It was supposed to be a simple tonsil surgery. My baby was supposed to go home the next day. Today we should have been decorating Christmas cookies, wrapping presents or planning to go see Santa and Christmas lights. Yet, today we’re marking our 6th day of being in the hospital, 4th day in NICU 2 hours away from home, with the promise of even more days in the hospital.
Today my view, while I type, is my sleeping baby with IVs, oxygen tubes and an NG tube in his nose beside me, a tired husband sleeping in the rocking chair and a huge window that looks out over the Blue Ridge Mountains.
I’m using the blog to keep everyone updated. We’ve gotten so many calls, messages, texts and comments about him. Thank you all for praying for him! I’ll be updating this post here each day with his progress.
What Started This?
Jackson first started to feel bad around the middle of August. It was actually the day of my brother and sister in law’s baby shower that prompted us to get him to the doctor. He woke up and was feeling fine and by the time we got ready and made to the venue to start decorating for their baby shower Jackson felt like he had a fever and had a little rash on his chest.
His daddy, Thomas, drove him to Urgent Care while I stayed to decorate. We thought it was maybe because it was teething really bad, but halfway through the baby shower, Thomas called to tell me that Jax had strep throat.
Bummer. Poor baby!
He got some antibiotics and started to feel better.
He went back for a check up and everything looked great. His eardrums looked great, eyes looked perfect, no fever, this throat showed no signs of strep. However, his strep test came back positive.
So we went back home with a happy baby and antibiotics.
This went on for a while. He felt great, he didn’t have any signs of strep. We went back and forth to ENT offices and his doctor’s offices and he always had the same results. Perfectly happy baby with no signs of strep except the strep tests kept coming back positive.
At the beginning of December, we were done with waiting, hoping and giving him medicines. We need answers, and I wanted to get that negative strep test. We went back to ENT and asked for more help.
His doctor began to worry about him getting scarlet fever and another doctor came in for a look and consultation and said we needed to get him into surgery right away to get his tonsils out because they were just harboring the bacteria.
Surgery is Scheduled…
So we left ENT that day with a happy baby and a surgery scheduled for the following week. I was nervous but everyone assured me that this was a simple thing and he would be home the next day.
My mother intuition told me that we would be at the hospital longer but I just shrugged it off as nerves.
We prepped ourselves for his surgery, packed a hospital bag for overnight and got ready to take our baby for his first surgery. We knew he would have to stay overnight because of his age (14 months) and we were ok with that.
Surgery Day is here!
Last Thursday (the 13th) we arrive at the hospital at 530am to sign in. The registration lady got us to sign some papers, pay the bill for the tonsil surgery and gave Jackson a sweet little puppet doll to keep him happy.
We got upstairs to one-day surgery. They dressed him in his little hospital gown and he played with us and watched Thomas the Train while we waited. His nurses checked on him, the anesthesiologist came in and talked with us and his doctor stopped in to check on him before surgery.
His only concern was the fact that he didn’t get breakfast. haha
About 7am they took him back for surgery and we headed to the waiting room. 20 or 30 minutes later, they were already buzzing us back to let us know he was in recovery and headed to his room soon.
That was fast.
His doctor came out and talked to us and let us know that everything went well. He told us that Jackson would be ok with a little pain today but for us to expect that tonight may be a little rough.
We thanked him and went to see our little one in his hospital room. He was hurting but after a few snuggles and some pain meds he was ready to sit up and have some ice cream.
We played a little and then the children’s floor got some special guests. The NASCAR Foundation from Martinsville Speedway came by and gave all of the kids sweet little NASCAR teddy bears. It was so sweet!
After a few hours and a few bites of ice cream and jello, he was getting restless. We got permission from his nurses to let him walk around a little. They brought us some little yellow socks that were huge on him haha and made him look like a little duck.
We put them on him and helped him walk around the Children’s Floor of the hospital. His nurses were amazing and every time he came waddling up the hall to their desk, they would say, “Here comes our little duck” and they stopped to talk to him and tell him that he was the cutest little duck ever.
We had some visitors that evening and then we settled in to get some rest.
We’re headed downhill…
We didn’t get much rest that night. Jackson was fussy and we spent most of the night singing to him, cuddling him and getting him to relax. Friday morning he acted like he was hungry so we fixed him a little bottle. He got about 2 ounces down and started throwing up green tummy bile.
Yikes, we had been given to OK to give him something to drink but maybe he just wasn’t ready. So we rested some more and he started throwing up more.
I walked up to the nurse’s station to get the nurse so we could change his gown and sheets. By the time I got back to the room, Thomas was wiping Jackson’s face and there was blood on his blanket.
