February 5th – Day 9.
We quickly realized that we were not going home anytime soon. We had no clothes other than the pajamas we bought the day before and the clothes we wore to the hospital. Being military we couldn’t just call family to bring us things we needed, so we had to make due with what we had. After several days we finally decided that maybe we should get some essentials. So my husband left the hospital for the first time to get everything we needed… Won’t make that mistake again – ALWAYS HAVE A TRAVEL BAG READY TO GO!
Later that day Liam’s IV clotted up again. This meant he needed another IV for the 9th time. THE NINTH TIME. Our hearts broke knowing he would have to go through that process again. Our nurse was sweet enough to let us take Liam outside for a little bit before getting his IV. This was the first time we went outside in days. It was also the first time he was able to move without his IV so we decided to take his no-no’s off for a few minutes to let him be totally free.
Our time outside lasted about 20 minutes before it got too chilly. It was just what we needed though. It was nice to get out of the hospital room for a little bit and get some fresh air. Liam loved seeing all the dogs and people walking the hospital campus.
Liam still wasn’t eating or drinking. He would literally scream anytime we tried to feed him. The doctors and nurses had exhausted all options at this point. They really wanted to give Liam a NG tube but our surgeon said it was too risky being that he just had major surgery on his nose and palate.
Liam received his 9th IV that night before bed and man it doesn’t get any easier. It is so painful and scary for him. It’s one of the hardest things I’ve ever had to do is watch him get tons of IV’s over and over again.
I remember this night so clearly. I cried and cried to my husband. We were so frustrated, confused, hurt and heartbroken. We were frustrated not at Liam but at the fact that we couldn’t help him. He didn’t understand why we were still in the hospital or why he was in so much pain that he couldn’t eat or drink.
Days passed. Liam was showing no change.
We tried taking him down to the hospital lobby to give him a new environment. We tried taking him outside to eat. We even talked the woman in charge of the atrium into letting him attempt to eat in there even though you weren’t allowed to have food. We tried EVERYTHING.
The nurses and doctors were so confused. They had never seen this before. Yes, they had seen food aversion before but never this severe, this long. They mentioned possibly placing a G-tube but that wasn’t something we wanted to just jump and do. We along with Liam’s surgeon wanted to keep trying. We didn’t want him to have to go under anesthesia again. The doctors for days kept going back and forth about a NG tube and G-tube. They tried to convince our surgeon that it was the best route to go.
We started to realize that they were not agreeing. Our surgeon knew Liam would eventually come around. She wanted to give him more time. He did this before with his first surgery but only lasted about 7 days. This was a very long hunger strike. A G-tube was too invasive and we all knew that was the last resort option. Liam had already been through so much. Finally our surgeon gave permission to place a NG tube if absolutely needed.
February 7th – Day 11.
Liam seemed like he was turning the corner. He drank an ounce or so when he woke up. Throughout the day he drank some more.
It was looking really good. We were getting a little excited thinking he was realizing it was okay to drink.
So we decided to wait on the NG tube. They even took him off IV fluids to help him get the hunger sensation.
They told us if he kept up the intake he was doing we would be able to be discharged the next day. This was huge!
February 8th – Day 12.
Unfortunately it didn’t go as planned. Liam wouldn’t eat or drink. He screamed and cried the entire time we tried. He wanted nothing to do with anything. He was still on pain meds as needed so we knew it wasn’t only caused by the pain. Liam was afraid to eat. He associated pain with his bottle and food.
Later that night we were moved to a larger room after they realized we wouldn’t be discharged anytime soon. It had way more space and furniture in it. Liam had room to crawl and play. We hoped that maybe a new room and scenery would help him. We decorated his room with all the paintings we did in the atrium.
After being moved into the new room reality really sank in that we had no idea when we would be able to go home.
February 9th– Day 13.
We honestly didn’t think it could get any worse. I mean how could it possibly get worse?
But unfortunately things got way worse.
That morning the doctors came by and expressed their concern of not only Liam’s growth chart having such a significant decrease but also the lack of nutrition he was getting. They said that wanted to place a power wand IV which is similar to a PICC line to push TPN through. We had no idea what this was. We were so shocked. My entire body went numb again. I zoned out.
“How can this be happening?” I asked myself.
They explained that it would mean another procedure for Liam but not under anesthesia. They showed us Liam’s growth chart; he went from 66% percentile in weight to 3%.
This was so heartbreaking to see. We knew he was losing weight from just looking at him but we had no idea he lost this much. To see the curve just go straight down on the chart really hit us hard.
It was awful. Heartbreaking. I felt like somehow I was letting Liam down.
We decided to go ahead with the procedure because at that point we really didn’t have an option. We never thought in a million years it would come to this. We never thought Liam would have to be on TPN. No one did.
