I have so much to share so it's hard to know how to begin. We're still in the hospital and I am back to multi-tasking as I type this and sway/bounce at the same time with Isaac in the Beco. First of all, he doing great. Walter and I are doing okay. He's probably better off than me today, but we're both ready to go home and get out of this place. Here's how this shindig went down:
I think I slept for two hours the night before the surgery. I set my alarm so that I would wake up at 2:30 a.m. to nurse Isaac for the last time. Because he's breastfeeding, he could eat up to four hours before the surgery. There was really no need for the alarm. I took a shower at 2 a.m. and then woke Isaac up at 2:45 to nurse. He woke up at 5:00 a.m., which was perfect because that's when we had to leave for the hospital. He was so happy and content that morning. I guess we were glad he didn't know what was coming but also thought it was horrible unfair for him not to know what was coming. We arrived at pre-op by 6:00 a.m. and my parents arrived shortly after us. We waited around and my sister came and then they called us back for pre-op. The first thing we did was put a giant purple hospital gown on him and then weighed him. Yay, he weighed 12 pounds 12 oz.! Then all the residents and surgical teams came by and asked the same questions over and over again and told us the same things over and over again. They even initialed Isaac's forehead--I don't know, we thought it was just a tad obvious where they needed to do the surgery.
At 7:30 a.m. it was time to give him up. I was a crying mess as the resident held out her arms to take Isaac back to the operating room. Thankfully he was almost asleep and wasn't crying at that point. After they took him away Walter and I both fell apart. We went back to the pre-op waiting room where we were asked to stay for one hour (in case the surgical team had any further questions) and at that point they would page us and let us know that the surgery started and we could move to a different room. By 9:30 a.m. we still had not heard anything so the receptionist called the operating room and they said they were having a really hard time establishing the IVs. Of course that was upsetting because we were imagining how many times they were poking our little boy. Thankfully he was already put to sleep, but still. The surgery finally began at 10:02 a.m. and altogether took twelve hours.
My parents, sister, and Sarah kept us company until the surgery was over. Thankfully we had a pager with us and someone in the operating room gave us hourly updates. At one point the neurosurgeon came in to talk to us and told us that the bone was more severely pointed than they initally thought, so the reconstruction was taking longer. They also had to stop some bleeding but thankfully it only required one blood transfusion. I thought the waiting would be the hardest part, and don't get me wrong, it was really hard, especially since we knew exactly what they were doing to Isaac, in hindsight though, the following days have been much harder.
|Day before surgery|
Walter tried to distract himself by playing Sudoku. Lack of brain power kept him at the "easy" level.
Thank you Ronald McDonald Family Room for super comfy chairs!
Thanks to my friend Jamie, this book kept us distracted for quite a while.
Because Isaac is exclusively breastfed, I had to make sure I started pumping in order to maintain my supply. This is the conversation that I had with the PICU receptionist when I went to ask where I could pump:
"Hi, my baby is in surgery and I need to pump, so I'm just wondering where I can do that."
"Oh boy, I don't know, the PICU is for babies and kids, so we don't have a place to pump."
Um, that doesn't make any sense...
"Well...I'll call and ask someone because this used to be the NICU and we used to have a pumping room but no, nope we don't have a pumping room anymore. Okay, let's see...(gets on the phone and calls person number one) Hi, this is Estella from PICU, I got a mom here who needs to PUMP (note emphasis), yeah, she want to PUMP, do you know where she can PUMP? No, we don't have a PUMPING room down here anymore. She said she would PUMP in the bathroom but they're cleaning it right now. Looks like he's almost done...(calls person number two, three, four, five...finally calls the lactation consultant from the NICU).
After all of that, turns out there isn't a PUMPING room, so I used the bathroom. Pretty ridiculous for a hospital and I must say, the lactation consultant was so embarrassed that they didn't have a place for me to use that she gave me a tote bag, a gift basket with stuff for Isaac, and a special menu to order food from. So it all worked out and honestly, I really didn't mind pumping in the bathroom, it was just disappointing.
When the surgery was finally over I literally ran down the hall to see him. That first look at him was heartbreaking. He still had the breathing tube in and would have to have it in over night (also not what we expected). Even though his head had a giant bandage on it we could already see some of the success of the surgery. We learned from the PICU doctor that when they tried to extubate him he stopped breathing and they spent two minutes resuscitating him. Talk about scary. My parents, Jesse, and Sarah saw Isaac that night and then headed home. I don't know how we would have made it through the day without them.
Lots of drugs
That night was the worst night of my life. Isaac was on high doses of sedation and morphine but still fought the breathing tube and was extremely upset all night. The stellar mom that I am, I almost passed out twice from exhaustion and just the overwhelming situation in general. I spent much of the night trying not to black out and the doctor said that if I didn't get better they'd have to take me down to the ED (Emergency Department). Yeah, wouldn't that have been embarrassing. Walter was great with Isaac that night. I felt so inadequate and useless and sorry for Isaac that I wasn't there for him.
