The end of baby A's story with Primary Children's Hospital

After they re-intubated baby boy, we were grateful to find that the staff was more cautious with getting it removed. He had a machine sitting next to his bed that monitored when he was actually breathing on his own and when the machine was breathing for him. Initially the machine was doing most of the work. This was somewhat concerning for us at first. If he needed so much help breathing on his own even after surgery what did that mean? The thought never occurred to me that he might always need help breathing. I'm glad that was never a stress I had. It was mostly concerning for us, because it meant our little boy was struggling. He was still on dilaudid at this time and that had a lot to do with his depressed breathing.

We had made it to Tuesday! I think I finally showered. We finally asked for a razor so I could shave my legs and look less amazonian. Baby boy, by the end of the day was getting much better. He still had not eaten or at least not the way you'd normally eat. He didn't really have a feeding tube though. It was kind of strange to me and a bit upsetting. The one thing I could offer him normally was food. And now I wasn't allowed. I was a pumping machine though. Which, for the first time in my life, pumping wasn't annoying. It was a welcome distraction from everything that was happening.

Wednesday rolled around and I think this was the day they extubated him. He was finally breathing more on his own than not. He still needed an oxygen tube in his nose though. We thought we were close to going home or at least getting out of the PICU! But they were being cautious and he was still struggling a bit. So we stayed.

Being extubated also meant he got to eat!!! It had been 5 days. Poor little boy had gone from eating 4-6 oz of milk to barely being able to tolerate 2 oz of pedialyte. But he was eating! He was eating!

I think I've said it already in past posts, but we were still in the mood to take our victories where we could get them. 

Baby boy, for the first time since we came to Primary's, finally fell asleep in his daddy's arms after his 2 oz's of pedialyte.

Later that night (Wednesday), I got to nurse him! I wish I could explain the connection this offers between mother and child. But I can't do it justice. For those who aren't married, it's like falling in love for the first time and you can feel it; you can feel it in your whole body. It's that moment when the love of your life kneels down and asks you to marry him. It's the moment when you find out you're pregnant and your whole body tingles. This is what nursing is to me. It's a sacred connection I get to have with my perfect little angel and I missed it. It was pretty emotional when I was able to finally nurse him. He was still connected to about a thousand cords and machines, but we made it work. He didn't nurse long, but I was finally able to do something for him!

I remember seeing several of the doctors and other staff come through excited to see baby boy breathing on his own and eating on his own. We had lots of eyes peeking in. It felt like they were almost as excited as us to see him improving.

I started to feel better about his prognosis. I became to feel like he'd be ok. We'd get to go home and he wouldn't have cancer. Sadly, their pathology team would come to us in the PICU and later on med/surg with the news that they still did not know what the tumor was. While in the PICU, we were told that they had sent parts of his tumor all over the country to the "best of the best" to read the stains. So far, we had them all stumped. They sent it further. And we still had no answer.

We were in the PICU until Thursday night. He spiked a fever a little before we left. Tylenol was given and luckily the fever left. But this also meant that once we got to med/surg we had to stay for at least 24 hours. He was still on oxygen at this point and couldn't leave because of that anyway. But he was well enough to make it to the med/surg floor! My mother was flying in on Saturday to help with our other two sweet little boys. And we were finally feeling like we could go home.

last night in the PICU

While we were on med/surg, we were given a little present by our baby. He gave us his first smile! It was perfect and just what I needed! He was happy and ready to go home. We just needed him to get off that oxygen tube. At least he was only on 1 liter by this point. Which meant we were close.

While on med/surg I wasted no time taking advantage of the severely reduced number of cords and held him! As much as I could!

Daddy and I had to share this room with another couple. Kind of weird. But at least we had a curtain separating us. And there wasn't really a place to sleep. But we made it work. We pushed two of the chairs together (Luckily they were the one's that could lie flat sort of like a bed.) and we had our head at each end and our feet together in the middle. Honestly, we barely slept, but neither of us wanted to leave his side. So this was our compromise.

We were glad to finally be getting our baby back. They took his oxygen off. His face was beginning to lose all the water in it and he didn't look so swollen. His beautiful bright eyes were back and we loved it!

We had one last visit on Friday night from the head of the pathology team. He told us that someone found what looked like a spindle cell. Which meant he could have a certain rare type of cancer. We were discharging in the morning on Saturday and my heart just sank. This was the worst news ever. I thought we were done. I thought he was going to be ok and then we had to hear this. The pathologist was very careful to say that it "appeared to look like a spindle cell, BUT there was a lot of blood from the tumor and necrotic tissue that made it very difficult to decipher what they were seeing, so he could not tell us with any certainty yet, that this was cancer."

Saturday at lunch time, we finally left the happiest sad place on earth, and went home. The feeling was surreal. The world was still turning outside. Things still happened without us. Driving home, it was sunny outside. Sun?? What is this sun? People were just walking down the street or cutting us off in traffic having no idea that we just went through the ordeal of a lifetime. And were still not done. It was an odd feeling.

I was scared to leave the hospital. He still had his broviac tube in. You can see it on his shoulder in the picture above. We had to sterilize it and flush it with saline and-- shoot-- I can't remember what else. But it was basically and anticoagulant so that the port wouldn't seal up. We had to do this for 3-4 weeks after we left the hospital in case he did have cancer and would need chemotherapy through this IV. We had a nurse that came once a week to our home to change his bandage. I've worked in home health, so I'm familiar with it, but being on the receiving end was a little strange.

All in all, it was nice to be home. It was nice to have my mom help for a week after we got back. It was nice to give him a baby blessing while my Dad and siblings were in town. They were able to make it for a few days. We got to bless him at my husband's grandpa's house and it was such a sweet blessing. I think the people we had there to support us and more importantly, to support baby A, made it a very special moment for us. Normally, baby blessings aren't done in homes, we do them at church. But because of the special circumstances of baby boy having a broviac tube still in, we were allowed to do it at home. I wasn't ready to bring him to church where sickness in November likes to roam.

It was nice to see our baby become his little self again. He was awake. Happy. A little cuter now with his manly scar. And such a treasure to keep.

Several weeks later, I got a call from the pathologist from Primary's. He had news for us. We were told that baby boy did not have cancer. They still were not 100% sure that it wasn't cancer, but they were more sure now that what they found in the tumor was something else. He told us they thought part of the tissues they could find were parts of his body trying to regrow his teste. And that we would just need to watch for anything unusual. But all in all. Our baby was ok.

He was ok.
:)

P.S.
Many wonderful people had come to help us and visit with us. We were so blessed to have dinner brought to us each night and have pleasant company to chat with. I cannot express how great this was. Cafeteria food. Although- surprisingly delicious- becomes rather boring when the menu doesn't really change. We had homemade food. We had cafe rio! Each time, we had great company. We had a care package given to us with food and toiletries and snacks. The hospital staff let us take pictures for our two little boys at home. They developed them for us and then gave us a little picture book with scrap paper, so we could send a picture book to the boys, so they could see what we were doing. *I still have that book*

They let us bring our children in and they gave them little hospital dolls and showed them all of the stuff that their little brother had attached to him. You can see one of the dolls with my mom and baby A a few pictures up.

A lot of sadness and extreme stress came from this experience. But so did a lot of goodness and love. I am grateful for the love we received from the very beginning when we first started our journey, a week before, when we took our little 6-week-old boy to the ER, not knowing what we were in store for. All the way to when we got home and had a woman from my ward, that I barely know, decide to bring us dinner.

Thank you all from the bottom of my heart.