Drew's last day

I will start off saying that this is going to be long and I may ramble on. I have tried to keep things in order but then I get another thought that I want to get down so it might wander in some areas. I know that I repeat some things that I’ve already written about but bear with me, this is something for me to keep as well as post. And I know that my use of different tenses and run-on sentences is horrible grammar but I was typing as I thought of things. Writing everything out as it comes to mind tends to go like that. And writing things out is my free therapy, it always has been. I just decided to copy and paste it without proofing it again.

~~~~~~~~~
Written Sunday, April 16, 2006 through Tuesday, April 18, 2006
~~~~~~~~~

This all seems so surreal at times. Like, this can’t really be our life, can it? There have been times that I feel like I’m on the outside looking in and then it hits me—this is real and it IS our life.

I feel as though my heart has been ripped out; how could I have carried such a beautiful child, given birth to him and now he’s gone? That’s not supposed to happen. I am sad beyond all words but also happy that Drew’s struggles and suffering are at an end. We are confident that he was never in any pain. My arms just feel so empty; I should be holding my son, not writing his death story. I can now say that the worst thing in the world has happened to us; nothing aside from something happening to Elizabeth could ever hurt like this.

We had known for about a week that things with Drew were bad. We are not stupid people nor do we kid ourselves and hide from the reality of situations. But even knowing that, one is never ready to make the decision that we had to make this morning—will our son live or die? It was (somewhat) up to us. Saturday night, we left the hospital with both of us feeling that Easter Sunday would be the day that Drew would leave us.

On Saturday, I did the hardest single thing that I had done up to that point. I went shopping for something to bury my son in. I did pretty good and did not break down until my mother, Elizabeth and I were leaving the mall. Drew has a pale blue “spacesuit” (as Elizabeth calls most baby clothes since we call her footed pj’s spacesuits). It’s actually a 2 piece outfit with star buttons, blue and white braided satin trim and a pocket with a puppy dog that says, “Take me home.” Here it is: . I also got him some pale blue and white oxford look crib shoes. He is wearing an onesie and socks that Elizabeth wore. Why I just described that in so much detail, I don’t know. But he looked so handsome in his first outfit. Raymond and I bathed and dressed him together after his death.

Sunday morning, I went to see Drew for my morning visit. His nurse, Darlene, had just drawn a blood gas on the request of Dr. Mantor, Drew’s surgeon. He was having difficulty keeping his pre- and post-ductal oxygen saturations up—they were in the 60s and 70s. Dr. Mantor had turned up the amplitude on his oscillator from 5.0 to 12.0, a substantial increase, to see if that would help his gasses. It did not help; his numbers got worse. Drew’s urine output was back to 0-1 cc. I called Raymond and told him to get up to the hospital (remember, we’ve been on-site every night since Drew was born so he was only a couple of minutes away) because the doctors were there and would be coming back through to look at the latest blood gas.

Raymond arrived and shortly thereafter, so did Dr. Mantor (surgeon) and Dr. Garza (neonatologist). We sat down in the hallway and heard the words we knew were coming but still dreaded. Drew was not getting better, he was getting worse. We needed to make a decision on how to proceed. There were two options. 1) We could stop all of his medication and disconnect his vent. Dr. Mantor told us that he felt that Drew would die immediately after disconnecting the vent. 2) Or we could continue doing what we were doing; there was nothing else to try. He was very compassionate but frank and honest when telling us this, which I appreciate.

Raymond and I did not even have to talk about it—we knew what our decision was. Drew fought so hard for five and a half weeks and we (parents and medical personnel) had done all that we could. Drew was tired and it would be out of selfishness if we continued treatment.

Drew is the strongest person I have ever had the pleasure of knowing—talk about a tough little boy! He overcame what many people and children never do: birth, going on and coming off of ECMO (1 in 3 survive that) and extremely major surgery.

Drew taught me a lot about life in general—unending love, toughness, what being a fighter is all about, the list is endless. He is an inspiration to me. Drew was a very special boy whose story has touched so many.

I guess I should expound on why dialysis could not be done. Hemadialysis could not be done (what was done on ECMO) because the cannulas could not be reinserted. The arteries would have just crumbled and I’ll just leave it at that. Another kind of dialysis (name escapes me right now), the more traditional kind, could not be done because there was simply no room in his abdomen after surgery to insert the lines to his kidneys. The way his body developed prior to birth with a large chest cavity and small abdomen left little room for the correct placement of organs, much less anything else. Add to that his urine output went from levels of around 100 cc’s down to 0 cc at the next collection so his kidney function drop-off was actually fairly fast and they never picked back up. The kidneys could never pull off all of the excess fluid alone but when Drew’s urine output dropped to 0, it was impossible. Even lasix and albumin did not help.