Mom Freak out. It was just a little and the nurse told us that it was most likely blood on his stomach from the surgery. The doctor came in to check on him and they called in some nausea medicine for him to keep him from getting sick.
Then while they were cleaning him up and I was trying to comfort him something happened that has been playing over in my mind for days.
It was horrifying. My baby had a water fountain of blood shoot out of his mouth and land everything.
We set him up, the nurses cleaned him up and we sat him up while the nurses got a doctor.
Then another gag and black/dark red blood poured from his little mouth into his lap as if we had just been tossed into the middle of a horror movie.
I lost my mind, Thomas started cleaning him up. The on-call doctor came and checked him. It was determined that he had dislodged a blood clot from surgery and that he has swallowed some blood.
He has cleaned up again. Then we went on for a few more hours of him resting and throwing up green stomach biles which they said was normal. We tried to lay him all sorts of ways to make him feel better and he flopped on to his stomach and rolled around. I paniced, I asked questions, I held him and laid in the big crib with him. He was pitiful.
He was having a recovery & I wish I could trade places with him!
Saturday morning at 12:45am I woke up to him sitting up in his hospital crib gurgling and rubbing his face, I jumped up to find him and his crib covered in blood.
2nd Emergency Surgery
His nurses and his surgeon doctor was called in and he was rushed to the operating room.
The bleeding was stopped, breathing way cleared and he was in recovery by 4am.
He had about 3 ounces of blood removed from his stomach during the procedure this morning.
We were back in our room by 530am. He had a breathing treatment in recovery and then he had an xray this morning as well as 2 more breathing treatments in his room through the morning and early afternoon.
His doctor is worried about the possibility of pneumonia. I was worried about the fact that his breathing was so labored that his chest was dipping in and out so much that I could see his rib cage. His oxygen levels were great with him being on extra oxygen but we, along with his nurses, kept a close eye on him.
Then his doctor came in to see him after reading his xrays and told us that he needed to be transferred to another hospital. He needed to go to a hospital with a better children’s care team at a bigger hospital about 2 hours from us. He has already called and there was an NICU ambulance on the way to get him.
Shortly after that, the amazing crew from Carillon in Roanoke, VA was there to pick him up.
They were so wonderful. We followed behind them in our car and the paramedics called us twice during the 2-hour drive to give us updates and let us know how it was going on the ride.
NICU & His 3rd Emergency Surgery
By the time we got parked at the hospital and got up to his room, Jackson was already in his hospital crib and the doctors had already started running tests.
He was put on oxygen and they had to put his IV in a vein in his head because they couldn’t get a vein anywhere else. He has been pitiful
They found out that Jackson had a herniated diaphragm & his small intestines and colon were are pushing into his lung causing him to be unable to breathe.
They took him back into surgery at 445am Sunday morning for his 3rd surgery of the week.
At 1015am he was out of surgery, back in ICU but stable.
They were able to fix the hole in his diaphragm without a patch and put the intestines and colon back where it was supposed to go but they did have to remove his appendix. After the 3rd surgery, his lung did have some fluid around it and under it but it had re-inflated and was doing good.
His doctors and nurses in both hospitals. The NICU surgeon talked to us after surgery today and said it seems like the herniated diaphragm has probably been there since birth, it was just hidden behind his liver so no one knew it was there (and he hasn’t had any trauma before now) and because he is so little the pressure on his little body from the 2 surgeries caused it to erupt and push up into his lungs.
The doctors and nurses here have been angels! I don’t know how they keep sane by working in the NICU. My heart would be broken every single day.
Update Monday: 12/17
They say that he will be here a week or longer. Although we hope to be home by Christmas.
Jackson is doing well. He had a xray this morning and they said his chest and lungs look great. He has opened his eyes a few times, puckered his lips to kiss us and squeezed our fingers. He is still not able to cry but when he gets upset he lets out 1 or 2 tears which is so pitiful.
He still has an NG tube and is on oxygen in NICU but his doctors are happy with his healing ❤
Also, we had a wonderful surprise this morning. Someone who we never met in person (Becky was introduced to us by a mutual friend in Roanoke (Liz) a while ago through email) showed up at the hospital today with a gift card to the coffee shop downstairs for us and it made me so happy that I felt silly for almost crying over a gift card. It’s amazing how little acts of kindness so such a long way when you’re backed against a NICU wall ????????????
Also, Thank you so much to my blogging friends and non blogging friends for sharing my recipes and links to my blog over your social media accounts! This means so much to me! My blog is my job and the holidays are our busiest time of year but with us being in NICU my work, blog and social blog shares (other than the ones I already had scheduled) have been put on the back burner. Y’all have helped me out so much! Thank you!