Wednesday, Day 1 Post-Op:
At 8:00 a.m. the doctors agreed that Isaac was breathing well on his own so they removed the tube and he became much happier. Due to the morphine he was out of it most of the day. We couldn't try nursing until a few hours after the tube came out, but he wasn't interested so we didn't push it. The first time I held him though...wow, the only way I can describe it is if you've ever had a baby and the feeling you had holding your baby for the first time--that's what it was like, and once again, I was overcome with emotion.
After taking the catheter out during the day, they had to put it back in later that night because his bladder was so full and he was unable to pee.
Holding his hand was the thing that comforted him most in the first three days.
Thursday, Day 2 Post-Op:
If Tuesday night was the worst night ever, Thursday was the worst day ever. Isaac was getting progressively more swollen. He went from my long and lean six month old, to a nine month old, to a giant twelve month old in a matter of days. Actually we just weighed him and he's gained over three pounds in fluid. Anyway, the problems with Thursday went as follows: They were pumping more and more fluids into him and of course for pain he was still on the morphine. Even though he was down to half doses of the morphine, he was still very out of it and also very, very swollen. It felt like everyone on the planet was asking me if he'd nursed, if we'd tried, if we'd tried a bottle, if we'd tried pedialite, blah, blah, blah. What, you think I of all people don't want my baby nurse, WHAT IS WRONG WITH YOU PEOPLE???? Okay, so you can sense my frustration. So in walks this woman who introduces herself as a dietitian. And the conversation went as follows:
--Hi, I'm blah blah the dietitian and I hear you're having problems feeding your baby. (no, I'm not having problems, he just had his head cut open and remodeled, is doped up on morphine and is swollen to three times his normal size...WOULD YOU FEEL LIKE EATING...IDIOT)
--I think he's just not interested yet. He's very tired and has been given a lot of fluids. He won't take a bottle and never has.
--Well, I'm concerned about his nutrition intake, have you tried breastfeeding him?
--Yes. If you're really concerned we could try giving him breast milk with a syringe or eye dropper.
--Well, I don't think feeding from an eye dropper is a reasonable bridge from breastfeeding. It's unreasonable for him to go home feeding from an eye dropper.
--Obviously (IDIOT) he isn't going to go home feeding with an eye dropper. If you are truly concerned about nutrients I'm willing to try the eye dropper because he is too tired to nurse.
--Have you tried breastfeeding him?
--What was his birth weight...blah blah blah.
--Look, I weigh 114 and am 5'2", my husband isn't big or tall and neither is either side of our family. So we don't expect Isaac to be big. He's consistently been in the first percentile and the pediatrician is not concerned.
--Okay, well have you tried breastfeeding him?
--Blah blah blah...she said more dumb stuff...
--Okay, well, I'm going to let him rest now and we'll try nursing again later. Then I looked down at my computer and she got the idea and walked out of the room. I told them not to let her back in our room.
Well, after all of that I was mad, really mad. So I called a trusted La Leche League Leader whom I've known most of my life and she reassured me that what I was doing was right and then she contacted the lactation consultant who came to our room and was all like, "duh, of course he doesn't want to nurse, you can just look at him and tell that!" Then we felt better and decided not to worry about it anymore.
I was able to take a nap that afternoon and woke to find out that none of three IV lines were flushing, which means they aren't good anymore. This meant they had to establish a new IV line which took over an hour and I think at least five people tried and he was poked at least five times. IT WAS HORRIBLE and I was mess. Thankfully the Child Life Specialist happened to walk in our room a few minutes before this ordeal began and she spent about two hours in our room and was extremely supportive. As was my sister. I don't know if we would have made it through all of that without Jesse there. They were discussing putting in a PIC line which would have gone to his heart or a feeding tube. Thankfully though, literally an answer to prayer, one more nurse came in to try and she got a working IV line. After that we were all exhausted and Isaac was finally able to drift off to sleep when neuro randomly decided that he was stable and we needed to move to the third floor. WHAT?! ARE YOU PEOPLE TRYING TO TORTURE US? So at 8:00 p.m. we moved to the third floor where they initially put us in a double room but then half an hour later we moved to a single room. That night I was so out of it you would have thought they'd given me a dose of morphine (actually, I kind of wish they had).
Friday Day Three Post-Op:
All night the nurse was pushing major amounts of fluids into Isaac's system. The new concern was that he needed to pee ASAP and that just wasn't happening. The nurse took an ultrasound of Isaac's bladder and saw that there wasn't much urine in there so she was like, hmmm, I wonder where all of that fluid is going? She unhooked the IVs because his arm and hand were swelling up like balloons and then we saw that he had a horrible tape burn on his arm. She picked up Isaac to hand him to me and Walter and I gasped as we saw where all of the fluid was, in his back there was a giant hump of fluid. Oh my goodness, it was horrible and Isaac was so uncomfortable. I held him and offered for him to nurse and as he was just hanging out there, barely latched on, he started sucking. You can't imagine the relief Walter and I felt. I just cried and cried because he was finally nursing after three days and I sat in that moment and watched him and held his little swollen hand. Just when he started nursing plastics came in because they wanted to look at this horrible cut on his hand and also check the drain. I just said, "no, no one is touching him, he's nursing for the first time in three days, don't touch him and stop talking." And Walter told them that they needed to give us a moment because this was very important to us that he was nursing. They were understanding and came back later.
