Many people prayed for us. Theo was given a blessing the night before by his dad and granddad. Thank you everyone for your help!
The ultrasound we had at 2 months compared to the one at birth showed a decrease in kidney function on the left side. Dr. Ashley said he'd rather wait to do surgery until Theo is older, but since it was getting worse, he had no choice but to repair it.
The ultrasound had good news too. The ultrasound at birth showed that Theo's right kidney was slightly enlarged and had a valve that functioned improperly. The second ultrasound showed that had fixed itself! So he went into surgery with one good kidney.
Theo wasn't allowed to eat (drink, I guess since milk is a liquid) after 6:45 a.m. On the day of the surgery. I set an alarm for 5:45 a.m. I figured Theo would take a feed around 2 a.m., as is his pattern, and then I would make sure he got a chance to eat a second time, even if I had to wake him.
I put him down at 10 p.m. on Tuesday and then finished up some last minute hospital packing. Theo had been pretty needy and had only cat napped in my arms during the afternoon that day, so I had gotten very little done. I went to sleep at 11 p.m.
I woke up to a hungry Theo. I grabbed my phone and was shocked that it was 5:07 a.m. He had slept 7 hours straight!
I started feeding him as I developed a new plan to help him have as much as possible in his tummy before 6:45 a.m. rolled around. I figured that he was undoubtedly getting A LOT of milk quickly since he nurses and hadn't eaten in 7 hours. If I tried to keep him very awake, he would probably eat so much so quickly, he would end up spitting up a lot of it, resulting in him being hungrier.
Instead of trying to encourage a fast feed, I just held him and let him eat and doze and then eat some more and then doze some more from 5:07 a.m. until 6:45 a.m. He thought that was heaven. I also enjoyed cuddles with my son before having to watch him go to surgery. About 20 minutes before I had to cut him off from milk, I put him in a clean diaper and swaddled him. Then I woke him a bit so he would eat until I had to pull him off. Luckily, the swaddling worked and he actually slept until 8 a.m.
He was allowed clear liquids, which at his age means unflavored Pedialyte, so I put some in a bottle. At around 8:20 a.m. Theo acted hungry, so I offered the bottle. At first he refused, so I warmed it and warmed the bottle nipple in warm water. Then he put it in his mouth and took a sip. He didn't swallow, surprised at the new taste, but grinned at me like I was totally hilarious, the drink running down his chin. His expression seemed to say, "Mommy, this is silly. Give me milk." He nuzzled into my arm expectantly, but when I insisted, he chose to drink it. I had to cut him off at 8:45 a.m. He had drunk 1.5 ounces.
We gathered up the dog dishes and food and as a family walked Little Foot over to our neighbor's house. Johanna told us she'd take good care of him and wished us luck on the surgery.
I finished some last minute things as well as dishes and then we headed to the hospital. Jay followed us in the truck and we parked together and walked in with a ridiculous amount of stuff, it seemed. We got to the correct desk around 9:30 a.m., 15 minutes before our paperwork said to arrive.
After paperwork and waiting we talked to a nurse, then the anesthesiologist, then the surgeon, then a volunteer hospital worker, and then the nurse who would actually be in surgery with Theo.
We knew the surgery would be either low, by the bladder, or high by the kidney. The piece of information I hadn't known before was this: if the surgery is high, he has a 95% that this will correct the problem completely. If the surgery is low, he will need a second surgery in 2-3 years. The surgeon said there was an 80% chance the blockage was low. He wouldn't know until Theo was under and they ran a test using dye. Apparently Theo is so young, the radiologists were having a difficult time reading exactly where the blockage was because his body is so tiny.
We were told that after he was under using gas, they would numb him from mid torso down. They would also insert a breathing tube because he is so small and when his muscles are numb, he would need help breathing. This tube was removed before he woke up and before we saw him, so he would have no memory of it.
Jay dressed him in a tiny hospital gown with cute koalas in rocket ships on it. We were also allowed to put socks and mitts on him. It's a good thing I brought socks. Then we said goodbye at 10:45 a.m.
