‘I remember waking up and wondering why Mike and my mother were talking about something random and not the baby. What happened to the baby?’

More Stories like:

“I met Mike in the early summer of 2009. He had a girlfriend and I had a…well, it was something to me and nothing to him, so for a while Mike was the easy one to talk to. He was funny and the ‘always the one to offer a drink guy that was too nice to be in a bar.’ We were friends for a while, both oblivious to the toxicity of our significant others. We became fast friends because Mike has a wonderful personality; he’s extremely funny and extremely cute. I was crushing but like I said, we were both thinking we were more into the people we were dating than we actually were. Everything finally blew up in our faces later in the fall. It was a big mess. After it was cleaned up and behind us, we began phone calls that would last for hours and hanging out as friends started happening.

I was still crushing on Mike, but knowing the situations we had both gotten out of, being friends was the most important thing to me. Around December of 2009 I went to a Buffalo Sabres hockey game with my cousin and was telling her about this amazing guy I knew, our past with the others, and how I felt. I wanted to act upon my crush but was not sure what the outcome would be. During that game, Mike’s ears must have been ringing because he called me to meet up for some darts and wings later that night. This thrilled me. My cousin didn’t go because she had to work in the morning and we were expecting a pretty significant snowstorm that night, so I met up with Mike and we flirted the entire night. I finally took it to the next level betting him a kiss that I would beat him at darts. I don’t really remember if I did or not (probably not) but I got that kiss anyway. It was the start of something amazing. I don’t remember much from that night, but I do remember standing on my porch with the snow flying around us and cuddled in his hoodie to keep warm, not wanting the night to end. That was the start of my love story.

Couple sits smiling holding hands on man's lap

Three weeks into dating Mike, I told him I was going to eventually marry him but I was willing to wait.

Fast forward three years later and we are at a different cousin’s wedding in December. I happened to catch the bouquet and Mike catches the garter. It was a crazy night. My cousins started asking at that point when we were getting married. We were the fun, goofy couple. It was bound to happen. Two months later, we were engaged. He proposed with a beautiful ring in a photo booth to capture the moment. It was perfect. Nine months later in November of 2013, my father told me how proud he was of me to have such a wonderful man like Mike and walked me down the aisle and gave me away to become Mike’s wife.

Couple smiles as they stand close danicing

We both wanted children. We knew that. At first we decided to see what nature had planned for us. It was months of nothing. We finally faced reality that we needed help. We started seeing a fertility doctor and he started us on Clomid. It was insane. It felt like someone had picked me up and shook everything. My body felt different and my emotions were all over the place. I hated it and prayed that one cycle was all it took. Of course, I never was that lucky. The doctor had doubled the dose the next round (double the hell). I cried all the time and hated going to the doctors. I was on medication to start my period, going for internal scans every other day when my period came to see if anything was happening and on double sometimes triple the Clomid and still nothing for a few months. Then the doctor started another medication similar to the Clomid. Doubling and tripling that as well. Still nothing. Then he would combine the two. My emotions were all over the place, I was going for internal scans every month where I was embarrassed by the amount of blood I bled in front of the tech and in front of my husband and crying constantly. It was hell hearing that nothing was happening or that I had developed cysts and we would have to wait until they were gone to start the entire process again. After the first two years of this he finally said it was time to start with the injections. I was hoping and praying these were not going to take long, after all who wants to give themselves shots daily? Especially when you hate needles. The shots were worse than the pills! Not only was I giving myself shots, but my emotions were again all over but it seemed a million times worse than before. Again, it was month after month of these embarrassing scans and month after month of disappointment. It took everything in my power not to give up. I was depressed. I felt awful because the one person I could talk to about this, Mike, was also the one person I kept taking this all out on. I hated it, but did it for Mike and our eventual son or daughter.

The first glimmer of hope we had came at the absolute worst time. Mike’s grandmother, who we were both close to, had passed away. The day of the wake, the doctor had called me and said we had a perfect opportunity for an insemination. The timing was awful and even worse when they wanted to make the appointment the day of the funeral. I had told them I would call them back because it was awful timing but it was also the first real chance we had in three years of doing this. We took the appointment. The day of Mike’s grandmother’s funeral, we left the breakfast early to get Mike’s semen sample that would be used to inseminate me. The worst part was explaining this to his family who knew of our struggles with fertility. It was embarrassing. We went home, got the sample and went to the doctors. What seemed like hours was probably only a few minutes.

