Michael's Story
~Michael's Story~
When Megan was born it was the most miraculous experience of my life! I loved being a mom! And I wanted more children. We tried. Several years passed and we weren't pregnant. I fought discouragement and depression, and not always successfully. Each time someone else had a baby, the longings were all consuming. It was very hard, because I love children so much, and I loved being pregnant. Even though the pregnancy with Megan wasn't an easy one I desperately wanted to feel that again, and have another child to love and watch grow up. It seemed that everyone else in my family just has babies so easily. Finally, when Megan was about 6 years old, I decided that I needed to release that desire to God. I struggled with the "wanting" - but was finally able to accept that Megan was to be our "only". I "let go and let God", I guess you could say. Oh, I still would have loved to turn up pregnant, but it wasn't the same aching desire that I'd had for so long. Once I released it to Him, God was filling that void for me.
In January of 1997 I conceived Michael. On the night of Feb. 12, Mark bought an EPT. We joked about how "silly" we were being... then I took the test. Those two little pink lines popped up on that test strip faster than I could blink! I couldn't believe it! After all those years, and all the heartache, it seemed that our prayers were being answered! It was too good to be true.
The doctor confirmed it a couple days later. He was a little worried in the beginning. With Megan my blood pressure had teetered on the high mark throughout most of the pregnancy and since it had been 10 years between pregnancies and I was 35 years old now, he thought we'd really have to be cautious. But, I had no problems carrying Michael. It was the most perfect pregnancy we could have asked for. Everything was right on target. All the pre-natal tests came back negative to any problems. My blood pressure was lower than normal the whole time! It was as if at each month's checkup God just proved that this was good. I felt wonderful and we thought we were having a perfectly healthy baby.
On the evening of September 2, I began having "pains". They weren't strong, and Michael was so "low" that I thought it was just muscle aches - or Braxton Hicks contractions and thought nothing of it. Until I realized that I'd been having them for a while. I "jokingly" told Mark to time them... they were about every 12 minutes. An hour later, just when I thought that maybe I should be concerned, they stopped. We laughed about this baby's "sense of humor", assumed they were the false labor pains and went about our business.
Within the hour, the pains started again, and this time I knew they were real contractions. They were hard and fast, no more than 4 minutes apart. This baby was coming in a hurry! In a flash we'd contacted my doctor and were on our way. My sister was there to stay with Megan. I remember hugging Megan as we left for the hospital, and saying between pants, "In a little while Aunt Jane will bring you to see your new baby." We were all so happy.
As we drove to the hospital, our only concern was that this baby was a little early. But, we were only about 3 1/2 weeks early. We knew he was big enough. The doctor had even told me to be prepared for this baby to come a little early. He guessed a couple weeks before the due date. We were almost there, so we just thought that was it! Nothing to worry about. Except that hindsight has shown me that I really "knew" then... this was not normal labor... this baby was coming way too fast and I was feeling "strange". I suppose though, at the time I was blocking those thoughts from completely registering.
Michael was born only twelve minutes after we arrived at the hospital! My first clue that something was wrong was the look on Mark's face. He looked down at the baby, and then just held my hand, with his face losing all color. The nurse whisked Michael to the other side of the room and I couldn't even see him. Except for the top of his head. Which took my breath away! He had red hair! A head full of wavy red hair. I kept screaming... "What's wrong with him?" No one answered. I watched as this swarm of medical personnel surrounded my baby and knew this must be serious.
My doctor arrived about 10 minutes later. Totally shocked that I'd already delivered. He squeezed my hand and said, "I'm going to go check on our baby"... he walked past me and went to the "swarm". That crowd of lab coats and greens parted and let him in. He stood with his back toward me. I could only see his head and shoulders but, from that, I knew that I was about to get bad news. I watched as the doctor working on Michael (Whom I later learned was the head neo-natalogist) whispered to my doctor. I held my eyes on this man I knew so well... and watched how his head hung and his shoulders suddenly drooped... and then... when he turned to face me... the look on his face is one I will never, never forget. That is the moment I knew how bad things really were.
The neo-natalogist came over then and said,
"Your little guy has big, big problems."
She explained that Michael had a serious spinal defect and he wasn't breathing on his own. They'd had to "bag" him. She said they needed to move him to the NICU to get him stabilized. They wheeled him over so that I could see him. He was beautiful! Chunky little cheeks; his arms and legs were so plump they had those baby rolls. Michael had deep blue eyes, just like Megan's and mine. He was looking right at me the whole time. I couldn't hold him, but I was rubbing his little back and trying to tell him how much I loved him. If I didn't know better I'd swear that he was just staring intently at his mommy's face as if he knew he'd never see it again.
They took him to intensive care. I laid there in total shock. Mark called our pastor and within a half-hour my room was filled with people. I kept wondering why the hospital staff wasn't restricting the amount of people in a room. There were so many at times that the nurses would have to squeeze their way through the crowd. Now I know it was because they knew my baby was going to die and the "rules" didn't matter.