About 40 minutes later in the waiting area we got the call we were expecting. His nurse Janelle said the dye test showed the blockage was up high and that everything was going well. We were SO glad to hear that he was in the lucky 20% who don't need repeat surgery (provided this surgery is a success).
We watched the status screen for his number to turn purple to tell us he was preparing for recovery, which happened at 12:50 p.m. At 1:10 p.m. the surgeon came to talk to us and told us it went well and we would be called back to see him when Theo started waking up, in about 20 minutes. I asked how Theo would be after surgery and Dr. Ashley said hungry.
It was probably 40 minutes before we were called back. I had called my mom and alerted people over Facebook so that when I saw him I could devote all my attention to feeding, holding, and loving him. I thought I'd be too busy doing those things to call or text everyone.
They had put him in the back of the adult recovery area because he was the only child getting out of surgery that late in the day -- they try to schedule children surgeries in the morning to make fasting for surgery easier on kids. However, I think we were squeezed into a surgery time because Theo was only diagnosed 2 days before he was born when I had a routine sonogram. Dr. Ashley said that he had just done another surgery just like Theo's right before he saw us.
A few nurses were just standing in front of his crib admiring our cute, but drugged baby. His eyes were half open and he was not at all hungry, but looked comfortable. While he was still so sleepy, the recovery nurse showed us the new additions to our son. He had an incision about 1.5 inches long below his left ribs. It was glued shut so there was no dressing to change or stitches to remove. He had an IV in his left foot. They had put both socks on his right foot, which also had an oxygen monitor on it. His right leg had a catheter taped to it. Lastly, he had some heart rate monitor things taped to his chest.
Theo showed little interest in even seeing us, much less eating, so we just held his hands and stared at him. We were encouraged to let him sleep -- he was getting IV fluids to keep him hydrated, so sleep was good for him. After another 40 minutes we moved into his room and I think met the nurses, although I don't remember too much about them.
Since Theo wasn't eating and I hadn't pumped since 7 a.m., I realized I needed to pump even just a little. I had meant to pump right after Theo went into surgery, but completely forgot. I was hesitant to pump much, though because I thought Theo would wake up wanting to eat soon and I'd rather not have to feed him out of a bottle. All afternoon I waited for him to want to eat, but he didn't.
Jay got us food and I ate a ridiculous amount and then, exhausted but still worried about Theo, I laid down on the couch thing for a few hours. It's a good thing Jay was planning to sleep at home so he could work the next day because that couch folded down to a smaller-than-twin size.
Finally around 5:45 p.m. he acted hungry. I rang for a nurse to help me with all his cords. The advice was pretty much, "Here, pick him up and don't touch the incision or pull on the cords."
I think I could have figured that out on my own.
I laid him on his right side and we got the cords and tubes arranged. I had a hard time figuring out where to hold him. I didn't want the incision on his tummy to rub against me, so I didn't hold him as close as usual. Everywhere it seemed there were tubes and cords. It I pulled on the IV or catheter, it would obviously hurt my baby. Touching the incision sounded worse. Without his front resting securely against me and no great place to hold on, I was terrified he was going to slide or roll off the nursing pillow.
He ate for about 15 minutes and then started kicking his legs on the wooden arm of the chair. That's when he started crying in pain. It was 6:07 p.m. Jay took a pillow and put it between his legs, figuring it was an issue with the IV in the top leg. I called for pain medicine and tried to get him to eat and lie still. Breast milk has natural pain relievers in it. Theo wouldn't eat. Jay called again after 3 or 4 minutes of Theo screaming and the machines beeping that his heart rate was too high. This time our nurse came. She tried a few things, then said she wanted to flush the IV with saline to make sure it was working before giving him morphine. She got a second nurse to help and they determined it wasn't working. They took it out and Theo finally stopped crying. Then they redid the IV, this time in his right hand and gave him the pain killer.
They said, "Well that was a fast fix."
The clock said 6:45 p.m. It had been 38 minutes since he started screaming.
Jay got them to bring in a chair without arm rests for future feeds so Theo couldn't kick them anymore and got me set up for whenever Theo was ready to eat again. Jay dozed and I ordered dinner.
