It took a year to write about Michael's crazy beginnings. So much has happened, and while I wanted to add every cute shot, or document it all - I can't. But getting to write this much down has been so good for me. Remembering what God did, and how He carried us during a hard time and how He is still carrying us. I've had so many emotions and memories that still make my heart ache. And being able to express some of them out here - like releasing some tension - has been a good part of this journey.
This is a lot of words. But for those who can find the time to read, or maybe it's just for me or my children - may we be reminded of His faithfulness.
I was 35 weeks pregnant. So uncomfortable, and wishing that the pregnancy would be done, and that I'd be holding my precious little one. I was determined to slow down and just have a simple first month with this baby. My planned home labor would be over. My older children can do so much more now, so I'd not need that much extra help brought in. I could let the house fall apart if need be, and all of us would just soak in this new miracle. I'd keep my baby in simple zippered sleepers, forget about needless (though cute) outfits - and really take time to recover. We would be fine, and much more independent. Those were my plans.
January 22nd. Friday is our day off from school, so we went to Diane's to spend some of the day together. Kids played outside, and Diane and I chatted. Towards the late afternoon, I had a strange feeling - like a really strong contraction, but we both agreed that "everyone gets those in late pregnancy". I packed up the kids, and we headed home, a 15-minute drive. Almost home, I had another contraction, so strong, I could barely focus on the road. I called James at work, telling him - but probably it's nothing. I got all the kids inside, and barely could stand. Telling Katelyn to grab Jason as he ran outside on the driveway, I dashed for the bathtub, hoping that hot water would stop these contractions if was false labor. At my last midwife appointment, it seemed the baby was breech, so an ultrasound was planned in three days to check it out. All of sudden, a huge contraction overtook me, and my water broke. The feelings of complete fear overtook me, as, every. single. time. my water breaks - whether in a miscarriage or a live birth- my baby is born right away. All I could think of is that the baby is breech, I'm alone - with seven children downstairs. I called my midwife right away - who began driving over, called James, but he didn't answer. Called Deanna and told her I needed her - and Diane, who grabbed her kids and they all drove over.
My midwife wanted to get me to the hospital asap, so Deanna drove me, Diane watched the kids, and we got a hold of James who was going to meet us at the hospital. Such dread filled my heart as we drove. No contractions. But knowing that labor would be coming soon. And not the way I wanted. Deanna quoted verses on peace - and we prayed. Being excited too, because this meant that we are going to be holding this baby soon! Though I had no clue how everything was about to change, I did have such dread. This experience was not how it was supposed to go – but not as much out of inconvenience that my plans were changed – but deeper than that.
James met us at the hospital door, and it was determined by a quick ultrasound, baby was not breech - thank you God - and my water had definitely broken. So they would induce labor. We got all settled in a labor room, got my IV started, and walked and waited and discussed what would happen with this preemie baby once he/she arrived... they said, a few days in the hospital. I was frustrated, but oh well. We could handle a few days. So much for the independent, quiet home birth, and no one needed to help watch my kids.
Labor finally began at like 9p.m... but it took like till 12am, for it to finally start going. I was on the highest dose, and the Dr./Midwife were surprised that it took so long for it to kick in. So thankful that I didn't have transfer of care, and while the OB was around to periodical check on me, I was in my midwife's hands.
Then at 2a.m. everything went black in my mind as this baby was born. It was the hardest labor I’ve had. Later I found out that the baby was forehead presenting. Just a couple minutes of pushing and "it's a boy". I was so thrilled... Complete and joyous. But only for one second. Midwife said discouragingly "we can't bring him to you - the cord is too short". I looked and saw my baby boy's face. His eyes were open. His head deformed. But the look on his face was, "I made it mom”. He had no oxygen. Code Pink was called, rushes of many nurses from all over the hospital, the cord cut, and he was taken to the other side of the room where about 15 people worked on him. I didn't know until days later, but there was11 minutes of chest compressions, intubation, (Or what they thought was intubation), then they took him away. The Dr. asked them to stop the isolette as they wheeled it by me. I got to hold his hand and stroke his finger for a moment, and we got a quick look at our little boy, who already had a blue hat on, hiding some of his strangely shaped head. Then he was gone.
