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Friday, May 6, 2011

05-06-11 / The Fight of His Life….

05-06-11 / The Fight of His Life….

To say that this weekend was the best weekend of my life and the worst weekend of my life is about the only way to describe it. Let me share a poem with you that my dad reads at every single funeral he has the honor of officiating.

I read of a man who stood to speak at the funeral of a friend.
He referred to the dates on her tombstone from the beginning to the end.
He noted that first came the date of her birth
And spoke of the following date with tears,
But he said what mattered most of all
Was the dash between those years.

For that dash represents all the time
That she spent alive on earth
And now only those who loved her
Know what that little line is worth.

For it matters not, how much we own,
The cars, the house, the cash,
What matters is how we live and love
And how we spend our dash.

So think about this long and hard;
Are there things you’d like to change?

For you never know how much time is left
That can still be rearranged.

If we could just slow down enough
To consider what’s true and real

And always try to understand

The way other people feel.

And be less quick to anger
And show appreciation more

And love the people in our lives
Like we’ve never loved before.

If we treat each other with respect
And more often wear a smile,

Remembering that this special dash
Might only last a little while.

So when your eulogy is being read
With your life’s actions to rehash

Would you be proud of the things they say
About how you spent your dash?

The remainder of what I will sit here and write will be a detailed description of how my son spent his dash. Let me say that I have never been so proud, not proud of myself, but proud to be the mommy of such a strong warrior. He never reached an age where he could ask himself if he would be proud of the things that are said about how he spent his dash, but this mommy will defend his honor until the day I die. He was a fighter, a lover, a snuggler, a peaceful reminder of what love really is, and above all a pure and innocent soul; never did anything to bring dishonor to our Heavenly Father. I truly believe my son’s life has forever changed the lives of many, but his daddy and I will never ever be the same.

This journey has been a long one. Finding out January 5, 2011 that our son was going to pass away has led us down a long road of ups and downs. There were days that waking up and functioning just weren’t an option and there were many days where we just celebrated the life we had with him from January 5th until now; there were far more of those days than sad ones. The closer we got to delivery day the more anxious we both became; Aaron was in far worse shape than I was. I truly felt that his birth and passing would serve as some sort of closure; after all, we already had that gut wrenching blow of, “I’m sorry but your son will not be compatible with life” and I felt this was just going to heal this wound that has been open for several months now; I have never been more wrong. Aaron was right, it was just as gut wrenching, and even more so, to watch him fight so hard and eventually pass.

We got up Friday morning around 4am to get our big day started, we had to make it to the hospital by 6:30 and drop Aaden and Mia off to Lauren and Shane before we could head to the hospital. Apparently 4am was not early enough because we ended up running late, go figure, story of our lives. When we got to Lauren and Shane’s house we saw that Casey was there waiting on us, she is our amazing friend that took the breath taking photos that everyone has been able to enjoy. She wanted to capture things from the beginning to the end. I could tell the mood was heavy when we walked in, Lauren tried to put on her happy face and spoke playfully to Aaden but I could see right through all that. We have all held it together when we’ve spoken of Thomas, but this day was so different. I simply looked at all of them and said that we were all going to be alright, this has been a tough road for everyone; still is.

We finally made it to the hospital and I don’t recall what time it was, I just recall it wasn’t on time. Aaron, Casey and myself all walked swiftly into the hospital where our whole family was sitting and waiting, I was shocked that they were on time to be honest. We hustled to the elevators and Casey quickly said that the ones we were standing at didn’t service the 3rd floor so we needed to follow her to the ones that did. Long story short, we get all of us on one elevator, the door closes and starts beeping loudly. I am mortified of being stuck in an elevator so I began to panic a little. We pushed the buttons again and still, loud beeping; it was then that someone noticed the sign on the wall of the elevator stating that these particular elevators weren’t in service and directed us to the original set of elevators; a much needed moment of comic relief but made us even later. The good news is, we made it! We got to the 3rd floor and into a pre-op room quickly. They started shoveling fluids into my IV and one nurse shared with me that we had to pump them quickly because we were behind; she didn’t see the humor in the fact that I’m late everywhere I go.

As Dr. Sherman promised, she was already there when we arrived. Lanie was there too!! Most doctors show up for surgery time, get the baby out, stitch the patient up and leave; she was there from start to finish. She had already briefed everyone involved about the situation we were all about to face and the staff members at St. Elizabeth hospital took control and treated me like a princess. Not only was Dr. Sherman there for me as my doctor, she was there for me as my friend. As we were all sitting in the prep room, and we knew the time was drawing closer to be wheeled into surgery, she is the one that asked if we could pray over Thomas and all of the lives he would touch; what an amazing woman she has proven herself to be.

I was doing ok, Doug, the sweet guy that was going to gently insert a needle into my spine to ensure that I wouldn’t feel any pain, came in with his camouflage bandana on his head and went through all the typical questions with me. He shared with me that if there came a point during surgery that I felt too anxious there was a drug he could give me to take the edge off, but he could not administer it prior to surgery. Apparently Doug was the one staff member that didn’t get the memo of what was about to happen and when he left my room he returned about 3 minutes later to let me know that he was sorry he said he couldn’t administer it prior to surgery and if I wanted it right at that moment I could have it. Clearly someone outside that door filled him in on what was to come. I asked him if I would remember everything to which he quickly said that I would not, that this particular drug causes temporary amnesia; no thank you! I wanted to remember every part of every second of that delivery.  