Later Jay finally had to go. I met the night shift nurse who I liked better than the day shift one.
At 10:45 p.m. Theo was finally awake. The nurse offered more morphine -- she had come on her own accord because she had noted when he could have another dose. See why I like her? I said I would try feeding him, since he was finally awake. She said that was good, and that he would recover faster without morphine, but that she would prepare some and if he was in pain to call and she would quickly give it.
I fed him. It wasn't easy with the cords and tubes, but he ate some, despite it still being rough to hold him in the right position without hurting him. I ended up hunching over him a little to make it work, which was tiring for me. He couldn't lie on his left side, so when I tried to feed him from my right side, I had to use the football hold. That really didn't work! I let him just eat from the left, knowing there wasn't as much milk there.
Around 12:30 a.m. Theo decided he was hungry. Hurray. He spent the night eating every hour or 2. I nursed him a little every few hours, but I finally just gave in and used bottles of pumped milk. It was so much easier to let him lie in the crib and not mess with trying to hold him. We had 2 more instances of Theo screaming while I tried to position him before or after nursing because a tube was being pulled.
At 3 a.m. Theo was awake after a feeding, but I had to pump, so I couldn't hold his hand or anything. I sang to him while sitting across the room and he suddenly started grinning and giggling at me.
Just seeing him clearly happy and comfortable made me physically feel better.
I had been so exhausted, but felt so much more rested seeing that Theo was obviously feeling well and eating. His pain killer had worn off at 10:45 p.m., over 4 hours earlier, and here he was alert and happy.
The night nurse Nora came in and asked, since he was awake, if she could take blood for labs. She couldn't get it from the IV (she tried), so she pricked his heel. He whimpered, but calmed pretty quickly, although his strong, kicking legs made the nurse's job difficult. She did end up pricking him again because the wound healed too quickly.
She also explained a lot of the things going on to me, like why a catheter is a good idea, despite being such a hassle.
I laid down in between feedings, but didn't get a lot of sleep, but was doing just fine. Sleep is for weaklings (just kidding).
The nurse stopped his IV fluids at 7 a.m. They had put lots and lots of fluids in Theo, flushing out his kidneys, but the doctor said it was enough. I would guess the other reason the IV fluids were allowed to stop was because Theo was finally eating and hydrating too.
The doctor came in at 9 a.m. and said Theo looked great. He took out the catheter (hurray!), and said that if things continue like this, we could go home that night. I asked when Theo could lie on his side with the incision. Surprisingly, the answer was, "Today. Do everything you normally do with him, so long as he seems comfortable." Our only restriction was baths and swimming.
After he left, the nurses came in to get more blood for labs. I told them what Dr. Ashley told me -- he was cancelling the labs since Theo looked healthy and he didn't want to prick him anymore. The nurses were happy about that and then said that since the IV and catheter were out, Theo no longer needed to be constantly monitored. The noisy, beeping machines were turned off and while Theo still had the leads to the monitors attached to him, they were disconnected from the machines. Since they were taped on or wrapped around his toe, rather than connected inside Theo, if the accidentally got tugged, it wouldn't hurt a lot.
I was so happy! I picked up my free Theo, carried him over to the couch, and nursed him easily. The only bad part was I had just pumped, so there wasn't a lot of milk for Theo to drink. I let him nurse for awhile, then pulled him a few inches away from me and fed him the bottle. Then when Theo finished, I let him nurse some more. Then I tried laying him on his left side. That worked too, even though less than 24 hours before he had been cut open. I was careful, but very surprised.
Theo was awake most of the day, eating often. When not eating he was surprisingly content to lie in the crib. Even with permission to lie him on his left side, it seemed like on his back in the crib was still going to be most comfortable for him. He never did take a good afternoon nap, preferring to cat nap, which has been his usual for the past 4 days and has been driving me nuts. I was still doing okay, despite running on little sleep, but I did lie down for 25 minutes while Theo just stared at the ceiling, I guess. That was my only sleep in the daytime. I hoped we were released while I still felt awake enough to drive home.