James and I were in shock. The midwife kept doing her tasks, and talked about some of the deformities - thinking there was a cleft palate, and some type of genetic disorder. We talked about the name... should we change our originally planned name to something more endearing? We wondered what was his disorder?? A Dr. came in later, hesitate to say what it could be - but saying, maybe it was Crouzon syndrome? We looked it up, relived that if it was that, yes, there would be a lot of abnormalities, but they can live a good life, and have a good mental capacity. (many factors depending). So, we decided to stick to our original name, cause he might need all the seriousness he could get! Obviously, we didn't know what issues he had, but it was a start.
Michael Andrew. Born at 2:12, January 23rd, 2021 - and I'd find out days later, weighed 6 lb. 6 oz.
We were taken to a recovery room. In such grief and so many questions. I think I slept for a couple hours. Showered, and had some food. James and I got to finally see him around 6 a.m. in the exact same spot that Jason was put when in the Special care nursery 3.5 years earlier. Another baby with so many wires and tubes. But this baby was a bit different. Lots of tears as I sat in a wheelchair. They were taking him to McMaster in a couple hours for more care.
Then, off to McMaster, never dreaming this was to be my life for the next 6.5 months. On the way we talked to the older kids on the phone; that they had a brother – but there were some issues.
We found our little one in the triage area by L&D. He was in a special assessment room, where multiple nurses, Dr.'s and RT's were working on him. James and I could go in one at a time. The other one stayed in a little curtained off area. The Dr. there gave his suspicions that he thought Michael had "thanatophoric dysplasia" - which is a fatal disorder. I went back to James, and we both completely broke apart. Just sat there and wept. Then we heard someone singing a praise song. An older nurse was doing her work in a corner while thanking God. She checked on us, and James made a comment to her, and she said about some grateful news she had just heard – then James shared our hard news... this lady went into Jeremiah 3:11 - "for I know the plans I have for you...." and showed us a little 2 minute message about it on her bible app. What timing.
She left us. And for the next hour or two, James and I would go back and forth. I wept beside his isolette, as a nurse rubbed my back, supporting me. I cried, asking if they had access to a photographer that could come before he would die. She was comforting, and said they were able to get one when we needed it. Back to James; having each other to grieve with was a gift. Then, this other managing nurse, a brisk, dutiful nurse got some details from us, and later said, we have a room for you to stay in. She showed us to it, then gave me a hug - saying "I know you're not supposed to do this", and left. She loved us in her own way as she knew we were in a dark valley.
We cried, and tried to love on our precious Michael as much as we could the rest of that day. Back and forth, taking turns.
I wouldn't see Michael's face free from tubes for 2 months. I didn't know for a week or more, that he didn't even have a cleft palate.
I had to take a Covid test to make sure I was clear, since I came from another hospital that day - I began the 8 month long journey of pumping, and finally, we both slept on a single hospital bed.
Pod D, bed 6. Most of the babies with respiratory issues are in Pod D. It's a very quiet pod. I hardly ever heard a baby crying, as most are either intubated, or some type of breathing assistance. Just like Michael. Never have heard a sound from him. Not like Level 2 nursery, where about 15 babies are in a large room, all crying and busy! I'd often go there to pump, and it was like a different world.
I began to meet other mom's; definitely harder to meet families during Covid -with all the protocols to follow. But I'd start seeing the same one's over and over - in the pumping room, hallways, or the parent's sitting next to their babies, a few feet away.
I finally held Michael when he was two days old. I couldn't move at all when I was holding him, as the Doctors and nurses were worried that he might extubate himself - and they probably wouldn't be able to get his breathing tubes in time before brain damage or death. So I would commit to holding him for as long as possible - around 4 hours. It was always a challenge to see how long I could hold him, as I was drinking as much water as I could with pumping, but I couldn't leave for the restroom for hours. I could only held him once a day, as it took two RT's and a nurse to bring him to waiting arms (and they had so many other babies and momma’s to help) But, oh how special. Just loving on my boy - wondering how long we would have this boy with us.