The moment came, the one where they say they’re going to take me back to prepare me for surgery and would call Aaron in when it was time to deliver our son; the tears began to fall, completely uncontrollable. I sobbed the entire way to the operating room and from that point on I was a total mess. They wheeled me into that freezing cold room and put me onto my table. I was shaking violently and sobbing so administering a spinal was as eventful as you would imagine. They kept telling me that I had to relax, I had to put my shoulders down, I had to try to stop crying and I had to hunch over so he could find the correct location to put the epidural in. All that kept running through my mind was the fact that they were about to do the one thing that was going to take my baby away from me forever and I wasn’t ready for that. No matter how much I hate being pregnant and how much I complained over the last 36 weeks, I was most certainly not ready for that moment. While I was in such distress, Dr. Sherman was right by my side, there to comfort me; thank God. They finally got the spinal handled and got me situated, I began trying to talk to myself quietly and prepare myself for the worst. Everyone had given my baby 6-8 hours to live, and even that seemed a little bit far-fetched to them. They really didn’t think he would live that long, but that was the estimated time they gave me. I had been telling everyone that I knew we would have him until Saturday, he was too strong inside of me to give up within 6-8 hours, but I began to doubt that maternal instinct the more I heard the words, 6-8 hours. As I laid there by myself, waiting on them to allow Aaron to come in, I kept running through what was to come in my head. How would I share him with all the people that love him? How will I be able to take my eyes off of him for one second? How will I react when he leaves me? How is Aaron going to handle all of this? These questions were never ending and somehow I asked these and many more of myself in about an eight-minute time frame, not only asking them but attempting to answer them in my own little way. Dr. Sherman leaned over and quietly asked me if I felt anything, which I knew meant, “we have already cut on you a bit and you haven’t screamed yet, but I’m just checking to make sure”, and when I said no she said, “ok, we’re ready, you can let Aaron in”. I will never forget her words or the tone of her quiet and calming voice; I wasn’t ready at all!

When Aaron walked in I felt relief and anxiety at the same time. I’m one of those people that likes to shield everyone from pain and for some reason I just felt this was going to be too much for him to handle. He did so well, I was so proud of him at that moment and throughout the entire weekend. Did he cry? Yes! But I am the proud wife of a man that loves his family, he loves his children more than life itself and this was killing him. Men like to fix things; he couldn’t fix things this time. His tears held a little joy and a little sadness, as did mine. We were so ready to finally meet Thomas, but we were so unprepared to let him go. We have had 4 months to prepare for this very moment and I had never felt so unprepared in my life. I felt more of this c-section than I did with Aaden, I attribute that to my level of stress and anxiety. I don’t think the numbing medicine worked as well since I was so overrun by stress and heartache. I never felt her cutting on me but I could feel everything inside, not just pressure, there was pain. I tried not to complain because I didn’t want them giving me any additional pain medicine that might make me sleep; I just toughed it out and tried to enjoy my precious time. I knew the moment he was born, I remember telling Aaron, “he’s out, he’s here”. With Aaden I knew the moment he was born because at that moment I could actually breathe again; I knew with Thomas because I felt him being pulled from my body and that’s a feeling I will always cherish.

It seemed to take forever for them to get him over to me. They were cleaning and weighing and measuring, but I just wanted to see him. I was so jealous because Aaron could see him and I couldn’t. I just kept asking him things like, does he look ok, is he breathing, is he alive? He just calmly said he looks ok and yes he is breathing. Finally I heard him cry, I lost it! Sweetest voice I have ever heard! I can still hear it. The nurse came around and said that she would get him to us as quick as she could but she had to go find him another hat, the one we had brought was way too big. I had no idea they would be too big because the only other baby I had ever purchased hats for was Aaden and the hat we brought to hospital for him almost cut off all circulation because it was too small. We all have big heads in this house so I was shocked that he would need a tiny hat. This is when they shared with me that he was only 4lbs 7oz and 16½ inches long!!! I couldn’t believe my ears!! Aaden was 9lbs 1oz and 20½ inches long, how in the world had I made such a tiny baby? I had to be reminded that he was 4 weeks early, but I think it shocked Dr. Sherman too; she said she thought at least 5½-6lbs, we were wrong! They finally brought him to me, all swaddled up with his tiny hat on, he was so beautiful but his entire body was blue; this wasn’t a good sign. Dr. Sherman shared with me that his heart rate was only 60bpm and it should be around 120bpm, my heart sank. I just started thinking that he was going to leave us sooner than even the doctors thought.

As we held him, we had the happiest nurse in the world snapping pictures. She was so excited to photograph our family and it means the world to me that she did that with such joy. With it being a sterile environment we weren’t able to have a photographer in the room with us and she was more than happy to pick up that slack. From that moment on, Thomas never left our sight. They allowed us to keep him from the beginning of his life until the end and I will forever be grateful for that. They finished sewing me up and got me moved back to a different bed and off to recovery we went. They allowed Aaron and I to spend some time with him in there and then they asked if we’d like to let a few of our family and friends in, to which we said yes. In my mind, I was thinking they would treat it like ICU and let one or two people in at a time, nope; the whole crew came pouring in! We had a Thomas celebration in the recovery room; it’s unheard of to have that many people in a hospital recovery room but Dr. Sherman made sure it could happen for our family and it was such an amazing time. We got to get all those first pictures with the family that every parent wants, we got to gather around my bed with the hospital staff and pray over Thomas and his life here, my physical healing and the emotional healing of everyone in the room. He was passed from person to person and I was filled with pride when I would hear everyone talking to him and telling him how loved he was and how absolutely beautiful he was. I think it was in those few moments that I realized that I wanted to share him, I wanted to pass him around, I wanted him to have visitors; part of enjoying your newborn is watching other people enjoy your newborn. I wanted that.