My dad stopped by to visit us too. It was good to see him. The original plan for Thursday was for my mom to come help while Jay worked, but she had been visiting Sarah in Denver and her Tuesday flight had been cancelled due to snow. She arrives today. She was really upset that she wasn't going to be nearby to help when Theo had surgery. So it was nice for my dad to take a little time off work to see us.
The doctor came by at 5:30 p.m., literally 2 minutes after Jay arrived from work. He gave us instructions and said he'd fill out our release paperwork and then we could go!
We packed up and changed Theo into something warm and signed paperwork and got out of there.
We did some mandatory things at home -- trash to the curb, getting milk in the fridge, mail, taking care of Little Foot, and then just ate and were happy. In fact, Theo was so excited that he was bobbing to the music, his version of dancing.
Around 8 p.m. I put on pajamas and got Theo ready for bed. He cried some when I tried to nurse him. We figured something was sore. Jay took him and discovered he whimpered when Theo tried to stand on Jay's lap -- his feet which had an IV and got 3 heel pricks must have been sore.
I was tired, but Theo was alert and active. Between being up most of the night feeding Theo and the stress of the surgery, I had finally run out of steam. I remember telling Jay, "He just isn't tired and I don't know what to do."
He was getting fussy and seemed sore. At 9:50 p.m. we gave him Tylenol. He hadn't needed pain killers all day at the hospital, but now he was sore. I reminded myself that when I had stitches, if you graphed my levels of soreness, it would not have been a straight line. Some days were better than others, and it doesn't mean the healing is going poorly to be perfectly fine one day and then the next to want a little pain killer. If his incision looks good and he has no fever (we checked, he didn't) then he is probably healing okay.
But he still was totally awake and I was so tired I wanted to die. I had tried reading scriptures aloud to him, and even that didn't make him tired. He was awake and slightly fussy and wanting me, not Jay. Jay did take him for awhile and quieted him for some time, but mostly Theo wanted to nurse and be with his mommy. I tried several things to get him to be sleepy.
Finally I turned down the lights and used an app on the iPad which had wind and rain sounds. Jay and Little Foot stayed still and quiet so there was nothing to look at. I rocked him and let him eat but didn't play with him.
I used to let him fall asleep in my arms, then wait ten minutes to make sure he was really out, and then transfer him to bed. However, recently he has been waking up when I put him in the bassinet. That ten minutes sleep becomes a power nap and instead of being sleepy, he is energized ready to go.
Trying to avoid this terrible occurrance, I carefully watched the clock and gave him only 4 minutes to be asleep before transferring him. If it didn't work, I figured he'd still be tired enought o try again. It took 3 tries, but that's eventually how I got him to sleep. I put the iPad underneath the bassinet, playing wind sounds, and then I finally went to sleep at about 11 p.m.
This morning I woke up and couldn't believe it was 7 a.m. Theo had slept for 8 entire hours! I had slept for 8 hours! Theo was stirring -- that's what woke me -- but not crying yet. I stayed in bed another few minutes, but got him before he started fussing much since he needed to eat. Besides surgery, he has never gone 8 hours without eating before.
Today he's had a few moments of fussiness during certain positions, and I have typed this on the iPad while he ate and enjoyed being in my arms, so I have definitely catered to him today. You see how long the post was and know I type slowly with 1 hand on the iPad. I have spoiled him today. But he's doing well and I am doing so much better after getting sleep. I'm sure I still have to catch up on more. In fact, he just fell asleep and I transferred him to his bouncer just 10 minutes ago, so I should go lie down again.
But to sum up, he had surgery. It stressed out his parents and he wasn't happy at all about not getting to eat. Then he had surgery, which will not have to be repeated provided the fix takes (95% of fixes like these take). He slept a lot after coming out of the anesthesia, but finally ate and acts like he feels really well, although maybe is somewhat sore. We will watch him and try to help him heal as best as we can. Thank you everyone for your thoughts and prayers.
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| The day after surgery after he got all his tubes and wires detached |
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| Just coming out of anesthesia |
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