The amount of support we have received from everyone has been amazing and we are so grateful. Thank yall for the prayers, messages, comments, texts, donations, gifts sent to Jackson, Cards sent to Jackson, visits and the sweet drop-offs for us at the NICU. Y’all have blessed us so much. I don’t know what we would do without our support system of family and friends!
Update Tuesday: 12/18
Today was good. Today was better.
Jackson is still in NICU and probably will be for a few days. However, he came off oxygen today! He still has his nasal cannula in in case he needs it but he is doing great without it. We also got some smiles and laughs out of him today!
He slept a lot and then we had a surprise in the NICU.
Santa and his elves came to see Jackson today! Ok so Jackson was asleep for Santa’s visit oh it was so sweet.
I wasn’t sure if we were even going to be able to get a picture of Jackson with Santa but we did!
It’s not the traditional Christmas photo, we look a mess, we need sleep, but our Mommy and Daddy hearts are feeling the Christmas spirit today!
This mommy squealed like a 3-year-old when she saw Santa coming!
As soon as Santa left, Jackson woke up.
We laid him down and thought he would just go back to sleep.
And then he sat up on his own and started playing with his toys from Santa!!!! The first time he has set up since Friday! Ahhh ???????????? If all it took was getting Santa here with some toys, we would have found Santa a few days ago haha ????
We had a sweet friend/blogger bring us dinner too.
Who knew a dinner delivery & an extra bag of plates and drinks could mean so much! Thank you, Becky! Dinner was fantastic!
Wednesday Update: 12/19
This morning we got moved over the regular side of pediatric and out of NICU/PICU!
Jackson still has his NG tube in but he is off of the oxygen now. YAY! We’re one step closer to going home. He still can’t have anything to eat and if his NG tube isn’t out tomorrow they’re going to put in a PICC line to get him some nutrition going. 🙁 If you don’t know what a PICC line is, it’s a catheter/long term IV inserted into a vein in your arm, leg or neck and they use it for for long-term antibiotics, nutrition and medication.
Other than a few visits from his doctors not much went on today. Jackson took turns napping in our laps today and we spent a lot of the day watching movie and getting in lots of snuggles.
We we did have a sweet visit from some volunteers and they brought Jackson some books for Christmas!
My Trip out of the room…this shouldn’t be so hard but it was…..
Now I did make a trip out of the room though. I KNOW, I KNOW. Shouldn’t sound like such a big deal. ..
This was pretty much the first time I’ve ventured farther than down the hall from him since he’s been in the hospital. I didn’t go far. I just ventured down to the gift shop in the lobby.
We don’t know if we’re going to be home for Christmas yet. I asked the doctor today.
She said maybe but she couldn’t really give me an answer. She said he could be here a few more days or another week. So at this point we’re just taking it a day at a time.
Even though we’re taking it a day at a time, I wanted my baby to have a Christmas tree for his hospital room. So, I forced myself to get out of the hospital room and take a breather by going on the hunt for one.
I took a deep breath, kissed his head, left him to cuddle on the couch in his hospital room with his daddy and started walking towards the double doors to leave the pediatrics unit.
I made it through the doors. Deep Breath.
The farther I got away from his room the more my heart started to race. I took deep breaths and made it to the elevator. I shouldn’t have this much trouble just walking down to the gift shop but you see…the last time I left his hospital room for more than a few minutes I walked back into him throwing up blood everywhere.
That’s all I could picture in my head as I pushed the button in the elevator. Deep Breaths again.
A lady and her little baby got on the elevator with me a few floors down. The little one was about Jackson’s age and had on a sweet little-crocheted jacket. I told them how cute it was. She told me that they just left a work Christmas party (I’m guessing she is a nurse here) and that she brought her grandson because he loves to flirt with the nurses.
I wanted to tell her that my Jax is a little flirt too and that I wish we had just left a party with our little guy too but it wouldn’t come out. I choked it back down and smiled at her instead.
Then another floor down…more people got in the elevator. Deep Breaths. After what felt like forever of being smashed into the back corner of the elevator we finally made to the lobby.
I made my way to the gift shop. By this time my mind is a fog. I want to jump back on the elevator and go back to the room. People are passing by and talking and everything sounds like mumbles. It’s like being on an episode of Snoopy where all the adults sound like “WOMP WOMP WOMP”.