Friday was a good day; I would even go so far as to say that Friday was a great day! His color was good, his cheeks were full and round, he moved his arms and legs, he would tightly wrap his hand around our fingers and wiggle his toes when we tickled them; Friday was his best day. Everything we’ve read and everything we’ve heard says that these babies don’t feel and they simply have reflex type behavior, our son was quite the opposite. If he didn’t want to hold your finger, he wouldn’t, but when he wanted to it felt so good to feel the strength in his grip. He hated it when we would mess with his hats! Lauren became labeled the “hat lady” and it was her job to ensure his hat was on right, he yelled and swatted at her quite often. He let us know when we did things that he didn’t like, he felt. We read and heard that he would be deaf; I truly believe he was not deaf. I had a dream that he could hear a while back and I believe with my whole heart that he could. Aaron was trying to record his voice or something when his phone went off right in Thomas’s ear and when it went off sweet Thomas squinted his eyes and turned his head away. He could hear. We read and heard that he would be blind; I don’t believe he was completely blind. Someone took a picture at one point with a bright flash and he did the same flinching motion with his eyes and we all got excited that he could see that bright light. He could see. We read and heard that he would not feel pain; I know this was incorrect but we will get to that part later. The nurses would come check his heart rate several times, something like once every 30 minutes to an hour and it was always between 110-130, usually right at 120. They would also check his temperature, this was the part I hated, his temperature never exceeded 93 degrees which meant they wanted me to keep him swaddled up at all times to get that up. I just wanted to unwrap him and strip his clothes off to look at all of him, to know his whole body; every mommy does that with their baby and I couldn’t.

By the end of Friday I think he had something like 72 visitors, my dad was in charge of a sign in book that he brought with him. I’m sure glad he thought of that because I sure didn’t. I am so thankful that I have that now! The best part of that day was watching our kids play with him. Aaden was so excited about Baby Thomas and that truly shocked me. He’s not really too interested in babies and for him to want to hold him and not share him really warmed my heart. At one point he was holding him and his hat came off, something we tried to avoid with the kids, but he simply said, “Thomas has berries on his head; are those grapes?” I love his innocence. What he was seeing was the portion of Thomas’s brain that was exposed but when we simply said, yes, you are right, he left it at that. For us it might seem strange that a newborn would have grapes on their head, but to Aaden I guess it seemed ok because he never questioned it again. Kamryn was super excited about him too but a bit more hesitant because she understood what was to come, it was almost like she didn’t want to get too excited about him because she knew she couldn’t keep him long. She did take the time to love on him, she’s a mother hen, babies are her thing. Aaron says he thinks she was just pondering what was really wrong with him. We had shared with her that he would have a bo-bo on his head that would make him too sick to stay with us, but she couldn’t figure it out because she couldn’t see his bo-bo. Friday is filled with wonderful memories, ones I will always cherish with my healthy baby boy and his family and friends there to love on him.