My husband and I were not allowed to go back during the procedure.
Yet again, we were sending our baby off with a nurse behind those big doors. I cried and cried and cried. I could hear him crying from our room.
My heart shattered. I didn’t even think my heart could break anymore after the weeks we had.
Unfortunately it was another failed attempt. They tried a few times but couldn’t place the power wand. They did place a larger catheter though so they could still push the TPN through just not all the nutrition that he needed.
They started the TPN that night at 10PM. They had to come in every single hour to check his IV to make sure that it wasn’t burning his veins. This as you could imagine was a dreadful time because it woke Liam up every time they checked.
He barely slept so when he did we really tried to leave him alone so he could rest.
A couple days passed.
Every morning at 6AM they weighed Liam to see how much weight he was gaining. The TPN helped him gain some weight.
We would attempt to feed him every two hours with the help of the nurses, doctors and speech therapists. We tried pudding, oatmeal, purees, peas, Pedialyte, water, milk, juice, formula, PediaSure – literally everything you can think of we tried.
Every night between 9:30-10PM they came to switch out the TPN for a new bag. It was such a sterile procedure that they asked us to wear masks and gloves. It was just so crazy that this was our life now. In the hospital for weeks, walking our son up and down the hallways to keep him calm while the other pushes his IV stand. Taking him to the atrium to play and get out of the hospital room for a little bit, this was now our life.
As the days went by Liam slowly started attempting to eat oatmeal and purees. He slowly started to eat more and more but still was very little. He refused to drink anything. We even tried flavoring his formula with grape (his favorite flavor at the time). Nothing helped.
February 12th – Day 16.
Liam woke up to a bouquet of balloons from my husband’s chain of command.
HE WAS SO EXCITED.
He thought they were just the coolest things ever and just kept tugging on the string.
He did unfortunately have a set back on his feedings. He stopped eating the purees and oatmeal all together again.
We noticed a week prior to surgery that he started having difficulty swallowing liquids, purees and thin foods. We thought it had to do with his cleft palate but he was still having difficulty swallowing even after having his palate repaired. We knew it would take him awhile to learn how to eat and swallow but something just didn’t feel right to me.
I expressed my concern to the doctors and our speech therapist. I thought maybe that it was making everything worse and could be a reason he didn’t want to eat or drink. I knew it wasn’t the full reason he wasn’t eating but I didn’t want to not mention it.
They said because he wasn’t far enough out post-op wise that they couldn’t do a swallow study because it wouldn’t be accurate.
So, we just kept attempting to feed him. He had to learn how to eat again. He had to get the strength and lose the fear.
It was heartbreaking to see him like this. It was mentally draining on all of us. We were sleeping on horrible couches that they had in the hospital room. We were eating out 3-4 times a day. Spending a crazy amount of money on food not to mention on all the coffee we had to buy because of the lack of sleep. We were stuck in this room 24/7 with the exception of the 30 minutes we went to the atrium to let Liam play.
Liam caught a stomach bug which didn’t help the situation at all. He was vomiting a lot and still refusing to eat. He had a fever for a few days and just wasn’t feeling well.
The doctors suggested taking a step back on trying to get him to eat and drink because of the vomiting. We knew he was hydrated and getting his nutrition from the TPN so we decided to not attempt to feed him unless he showed signs of wanting his bottle. We wanted to let him fully recover from whatever illness he caught.
We thought maybe not trying to feed him so much for a day would make him maybe wake up and want it the next day. Maybe he would forget about the fear and pain that comes with eating.
Liam got tons of gifts, packages and balloons delivered.
I meant TONS.
From family, friends, complete strangers, even classmates that we went to high school with. It was so heartwarming to see. He was so excited. It really showed us that we weren’t forgotten about. We had so much love and support from so many people. We really needed that. It gave us some motivation like “Okay we can do this. We will get through this and we have people that are there and care for us.”
By the end of the night, Liam had finally turned the corner a little bit and started feeling better!
He drank about 18 ounces of formula and even ate a little bit of purees!!!!
IT WAS A MIRACLE!
February 14th – Liam’s first Valentine’s Day.
He actually woke up that morning and said “Mama” instead of crying!
The nurses came by and dropped off a Valentine goodie bag for all the babies on the floor.
While Liam wasn’t eating even close to what he needed to be, the doctors wanted Liam to prove that he can maintain his weight, nutrition and hydration. They wanted to see him put on weight on his own without the help of TPN.
Around noon they took him off TPN. I was very apprehensive about it. I wanted to believe that he could do it but I just knew in the back of my head it wouldn’t go as well as we had hoped. We knew that we had to at least try in hopes to be discharged within the next couple days.
We felt like we were finally starting to see the light at the end of the tunnel.
