Sunday, February 5, 2012

Octo Mom, Nightmare Before Christmas, Part 2

WARNING: In order to understand this, please read "Part I" FIRST which is posted below "Part II."

Noah Max Hunsaker was born on December 23, 2006. There was organized chaos of very amazing doctors and technicians around us ready to mark the birth of the smallest baby ever born in that hospital. There is nothing proud about setting that kind of record.

Dr. Eggert and his team were working on Noah furiously and we were not allowed to see him until they got him stabilized. Everyone wanted to know how much he weighed and even an hour after he was born they hadn’t weighed him, there were more important things to do. But Dr. Eggert finally came in and told us that they had gotten him all hooked up and he was breathing about 70% on his own which was fantastic. He told us that the ultrasound predicted Noah weighed more than he did, only 690 grams, just one pound, eight ounces. O.N.E.P.O.U.N.D.A.N.D.A.H.A.L.F. I was expecting a linebacker for the 49ers. I expected him to be tall too and he didn’t disappoint there. He was a full 12 ½ inches long. As long as a school ruler. But they all said that he was much longer than they expected. He WAS a giant.

Dr Eggert told us that when they went to put the breathing tube in, his air hole was much smaller than they expected. They put a piece of metal in the tube to help it go down and as they pushed, they realized that Noah had some tissue that had formed a web over his vocal cords and that they had to break up that tissue in order to help him breathe. I imagine he had quite a sore throat after that. I hate having a sore throat. I felt so bad. But he was stable enough for us to go down and see him, which we did. They let us in the room for about 10 minutes. There was still such a whirl of activity going on, we felt so in the way. But as I stood next to that little incubator I was in shock. He was hooked up to everything imaginable, there was no way we would be able to pick him up for months. His chest was pumping up and down with the help of a tiny little breathing machine and he had on a preemie diaper that was drowning him. The nurses had put a crocheted Christmas hat on him and he looked like he was ready for the circus. “Come and see the miniature man – the tiniest human ever born.” I had a hard time even saying his name. I was so afraid to say his name out loud. I don’t know why. I just choked on it four or five times, but then when I finally was able to get it out, Gillian, his nurse (a ward member of my sister Penny’s incidentally) told me to keep talking to him because his blood pressure and heart rate was going down. I’m not sure if she told me that to make me feel better or what, but that did help me want to talk to him.


I’m not sure if I felt like he was a real person yet, he was so small and so fragile. Andy and I got out of the way and Dr. Eggert told us that they were going to do a bunch more tests because they were concerned that his fontanel (soft spot) was getting hard, and after that we were welcome to come in and sit next to him all day long if we wanted. We left the NICU and got into the elevator and I immediately burst into tears. For the first time in my life, I had to let someone else take complete control of a situation and I could do absolutely nothing. Nothing but pray. I knew there were people in my room and I didn’t want to go back there, I wanted to stay with Andy in the elevator forever. It was all such a bad dream.

But the elevator ride was only one floor. When the doors opened, our good Bishop (church leader), Brad Anderson. was standing there. I went to my room and Brad took Andy aside and was able to speak to him and help him understand this whole thing in a way that shed a beautiful light on The Plan of Salvation, and God's love for us. He told Andy that God's commandment to multiply and replenish the earth had been fulfilled with Noah and that if we were never able to have more children, it was okay. I will always be so indebted to Bishop Anderson. But, I wish I had heard that advice myself.

Andy decided after 24 hours in the hospital and wrestling with a chair all night, he was going to go home and shower while the doctors were doing all the tests on Noah. Since I hadn’t packed a bag or anything, I gave him a list of things to bring back with him. I stayed in the wheelchair and finally got to meet the postpartum nurses and brought in the dreaded BREAST PUMP.


If there was a moment of comedy to be had throughout the day, it was the "breast pump and cotton pony adventure." It was 11 am when they brought in the pump and showed me how to use it. The nurse said it might not work right off the bat since Noah had come so early, but to pump every three hours for 10 minutes or so until my milk did come in. They were expecting to switch Noah over to stored breast milk once he was able to get off the I.V.’s of steroids and antibiotics. Despite the sheer humiliation of the pump – I might as well have been hooked up to a jersey cow machine, I was determined to do what I had to do for Noah and I knew breast milk would help him. We (my sisters and I) laughed so much though, it wasn’t long before the ten minutes was over. It was a relief to laugh.