As Friday came to an end our nightmare began. All day Friday he had tiny seizures, the ones that I had been warned about. Those seizures were so insignificant, most people didn’t realize he was having them when they were holding him; they were simple flinches, which seemed like typical baby movements at times. Late into Friday night he began having violent seizures, this is where the ride became very turbulent for Aaron, myself, and the rest of our support group. I will describe these “episodes”, as we began to reference them, to the best of my ability. When an episode was beginning we would notice that he would stop breathing, would slowly begin to turn blue around his lips, his arms and legs would then slowly begin to stiffen, his head would begin to turn to the side, his mouth would fly open, his entire body would be blue by this point and then his body would go into a full blown seizure. Aaron and I would always see them coming and would be quick to insert our fingers into his palms and when the big moment came, he would squeeze our hands so tightly that his knuckles turned white. This was a moment of torture, but I have to say that it felt so good having him squeeze our fingers, it’s like he knew he could count on us to get him through it. While in the midst of an episode he would not breathe at all, there were some lasting as long as 32 minutes and they began coming in one-hour intervals. As he was fighting to overcome these seizures he would gasp for air and when he gasped and then exhaled he would let out a scream that would literally rip my heart out; this is why I don’t believe that he didn’t feel pain. He would gasp for air for the longest time like this until his color would come back and he could breathe in normal intervals. At the beginning of a seizure his heart rate would go down between 50-80 but when his color came back it was almost always back to 120. He was a fighter! After a seizure he did the cutest thing with his breathing, the nurses said it was a sign of respiratory distress, but it was super cute; he would inhale and when he exhaled his little lips would do this sweet little puff thing; we all loved it. The nurse we had Friday night came in and said the sweetest prayer over Thomas, she can pray like nothing I’ve ever heard in my life. My dad even said he wished that he could pray like Rosemary, he said he felt like he touched heaven when she prayed. By the time she got there we had endured hours of these episodes and the torment of watching your baby suffer like that was beginning to wear on us. When he would begin to seize, Aaron and I went into immediate comfort mode, we began whispering in his ear how much we loved him, saying it was all going to be ok, what a good job he had done, how he had already proven everyone wrong, that it was ok to let go and go be with Jesus, that he didn’t need to fight anymore because mommy and daddy would be ok, that we wanted to keep him with us but we wanted him to be free from that pain; all the while sobbing tears of agony. I would say he did this for at least 24 hours straight, it became so exhausting and started messing with my mind. I became so angry with God. There came a point that when he would begin to seize and throughout the entire seizure I would yell at God asking him why he would bring my baby here just to torture him. Telling him that I think it’s bad enough that he has to die and I felt it was so unfair that he cause his short life to be one filled with such pain. Aaron looked at me at one point and said, “God watched his own son die”, to which I snapped at him saying, “this is MY baby though”! I remember sobbing and saying that I know people keep saying what an inspiration he is but he’s just a tiny baby, that’s too big of a job for such a tiny baby. Why does my baby get the job of inspiring people?? At one point I looked at Aaron and said, “we’ve made the wrong choice”. All I kept thinking was, if I hadn’t made the choice of keeping him, he wouldn’t be suffering so bad. Aaron, along with the nurses and Dr. Bharathi began fussing at me for saying that. They all ensured me that they believed we had made the right choices. Dr. Bharathi’s exact words were, “you have made every right choice”. Each time he would have a seizure, we thought we were losing our son. It was a rollercoaster like no other. When he would begin to turn pink again and regain a fantastic heart rate we would be elated, but I began to question my own feelings of joy when I knew he was going to have to continue to suffer; I just wasn’t ready to let him go yet.  The mental toll it takes on a parent to watch their newborn baby suffer for hours on end is something I cannot even begin to describe; I truly felt I was losing my mind. I can remember the sinking feeling I would get when his lips would begin to turn blue and I would say, “here we go again daddy” and the room would clear. When he first started having them everyone would stay in the room, but as they became more violent and more frequent, they would all leave us in there alone. We got so used to them that we stopped calling the nurses in there so much, we would just snuggle him through it. There is one detail I can say I am so proud of is that there wasn’t one seizure that our son endured without our fingers wrapped tightly in his grasp. We made sure to tell him constantly how much he is loved.

These episodes went from Friday night into Sunday morning, this meant we hadn’t slept since Thursday night; exhausted isn’t even a good word for our physical state. People kept saying, sleep, we’ll wake you if things go wrong. The NICU nurses were so good to us, they offered to sit and hold him in our room so we could sleep and we would be right there if something happened so they could wake us up. What nobody seemed to understand is, we didn’t want to sleep through his good times and only be there for him through his bad times, we wanted to be there for all of it. We have the rest of our lives to sleep; our time with him was very limited. I refused pain medicine the entire time; they gave me some shot that was the equivalent of ibuprofen but begged me to take a narcotic for the pain. I honestly felt no pain and if I couldn’t offer my son anything to take his pain away, why would I take some narcotic that was going to make me sleep through his life just to ease my pain. Didn’t seem right to me. I’m tough; I can handle a little physical pain. Everyone kept telling me I needed to eat; I didn’t want to eat!! On top of not having any appetite at all, my son wasn’t able to eat so why should I eat? I think in some strange way I was trying to torture myself in order to feel as though I was taking on an ounce of his suffering.

As Saturday night moved into Sunday morning we decided to shut our eyes because he hadn’t had an intense seizure in a while and we needed to rest. We all three climbed in the bed and snuggled up for a nap and my brother in law, Jae, would come in to peek at us while we slept. I remember him saying, “Holly, is he supposed to be breathing like that?” my heart sank. I knew another episode was coming and I felt intense guilt for having shut my eyes for that hour. Another episode came and that was the end of my night’s rest. Sunday proved to be one of the best and one of the worst days of my life. He was very unresponsive all day, didn’t do much finger squeezing, wasn’t moving his head at all, when he would have a seizure he wasn’t really yelling out because he simply didn’t have it in him any longer; it just seemed Sunday was going to be his day but we just didn’t know the hour.