James got to hold him at 5 days old. We would both facetime each other when we held him, as we were never allowed to be together in the NICU at once - Covid rules. It was a tiny "help" emotionally, as we shared our son for a moment.
Our family and church came behind us, so incredibly. Prayers, food, and financial gifts to help with everything. We felt so encouraged. A friend from church asked if they organize a prayer night for Michael, which was done on zoom. Such a gift. So many people coming together to pray for a miracle, and as I was in the NICU at the time, I got to show them Michael on camera. God was getting glory for what was unfolding, despite the awfulness of it all. And through this whole experience, His peace was holding us. I felt carried. So carried by Him - the prayers of His people.
Deanna also organized a book - from so many of you - with verse, songs, comments to encourage us in this hard time. It touched me deeply. There were drawings from our children, the nieces and nephews and so many words of love.
James and I were both together in L&D for the first couple days. Then I was moved to a Care by Parent room which was right by the NICU area, for a few more days. When they realized that Michael's situation was pretty stable, they asked kindly if I had another place-many parents from further away needed a place. And what perfect timing - Will and Amanda were out west, so their house just 10 minutes away was available. So I moved there for a couple weeks. I was able to stay all day at the hospital, and still be rather close at night. James would come and stay for part of the night sometimes, or bring our kids to the house for a couple hours. Niece Valerie came out after the first week or so of Diane and Deanna watching the kids, and we got them under one roof, which made such a big difference.
I eventually came home for nights, and we got into a fairly good routine, of school in the morning - and then Valerie would take over, and I'd leave at lunch and spend the afternoon and evening with Michael. James worked so he'd stop in and see him in the morning and evening when he could. Sometimes, we'd meet with our cars at the top of the underground parking lot - handing the parking pass to each other, so the next one could use it, while the other went home.
I drove in from home the next afternoon listening to "Absolute Peace" by the Booth Brothers, nervous, excited and praying for God to help us. We had heard a few weeks earlier that it was not the "Thanatophoric Dysplasia" that we were so worried about. So that gave some hope. But it didn't seem so great yet. James came from work, and we met in the meeting room with the Genetic Dr. the NICU Dr., our Social worker, and Michael’s nurse for the day.
The Genetic Doctor began - explaining it was called Bent Bone Dysplasia, very rare - a mutation of the FGRF2 gene... and went onto the science of it all, until James stopped her. So is it terminal? The poor Dr. was trying to gradually lead us to that, but when James wanted the clear information - yes, it was. Of all the cases they had on record - 15 they said. Only 3 survived birth, and had died shortly after. They have never seen anyone with this diagnosis and didn't know anyone in the world with this disorder. They did say, that there must be others with this, but just not recorded. Bam. The news we were dreading and hoping would not be. It's terminal. So rare. There were tears. James and I held each other's hands. Oh God.
Then they offered to stop the conversation, if that's all we could take, and we could regroup, and continue it later. But we wanted to get as much accomplished and figure more out - so we kept talking. They started discussing what this meant, and the decisions we had to make. Should we take him home, unplug his cords, and let him pass at home? They went into how it all works, and etc. I made it clear that I wanted the children to meet him. Which with Covid, would not be possible in the NICU - or perhaps even in the hospital. They were very supportive, and said they would make it happen somehow - even if it meant taking him outside when it got warmer. I asked about a tracheostomy, and they didn't know if that would even work with his very different anatomy.... so we just discussed a lot of options. They wanted us to meet with the QoLA team - a palliative/end of life team, which we did a bit later.
I went back to Michael. It all felt so unreal. Looking at my baby, and holding him. Kind of laughing with the nurse about how direct James was to get to the point. Was this real?