Everyone at the hospital was trying so hard to be positive. A funny nurse came in and gave me ten complimentary packages of "cotton ponies." I said "huh?" They looked like regular boxes of maxi-pads to me. She said she called them that because they are about "two feet long and two inches thick, and makes you feel like you're riding a horse." I found out that was true and I've never called them anything else since and neither has Andy.

Almost as if on cue, after I had finished pumping, Dr. Eggert entered the room with nurse Gilly. I could tell that Gilly had been crying and I decided not to look at her anymore. I was still sitting in the wheelchair and Penny and JoEllen were in the room with me. Dr. Eggert asked for Andy. But Andy had gone home to shower. I panicked. He said he had bad news. The tests had come back and Noah was not the healthy little boy with an attitude that they all thought he was. Most of what he said was doctor language and I was hanging on to words like, “heart malfunction,” and “ventricle is only pumping 20% in return,” and most importantly, it appeared as if he had “had several strokes because his brain was flooded with blood and the fontanel was increasing in pressure.” They thought the stokes had happened several days earlier and that might be why he had decided to deliver so early. JoEllen later said, “I was expecting him to say they had decided to fly him up to Primary Children's, or something drastic like that, that would fix him.” But he never did.


Instead, he shook his head and looked in his lap and said “this is the saddest kind of advice a doctor likes to give because we are programmed to heal people, but Jan, Noah is a very sick little boy and even if we were able to keep him alive and on machines for the rest of his life, he would have such severe brain damage that he would never function as a human should." In addition, he said, they didn’t expect him to live without the aid of every single pump and machine that he was currently hooked up to. One of the ventricles of his heart had fused itself to the front of his lung and there was no way to fix that problem. Dr. Eggert guessed that if they took him off the machines, he might last a few years, or as little as 15 - 30 minutes on his own. His advice was to spend a couple of hours with him, hold him, talk to him, and then let him go. He said he would wait for Andy to return and for us to make a decision before he did anything, but that they would keep him alive as long as we needed.



As long as we needed him to be alive? I needed him to be alive forever! Was I dreaming this? Was this actually happening? Was I being asked to pull the plug on the baby I had dreamt about, prayed for, for sooooo many years…and now I had to decide to take him off his life support and let him turn right back around and go back to his Heavenly Father. I couldn’t do it. Where was Andy.



At that point, the four of us in the room, Penny, JoEllen, Gilly and I, burst into tears and I only remember looking at my knees after that.



JoEllen had already called Andy who was mid-shower when she told him, through tears that he needed to get right back. Andy said later that he felt a presence near him telling him that it was going to be okay. And at that point, Andy knew, nothing was ever going to be the same or normal again. He raced back to the hospital and Penny and JoEllen left the room while I repeated everything Dr. Eggert had told me.



Andy arrived and my sisters left us alone to make a decision that ordinary humans should never be allowed to make. We decided that he didn't deserve to live life in a bed just because we were too attached to him. We would have the doctors take him off the machines. We felt a peace enter the room and I was able to stop crying. We asked Dr. Eggert if we could give him a name and a blessing (a Mormon prayer for new babies) and could he keep him alive for 4 more hours while our parents drove like maniacs from Northern Utah to participate in that ordinance. Dr. Eggert agreed. He also told us that Noah had grabbed on to his feeding and breathing tubes and had pulled them out twice. They were going to have to tape them to his very thin skin, which is something they hadn't wanted to do. Were we okay with that? I was affixed to the thought that he was capable of grabbing his tubes and pulling them out, not once, but twice. The decision was easier for me after that. Noah wanted to go home.