It was around 9:30 a.m. when we informed the doctors of our decision. Shortly thereafter, Raymond signed a DNR for Drew. We had decided to delay taking Drew off of the medicine and machines as my father-in-law had gone back to Kansas in the morning so he had to turn around and come right back. We figured that Drew would be removed from everything a little after 1:00 p.m.

In the meantime, we got to spend all of that time with Drew—I never left the NICU. I cut a lock of his hair, made hand and feet imprints in clay, a cast of his hand, etc. We have so many little things to remember him and it was nice to spend the time with him while he was still alive. His nose was “runny” and his mouth had to be suctioned frequently because his edema had gotten to the point that the fluid had to come out somehow. That’s how bad it got. After death, fluid seeped out of the areas that his IV’s were inserted and what not, even his surgical sutures were weeping.

Our timeline got a little off track because we kept thinking of things we needed; a larger memory card for the digital camera and things like that.

The NICU staff was beyond wonderful in all that they did for us on Sunday and since Drew’s birth. So many of his nurses came by and cried with us, each telling us how big of an impact Drew had on them and how fond they were of him. His very first nurse, and the head of the ECMO program (and teacher for the other nurses learning ECMO procedures), the one that was with him before and after his surgery, Bonnie, was an amazing comfort for me. She kept stopping by to see him, hug us and cry with us.

Darlene, the nurse who had cared for him during days this past week during his most difficult times was his nurse on Sunday. She went above and beyond what she had to finding us so many things to serve as mementos and helping me make casts and imprints of Drew’s hands and feet. She made it possible for me and Raymond to hold Drew while he was still alive, no easy feat when the baby is attached to an oscillator. She was just all around fabulous, as were all of the nurses who stopped by and offered hugs and words of comfort. She even turned on the bed warmer in preparation for us bathing him so that he wouldn’t get cold. The small things like that really touched me and I noticed them. Even though he was gone, she knew that we would want him warm.

The hospital chaplain was wonderful as well. He assisted us and prayed with us over Drew. He performed Drew’s baptism, which we videotaped, shortly before his death and assisted us with the funeral home afterwards. I told Raymond that I would *not* have Drew going to the morgue so the poor guy had to kind of scramble and find a funeral home. Did you know that you have a choice as to whether or not to have a body embalmed? At least you do in Oklahoma. I’d never really thought about it and I guess that I assumed that embalming had to be done.

The nurses and chaplain were very honest with us; after death, Drew became our property and we could have taken him home with us if we wanted to do so (might just be an Oklahoma thing, I don’t know). Don’t think I didn’t consider running out of there with him. I know that both grandfathers asked the grandmothers, “Do you think she’ll let go of him?”  The answer was, not very willingly. That is the single hardest thing I’ve done throughout it all—physically letting go of Drew and watching him leave with someone else. I had dreamed of the day that we would be the ones taking him out of the NICU.

Elizabeth had the opportunity to say goodbye to her “baby brudder Drew,” as did all four grandparents. I’m grateful for that. I’m also glad that I took pictures of Drew morning, noon and night. He changed so quickly, much more so than a “normal” baby and now we have so many pictures to remember him. He was truly an amazing boy.

Being able to hold Drew while he was alive was heaven. His chest tube was cut and clamped off, his central line clamped and all IV’s and everything else taken off except for his vent tubes. The nurses placed him in my arms and I just broke down. If you have ever been a nursing mother, you will understand the tremendous let down of milk that I experienced the instant he was in my arms. After having supply issues because of stress and not cuddling with him and never having a true let down, it was very bittersweet. Everyone left the room and closed the doors and let us be alone with him (aside from the nurse caring for his roommate, but she was very quiet and stayed across the room) until we were ready to have the ventilator disconnected. (Ready?! You’re never ready for that.)

Raymond and I feel that he probably *really* died prior to disconnection, when one of us was holding him. The only thing keeping him alive was the ventilator. But he truly did pass away in my arms when his vent was disconnected by the respiratory therapist. Poor Drew was so tired (and still had paralysis medication in his system) so he didn’t even attempt to take a breath on his own. It was all very peaceful. Then the resident listened for a heartbeat and pronounced, “He’s gone,” at 3:29 p.m. As soon as the doctor said that, I felt an enormous sense of peace descend over me. Don’t get me wrong, I’m angry; VERY angry but feel a sense of inner peace as well.

Darlene then came over and removed Drew’s ET tube from his throat and cleaned up his face while I held him. I finally got to see his entire face. It was no longer obscured by the ventilator tubes and tape. Raymond saw him quickly in the operating room after he was born but I had never seen his entire, unobstructed face. He was such a beautiful baby.

Drew’s official cause of death was pulmonary failure (pulmonary hypertension) and renal failure (kidney). We decided on no autopsy; we know what happened overall and that is enough for us. We know how a lot of “smaller” issues all converged to cause Drew’s sudden decline and death.

