempt of extubation went fairly well. He was struggling but able to keep his breathing regular with the help of suction every once and a while. I was super nervous so I decided to stay in his room that night as an extra pair of eyes. Around 2 am I started to notice he was acting strange, he was restless and just seemed really uncomfortable. After trying to calm him in his bed I asked the nurse if I could hold him and as soon as I got him in my arms I could tell he felt hot. The nurse took his temperature and sure enough he had a fever. From there things just went down hill, his breathing became very pained and he was unconsolable. Each time his lungs were checked the nurse was less confident that they weren't filling up with fluid. Our doctor wasn’t on call so another Dr. was called along with the nurse practitioner. After examining him they ordered all kinds of different tests and breathing treatments to help him get through, but intubation seemed like it was inevitable. He was put on an antibiotic, given nebulizer treatments, had a chest x-ray, and was tested for an infection.
By this time his chest was visibly extracting and his breathing was strained to say the least. Ryan put something on FB asking for prayer and we prayed hard for our little guy to muster up the strength to fight through this set back. By 8am the doctors were telling us to prepare ourselves for intubation and a tracheotomy. But they said they would wait three more hours for the antibiotics to kick in before they made any decisions. We prayed and prayed and prayed, as did so many of you. By 11 am all his test came back negative, his chest x-ray was clear, his fever was gone, and he was sleeping peacefully. Within 24 hours he was on room air breathing on his own. Outside of the night he was born this was the hardest 8 hours of our visit. Every second was intense, draining and scary. But again, we saw God perform another miracle on our behalf. An unexplainable turn of events within two hours can only be attributed to the power of prayer. As soon as word got out that prayer was needed things changed.
Emotionally, this was another really taxing trial. As a mother you want nothing more than to be able to care for your child and up to this point I really wasn’t able to. He was always hooked up to machines, so I couldn’t go far with him when I was able to hold him. I never got the chance to have his skin on mine after birth; it was three days before I even got to hold him for the first time. So when we finally got the okay to try and nurse I was elated! But reality hit quickly, again something was not right. Not only was he struggling to breath and swallow but he seemed to be rejecting me. I know that’s not what was really going on, but that’s what it felt like. I felt little to no connection with him. I had hardly held him, and now when I tried to feed him he would scream and push me away. I felt like a failure, like I would never have that mothers bond with my baby. The struggle was real and hard, in fact if I’m honest I didn’t feel a connection with him until he was 4 months old. He was like a robot, a screaming inconsolable robot that I didn't know how to take care of. That's an entirely different post for another time, for now let’s get back to feeding. The first sign of a problem was his strider: a loud noise he made while trying to take a bottle. After a few days the concern was raised that he may be aspirating into his lungs while trying to drink the bottle. After a swallow study those fears were confirmed. Since he was not able to protect his airway it was deemed unsafe for him to have any food orally. After a few days we opted to have a G-tube placed so we could get him home as soon as possible. After 6 very long weeks we got the “okay” to take our baby home, and we ran out of there before they could change their minds.
Today he’s still on the feeding tube, and that’s how he’s fully nourished. He will be for some time, he will undergo another swallow study at the end of January to see if he’s still aspirating into his lungs. If he’s not we will be given the green light to push foods orally. Right now we’re working with the bottle every day just so he’s used to having something in his mouth, if we didn’t he would for sure fail his test as would anyone who’s never had anything to drink before. He sees a speech therapist every week to help prepare him for his test and to teach him how to suck and swallow. He’s made huge improvements in this area as of late. He doesn't struggle with swallowing purees at all, but liquid is still a battle.
Physically he’s significantly behind as far as motor development goes, but he’s progressed each month. He’s six months old but at about a three month olds development level physically. He sees a physical therapist as well but the older he gets the more I’m seeing stronger signs of Cerebral Palsy. He will see the neurologist this month and I’m sure they will let us know their thoughts on the matter.
There’s so much I’m skipping over, so many incredible stories of Dr. and nurses seeing Ronan's story online then realizing they were working with him later that same day. Stories of people stopping us in and outside of the hospital saying they were praying for Ronan. Stories of little miracles happening everyday. I could never adequately put into words the events that took place in those 6 weeks. Nor could I express the gratitude we feel towards the thousands of people who surrounded us in prayer during that time. Without a doubt, those prayers kept him alive. I’ve heard it said that birth isn’t a miracle because it’s something that happens every day. I don’t know if I agree with that, but I certainly know that Ronan’s birth and life is nothing short of a miraculous act of God that has brought glory to His name. Ronan has a special job here on earth and it's a privilege to be his mommy. I'm learning from him and this experience every day, but this one thing I know; there is nothing outside of Gods control. Mommies and daddies out there, you will never be able to protect your child the way God can. Give your children fully to Him and you'll rest easy knowing His plan for them is far better than anything you could have imagined.