Amber’s Birth Story

April 6, 2013

I was 26 years old when I found out I was expecting a lil bundle of joy. By the time we knew what the sex was we had already decided on a name: Matthew Elijah. I had problems during my pregnancy with blood pressure, it was high, but with no other issues I was not medicated, only put on bed rest for the last trimester. My doctors let me go to 42 weeks before deciding I would need to be induced to “get that lazy baby out”. Trust me, in mid August and at 42 weeks pregnant, I was ready!

On August 24th at 7:30 am I checked in to the hospital and began the process of inducing labor. I went 29 hours before my doctors decided a c-section was the way to go because he simply was not doing what he should be at that point; he was still being “lazy”. At 12:59 little Matthew was delivered with barely a whimper. I was so excited to have him in the world; I was ready to be a mommy. It would be another hour before I could really hold him, but when I did I was hooked. His big beautiful blue eyes, the way he held my hand, and how he instinctively snuggled my chest all just told me he was mine and he would change my life forever. Little did I know just how much. Nine hours after he was born, the nurses in the nursery noticed he was turning blue. They called a helicopter from Knoxville (90 miles away) to transport him. Still sore and attached to an IV, I was rolled into the nursery to see my sweet one before they took him away. I couldn’t hold him, I could barely reach him. He had swollen almost twice his size by the time he was placed in the helicopter. His daddy, my aunt, and my mother in law took off behind them. I was left alone, uncertain, and scared, what was happening to my baby? A few hours later, I received a call from the doctor in Knoxville who was taking care of him. “He’s a very sick baby, momma. He’s not getting enough oxygen; his blood oxygen level is only at 65%. We’re doing all we can, but the ventilator can only do so much.” I could hear the concern in the doctor’s voice; he had never really dealt with a baby who couldn’t get the oxygen with help from the ventilator. I was updated every hour from the doctor (whom to this day, I’ve never met) and the prognosis was always the same “we’re doing everything we can, but it isn’t enough, he’s a very sick baby.” I was going crazy, I prayed harder than I had ever prayed in my life, “please, God, please, give me my baby, make him well.” I just wanted to take him home.

As with all prayers, there can only be three answers: Yes, No, and Wait. My answer was Wait. Eighteen hours after he was flown to Knoxville, the doctor, seeing that nothing they could do would help, decided to have him flown to Nashville, the nurse called me this time, “we’re going to send him to Nashville to be put on an ECMO machine, it’s his only chance, he just isn’t getting enough oxygen.” I found out that his poor little lung had torn leaving a slow leak, that was why he couldn’t get the oxygen, and he had PPHN (Persistent pulmonary hypertension of the newborn, or PPHN, occurs when a newborn’s circulation system doesn’t adapt to breathing outside the womb. In babies with PPHN, the pressure in the lungs stays high and the ductus arterious remains open, allowing blood to be directed away from the lungs. PPHN is a rare but life-threatening condition that appears most often in full-term or post-term babies who have had a difficult birth or conditions such as infection or birth asphyxia.)

^It would be years before I really learned what that meant, when you have a sick baby and the doctor says “he has this…” all you do is say “Well, FIX IT!” ECMO was the only way for us. Little did I know though, that the staff at Knoxville didn’t really hold out much hope for little Matthew. They told his father “If he dies before they get halfway there, we’ll bring him back here. If he dies past the halfway point, they’ll take him on to Nashville.” They didn’t even give him a chance in hell, they were counting on his death. We prayed even harder. It was torture being hooked up to tubes and stuck lying in a hospital bed nearly 200 miles away from where my baby would be. I had several panic attacks, who wouldn’t, right?

The next morning, 2 days after surgery, my OBGYN approved me to leave the hospital knowing I would work myself into a stroke if he didn’t let me get to my baby. It took my parents 4 hours to get me to Nashville. I got there just after they had put Matthew on ECMO, he was, for the moment, stable. It was heartbreaking to see my sweet little baby hooked up to so many tubes and machines. He had two tubes in his neck for the ECMO, a chest tube, he was on a ventilator, and had an IV. There were more screens and machines in his room than I had ever seen in my life, and all for one baby. He had two nurse practitioners with him at all times. The surgeon came in shortly after to speak to us, “ ECMO is his only hope, “ he told us, “this is the last step we can take, after this there’s nothing else.” He patiently (and with more composure I could have had) listened to our fears, heard our questions, and tried to comfort us. We were worried that the lack of oxygen would render him a vegetable, that he could have learning disabilities, and that he just plain-out wouldn’t make it. The doctor seemed confident that ECMO would fix him, the machine was pumping Matthew’s blood thru a machine, enriching it with oxygen, and pumping it back into his body, giving his lungs a chance to catch up and start working as they should. But my baby didn’t know I was there, he was on such strong medication that he slept the whole time, effectively keeping him in a womb-like trance, oblivious to the outside world. My only comfort was the rise and fall of his chest as the ventilator breathed for him. When I sang to my little love, his lips would curl in a smile around the tube that provided him oxygen, which was enough for now.