As we were sitting and watching him like a hawk, someone mentioned how beautiful it was outside, I think it was our wonderful nurse Alison. I just looked down at Thomas and began talking to him in my mommy voice saying, “I sure wish I could take you outside” among many other things. Then came the magic question! Alison asked me, “do you really want to take him outside?” I quickly responded saying of course I do, can I? She said she would be right back and she came back with a wheel chair and confirmation that we could go for a stroll. I told her I wanted to walk and she quickly shot me down saying, “they’re a little funny about walking with the babies so you’ll have to ride”, I didn’t fight her, after all, she was granting me a huge wish. You couldn’t miss us walking through the halls; Thomas had his own paparazzi with him 24/7. We made it down to the gardens of the convent and the weather was breath taking. The sun was out and the breeze was phenomenal. We got to a stopping point and I decided I should take off his gown and allow him to truly feel the outdoors. HE LOVED IT!! He hadn’t responded to anything all day long until we made it outside. He began waving his arms in the breeze and wiggling his feet. Aaron would try to hold his hand and he swatted him away as if to say, “back off daddy, I’m trying to take this in”. Watching him respond to the wind on his face and in his fingers was a true gift. We all got a bit of a laugh out of the fact that he was strolling through the convent gardens in nothing but his underwear; I say that was his one rule he got to break. You can’t live your entire life without breaking one tiny rule, his just happens to be running around mostly naked where the nuns live! Our happiness quickly turned to sadness, which was my least favorite part of this whole experience; one minute we were all laughing and soaking in the biggest blessing in our lives and the next we thought we were losing that blessing. He began to have a seizure but this time it was different, his heart stopped completely; this was new. I saw the look on Alison’s face and I just knew, she simply said, “would you like to have a prayer?” At this point, Bro. Nathan had arrived and I had no clue he was there; he’s the pastor of our church. We all gathered in a circle and dad tried to pray, he really tried, but he couldn’t do it; he just sobbed. Bro. Nathan chimed in and prayed over our baby boy. The only thing I remember from that prayer was him mentioning the wind all around us reminding us that God is surrounding us; that was so true. That moment is one I will never forget because my little warrior began to rally yet again. His heart stopped completely and then he decided he wasn’t ready quite yet, all I could do was giggle when Alison looked at me and said his heart rate was back to 120 again. He was such a trooper.

We made it back inside and decided we might want to take a 3 minute shower each, neither of us had had a shower since Friday morning and now that we had been sweating outside we surely were beginning to smell. Aaron had attempted a shower earlier that day but when he walked in that bathroom Thomas immediately began to seize, as if to say, “you can shower later daddy, come look at me now”. Since we were so stinky I told Aaron that I would stand in the bathroom and hold the baby while he showered if he would do the same for me, maybe that way Thomas will approve of us taking a moment to freshen up; after all, he had to be tired of smelling us! Aaron had time to rub some soap on himself and rinse it off before another seizure hit and I had him get out of the shower. This was the next to last seizure of his little life. After that seizure we watched him for a little while and he was resting so peacefully so we decided we would do what all parents long to do; nap with our baby boy. We both snuggled up to him and slept for a very short time before he began having another seizure. Aaron scooped him up and I called for Alison to come down, we held his hands and went through the same routine as we had done for the last two days of just snuggling him through it all. Alison’s face was very different this time, I knew this was it, I wasn’t ready, I had been telling my baby he could let go to be with Jesus all this time but I didn’t really mean it; I wanted him to stay! Alison called for Dr. Bharathi to come check his vitals and when he got there he confirmed what she had discovered. I did ok until I watched him lift Thomas’s arm and drop it, I know that’s probably standard, but it killed me to watch it. He then began to comfort us in a way that most doctors won’t do. Hugging Aaron and I both; reassuring us that we were wonderful parents and we had done everything right. There was another lady that had to come in to pronounce him dead and she was so full of compassion, she hugged us and just cried; many times this weekend my heart bled for these people, watching others in pain like that must be a really hard job.

Once he was pronounced dead I demanded to go home, in a polite way of course. I just didn’t want to stay there without him. They began getting the paperwork ready for my discharge and while they were doing that Alison brought us everything we needed to give sweet Baby Thomas a bath. Aaron and I finally got the chance to look him over really good. We actually had a lot of fun bathing him and dressing him. Aaron really did the bathing; he always did Aaden’s baths when he was a baby too. He took care of the diaper changes too, when Thomas would tee-tee we would all cheer and then there were a few diapers with poo-poo and I’m pretty sure we cheered loud enough to wake the neighbors. He’s such a good daddy, he just loves doing things that most daddies don’t. I simply washed his face and lotioned him up so he would smell baby fresh. We had two outfits to try on him and neither of them fit; everything was huge on the poor kid! He was so tiny and here I was, prepared to birth another 9lb baby apparently. We spent at least an hour with him after he passed, we got him cleaned up and smelling good and then began to just snuggle him. I remember rocking him; he loved to rock. When I would rock him, he would snuggle so close to me and just relax. Since he loved to rock I sat with him and talked to him while I rocked until MY heart was somewhat content. Aaron and I took turns holding him and then we let everyone in to see him. He just looked like he was sleeping, he was at peace, no more hurting, no more stupid seizures! We all sobbed together and took turns holding him. I knew he had passed but when I would rock him I would pat his little hiney and sshhhh in his ear, it’s so natural to do that and I just couldn’t come to grips with the fact that he was gone. My precious angel baby was really an angel, and mama wasn’t terribly happy about it.