The gift shop is a lot bigger than I expected it to be. I look over a few things but I’m not seeing anything I can use for a Christmas tree. A lady that works there ask me if I’m looking for anything and I let her know I’m looking for a small Christmas tree for my baby’s room. She shows me a few Christmas decorations but they’re aren’t any trees. She takes me to the other side and shows me all of the stuffed animals and balloons, I try to be polite and pay attention but all I can think about is how my heart is sinking because there was no tree.
Silly, I know but I couldn’t help it. I thanked her and walked around for a few more minutes. Right before I walked out I caught a glance of some little red cardinals clips out of he side of my eye. I turned to look at them and there sitting below them, pushed against the back wall was a little tree. It had two little cardinals clipped into the branches.
I reach down and pulled it out of the corner. It was perfect. I cried in the gift shop.
Shopping for my baby’s Christmas tree in a hospital gift shop was not part of my festive Christmas season to do list.
A tree with lights, a poinsettia clip, a little craft time to tie some Christmas tags into ornaments and we had a Christmas tree!
Jackson loves the lights of his little Christmas trees that’s sitting in his hospital rooms now. My Christmas loving mommy heart is full.
Thursday Update: 12/20
Today was the day that his doctors were supposed to put in a PICC line in but this morning Jackson woke up and decided he had had enough of his tubes and pulled his NG tube out of his nose and tummy.
So we asked them if we could keep the tube out for a little bit and see how he did and they said that was fine. Today he got his first personal lunch tray from the hospital and has managed to drink a little bit of apple juice and some chicken broth in his bottle all by his self. This is the first time he has been able to eat anything for an entire week. He is in a bit of pain today and is resting a lot but we’re hoping that we’ll be able to keep the NG tube from having to go back in later. They also took the bandage off of his incision on his stomach and said that everything was looking great so far.
We also tried to be a little festive and get a Christmas photo with his tree haha. He wasn’t feeling it haha.
Friday Update: 12/21
We made it down to the play room today. We didn’t stay long because we didn’t want to over do it but he was getting so restless in the hospital room. He loved playing with the toys and with a few other little kids that had made it down to the play room.
His favorite part of the playroom was the play kitchen and the grocery cart.
We’re so happy with how well he is walking after all of his surgeries this week.
He’s doing ok with eating but not great. He is mostly drinking chicken broth from his bottle and he is sipping on a little bit of milk too. He’s having issues with eating from a spoon though 🙁
Saturday Update: 12/22
Christmas miracles surprise us all the time but this year these Christmas miracles are extra special.
Jackson’s doctors came in the morning and decided to put off the PICC line procedure for today and asked if we would like to see if he would try to eat some crackers or cheerios instead. Of course, we said yes. So we gave him some cheerios and a biscuit and he sat quietly munching on them while watching Christmas cartoons.
Then he stopped eating, turned to his right, reached out his hand like he was holding someone’s hand and started smiling. Then about 30 seconds later he went back to eating his cheerios and watching TV & I felt this overwhelming calmness. I’m 99.9% sure he was smiling at either Jesus, his guardian angel Toni & maybe even his Great Grandma Mary ❤????That was some major calmness so I’m thinking it was all three together.
Saturday Afternoon Update: 12/22
We had such a sweet surprise today!
We are still praying that we will be home before Christmas (we are hoping for a Christmas Eve discharge) but the nurses and volunteers at Carilion have gone above and beyond to bring the Christmas spirit to the kids and parents here.
Today they set up “Santas Workshop” and we got an “appointment with the elves” to go and fill a Christmas pillowcase with toys for Jackson for Christmas.
(The Christmas Pillowcases were handmade by volunteers!)
The elves will wrap them this weekend and “Santa” will deliver them to Jackson’s room on Christmas Eve if we haven’t been discharged before then!
Y’all…I’m donating to and supporting the Children’s Floor of our local hospitals for the rest of my life after this stay! ❤ I also just bought my husbands Christmas gift from the Hospital Gift Shop… haha never done that before lol There is a first time for everything haha.
Sunday Update: 12/23
“On Dasher, on Dancer, on Prancer and Vixen
On Comet, on Cupid, on Donner and Blitzen!
To the top of the porch, to the top of the wall
Now, dash away, dash away, dash away all!”
We caught a ride on Santa’s sleigh and we’re finally going home from the hospital TODAY! Merry Christmas!!!
Thank you so much to everyone that called, messaged, e-mailed, texted, came by, brought us food, prayed for us and donated to the fundraiser for Jackson’s medical bills that my best friend set up for us! Y’all are so amazing and I can not thank you enough! I don’t know what we would do without our support system of family and friends!
We made it home just in time to celebrate Christmas at home and I couldn’t be more thankful to have a happy and healthy baby at home!