Now that I had a name to his diagnosis, I finally googled it. I didn't do it until then, as I know all Doctors hate google. I right away found this woman and her son in the UK - and he seemed to have the same diagnosis as Michael. I read an article she wrote, and a couple hours later, showed it to the Doctor. She actually had seen it as well as she had googled it. Interesting. I So then, I began my two weeks of trying to track her down. I found her on Facebook and messaged her... even eventually messaging her friends to tell her to check her inbox - the poor woman! I messaged the preschool where her son had gone... trying to get a hold of her and more information on this rare situation our sons seem to have shared. But was he alive? The latest info I could get was that her son had lived at least to about 5 years old.
Finally after a couple weeks ,she messaged me back! She felt so bad that she missed my questions. She offered to chat - so we called and talked to her (all the way in the UK) as we drove into the hospital that afternoon. And she gave us hope. Her son was 11 years old! He was doing well, with challenges, but alive and a blessing. He was also still on a ventilator, had a trach and a g-tube. She was kind and to this day, is helpful and also led me to another girl in the states with Bent Bone Dysplasia - 12 years old, and doing well. Both mom's are amazing, and I'm so thankful God allowed me to find a couple other families.
I couldn't believe it. What hope. I shared it cautiously with the nurse that day - not wanting them to think I thought this would be our situation. I still had knew that we may only still have weeks/months left with Michael – but us momma’s, we do have more hope that most of the medical world. The doctor found out my news, and this led to more of an optimistic overall approach, as he was doing so well.
We met with the QoLA team - and they were so helpful and kind. They wanted to know our religious views, so we were able to share our convictions about life, the value of it as he was made by God, and in this situation, would not just take him off life support without giving him a chance. We reinstated that we wanted to try a trach, and that our children needed to meet him. We also wanted to make as many memories, and enjoy him as much as possible. The QOLA team helped make some of these happen - doing simple things like doing handprints over zoom with the other kids - our nurse Anna and SW Jessica making it happen.
All the nurses were so excited for me to see him like that. Tears of happiness. The RT in charge went over all the new pieces of life sustaining equipment, and gave us our new training schedule. James, Deanna and I were about to begin 4 months of tracheostomy and ventilation training so we could bring him home.
I couldn't hold him for a few days as he was completely sedated so his trach stoma could heal. I didn't come in quite as long those few days, so I could be with the other kids more, as he wasn't with it. He was also now the owner of a g-tube, and feeds were given directly to his stomach.
Finally, I could hold him again. So lovely. And it wasn't with the same type of worry for everyone else, as he at last had a secure airway. I could hold him for a couple hours, pump, and then come back and hold or sit by him. Those times where he'd fall asleep with me holding him were special. I'd listen or watch something in the chair, and have a little break with my baby.
One neat thing was, that while both parents were not allowed into the NICU together, or have any visitors we had an exception. Because we were training by his bedside - after a couple hours of classroom time, we got to be together with him. That was special. And the day that I got to finally introduce my 3 month old to someone (it was dear Deanna after our first class!) other than a medical staff, was amazing. I was walking on air.
Before I could take him out of his crib by myself, I had to do 2 months of training - and be able to do a solo trach change. Trach's have to be changed bi-weekly, and there are many reasons why you may have to do an emergency one, so all of that was to be learned and performed before we could take him out of his crib whenever we wanted. That was such freedom! What a gift. A few weeks later, that was James' gift, and then Deanna's.
Around 3 months old, I walked into the NICU, and saw that Michael was no longer just in his diaper, but in a navy onesie! He was wearing clothes!!! Finally. The dear cheerful nurse had decided that it was time, he could wear something. It was so exciting. Yet so bittersweet. I had not dressed my little boy with the first sleeper I had picked out months earlier. Someone else had, and she had picked something out.. So much joy and hurt intertwined in this NICU life. But, the outfit was symbolic, as it had an airplane on it - with the words
"Up, Up and Away" . Reminding me that he was going to soar high - probably higher than anyone else in our family- should he make it to heaven first.
