Summer of 2014 was coming to a close. I had a really nice, fun, busy summer with my husband and 3 kids. I had put on a few pounds, and was really looking forward to getting back to a schedule with the kids in school, and Keeland starting preschool. I seem to do better with everything (housework, work, diet, exercise) when I'm on a schedule, because it forces me to be organized. I like organization.
We spent the last Saturday of summer in Albany - doing some shopping and having lunch. I remember standing in line to pay at the Christmas Tree Shop, and I felt nauseated. In fact, I hadn't really felt that great all day - but it was then that I actually noticed it.
On the way home, I had my husband stop by the store so I could get a pregnancy test, "just to be safe." We got home, and my husband took our dog out for a walk, and the kids started playing. I decided to take the test. I cannot even begin to express the shock that I felt when I looked down and saw 2 lines staring up at me. I ran out of the house barefoot, and down the street a little ways looking for my husband. I started waving at him like a maniac, so he began to walk back towards me. When he got within earshot, I yelled, "It's positive! I'm pregnant!!" He smacked himself in the forehead. (Which I took as an "Oh no" reaction, but later found out it was a "you just told the entire neighborhood our business....whoops!).
We went in the house - my husband calm and cool, and me on the brink of tears and hysteria. I didn't want another baby! I was content with my 3 kids! We got rid of the crib and all the baby gear and clothes! What were we going to do? I asked my husband, and he replied, "We'll figure it out. We'll make it work." How he was so calm in that moment, I'll never understand - but I am so thankful. His strength made me feel a little better.
I called my Mom in tears to tell her, and she was happy! That made me feel a little better too. Then, that night, Vic was in horrible pain. I drove him to the hospital ER and he was admitted for kidney stones. Pretty eventful 24 hours!
After telling my "Boss" at work (who is more like a best friend than a boss), I felt like it was official. I was optimistic that I could finish out almost the entire preschool year, but just miss the last couple weeks. My due date was May 11th, 2015.
I had a pretty great pregnancy. The time seemed to fly by, and with each day I grew more and more excited to be welcoming a new baby into our family. We were thrilled to find out at Christmas time that we were having another boy!!!! We couldn't decide on a name, but I was pretty sure I wanted "Declan."
Fast forward to spring, and my blood pressure suddenly went up. They ran some tests, and assured me that all was well. But at my next appointment, it was up - even higher. Because of my history of preeclampsia (with my firstborn), they ran some other tests, and scheduled me for more frequent non-stress tests and ultrasounds. My husband and boss decided it was best if I leave work early to get rest - and then my Doctor insisted on it.
I remember that day so well. April 17th. I had an appointment (not Doctors) in a town about 40 minutes away, and Keeland didn't have preschool that day, so I brought him with me. Then, I took him to McDonalds to play and grab lunch. I didn't have an appetite at all - I had a non-stress test and ultrasound scheduled later that day and was just feeling a little "on edge." The kids had their pinewood derby race at Church that night too, so it was a full day. I suddenly remembered that I didn't have a little seat for the baby, so I ran to the store and bought one, took it and my son home, and then went to the Dr. appointment. Before I left I said, "I'm sure everything will be fine, and when I get home we'll head to Church." Little did I know!
When I got there, I just felt "off." That's the best way I can describe it. My cheeks were flushed, my blood pressure was really high, and I had no appetite. In fact, I hadn't really eaten at all in the last few days. I actually lost some weight, but I looked swollen. The sweet nurse midwife who did my non-stress test seemed concerned, so she asked the OB to come in and see me. She seemed concerned too, and decided to call my regular OB who was already across the street at the hospital. The Dr. came back in and said, "I talked to your Dr. and told her what was going on. She seems concerned, and wants you to head over to the hospital. We're not using this room after your appointment, so go ahead and take a minute, and if you need to call your husband, please feel free." The Dr. and nurse left the room, and my friend (who is a nurse at the OB's office) popped her head in to see how I was feeling. So sweet of her! (Thanks Kami!!). I called Victor, and the conversation went something like this -
Me: Hey Babe, my blood pressure is high, and I'm not feeling great, so they want me to go over to the hospital to get checked out.
Him: Oh man! Ok - are you ok? Should I call your Mom?
Me: No, don't bother my Mom. I'm sure everything is fine and I don't want to worry her.
At this point, the Dr and nurse both pop their heads back in the door, and they say, "Where is your Mom? Syracuse? She needs to get here NOW. Your Dr. says you have preeclampsia again and we're not fooling around - it's baby time."