Dad had arranged to have a wonderful man in his church, who also happens to work for the funeral home we are using, come pick Thomas up from the hospital. He came very late that evening. Thomas passed at 6:10 and we got to have and hold him long after that. Mr. and Mrs. Trumble showed up to pick him up and I lost it. He came in and spoke with us for a moment and then he said, “now, take your time, but when you’re ready for us to take him, come out and let us know.” I started sobbing uncontrollably! Will I ever be ready for them to take my baby boy? No!!! I had been lying with him on the couch, getting as much snuggling in as I possibly could and when I stood up I realized all of the blood had started to move to one side of his face. I started panicking and crying out that I had ruined his face and I was so sorry. Aaron kept telling me that I hadn’t ruined his face at all, but there was no reasoning with me at this point. We took a few more moments of holding him and bonding with him and then we bit the bullet. The hospital had agreed to release me and told me I could stay until midnight if I wanted, I think it was around 11:15 or so when we left. I told them I wanted to carry him out, so they put us in a wheelchair and I covered his face to avoid any stares and off we went, on the longest wheelchair ride ever. When we got to the lobby area I saw a huge group of people standing there and I refused to go out there, I couldn’t sit there and pretend everything was alright in an attempt to make sure to not ruin these people’s evening. They had the Trumbles pull their car up a little further and they wheeled me down to them. This whole time Aaron and I kept wondering how they would transport our precious cargo. Surely they wouldn’t put him on the back seat or in a box?! Not at all, Mrs. Trumble had every intention of holding him and loving on him the entire way back to the funeral home. They came in their own vehicle and not the funeral home vehicle. It was almost like laying him in his grandma’s arms and that gave me some peace, not much, but some. She kept assuring me that he would be snuggled and loved the entire way there. It took us forever to say goodbye, sobbing and wailing almost. I just couldn’t stop kissing his lips, I couldn’t say, “ok, this is the last time”. We finally said we had to let him go and they slowly pulled off with him, I literally lost the strength to stand. I remember grabbing Aaron’s shirt and screaming “no” over and over and over. Then I began screaming, “they took my baby, they just took my baby”, “I want my baby back, please make them bring my baby back”. They had to physically dump me into my truck where I just collapsed, the level of grief I was feeling was like nothing I’ve ever experienced, I never want to experience it again. Our son fought the good fight. I remember telling people that I didn’t want to go home and leave him at the hospital and I didn’t want him to leave me at the hospital without him there either. I thought it was wishful thinking and figured it wouldn’t happen that way but it’s what my heart wanted. I remember telling Judy, before leaving work, I just want him to pass away Sunday and then get discharged 3 hours later. Apparently God and Thomas heard the plea of my heart because he passed away Sunday and we all left together 4 hours after he passed. I truly believe my boy fought so hard to stay alive all that time so that he could make his mommy’s wishes come true. What a precious baby he was.

We made it home, I had to be carried to my bedroom where I just planted my face in the mattress and bawled my eyes out. I knew that Casey had already posted the slideshow of his little life and I remember saying, “I want to look at his pictures” so Aaron pretty much picked me up and forced me to go look at the pictures, I’m so glad he did. As I watched it my heart was filled with joy. I didn’t cry at all watching it, I just got to sit and remember all his good times. That was the first time all night that I stopped crying. I sat and watched the 11 minute slideshow at least 5 times until I began to fall asleep at the computer desk. They put me in my bed, I snuggled up to the last blanket I wrapped my son in and that was the end of that.

Dad stayed the night that night to take care of Aaron and I if we needed anything at all. He was as quiet as a church mouse because we slept pretty late. I did get up and take a shower and I made myself dry my hair, I knew Aaden would be home shortly and I knew he would need to twirl mommy’s hair. Once I did those things I crawled back in bed to cry, my arms felt so empty and my heart was so heavy. Aaron had mentioned how unbelievable it is that we only had him three days and we miss him so much and already have a difficult time imagining life without him; so true. Aaron kept asking me to get up because Aaden was on his way home, I just couldn’t make myself get up. As soon as Aaden got to the house I heard Aaron bringing him to my room. Then came his sweet voice, “mooommmmyyyy, waaaakkkkeee uuuuuppppp, we brought you macaroni and cheese”, I begged him to crawl into the bed with me and he couldn’t wait. He came directly to me and laid his face next to mine, put his fingers in my hair and began to twirl; instant medicine.

At some point between Sunday and Monday I had made the decision that I was going to go to the funeral home daily to visit my son until the day of his service. My dad began to panic a bit because they don’t typically embalm babies because their bodies are so fragile. He immediately called David Trumble and told him that these were my new wishes, Mr. Trumble then called Hershel at the funeral home to see what could be done. Apparently Hershel took it upon himself to attempt to fulfill my wishes by embalming sweet Thomas so his mommy and daddy could come for a visit. We went Tuesday to make all the final arrangements and he let us know that we could see him and he already had him set up in a private room for us. He told us they didn’t close until 5pm, at this point it was 10:30am, and we were welcome to sit in there with him until 5:00 if we wanted. When we walked into that room my heart filled with joy because it was my baby boy. I remember smiling really big and saying, “yep, that’s him”, as if Hershel would have put me in the room with the wrong baby. Then came the tears, but I think they were tears of joy. He looked BEAUTIFUL!! Hershel had done an amazing job, I just kept thanking him for making him look so good. He looked like he did the day he was born, good color, chunky cheeks, puffy kissable lips and he just looked like he was peacefully sleeping. Hershel looked at us and said, “would you like to hold him”, to which I responded “are you kiddind me?? Of course!” Never in a million years would I have thought I would be so excited to hold a deceased baby in my arms, matter of fact, prior to this it probably would have completely disgusted me, but my heart skipped a beat as he handed him to me! Again, we all passed him around and loved and kissed on him. Talking to him as we did in the hospital, telling him we love him and miss him so much. I told him how jealous that Aaden would be if he knew Thomas was getting to play with the wild animals. The whole family got to love on him one last time. I told Aaron that I hated to say I was ready to go but that I didn’t want to leave at 5:00 when they were locking up. I wanted to leave while there was still music being played in his room and there was still life in the building, that’s how I wanted to remember leaving him. Hershel gave us a gift that he will never know the meaning of, we got to see our baby boy looking healthy and peaceful; now that is our final memory instead of watching him ride away and feeling myself slowly falling apart at the seams.