But at last, we did figure out a way for our children to meet their little brother. Not in a normal way. Separated by four floors and tones of concrete, I held Michael up to his new window. We had just been moved from the center of the busy NICU pod, to the end room that had a window! James and our 7 children were standing on the other side of the street. I had my phone with face time on, and one of our sweet nurses helped with all the cords, and videoed for us. The kids could kind of see this little baby in orange stripes being held up-like Simba in Lion King- it was a very special moment. I didn't know it til after, but a few nurses were also watching in the next room - everyone so thrilled that we got to have a little family meeting during this hard Covid NICU life. It was precious. Still not the meeting we longed for, but we took all of these things as gifts.
Our little cub.
Michael seemed to be happier after his second surgery - assuming that pressure was now subdued in his head. He had so many smiles, and the medical staff loved him. Apparently, they would come in to see his happy smiles. He was such a content baby - whether that was because it is his personality, or because he had been through a lot.
Michael's room was as cozy as could be and decorated with lots of love. The nurses did a bunch of the decorating - every month adding a creative 12x12 poster of a new phrase with his footprints or handprints -making some type of animal or plant. From day one, a nurse had made his birth stats with his name on it, a banner with Michael's name - which decorated our little 6x8ish feet of space in the middle of the pod. There was a fridge whiteboard that held his updated stats, and little notes. The kids sent in coloring pages from week one, and especially Amy, was faithful in updating it. So many coloring pages, and all the staff commented on them. It was a good conversation starter - especially with the nurses I hadn't met as they'd chat about the amount of art taped around his one wall, and see the family photo I put on the wall. I loved to show off my family - and it helped that we had been through some of McMaster hospital life with Jason - and could show them that I already had a little boy with different needs... though Michael won many awards for special needs. :)
Then we came to day 100.
100 days of the NICU life, of driving back and forth over 100 times x 2.
100+ goodbyes to the kids, 100 nights either spent apart from James and the kids, or a way from Michael.
100 + daily reports on how he was doing.
And a part from a few weeks at the beginning and a few days after surgery, all those reports were very steady and encouraging. For Day 100, the nurses made stars in the window with a sign. There were stars representing all my kids. Those stars stayed in the window until we left - as we could see those stars from the ground. Anyone we knew that was driving near the hospital could see those stars, and knew Michael was there.
One day, I met one of the parents in the elevator I knew- they were waiting on results for their baby girl. She burst into quiet tears as she also said her baby may not make it. I gave her a quick squeeze and mourned quietly with her. And we kept close in the coming weeks as we both waded through hard things. We even got to go on a stroller walk together a few weeks before I left - and they ended up leaving soon after... and their little girl - while having challenges - is doing well. So much heartbreak there. A baby from a set of twins died when I was there. A little baby never had a parent visit her. Frustrated, hurting parents that had to be separated at the bedside. Nurses had to be the emotional support for all these families. Pretty amazing people.
For the first two months, we had different nurses every shift. We got to know a lot of them, but we never knew who would be on. They were all great, but it got emotionally tiring to have go through the same information every day. Eventually, I'd help tell them the best way to get Michael out for me to hold him - as the previous nurses and RT's had got a good system. I knew that we could potentially ask for primary nurses, but I didn't want to ask until we had a diagnosis. It didn't seem fair to put someone in a tragic situation if we didn't know what it would be. When we knew, I talked to our amazing social worker Jessica, and she put the word out that we were looking for nurses that would commit to Michael whenever they were on duty. The first one was Anna. A sweet gal, that was so positive, and truly loved Michael. Then cheerful and fun Rebecca joined. And thoughtful Chanise - the one who made footprint cards for the kids for Valentines. Then dear Hayleigh - someone well versed in trach's and did so many night shifts. All of them truly put their heart into their work. They would buy the cutest outfits for him, always making sure his bed was as "Pottery Barn" coordinated as possible, played the music I had put on a device for him, and spent time chatting and caring for us.
The RT's were amazing as well. These people were in a profession, that until Covid, weren't that well known. Now that ventilators are a common household word, RT's go hand in hand. They were so patient in teaching us everything we needed to know, would sit and chat with us, encourage us, and make those many trainings sessions fun, yet professional. The Doctors on duty, and the Nurse Practitioners were just as incredible, thoughtful, and helpful. I had my extra-favorite staff that I was always so glad to see on their shifts. McMaster felt like a bit more familiar over time.