They did it. Told me to lay there for 20 minutes and then go back to our day. Two weeks after that, I took the test. It was negative. We had to start the shots more aggressively this time because we finally got somewhere. Shortly after we started the shots more aggressively, my father passed away. I was devastated. I was really close with my dad. This was extremely sudden and very unexpected. I was crushed. I needed a break. It was the first time since starting everything that I looked at Mike and told him I just needed to give myself some time. He was disappointed I am sure, but he never told me out loud he was. He knew I was going through a lot and he knew that deep down, we both needed the break. So we stopped the treatments just for a small amount of time.

During that time, one day while Mike was at work, I didn’t feel right so I decided to take a pregnancy test. To my surprise it was positive. I didn’t know what to do. I paced back and forth through the house trying to think of some creative way to tell Mike. Finally, I put the test in a box and wrapped it in some leftover Christmas paper that didn’t look too Christmas like because it was August. He came home from work and I presented him with the box, the whole time taking a video. He was joking about what might be in the box when he finally got to the test he froze. He looked at me, tears in his eyes, and ran over and wrapped me in his arms. That little break had worked for us. We went to the doctors and they confirmed it. We were having a baby. We told our families and they were over the moon like we were.

Aside from some morning sickness, so far the pregnancy was perfect. A few months in I did a walking 5K with my mom and her neighbor. My leg felt like it had stiffened up and I was in horrible pain. I got home and stayed lying down hoping the pain would go away and maybe I had just tweaked something funny. The next morning, I woke up screaming to Mike. I couldn’t put any weight on it, I couldn’t walk. He had to carry me from the bedroom to the bathroom. I told him we needed to get this checked out. We rushed to the emergency room where he carried me in and checked in. We sat in the waiting room for hours. I sat in the wheelchair chair struggling to get comfortable. Finally they told us I had a pretty significant blood clot. The ER doctor prescribed blood thinners that I made sure were safe for the baby and said I could do normal activities. My GYN, when I told them about the blood clot, told me no working and to stay sitting as much as possible. I followed the instructions and took the blood thinners. A month later, I started bleeding.

I called the doctor and she said not to worry and to call if it got worse. It was getting worse the entire night and finally we went to the hospital to see what was wrong. Our worst fears came to light; The baby was gone. Somewhere in all the blood was the baby we were calling our miracle. We had found out a few days before that we were having a boy. We were all in hell again. I spun into a depression vortex. I couldn’t do the shots until I was healed and what was worse was I didn’t know if I wanted to. It put a strain on me and Mike because I didn’t want to go through all of that again and I was severely depressed. Mike being the amazing man that he is, stuck with me and stood by my side. I knew I needed to suck it up and do these treatments again for my husband.

Three months later I decided I was ready to call and make an appointment. I was feeling off again so Mike told me to take another pregnancy test. I laughed at him at the long shot that it was. When it was positive there was no screaming in excitement, I looked at Mike and in shock said, ‘Oh shit!’ We had the pregnancy confirmed by the doctor and we kept it secret for awhile. We didn’t want the disappointment again. Three months passed and we told our families again. They were excited but just as nervous knowing that six months earlier we had lost a baby. Three more months passed and things were moving along well. We had a sonogram where we learned we were having a boy and we were just taking things day by day. A few weeks later, I was feeling off again. Not taking any chances we called the doctor and before she called us back we were headed to the hospital. She finally called us back and told us to go to Women and Children’s Hospital in Buffalo.

We got there and my blood pressure was awful. They put me on a magnesium drip telling me I would feel awful but I was fine. The next morning when it was done, we fully expected to be sent home. We had not bothered telling anyone we were even in the hospital because it was the middle of the night and there was no need to worry anyone. That’s when the doctor told us we would be there the remainder of my pregnancy. I was six months pregnant and now we were looking at three months in the hospital.  We told our families and they bought us supplies and things to keep me comfortable for the long haul. I told Mike to go to work because he would want time off when the baby came home.