I can hear my husband on the phone kind of freaking out, and all I can do is laugh and say, "Did you hear that?" And he said, "I'm calling Liz to come get the kids and then I'll be there!"
So, I drove myself across the street to the hospital and got checked in. My husband arrived (thankfully my sweet friend Liz took the kids to the pinewood derby so they didn't have to miss it!) and then they wheeled me into surgery. I won't go into great detail about the bumbling Dr. assistant who couldn't get my spinal in (literally took her 30 agonizing minutes before the head Dr. stepped in and got it on the first try). Before we knew it - we heard our son's first beautiful cries!
That's when things started to get strange. It took them a bit longer to bring him to us. And, they didn't let us see him as long. Before I knew it, they were taking him into the other room to get cleaned up, and my husband went with them. Obviously, I had to stay a little longer as they sewed me up and finished my surgery. I remember being very tired, and very relieved it was over. I remember wondering if his lungs were ok - after all, I was only 36 and a half weeks pregnant. The nurses wheeled me back to my room. I had to lay flat (typical after a c-section) and they worked all around me plugging in my IV's and such. I had this feeling someone was looking at me. I looked up to see my husband. He was looking at me so strangely - this look of sadness and love and comfort in his eyes. I asked him what was wrong. He was silent. I asked him - almost afraid of the answer.
"There is a lump at the base of his spine that they think is a tumor."
I started sobbing. All I could imagine was that my poor boy had cancer and that he would suffer, or die, or never be able to walk. And I hadn't even held him yet. When I was able to breathe again, I opened my eyes and saw another Dr. and nurse standing over me. It was the on-call pediatrician. He told me that he believed the mass was most likely benign, but that our baby was also having a hard time breathing and was being transferred to Albany Medical - a bigger hospital about an hour away. I begged to be transferred with him, but I was too sick to be discharged, and not sick enough to be transferred. I would have to wait there - without my baby. I was heartbroken.
They finally brought my beautiful baby in to me - we named him Grant Thomas. They placed Grant on my chest, and I lifted my arms to touch him - but I wasn't really able to HOLD him. He looked perfect, and so much like his big brother!
Behind the scenes, I didn't know that my friend and "Boss" Darlene had given Victor a ride to the hospital so that we wouldn't have 2 vehicles there, and she was waiting in the waiting room. She was one of the first to know about our sons birth, and his tumor. My Parents arrived and were able to come in and see Grant and hold him. His blood sugar was low, so the nurse was trying to get him to eat a little from a syringe while my Mother held him.
The transfer team From Albnay Med. came in to see me and explained that if Grant stopped breathing, they had everything they needed in the ambulance to save his life. That did NOT make me feel better. They told us not to bother going to see him in the NICU that night because it would take a long time to get him admitted, so it would be a while before my husband would be able to see him. My Dad had to leave to go back home, but my Mom stayed (they drove in separate cars - so glad they made that decision!) and went over to the Church with Victor to get the other kids from the pine car races.
Victor told the kids what was going on - I'm sure they were worried and confused, but they were amazing through it all.
When I was finally discharged Sunday afternoon, Vic drove me down to see Grant. It was heartbreaking to see him all hooked up to wires. I wasn't able to hold him. I remember I couldn't wait to get there to see him, but then I felt so helpless and scared when I was there, I wanted to leave. I was still pretty sore from my c-section, so we didn't stay long. My Mother met us in Saratoga and we took the kids out to dinner. They had been missing me, and had questions about what was going on.
The next week was a blur - but the schedule was pretty much the same every day. Get the girls to school, Keeland to preschool, Vic to work (he was filling in for me at preschool), Vic home, Keeland home, Vic and Jen to Albany, Mom watches kids, Vic and Jen home with take out, kids in bed, adults in bed. Start all over again in the morning.
Finally on day 8 in the NICU, Grant had surgery. They removed the tumor (which they said was a sacrococcygeal teratoma) and his tailbone. They needed to remove the tailbone so that the tumor didn't grow back. After surgery, we were able to see Grant again. He was in pain, and he whimpered - it was awful to see him like that! The nurses took such great care of him, but I was scared and helpless.
There were babies in the NICU who were much sicker than Grant was. My heart would break for them as I heard their alarms go off, or would see nurses scurrying around taking care of them. I would peek in their doors as we walked by - some were so tiny! I was thankful, but I was also scared and unsure - we had never been through anything like that before.