We took Liam to do arts and crafts in the atrium. We wanted to at least try to let him enjoy his first Valentine’s Day.
I couldn’t help but be upset though. I was seeing everyone’s cute post on Instagram of their days and dinners. It just sucked. It sucked that we were still in the hospital. It sucked that Liam was still having so much trouble with recovery and eating. It sucked.
While we were in the atrium my husband snuck off for what I thought was to go to the restroom but when I returned to the room I saw roses, balloons and chocolates. He went downstairs to the hospital gift shop to get them for me even though they were way overpriced just to put a smile on my face. How sweet right?!
We ordered DoorDash for what felt like the 50th time that night and treated ourselves to a “nice” dinner. When I say nice dinner I mean Longhorn but it was so much better than the hospital food!
We fought with Liam all day and night to eat and drink. He barely had anything and we were so worried because he was no longer on TPN or IV fluids.
February 15th – Day 19.
We woke up a little nervous because Liam didn’t do well the day before with his feedings. They came in to take his vitals and weigh him. He had lost weight.
We felt so defeated.
After vitals, Liam took 4 ounces of formula! This was amazing!
We did our morning routine and went an played in the atrium while the doctors made their rounds. A couple hours later he took 2 more ounces!
After a very long discussion with the doctors, nurses, residents, speech, his surgeon, etc. we all decided that we thought Liam would do better at home. We knew he was a LONG way from where he needed to be. We knew he lost weight. We knew that he wasn’t eating or drinking nearly enough to stay hydrated on his own. BUT we also knew that he would be happier at home, sleep better, be with his doggies, his toys, his own room and crib.
We all knew Liam was very well hydrated and had enough nutrition from the TPN so we said why not try again? Why not go home now when he has a head start and see if he does better at home?
All we could do was try. The doctors agreed. The nurses agreed. Our surgeon agreed. We all agreed to take another leap of faith. They knew we would bring him back to the hospital if he needed.
I prayed and prayed that it wouldn’t back fire on us again. I was terrified.
The last thing I wanted to do was go home too soon again and end up back in the hospital. At this point though, nothing was changing. He wasn’t getting any better. He wasn’t getting sleep. None of us were happy. We needed to go home. He could feel the stress from us and the doctors.
So we did it.
WE WENT HOME!
All the nurses came by and said goodbye, wished us luck and made us promise to come back ONLY to visit and not be admitted (unless he needed to be admitted of course). We had so much stuff from being there for almost a month. We had two wagons full of clothes, flowers, balloons, stuffed animals, gifts, etc.
Walking out of that hospital with Liam – I cannot even explain the feeling.
It was relief, fear, anxiety, happiness, sadness – so much.
We were so overwhelmed with emotions.
The next few weeks were hard.
We had a lot of appointments for weight checks, a lot of appointments in Charleston, etc. Liam struggled a lot. We had to go to the pediatrician’s office a few times because he was so dehydrated, we were close to being admitted again.
It was a lot of frustration and confusion. We struggled a lot, especially when my husband went back to work. It was just me all day trying to get Liam to eat. I felt like I was going crazy. It was hard, it was really hard.
It’s still hard. Fast forward to now, June 15th.
We are still struggling. Liam is still having difficulty swallowing. He still doesn’t eat or drink great at times. He still chokes on his food. He still has an opening in his palate so food still comes out of his nose at times.
While he is doing a lot better than January, we still struggle. Some days are better than others.
Liam has been vomiting a lot. Some days he will throw up 15+ times.
He recently had a swallow study in March to see why he is having such a hard time swallowing. We received some very unexpected results. Liam swallows with his mouth open almost always. When he does there’s a bulge in his throat that blocks the liquid from going down so he’s basically water boarding himself. It’s something they have never seen before. They aren’t sure what it is or why it’s happening. They also aren’t sure why he’s vomiting so much and why none of the medication they have tried has helped him.
Liam will be going back into the Operating Room and under anesthesia in a couple weeks. They will be doing a few different scopes and some testing to hopefully get some answers. We are obviously not happy that he once again has to go into the OR and be put under anesthesia but we are hoping we will get at least one answer if not more. Unfortunately because of everything going on with COVID19 he will have to be tested for it prior to his procedure.
We are very nervous and pray the results aren’t too alarming. This is not what we expected 4 months post-op but we are here and we are handling it. We have been through worse and have overcome it so we will get through this too.
Liam has also started speech and feeding therapy! He will go twice a week for at least the next year maybe longer depending on his progress.
Liam is so unbelievably strong. He amazes us every single day with his strength.
As always, we want to say thank you to all of you for continuing to stick by our side. The love and support keep us going. You have no idea how much it means to us to see so many of you love and support Liam.