I have so many people to thank and that blog is in the making. This experience has rolled smoothly from day one. God placed all the right people in our lives to make this an experience filled with all the right puzzle pieces. I pray, one day, our story reaches the person God wanted it to reach. I want to share my blog stats, here are the hits that I have received from all over the world:

USA - 45,316 hits
Canada – 393 hits
Australia – 72 hits
United Kingdom – 59 hits
South Africa – 54 hits
Switzerland – 32 hits
Germany – 24 hits
Denmark – 15 hits
Guatemala – 15 hits
Japan – 15 hits
Honduras – 7 hits
Slovenia – 6 hits
South Korea – 4 hits

So, how did my angel spend his dash? Touching those lives; pretty amazing if you ask me! We are two very proud parents, what an honor to have been chosen to carry him. Now that I’m clear in my thinking, we made ALL the right choices; I cannot imagine going through life wondering “what if”. I can not only live without regret, I will forever be changed from meeting, kissing and loving that sweet Thomas of mine.   

To view the slideshow of his life go to     


  1. This was sooooo beautiful. I know it was tough but thank you for sharing! You and your family are wonderful and it is an honor to know you, even it if it's only been for a short time! Thank God for that yard sale!! :-) Love you guys much! :-)

  2. Holly,

    All I can say is wow! I know we have never met! But I feel like I have known you forever! We have some mutual friends and they have all told me what an amazing person you are. And by reading your blogs I know they are right! It just took me an hour to read your latest blog, I cried and laughed. Your baby boy is now an angel in heaven! You should be proud! Thank you for sharing your story and the little journey of Thomas' life!

  3. We will all look at life a little differently now that we have "met" Thomas. God had a specific plan in allowing you to share your baby with the world. I know it has blessed me beyond belief.

    Thank you for giving Thomas life. You did make all the right choices.

    God bless you,

    P.S. Nathan is our pastor too:)

  4. Oh my heart! I don't know you personally, but through a friend have been so very blessed to hear of your story-
    What a story of strength, courage, and TRUE faith beyond comprehension. There are no words. I can't fathom what you have been through. I don't think there is anything you will ever do in this life that was harder then giving your son to the Lord. I know you are aching to have him back. May God give you peace. God bless your family.
    "No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him" 1 Cor.2:9

  5. I made it through without crying!! Aren't you proud?! Love you Hollz! I love all of you guys and I'm so proud of you!

  6. Holly,

    There are no words to tell you how much I am sorry for you lose. As I read this tears could not stop. You and Aaron are the strongest people I know. I want you to know that if you ever need anything I'm here.

  7. Holly, this was truly beautiful! Thank you for sharing this part of your life and your testimony through it all! Praying God's peace for all of you!

  8. Holly, Thank you so much for sharing this journey with us. It has touched me & I think about you often. I have been getting on daily for the past week or more hoping Holly has posted something new on Baby Thomas. You are such a strong women & a wonderful Mama as is Aaron a wonderful Daddy. I'm so glad you have the support you do of all your family & friends. I want you to know I will countinue to pray for you & your family. I hope that God brings you peace. You have made even those of us who can't be close to yall, love Thomas & your entire family. May God be with you all.

  9. Holly,
    Thank you so much for sharing your journey with us. This has truly touched my heart in a way that I can't even explain. I don't know you personally but I feel like we would be great friends if we ever met. I have a 2 1/2 year old little boy and your story has really made me take a step back and cherish every little moment with him and not take him and his health for granted in anyway. Thank you for that. I think about you and your family daily and have cried daily as I think of you, read your blogs or even when I talk about you to friends and family. You are such an amazing Mother and I hope that you know how much you've touched my life and everyone around. Thank you for sharing Baby Thomas with us, what an amazing, strong and beautiful baby boy.

  10. Holly, I weep for you and your family. As a mom, I can not imagine the pain you went through and are going through. It is unbearable to even imagine, yet you and Aaron are living through it. I am reminded by your words that God is gracious to give us the strength for each moment. We will continue to pray for you, sweet momma, and also for your sweet husband.
    Katy Vandegrift Shultz

  11. Again Holly....I am speechless. You are one awesome lady and God has certainly used you in a mighty way. We are continuing to pray for your sweet family.

  12. Holly I have never met you, my daughter, Aubree, sent me your blog and truly it has touched my heart in a way I can not explain. I know a wonderful man the pinned a song titled, "Trust Me With" and truly God trusted you with a wonderful job.. that of being baby Thomas' mom. You seem to be an amazing woman and what an honor for baby Thomas to have such a mom.
    Thank you for sharing this very painful, yet wonderful journey.
    May God fill your heart with His sweet love and peace until His return.

  13. You are a truly one of the stronget people I know... I want to thank you for sharing Thomas' life with us. He was a fighter against all odds. I love you guys and will see you tomorrow.