Friends from Church were so supportive. I had calls from friends, and offers of help from so many people. My kids teachers at school reached out to us, and even an anonymous friend stopped by the a huge blessing of a gift to help us during that time. To all of you - even if you never see this or read this - thank you. You'll never know what your love and support meant to us!
A couple days after surgery, the Doctors and nurses started talking about the possibility of Grant coming home! I was so excited!!! I don't remember the exact date, but I remember it was a Thursday and Keeland had preschool. The Doctors were optimistic that Grant could come home that day! There was so much to do to get ready! The NICU had a policy that we had to have the car seat inspected and paperwork signed off on that it was installed correctly, so my Mom and I drove around looking for someone to do it! (Which by the way, AAA does it!). Then, the NICU wanted us to come up with a solution for something soft to go under Grant's bottom that would still be safe for him to ride home in, but comfortable on his incision. I was literally DANCING when I got to Church to pick up Keeland and Victor! I was SOOO happy!!!! We went home to drop off my Mom and Keeland, and we checked the messages.
"Hello this is blah blah blah from Albany Medical Center NICU - we've been trying to reach you, please call us."
So, Vic called. I watched as his shoulders slumped, and his demeanor changed...
"4 More days?!"
I screamed.
LITERALLY SCREAMED.
I sobbed.
In that moment, I was RAW. All that hope and excitement gone - with just 3 words. 4 More days. He had been fine before, but due to where his incision was on his butt, it was a difficult area to keep clean. The nurse who had been on that night wasn't as dutiful as the others (and that's all I'll say about that) and Grant had developed an infection. It would be Monday at the earliest that he could come home, as he needed 4 days of IV antibiotics. I logged onto Facebook to give my friends an update, and I could hardly type through my sobs.
My Mom knows me oh so well, and at that point, offered to pack my other kids stuff up and take them to her house in Syracuse for the weekend. She knew I was just raw emotionally, and tired physically. They left.
PLEASE understand when I say that I know other people have gone through much MUCH worse, but this is just how I felt. I can look back now and see that everything would be fine, but then, I didn't know that and I was just so scared.
In Church that Sunday, I tried to keep my composure. But then we sang, "There is none like You, no one else can touch my heart like You do. I could search for all eternity long, and find, there is none like You. Your mercy flows like a river wide, healing comes from Your hand,
Suffering children are safe in Your arms,
there is none like You."
I was so upset I ran from the sanctuary crying. It just seemed so unfair that my perfect little baby boy had to go through all of that. He had done NOTHING wrong in his little life. Why him? I was angry. Not at God - but I was just mad. Mad at the circumstance. Mad. Dear friends came and tried to comfort me, but I'm afraid I wasn't very kind to them in that moment. They understood.
I laugh at myself here, because when Monday rolled around, I was a woman on a mission. My kids had come home Sunday night and I was DETERMINED that Monday would be the day my baby came home. I called EARLY that morning and said, "The Doctor said Monday and it's Monday. I don't care what papers I have to sign, my baby is coming HOME with me today. Make it happen."
I must have sounded threatening or something, because when we got there - no joke - they had a ankle bracelet on Grant! I think they thought I was just going to grab him and run! I wouldn't have done that, but honestly - I was getting DESPERATE to have my baby home! (which in hindsight seems very impatient and wrong - family members of Victors had their sweet baby in a Canadian NICU for over 6 months!).
Thankfully, it didn't come to that - he was ready to come home! We surprised the kids, and told them he wouldn't be home until the next day. It was so much fun coming home and surprising them!
Grant's tumor was benign, and they expect him to be just fine. Every 6 months he'll see his Surgeon, and once a year he'll see his Oncologist. They'll test his AFP levels (tumor markers) and if at any time they rise, they'll do more testing. He has seen them a handful of times and has already had his AFP levels tested twice, and they were in very good ranges. After he's 3 years old, we won't have to see the oncologist or surgeon again!
Grant is now almost one year old. Only one year old and he's taught me so much. Patience, trust, faith, love - and that God's got this. Every time we sing, "There is none like You," I just smile. I'm so thankful for that short season in my life - even though at the time it was very hard. Life is so fragile and it's a gift. I am thankful for every day I have with my children. There are days that are hard - but God is there. Holding us and loving us through it all. Grant was a surprise, and a HUGE blessing. I am so thankful that God knows - and that He's holding us though it all.
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