My doctor was with the Neo-natal ICU staff and he made what must have been a dozen trips back and forth down the hall to report to us. Usually, just to say,
"He's getting enough oxygen right now", or
"His color is good".
No real information, but he was the lifeline between our son and us. Without him we'd have known nothing. At least we knew he was still alive and they were doing all they could for him.
Finally, head of the NICU, who'd been with Michael since moments after his birth, came back and said that Michael's problems were more severe than they first thought. That's when our world began to completely crumble. She explained that in addition to the spinal defect, Michael appeared to be missing some internal organs below his heart. They could not keep him stable with the equipment they had. His lungs were so small that he needed a special high frequency ventilator. She wanted to have him moved to the children's hospital - the only one equipped with what he needed. She said that she wanted to get him there as quickly as possible to get him on the machine and stable so that they'd have a chance to do some tests and confirm what she suspected. We were numb. My mind couldn't even comprehend all that she'd said. The transport team was getting Michael ready. They brought him to us as they were leaving. He was in a huge contraption with tons of tubes and wires. A sight I'll never forget. They'd sedated him by then and he looked so small and helpless it broke my heart. I wanted to go with them, but was flatly refused. They said I had to be stabilized myself first. Mark wanted to go, but they told him that he'd not be allowed to be with Michael until they got him stabilized so he might as well stay with me and wait for the doctors at the children's hospital to call. That was it. In a flash they took our baby and left. I remember the empty feeling I had as that team rounded the corner leaving my room and I couldn't see my baby anymore. I thought it was the worst feeling I could have! I learned differently. At least at that moment I still had some hope.
It seemed like an eternity passed before we got that call. We sat there in silence, praying and watching the clock. Finally the doctor with Michael called. He said that Michael was on the ventilator and was finally getting enough oxygen, but that it had been touch and go. He said that they'd run some tests to determine his condition, but it would be several hours before they really knew anything. Mark left at that point and went to be with our baby. I still wasn't allowed to go. Which left me alone. Those were some of the longest hours I'd ever spent. I wanted so badly to be with Mark and Michael. I remember feeling too empty to cry.
In the wee hours of the morning, the doctor in charge of Michael called me. He said that he'd just spent an hour explaining all this to my husband but wanted to explain everything to me personally too. He told us that he agreed with the first doctor's assessment. Michael did have a severe spinal defect and it appeared that there were several other problems. He suspected at the very least no bladder. They had tried to put a catheter in and had gotten no urine at all. They had done a sonogram and had seen no bladder and he didn't think he saw kidneys, but wasn't 100 % sure. He explained that Michael had had some problems with his respiration and that even with the high frequency ventilator his lungs were so small that he wasn't receiving proper amounts of oxygen. They would try to keep the level up as much as possible through the rest of the night and then repeat the tests with the head of radiology. At that time they would meet with the head doctor over the Neo-natal ICU and determine a prognosis. He was very kind. He answered any question I could think of (which at that point were very few!). He talked to me for probably an hour and half. I asked him what could have caused this and his answer was one of the things I've had to cling to since,
"There is nothing you could have done that would have caused this."; and that he "could not write enough zeroes on a page to demonstrate the odds of this happening."
Mark returned to wait with me. We knew in our hearts that we would lose Michael. There was just no doubt in our minds. No hope that they could be wrong. Mark said that while he was with him, Michael's lungs collapsed twice. They had to put in a chest tube, and the doctor was concerned about oxygen deprivation. He just wasn't able to get enough air with his tiny lungs. As much as we hated the thought of losing him, the thought of him suffering hurt more.
At 8:30 a.m. we received another call from Michael's doctor. He talked to Mark. They'd done the second set of tests. The head radiologist confirmed the sonogram results. There were no kidneys and no bladder. The doctor said that made Michael's condition "incompatible with life." (That phrase has stuck with Mark. He says he hears it in his sleep)
We began making arrangements to be with Michael before the ventilator was turned off. I wasn't allowed to be moved, so they arranged to have Michael and the ventilator brought back to me.
Mark called Megan. I thought I could not hurt any worse than what I was - until I listened to Mark telling Megan this baby she'd wanted so badly -- this baby she'd nicknamed "Piglet" and "kissed" goodnight every night and good-bye every time she left me for over 7 months -- was going to die. He broke down several times. We told Megan that we wanted her to come to the hospital with her Aunt Jane and we'd talk about it all again then. They came. And my heart broke even more. The pain in her eyes is engraved on my heart. I felt like I was letting Megan down! She has hated being an only child and this baby she'd so longed for wasn't going to make it. I was her mommy. I was supposed to be able to protect her from being hurt, and yet she was hurting more at that moment than I ever dreamed possible. I kept remembering her words when we'd announced this pregnancy to her. Her entire face lit up and she stretched her arms out toward the heavens and said,
"Thank You! Thank You! Thank You! I've been waiting my whole life for this!" And now... her world was shattering too.