A few weeks ago, the vent tube rubbed his upper lip and there was a small sore. It healed quickly and he had a barely noticeable scar from it. It was not noticeable until all of the tape securing his vent tubes was removed. Along with the 5 sutures on his neck from ECMO and the 17 sutures on his abdomen from his big surgery, he would have had quite a few scars and stories to tell!

After Drew’s death, the chaplain did all of the work to see if Drew would be a candidate for organ donation, something that both Raymond and I wanted. We knew that due to his condition and being on ECMO, he probably would not qualify (and he didn’t), but we tried. If he could have helped another baby, we wanted him to do so.

After he passed away, we were given as much time as we wanted with him. I guess we spent about 4 hours with him. But I wanted to spend the rest of our lives with him, not a measly 4 hours. Raymond and I together bathed and dressed him. I changed his diaper for the first time and wouldn’t you know it, he had pooped in it a little bit for me!

Raymond and I both spent time alone with him and time together as a family—just the three of us and along with Elizabeth. She finally got to hold her baby brother. She said he was very heavy! She also noticed the star buttons on his “spacesuit” and sang him “Twinkle, Twinkle Little Star.” She did that all on her own and we have that on video. When she was done, she stroked his head and said, “He’s precious.” I’m so proud of my baby girl; she is mature beyond her years.

A great comfort to us was the fact that the hospital has a place called Aikman’s End Zone. You can read about it here. Throughout Drew’s stay in the NICU, Elizabeth would spend time there with the child life specialists just playing and doing various crafts. She really loves that place. While we were with Drew all day on Sunday, Elizabeth spent some time down there but they closed fairly early. So one particular child life specialist came up to the NICU waiting room and played with Elizabeth for 3 hours after her workday should have ended. Talk about going above and beyond, Whitney certainly did that.

She also left us with some books on how to explain death to a 2.5 year old that have already been very helpful. Elizabeth knows that Baby Drew was very, very sick and that Mommy and Daddy and the doctors and nurses tried as hard as they could to make him better but that it did not work and that his heart stopped beating. She knows that Baby Drew has died. Now, putting that all together with the proper meaning is a little advanced for her but that is the way this has been presented to her. No euphemisms such as “passing away, in God’s arms, sleeping, etc.” have been used. We don’t want her to associate sleeping with never coming back for obvious reasons and other cliché sayings just don’t mean much to a toddler and can confuse them.

During the time I was with Drew after his death, I told him that his job now is to look after his big sister. She’s a bit of a wild child, very energetic (not bad, just spirited), so he needs to be her conscience and guardian angel.

We waited with Drew until the funeral home came for him. They carried him out in a little basket, no gurneys or body bags. It was very touching. I swaddled him and we put him in the basket. Then we left the NICU. That was so difficult.

We really want Drew’s funeral to be a celebration of his short life rather than a mourning of his departure. Our family—Raymond, Elizabeth and myself—will all be wearing blue for him. We want it to be a casual ceremony. I will more than likely break down, it happens with no warning. There is a piece of my heart missing now. I will forever be a mother of two, Raymond a father of two and Elizabeth will forever be a big sister to her baby brother. It will be a closed casket with no viewing. Drew was horribly swollen and that’s not the way that I want people to remember him. As a parent, I only see my beautiful baby but I am aware that his appearance may shock others. He deserves to have his dignity.

We set up a fund through the hospital volunteers (another wonderful group of people) called The Drew Lewallen Fund. Through this fund, Raymond and I are able to direct where we would like for the money to go within OU Children’s Hospital. The two areas we have decided on are the NICU where Drew was cared for and Aikman’s End Zone. See my earlier post for donation specifics.

Drew will be buried with his Daddy’s magnetic bracelets. Raymond took them off the day that Drew was born and they have remained off the entire length of Drew’s time with us. He will also be buried with one of my wedding bands. I took it off the night I was admitted to the hospital to induce his birth and put it back on this past Saturday. It’s a symbol of the love between Raymond and I and the love within our family and for our children and I want him to have it. A picture of our family of four will also be included with him, as will a couple of his many stuffed animals (probably his turtle from Elizabeth).

The day that Drew was born, Bonnie, his nurse gave me a small flannel blanket that we mostly used to cover his eyes so that light would not hurt them. Sometimes he’d be holding it. You can see it in many of the pictures that I posted; it is yellow with animals on it. It was Drew’s “Mommy blanket.” It came with the following saying:

Mommy, keep this blanket close
While we must be apart.
Think of me until we can be together
And hold this close to your heart…
Then, when you can come to me,
Bring this blanket with your scent,
And I will be comforted
Knowing my Mommy’s love is sent.