Two weeks later my blood pressure had gone crazy and they were constantly running tests on me. One morning I woke up with what I thought was heartburn. They rushed me back to labor which I thought was pretty strange for heartburn. They started me on the magnesium drips again and this time it was awful. That night they woke me up in the middle of the night and told me they needed to deliver the baby. I was a day short of 26 weeks, what would happen to the baby? I called Mike, who rushed back to the hospital from work at 2 a.m. and called and woke up my mother to tell her they were going to deliver the baby. They both got here and as soon as they did, they rushed me to the operating room. That’s all I remember until I was brought back into the room. They delivered me because my kidneys and liver were failing. I had gone from preeclampsia to Eclampsia and HELLPS syndrome.

At 4:40 a.m. on Aug. 3, 2017 (four days after Mike’s birthday) they delivered my 1 pound, 10 ounce boy. I remember waking up and wondering why Mike and my mother were talking about something random and not the baby. What had happened to the baby? They let me see the baby after the final magnesium bag had run dry. I remember seeing this tiny little baby and being afraid. I didn’t know what was going to happen. We named the baby Michael Jr. “Mikey” to everyone. Mikey was in the NICU for three months on many different ventilators. We kept hearing that his lungs were so bad and that he probably didn’t have much of a chance at a good quality of life. They told us many times that our best option was to take his breathing tube out and he would either pass in my arms or thrive. We knew we were not going to give up on Mikey and told them time after time we wanted them to do whatever it took to keep him alive.

In December of 2017 they took him for trach, g tube and hernia surgery. The doctors had tried talking us out of the surgeries because they didn’t think he would survive. He did well through the surgeries but was still in a stronger ventilator and requiring lots of oxygen. In May of 2018 he finally got on a better ventilator and the NICU, being out of ideas on how to treat a 9-month-old, transferred Mikey to the PICU. The PICU was his big turnaround. Suddenly Mikey was on a home vent, his medications of Versaid and morphine were able to be discontinued, and his vent settings were able to be lowered. He was thriving in the PICU but I was still worried and stayed with him every day and Mike would be here when he was not working.

Mother smiles over baby son who lies in PICU

We celebrated Mikey’s first birthday in the PICU, complete with superheroes. We finally had a discharge plan of around Christmas, but had a scare this past November when we could not get his trach in. He was again intubated and sent for emergency surgery to get his trach repaired. Our tentative discharge was out the window. Luckily for us, Mikey was laughing and smiling like nothing happened the day after his emergency surgery. They were able to put him back on the medical floor and that’s where we are now. The new plan is eight weeks. The only thing holding us back now is finding nurses for homecare. Once we find them, we can finally go home.

Baby with trach smiles while laying in PICU

Seeing as another Christmas in here is inevitable, I decided to go all out in Mikey’s room. I ordered battery operated lights on eBay, which I thought would be shorter strands. Never did I imagine they would be over 27 feet long! We took the two strands we had left and made a giant tree in the window with them, a tradition that Mike has had since he was a little boy. I sent the picture of the light tree to the local news Facebook page and I sent it to the Sweet Buffalo Facebook page explaining Mikey’s story. Sweet Buffalo helped the photo of the tree go viral in Buffalo. Suddenly everyone in Buffalo wanted to know Mikey and our story. My sister in law sent me a video of the local radio station talking about Mikey and his enormous light tree. It’s amazing how his story has touched so many hearts. We have done news stories and gotten so much support from all of Buffalo. We are truly touched by everyone’s kind words and support. We hope to bring Mikey home soon, but its finding nurses in Buffalo for home that’s holding us back. Hopefully soon we will find them and we can finally be a family that does not live in a hospital.”

PICU room of baby with trach decorated in colorful Christmas lights

Baby in PICU lays in Christmas hat and onesie surrounded by colorful Christmas lights

This story was submitted to Love What Matters by Mikey’s mom, Kristine Barone. A version of this story appeared on Sweet Buffalo.

 Share  Tweet