At 27 weeks, sometimes a babies eyelids are still sealed shut like a little puppy. I could swear however, that when I was talking to him, at times, he was trying so hard to open his little eyes. I could see his tiny eyeballs rolling around in there and I wished so badly, that I could see his eyes. That night, as I was in my drug-induced coma of sleep, I dreamt that I was holding him and he looked up at me with open eyes. I was so grateful for that dream. He looked like Andy and my brothers. I still see his navy blue eyes very clearly and remember the weight of him in my arms like a normal baby. I hope I never forget that dream, it was the greatest Christmas gift I have ever received.



We called our parents and siblings and to no one’s surprise, they all got in their cars and headed down to St. George. It was four hours exactly from the first phone call to the time all those priesthood holders started arriving. During the wait, Gilly let me hold Noah. She pulled my gown down so that she could lay him directly on my skin over my heart and up near my neck. We stayed in that position for more than three hours. He started breathing more on his own and his blood pressure stabilized during that precious time. I just plead with Heavenly Father to heal him. I begged for help. I begged for a miracle. People told me about their miracles. Weren't there miracles for me? I had waited so long. Eventually, I felt that familiar feeling of the Spirit wrapping his arms around the two of us and giving me the peace that he so often did. I was going to be okay. Andy was going to be okay. Noah was going to be the luckiest of us all. I saw the big picture laid out before me and suddenly I felt ashamed of myself for wanting to keep him and it helped me give him back.



My brother-in-law Kyle, who is from St. George, gave me the most beautiful blessing. It sank deep in my soul. I’ll never forget it. I know he was nervous to give it, but it was exactly what I needed to hear. He said “. . . you will not be able to care for your baby like a normal mother will – you must accept that he will be whisked away from your arms back into the loving arms of his Heavenly Father whose plan for Noah is so great that he must return as quickly as he came…” He blessed me with the power to heal, the power to use this experience to increase my spirituality by always keeping the “big picture” in mind and not my personal pain. I will always be grateful to Kyle for that incredible blessing. I have seen the result of it day by day.



Our other brother-in-law, Penny's husband Joel, gave Andy a blessing and it was very similar, promising him great peace. I remember one thing that stuck with me in that blessing and that was that Andy would be given “blessings beyond his imagination” for the sacrifice he was making that day. That made me smile, because by then I was looking for any piece of humor in the day and I imagined that Andy would be requesting a house with a pool and front row tickets to a Coldplay concert in heaven.


Andy was really stressed about what to say when he would shortly give Noah his blessing. Joel blessed Andy with peace to give that blessing. When my dad arrived, we pulled him out into the hall to ask our senior patriarch what to say. Andy was just shaking. Dad said only one thing. “the Spirit will direct you.” And that's exactly what happened.


It was beautiful to see Noah's two grandma's in the room. I am so eternally grateful that God allowed him to stick around long enough for his grandmas to see him. They tried so hard to "keep it together" for us. I know there were great tears from Andy's mom because this was to be her first grandbaby and she was almost as excited as I was. She had such sad eyes that I had a hard time looking at her. I felt like I had failed her. She said "I'm a grandma!" and I'll never forget that.



Once we had gathered nearly every member of our amazing families, everyone was allowed into the NICU, we stuffed about 20 people into that tiny room and the priesthood holders gathered around and very carefully“laid their hands” on Noah’s tiny head and gave him a name and blessing. Andy thanked him for his short visit and blessed him with all the rights and honors afforded to someone that does not get to fulfill a normal life here on earth. He told him he loved him. How is it possible to love someone so much that you barely know? That you will not get an opportunity to know in this life? Yet still today, as I walk past his picture every day of my life, I say “I love you Noah,” in my head and I feel like a mom for just a second.

After the blessing, the family moved into a nearby waiting room and Andy and I said goodbye to Noah. Gilly came in and unhooked Noah from all of his tubes and we gave him a bath. Just 30 minutes after that, with his quarter inch hair all slicked back and ready, he returned to his Heavenly Father. I felt a deep peace come over me as if someone from beyond the veil was saying “thank you.” We carried his little body into the waiting room and both grandma’s got to hold him, finally. It was done. The whole ordeal…from the first time I had thrown up (in the parking lot at Tuacahn) to signing the release papers at the hospital, it was done.