  14. We have only met once, but through reading your blog and seeing the photos of little Thomas' dash, I can say that I am honored to have met you and your husband.
    There are so many things that I would like to say that I can't organize my thoughts enough to say them. So, let me just say this. You have done an amazing job. Not only giving your son the best life possible in his short dash, but also by being so generous and selfless to share him with others.
    As a mother of a stillborn, I can say with tremendous regret that I did not have the courage to do even a sliver of what you have done. You are inspirational and will forever be in my thoughts and prayers.

  15. Holly,

    I came across Baby Thomas' story through a mutual friend and have been so touched by your strength since the beginning. I have an 8mo old little boy and I often find myself wondering if i could have been as strong as you in the situation. The way you have never lost faith is amazing. I feel like your story has touched me in so many ways. I know i appreciate every moment with little boy even more now. I hope that i can be as resilient in my faith as you and your whole family have been. I know you must already know but Thomas' short 48 hour "dash" has already been more of a significant life that alot of people who have spent years on this earth. He touched so many lives over such great distances and that is more than i can even say for myself @ 23 years. His "dash" isnt even really over yet because he continues to work the hearts of all the people he has touched. I know i dont have to tell you, but you have SO much to be proud of. You and your family will continue to be in my thoughts and prayers and baby Thomas will forever be in my heart as a reminder to appreciate every detail life has to offer.

  16. Holly, my mother in law, donna johnson sent me the link to this blog.
    I just want to say thank you for sharing your story and sharing baby Thomas's life. It has touched me to my core and I am praying for your family. The Lord is good ALL the time and I believe Thomas will continue to touch lives even further than his "dash". God trusted your family with this and because you were obedient and trusted in Him, He was able to carry out His plan. I pray peace and healing over your family.


  17. WOW, I wish I could say I made it through this without becoming an absolute mess but I can't! I, too, know that little baby could see and hear, I believed it the second I saw him and held him. He will always have a special place in my heart and I am changed for knowing him during his time here with us. Bless you all, we love you very much!

  18. What a beautiful life your baby boy had.

  19. ♥ May he always feel the sunshine and the breeze for all of eternity ♥

  20. Holly,

    Thomas did more with his 'dash' than most do in a lifetime. He brought more people to their knees, speaking to God and many bearing witness to what strength only a true faith in God will provide.

    You're family is so very loved. Thank you again for sharing!!

  21. Holly....I don't have words, but thank God you do!! My heart aches for you and rejoices at the same!! We love you and your family! We feel so connected with you guys....I thank God for your blogs. It has healed areas in my life that I didn't even know were still wounded! We are praying for all of you and will be there tomorrow to rejoice in Thomas' life!

  22. Beautiful!!! You amaze me Holly.

    Do you know the song "Beautiful Boy" that was on Mr. Holland's Opus? I think it was actually written by John Lennon, maybe? That song has been playing through my mind as I read this. Wish I could be there tomorrow. I know the service will be awesome!

  23. Praying for your family today as you celebrate his "dash". The Lord used Thomas' life and your family's incredible testimony in powerful ways... much more far reaching that your family may ever know. Thank you for sharing your story!

  24. Thank you so very much for sharing your beautiful baby Thomas with us. I've never met you or your family but you will forever be an inspiration to me. You will always be in my prayers. Happy Mother's day to you because you are truly an awesome mother.

  25. Holly, I don't know you personally, but we have mutual friends, and I've been following your journey through your blog. I feel as I have known you forever. You have an amazing ability to communicate and share your feelings with us, and you are Aaron and baby Thomas have been such an inspiration to me. Y'all have strengthened my faith in God and have taught me to appreciate every second, no matter how tough, I have with my children. You are an amazing woman, and I want to thank you for sharing this journey with all of us. I will continue to pray for you and your family through your recovery. Even though I don't know you personally, I think of you and Aaron and baby Thomas often. Y'all are true inspirations.

    P.S. Dr. Sherman is my doctor, too, and I'm thankful yall were blessed with such a caring doctor (and her nurse) through this difficult time. It seems like God placed some wonderful people in your life!

  26. I just read your blog from end to beginning. It's such an amazing and inspiring story. What you went through, you handled with such grace and courage. I can't begin to imagine what you and your family went through. I cried at times reading your blog. I laughed at times when you posted about your son (because it reminds me of my oldest son). I know you have often written that you don't feel strong, but you are perhaps the strongest person I have ever heard of in my life. I hope that the days have been kind to you and your family. My heart goes out to you!

  27. Thank you for sharing this with the world. It is no wonder that Thomas was such a fighter, because he was bound to inherit the trait from his strong parents. There is no need to tell you the story is "amazing", as I am sure the last thing you feel this days is such... it is heart-wrenching, and I cannot begin to imagine your pain and your grief. Thomas's story is truly a gift to this world from God, but you, Holly, are an inspiration to me. Thank you for sharing your days and your raw emotion. We mommies love you tremendously, and wish for even one moment we could hold a little of that pain for you, just like you wanted to hold it for him. Girl, you can squeeze my finger anytime.

  28. Holly-
    I am so glad to find you, and to learn of Thomas, and his powerful, amazing, strong, important life! Unfortunetly, I too can identify with your story, and have a daughter, playing side by side with your sweet baby. Maybe they are best friends, and take turns pushing each other on the swings. If you ever want to read about her, or find a community of women who have felt this loss and joy as you have, feel free to contact me. (our diagnosis was June2009 and the birth and death of my daughter in Oct. 2009 if you want to start reading there.) if you ever need anything or to talk my email is