Yet, there were so many hard moments. Times, I'd leave the NICU, and walk to the bathroom, where I'd cry and bang my fists against the stall. "Please just fix him, God. It just hurts so much". And how long could we keep going like this? Separated daily as a family, always needing someone to watch our other kids while James worked and I was with Michael. And yet, God kept providing again and again. After Valerie stayed with us for over a month, He brought Bethany and Charity - two different young ladies to help us. They would come for the afternoons or full days and keep the house and kids going. They both were pretty amazing. And our dear church supplied us with more than 2 months of solid supper meals. That was huge.
Then there were the drives home. So many tears and prayers to God. Songs of hope and grief were sung and cried over. I found a few songs that I wanted to use for his funeral, should we get there. A couple albums by Steven Curtis Chapman were especially encouraging. As a parent who has had a tragic loss, his writing connects with your heart. As hard as those many drives were, they were also such a gift. A time and space to be alone. It was “full-on” at home with our kiddo's in the morning, and then constant interaction with the medical world in the afternoon/evening. That driving time gave me some quiet space, and that was a gift. And when we had our many hours of training, sometimes I'd get to drive in with James - time to talk - and sometimes I'd come back with Deanna - who was a faithful and patient listener. We'd also discuss the training, all the right things or mistakes we made - determined not to do that again. :) Nothing would delay us from getting Michael home in time! We'd also laugh about the crazy scenarios the RT teacher put us in. Deanna and James would be paired up to do some "walk to the park" with all the kids, and then Michael's trach would fall out, and kids would be “running off everywhere” while they were doing an emergency trach change.... and I'd be sitting on my hands dying to jump in and help this pretend situation....
I'm very pro-active and re-active, whereas James is very calm and doesn't react with the same intensity. We make a great team as he deals with the problem thoughtfully, and I help him do it fast. :) In an emergency - he's the guy to have with you. Sometimes it felt straining on our marriage as there was much demanded, and we both wanted to get Michael him home quickly. The RT's made sure we both got the training we all needed and encouraged us on.
The time we got to take him for his first stroller walk around the fourth floor of Mac - what a special day! It was the first time he left the NICU, apart from surgery. I was very thrilled. James, Dee and I, along with our nurse Anna, and an RT walked around the floor a couple times. We had just gotten backpack straps for our travel ventilator, and had all this equipment in his double stroller that was now just as familiar as this hospital. It made Michael's babyhood have a moment of normality, as we walked with him. The staff cheered us on in every milestone, marking it down for us every time on his wall.
I wrote up a little ad with a cute picture of Michael - up on my Facebook - and asked people to share. And share they did. Within a few days, it had been shared 1.3K times. And emails starting coming in from nurses applying for the job. I had 30 people apply. I gave that list to one of the directors and she was stunned. How in a pandemic did you come up with that many? My answer was the provision from my great God. I knew we wouldn't end up with that many - nor did we need that many. I was hoping for around 8ish - and that would be amazing. I started interviewing them - some at Mac, some at home, wherever we could meet. And God worked it out - providing in the end 8 nurses that would work for us when we brought Michael home. And like He does, God knocked doors down, and we were able to get in on the "on hold" program, where we do all the dealings with our nurses - scheduling, and work with our own book keeper to pay them through this government funded program. All God. It came down to the last moment, with all the crazy amount of paperwork and getting all these nurses trained in time. McMaster worked with us, and opened up a course just for our nurses so we could get them trained by the end of July.
Homegoing date was planned and prayed for July 28th.
But, before that would happen:
-We would travel out west for the last two weeks in June.
-Move and do some reno's in our new place.
-After passing our training, we would have to pass a 48 hour in hospital stay with Michael. Just James and I by ourselves looking after his needs.
Great is His faithfulness. So much more to come.
I cried my eyes out on this post. You have written this all so well,Liz, and my heart was right with you. So many details I didn't know, even though you shared so much with me. I'm so glad you have taken the time to document all the details. You and James are incredible parents. Michael is one blessed precious child who is born into this family.
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