I will always be eternally grateful to my brother-in-law Adam, for agreeing so graciously to take Noah’s body back to Lehi, so that we could bury him near his Aunt Katie. Grandma Hunsaker held onto the chest they had put him in and wrapped him in the crocheted blanket they brought Andy home in when he was an infant. The good people at Wing Mortuary in Lehi prepared his body and put it into a white casket the size of a shoe box. We buried him next to my little sister Katie, in the other half of her plot, since she too, was in infant when she died. We held a little graveside service on December 29th. My brothers sang "Be Still My Soul." And I needed that.



My brother Steve, who has always had a very close connection to the “other side” said that when the grandkids had let off the blue and white balloons at the end of the graveside service, he heard his sister Katie say “Okay Noah, it’s time to go.” Steve was so overcome with the Spirit that day that it was like he was in another place. He has a keen sense of the spirit world and keeps those things mostly to himself. But I was so grateful to know that Katie was around, helping Noah. It still makes me so grateful to my parents for allowing us to use that special gravesite. I can’t wait to get to know Katie and Noah.



I had a baby. I didn’t dream it . . .

He was here, he came in just like any other baby, but he left us all too soon. Just twelve hours later. Got his body and then left it in this world for us to bury.


He had feet, eyebrows and a hair line exactly like his dad’s. But that was just about all we could tell – so tiny and coming from such gregarious, giant-like parents.



I waited 41 years to find the right man to marry, though I had other opportunities, I just knew it wasn’t to be and marrying my best friend at 41, well – finding a single worthy priesthood member at that age was my miracle, let's face it. Andy is the greatest blessing of my life. But by bringing Noah into this life fulfilled the measure of my creation, and as much as I spent 41 years trying to convince myself that I was a “whole” human being, despite being a single one, I now see why my married-with-children siblings were so ecstatic when they found out I was pregnant.


I tried for a long time to understand why I needed that piece of adversity. Why did someone like me, who wants babies so badly, have to go through that? But the whole experience humbled me. I may have needed it. What really humbled me was wrapping my boobs for two weeks while my milk dried up in the middle of winter, that was fun. Cotton ponies humbled me. Not being able to walk for a week humbled me. Why didn't I get off that epidural sooner? Going back to school after the break humbled me. I guess I needed to be humbled.


It frightens me, because now that I have been a mother for a few short hours, I want to be a mother more than ever…but is it wise? Could it happen again? Could I give another one back? Could Andy? Might we also be able to conceive again, a baby that can grow up and that we can get to know… or are we just being selfish? Oh, "motherhood is relative." They are all saying it. "You are already a mother to so many." Too bad I don’t believe it, at all. That's something I wish people would stop saying. Learn this from me...don't ever tell a teacher "but you're already a mother to so many people..." I know you are searching for the right thing to say...but don't ever say that. Say "SHIT!" or "Damn it! I wanted that for you too..." but don't try to put it into perspective. I've got the perspective down. And it doesn't make the pain go away.

My testimony/perspective is this… Noah is mine forever. I will raise him in the next life and I believe that with all my heart. I have felt his presence and I know that he knows I'm his mom. The lessons I have learned about seeing the bigger picture, put my Heavenly Father’s sacrifice into perspective. If I grieved at the loss of an infant I didn’t know, how much more was the grief of our Heavenly Father at the crucifixion of His Son, also a premature death he could not stop even if he wanted to. This is my ultimate testimony: that God lives. That He gave is Only Begotten Son back to us for the remission of our sins so that we too, may return to live with our families forever. No amount of miscarriages can take this true knowledge away from me and each one strengthens my resolve to be a better person so that I may earn those rewards. How great are the rewards that await me if I can keep my perspective, hold to the truth that I know and keep my head on straight and my heart in check, as I continue to find out who I am and what God expects me to do. I don’t feel sorry for myself, just increasingly indebted to the Savior for His love and intercession on my behalf. How can I not?


When we left the hospital with nothing but our bills and free boxes of cotton ponies, it was midnight on Christmas Eve... The streets were silent. All I could think about was that I wished there was some drunk driver out that could hit and kill us. But there was no one. Just my luck. So I started a new prayer, that Jesus Christ would make his second coming sooner than later... and I've been praying for that ever since.