We explained it all to her again as best we could. Then I had them leave me alone with her and I told her about what Michael looked like and tried to prepare her to see him. I explained that he'd come back attached to a big machine that would help him breathe while we all got to be with him a little while. That even though this machine would be connected to him we could hold him and kiss him... she broke down, (the only time she's really cried) and said, "Do I have to see him?" I said "No.... but don't you want to?" She looked at me with her big blue eyes brimming over with tears... and said,
"If I do, Mom, how can I let him go? If I see him I'll just be more attached to him. I'll just love him even more!"
I wondered how much more breaking my heart could do. I told Megan the decision was hers and she could think about it and let me know if she changed her mind. She never did.
Michael was greeted by both grandmas, his grandpa (Mark's dad), all of his aunts, and a couple of our closer friends. We were taken into a special room behind the NICU and allowed to spend time with him while he was still on the respirator. Everyone, who wanted the opportunity, got to hold him. He was passed from one person to the other and back to me between each one. When I play this scene back in my mind it seems so out of kilter. A paradox of surreal clarity. Here we were, cuddling this precious baby, marveling at his beauty and sweetness; and yet, there was not one ounce of joy in that room.
By the time he was returned to us Michael looked a little worse than he had the night before. His lungs weren't able to sustain the right oxygen levels, so he was a bit blue and that worsened the longer we had him. His eyes were bruised. We were told that was from the lack of oxygen. But, to me he was perfect. The tubes and wires and machinery just immediately disappeared when that baby was placed in my arms. The only thing I saw was my precious son I'd waited so long to hold.
After everyone else had gotten a chance to hold him, Mark and I sat with him for a few minutes and I knew it was time to let him go. I'd noticed that even though he was sedated he "sighed". The way small babies sigh or moan in their sleep when they're not feeling well. They kept reassuring me that he wasn't in pain, but I was never convinced. So as soon as everyone had had his or her moments with him, I had the nurse disconnect the respirator. As much as I wanted to just sit and hold Michael and kiss him forever, never letting him go, the thought that he was suffering made me willing to release him. I can't describe the feeling of knowing that once that machine was turned off he'd be gone, but I felt like his "mommy", protecting him a little.
I watched as the nurse and doctor removed the tube. They'd had it taped around his lips. The tape left a bit of residue from the glue, so the nurse dipped a cotton ball in alcohol to remove the sticky stuff. When she put the alcohol under Michael's nose he wrinkled his nose and pursed his little lips. That was the only "normal" baby thing I saw him do.
When she was finished I just sat and held him. I kissed him over and over again and drank in his baby smell! I held his little hands, unable to accept that this precious child was going to be snatched from me.
Michael lived about 6 minutes without the machine. He took 5 breaths. I counted them. Each one was little slower and a little more shallow and then that was it - he was just still.
I remember holding him a while longer and then gently handing him back to the nurse. I was wheeled back to a room. I felt an emptiness that goes beyond description. It took a long time for me be able to say this, to identify and then express this feeling: when Michael drew his last breath I literally felt something being drained from me. I didn't know then what it was, but I learned. It was my joy. For as long as I live I will never feel joy like I did before I held that precious child in my arms and watched him die. It went with him.
Shortly after, one of NICU nurses came in and introduced herself as the SHARE coordinator for the hospital. She explained that SHARE was a support group for parents enduring infant death. She gave me a stack of books and then she said,
"And we have something special for you." They'd made Michael a baby book! It had his birth statistics, a few pictures, and even a lock of his hair.
She told me that she would be the one getting Michael "ready" now and asked if we had clothes in which to bury him. What a question! We'd never considered that. When she saw my look of panic and confusion she hugged me and said,
"That's okay - I'm going to take care of it."
She came back a little later and told me that she'd bathed Michael and dressed him and handed me some pictures she'd taken. There is a woman in Ohio, who has lost babies of her own. She's retired now, and she sews clothing for babies to be buried in and sends them to high-risk hospitals. I never would have imagined. Michael wore a little blue gown with white ribbons at the neck and feet. She'd crocheted a little blue and white cap, blanket and mittens. I will always be thankful for such an incredible act of love and compassion.
We have yet to understand the impact Michael's life and death will have. We have seen glimpses, but the full picture is something I don't expect we will have on this earth. I know that in his short 17 hours and 23 minutes, Michael touched more people, and accomplished more in hearts than most people do with an entire lifetime. The impression he left on my heart has changed me completely. I am not who I used to be. Michael's presence filled the room when we spent our little bit of time with him, and it continues to fill my heart.
I don't pretend to understand why God would allow us to have this precious gift for such a short time, and I certainly don't pretend to "accept" it. I don't believe I have to. I think God understands my pain and bewilderment, and even my anger. I know that He will continue to comfort us as we struggle to regain our footing. When the pain clouds our vision, I know that He guides our steps. He will be our Healer. I know that Michael is with Him, and that one day we'll all be together again, and…
"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain…"
Revelation 21:4