I almost forgot. In the midst of all of this, the IV team arrived and wanted to try for another IV line. I told the nurse I needed to talk to the doctor because we didn't want him to have any more IVs, morphine, or fluids. Someone from neuro came in and was wonderful. She agreed that since he started nursing we could continue to nurse and possibly try to give him more breast milk with the syringe (finally a sane person). Thankfully though he continued to nurse so well that we didn't need to use the syringe. The remaining concern was that he needed to pee. They did a straight cath, which just means that the catheter doesn't stay in, they take it out once the bladder releases the urine. Then the ultimatum was given, he had to pee on his own by 8:00 p.m. So we nursed and nursed and nursed. I brought baby lotion with me so we did some massage to try to get fluid moving. I think at 7:00 p.m. he had a wet diaper! Trust me, we were high-fiving with the nurse!
That night Sarah and Michael, and Jesse came to visit. We had a great time laughing and hanging out and it was just a relief to get our mind off of everything that had happened for a couple hours. For some reason Michael's ID badge said PARENT, which if that were the case, it would definitely make this story much more complicated! That's okay, Isabella already assumes that Sarah is her second mother!
I can't open my eyes, but I still want to play with toys!
Saturday, Day 4 Post-Op:
Isaac had a really great night and had been off of the morphine since 4:30 a.m. on Friday. We felt good about the progress he'd made and were anxiously awaiting for plastics to take out the drain and remove the bandage. During rounds they said they wanted to keep the drain in another day and we were totally bummed because that meant more days in the hospital and another day of the drain hanging out. We also were excited to see the result of the surgery. Fifteen minutes later they came back in and said they decided they would take the drain out. I instantly grabbed my camera and started taking pictures as the doctor began cutting away at the bandage. Isaac did really well and was trying to grab the scissors the whole time.
Having the bandage off presented a whole mix of emotions that I really didn't expect. I was happy the bandage and the drain were removed because they were really cumbersome, but when I saw him, I didn't recognize him. Don't get me wrong, Dr. Gosain did an amazing job, it's just hard when you come in with one baby and it looks like you leave with a different one. All of Isaac's mannerisms are the same but I was admittedly down yesterday because I felt detached and like my baby was a stranger to me. I think if it hadn't been for nursing him, I would have left the room for the day because I couldn't shake the feeling that he wasn't my baby and I wanted Isaac back. Not only does his head look completely different, but he's swollen everywhere, so he literally looks like a twelve month old, not my little six month old that I came to the hospital with on Tuesday.
In addition to breastfeeding, the saving grace yesterday was that with the heavy bandage off he was able to sit up and became interested in toys. So we spent much of the day playing with him and reading stories that we checked out from the family resource room. As the day went on more and more of his personality was coming back. Once again, I cannot go out of his sight so he spent much of the day in the Beco and we were cleared to leave our room and walk around with him.
The yellow spots on his head are just bruising.
Horrible tape burn
Isabella came to visit. It was a relief to see her but she ignored me for much of the time. Which makes everything harder because now I feel detached from both of my children. I have a feeling we will spend the week reconnecting and hopefully snuggling and hanging out. Her only comments regarding Isaac were, "oh, he's so precious...he looks so silly!" I think Isaac was happy to see her and as soon as he heard her voice he stopped nursing.
Isaac barely slept all day and by 9:00 p.m. I was wondering if the Tylenol with codeine was making him fussier and sleepless. The nurse said it was possible, so we switched to regular Tylenol for his dose at midnight.
Sunday, Day 5 Post-Op:
We get to go home today! Hip hip hooray, I can't wait! Isaac shrunk a little bit more last night. As of yesterday only his right arm and right shoulder were looking normal. This morning both arms and shoulders look normal and I'm pretty sure he lost at least a pound in fluid because he feels lighter. He had the last and final does of antibiotic about an hour ago. Neuro gives the antibiotic as a precaution due to working so close to the brain and having the drain in.
Yay! We're home and Isaac is happily playing with toys! You have no idea how glad we are that this ordeal is over. Some days it felt like we would never get to this point. Until his wound heals, no hats allowed, apparently they are one of the main causes of infection at this point.
Believe it or not, there's probably a lot more I could share. What we can't believe is that as I am typing this, Isaac is babbling and playing in his exersaucer as if nothing ever happened to him. I'm still trying to get used to how Isaac looks and I know there is still a considerable amount of swelling so I'm sure once that goes down I'll feel better about how he looks. Surprisingly, the incision itself does not bother me.God answered so many prayers this week and we are so thankful to Him for being with us and Isaac.