We waited 6 days, watched the oxygen saturation being “fed” to him come down, his lungs were beginning to take over, we had a little hope at last. He was taken off of ECMO, but still needed the assistance of the ventilator, he was also beginning to be weaned from his pain medicine, unfortunately nothing could be done for his enlarged heart, it had worked so hard to keep him alive it had grown, that was something we were willing to worry about later. Since he was making improvements we began to calm a little, he was even moved to a step down pod in the NICU and we were assured he would probably be the next to go home, provided he could get off the ventilator and be weaned from the medicine. The ventilator was soon replaced with an oxygen cannula that also provided little puffs of moisture (the name of this escapes me), and finally we got to hold him again, for two weeks we suffered in heartache only being able to touch his warm little body, to hold his hand, or stroke his cheek. I’ll tell you, the minute I was able to wrap him in my arms again I didn’t care that I had to maneuver around the feeding tube, the PICC line, the nasal cannula, or all the wires from the sensors attached to him, I was content and happy to have him in my arms. By this time, he was alert and focusing on me, he knew he was in the world, and that meant the world to me.

That’s around the time we learned what the nurses meant by “wimpy little white boy”, he was having trouble weaning off of his meds and had to be put on methadone, he seemed to be stuck at 50% oxygen thru his nasal cannula and could get any farther, he even relapsed a few times and had to be put back on the ventilator. And thru all this he was still unable to nurse or take a bottle, he was barely able to take a pacifier. After the first month, we were stuck in a holding pattern, no end in sight, just a steady day after day of the same things. No improvement in his breathing, only small steps off of his medicine, still not feeding, etc. Then the infections began. No one ever tells you of the nasty germs that lurk around the hospitals and especially ICU and NICU wards. We had to deal with several nasty infections, spinal taps, suctioning of mucus and a few spells of not breathing. We were beginning to believe we’d spend the rest of our lives raising our son in a hospital. My husband and I worried that we would have a child with special needs, because it was still too early to tell if there was any damage to his brain from not getting enough oxygen those first couple of days. Were we strong enough to be able to make it through this as a couple? Would one of us have to stay home forever taking care of him, could we do it? What if we failed to be what he deserved? I cried myself to sleep most nights worrying if I could be the mother he needed. I prayed for a sign, a voice, something ANYTHING letting me know it would all be ok. And in a way, I got it, he smiled, bigger than I had ever seen before, an open mouthed, just giddy-happy-excited smile, it covered his whole face. And it was for me. I knew I was worrying about the wrong things. My son, thru the feeding tube, the oxygen, the pokes, the x-rays, the swabs, and the mind-blowing boredom of lying in the same spot all the time, looked at me and showed me what joy could be. I never felt sorry for myself again. I decided if he could be happy about absolutely nothing, then I had no right to feel sorry for him or me. For two whole months we fought the NICU battle, happy little steps forward, and heart wrenching falls backward. He turned a month old while still on oxygen and feeding tube, and we waited in loving support, telling him how strong he was and how good he was doing and he really did begin to improve. It took another month before we were able to take him home.

On the day he turned two months old we picked him up, still using a feeding tube, put him in his car seat and took him home. I was never so proud as when I was able to lay him next to me in his bassinet and sleep for only two hours between feedings. I was happy to have interrupted sleep, excited even, because he was home. Within a week of being home, we were able to get rid of the feeding tube and we haven’t looked back, milestone after milestone was passed with flying colors (although some were a little later than we expected) and Matthew thrived.

Today Matthew is 5 years old, he just started Kindergarten. Any doubt or worry we had about his learning abilities are gone He is at the top of his class, having the highest reading score, he is extremely smart and kind. He thinks of others before himself and he adores his baby sister. He still knows how to flash me that beautiful smile when I am feeling down that just makes my day brighter. I believe that through everything, God has a special plan for Matthew, and all children like him. I believe that those who struggle so hard in the beginning are meant for great things. My advice to any NICU mom or dad is this: Have faith in your baby, they don’t know the term “give up”, take a cue from them and you keep trying too.