Periodically, I would sleep with it on my chest and bring it back to him so that he could always know that I was close to him and that he knew my scent. I have not decided if I will bury it with him yet—I might want it buried with me when my time comes.

I was cross stitching a blanket for him. I’m sad to say that I never did finish it but I will complete it and present it to the NICU. Along the walls of the NICU are quilts and blankets that other families have made in memory of their babies. I was going to bury the unfinished blanket with him but I want it to bring joy to others; Elizabeth really enjoyed walking the halls of the NICU and looking at all of the blankets.

For those that do not know, Drew was a planned baby. He was so wanted and loved by his father and myself. I can remember clearly the moment I discovered that I was pregnant; my first thought was of absolute joy! In the next instant, like something slamming into me, a feeling so strong hit me. I just knew that something was wrong with the baby. I cannot explain it, I just KNEW. I even told Raymond and my parents about my feeling before the ultrasound where we found out about his condition. It’s kind of like the feeling I had on Saturday; that feeling that Sunday was the day we would lose Drew. Don’t ever discount a mother’s intuition, even if it sounds crazy.

Drew was to be our last child. My body does not like being pregnant. I may change my mind at a (much) later date, I have not ruled it out. No child can ever replace my Drew.

I feel the need to say to those we know that are currently expecting a child, please know how truly happy we are for you! Every child is a blessing and we feel nothing but joy at knowing our family and friends are having healthy children. I may have difficulty seeing a pregnant mom-to-be or a new baby but that is my issue to overcome and in no way reflects on the deeply heartfelt happiness I have for each parent and child.

To those that have children, cherish each moment you have with them. There is nothing greater in this world than the love of a parent for their child. Please, take nothing for granted. Do that and everything will be ok.

I want to say thank you to so many and yet thank you is not near enough. To Drew’s grandparents—Jerry and Linda M. and Larry and Judy L., thank you for all that you have done and continue to do. I don’t quite know just how to let you know how much we love and appreciate you. There’s nothing we can ever do to repay your kindness.

All of our family and friends are wonderful so thank you! Even those we don’t “know” in real life have brought us so much comfort, it’s difficult to understand how you can love people you don’t know. Drew was loved by so many people and we know that. His story, I hope, has touched and educated people.

To all of the families who have battled, will battle and continue to battle this horrible condition with their own children, you’ve been a source of inspiration and comfort for me. I’ve met some truly amazing people via an online support group called Breath of Hope. The stories of your children have helped me, made me laugh and smile and cry.

Big thanks go to Raymond’s workplace. The kindness and generosity we’ve seen have blown us away. Allowing him to telecommute throughout this journey has helped more than anyone can ever know.

And finally the NICU staff and Drew’s team of doctors at OU Children’s Hospital in Oklahoma City. I don’t quite know what to say, you have become family to us. We know how much you cared for Drew, both his physical and emotional needs. Having you all there made it a little bit easier to have to leave him everyday. Knowing how hard you fought to save him touches our hearts and there is no adequate way we can thank you. We hope that you all enjoyed the flowers in memory of Drew, it was the very least that we could do to show our appreciation. If anyone has any suggestions on what we can do for them, please e-mail me at jana.lewallen@gmail.com .

One good to come out of Drew’s journey is that there is almost 6 weeks of breastmilk stored and I will be donating it via the Ft. Worth milk bank. It is my greatest hope that my donation can make a difference for babies across the United States.

Drew’s online obituary in one of the newspapers can be found here. I think that it was put in 4 papers. I know the Edmond paper got everything wrong.

(Just a side note, there are 2 kinds of ECMO, VV (venovenous) and VA (venoarterial). Drew had VV where there is no cardiac support to help circulation and it requires only venous cannulation. In other words, Drew’s heart was always functioning well and he didn’t have to have cannulas in his arteries, just the veins. This type of ECMO support is preferable to VA ECMO because the support from the machine is not as great. Drew was placed on ECMO due to pulmonary hypertension, where the ductus arteriosis in the heart does not close and allow blood to flow to the lungs. Here is a diagram of what is going on in the heart with PPHN. For more information on ECMO, you can visit this website, this website, this website and for an easy to understand diagram, visit this website. ECMO is very interesting to me, if you can’t tell.)


April 21, 2006

Drew’s birth certificate arrived in the mail the day of his funeral, April 20, 2006. It was waiting for me when I got home from burying him.  Now I await the arrival of his death certificate.

There was also a solicitation from a monument company wanting to do Drew’s headstone waiting in the mail the day of his funeral. Pretty tasteless in my opinion.

Elizabeth is so smart (I know, all mothers think this, but she really is). We’ve always told her that the batteries in her toys are “dead.” Today she told us that, “Baby Drew need batteries.”

The day of the funeral, she said, “Look at all those grapes (graves)!”