Bailey’s Surgery

The morning of surgery, she couldn’t nurse past 3:30 am. So she fell asleep at 12:00am that night and I wanted to wake her at 3 to eat but slept through the alarm! So I woke up right at 3:30 am and totally wished I could feed her, but couldn’t, so I layed in bed awake feeling guilty and therefore only got 2 1/2 hours of sleep. Bummer. So needless to say, she was starving when we had to wake her up at 5:15 am to go. I was so glad though, because this girl is NOT a pacifier baby at all, and she sucked on one nearly the whole morning so she did sleep most of the time in short spurts between crying for food. We didn’t hand her off to the anesthesiologist until 8:06 a.m. Our doctor was late, so all the other people waiting for their kids’ surgeries were long gone at 7:30 a.m. , so that was a bit frustrating. I was fighting back tears all morning, unsuccessfully at times. I just couldn’t bear the thought of what was about to happen to her! Finally, the surgeon got there and we walked back to the operating area. The anesthesiologist told us to give her kisses, I handed him to her, he said, “One more kiss from mom.” then left with her with the final words, “We’ll take good care of her.” I guess they put on a gas mask first, and he said it was flavored pineapple, so the last thing they do is stick out their tongue to taste it, then they are out and they start poking them with needles and all that good stuff for IV’s and such. I was prepared to bawl my eyes out after handing her to him, but I think seeing another mom do that kind of made us tougher. Actually, I know the real reason is the many prayers and fasts done in ours and Bailey’s behalf. We were walking down the hall, and I mentioned to Dillon that I felt really peaceful, and he said he felt the same.

We were told that the surgery would take 1 1/2 hours to 2 hours the morning we got there. We had been told 2 hours previously by the surgeon, but that morning he said to not be alarmed if it takes 3 hours, that it didn’t mean anything was going wrong. So we headed to the last waiting room and first grabbed a little breakfast as fast as we could in the cafeteria and then read gossip magazines for the first while to take our mind off of everything. After a while though, I really just wanted to pray for Bailey and think about her–not that I wasn’t the whole time anyways, but I was done distracting myself. So after 1 1/2 hours of being in surgery, the nurse called to update us saying her vitals looked good and the surgeon was still working on removing the bone from her skull. At 11:26 am, the surgeon had just finished talking with us for a couple minutes. It seemed like a really long last hour, that’s for sure. He said everything went really well, she woke up fine from the anesthesia, and was being moved to the PICU (pediatric intensive care unit). He had wanted to do more work on the back, but he said, “It was becoming too much of a surgery for her.” He thought he might want to do a blood transfusion, but the anesthesiologist didn’t, so they would wait and see what the PICU said. It’s funny, because he didn’t think she needed to go to the PICU, but the anesthesiologist did. I’m SO glad she ended up there. They wanted to keep her overnight! The main reasons they wanted to have her there was to control the swelling with the drain in her head so that so much pressure didn’t build up and cause brain damage, and also because she was so little, that they needed to really monitor her pain meds so she didn’t stop breathing. So, at 12:00 pm, we got to go to the PICU and see Bailey for the first time after the surgery.

These pictures, especially this next one, just break my heart. Not that she looks so bad in them, but because of the memories that come back when looking at them. I think that we had prepared so much for the actual operation that I didn’t prepare myself for her being in pain. I just kind of thought, “What a relief it will be when they come get us after the surgery. She’ll be on pain medicine and sleeping, and we’ll just be on the uphill from there!” Boy, was I wrong. The first day was so so hard. Poor Bailey. She was in so much pain. This next picture just reminds me of looking at her like this, unable to open her eyes because she’s so drugged, yet she kept crying out a cry that I have never heard before. It was so sad, and so painful. Their job in the PICU was to make them as comfortable as they could, but to not give too much morphine or there was a risk of their breathing to stop. The morphine was just not cutting it for her! It was really really sad. I think the nurse (Jill) and the nurse practitioners were a lot more worried about her than they let on. Later we found out that their heart rate is a good indicator of the pain they are in. Normal for her is closer to 120. Her heart rate was over 200 sometimes. Even when she wasn’t crying and getting worked up. Poor Bailey. The nurse looked very concerned all day, and kept calling the doctors to discuss what else they could give her. I remember once the nurse practitioner over the unit walked by and mouthed through the glass door, “Better?” and the nurse shook her head no, with a sad look on her face. Another time someone called her and said something that I didn’t hear specifically, but I think it was about her vitals on the computer, like her heart rate or something like that, they said something about sky-rocketing, and the nurse said, “Um, mom’s here.” They ended up giving her some other drug that was also an amnesiac, so it would make her forget the last little while so they could get on top of her pain. I tried to comfort her by talking to her and patting her, but a lot of times it made her cry harder. We couldn’t hold her that whole day and night. It was probably one of the hardest things I’ve ever had to go through. I wished so badly to be able to trade her places.

Thankfully, her super soft blanket from my friend Jill, and her pacifier helped her a little bit.

She drank some pedialyte finally at about 6:00 pm. They were worried because she didn’t pee forever, then finally did at 4:00 pm (with her catheter in).

After she ate at 6 though, she wouldn’t eat anything else. They kick you out from 7-8 while they change shifts, because there is a lot of talking about patients and everything that I suppose they don’t want you to hear. Dillon had left about 6:45 pm to go meet my mom and Karl at an Instacare because Devon had a fever of 103.8 and a sore throat. So he had strep and Karl took him home while my mom came to see Bailey. They got there just at 8, as I was also coming back to be with Bailey at that time. That hour goes slow when you are worried about your baby! I got to talk to family and friends though, so that helped. We got back to see Bailey crying, naked, while they were trying to calm her, change her, clean the mess from the drain leaking everywhere on her, wrap her, give her morphine, and stick the drain back in because she had pulled almost all the way out of her head. OUCH! She was really sad. I think the saddest thing about her cry that day is that she couldn’t open her eyes hardly, and her mouth barely opened as well…it was just this moaning cry, high pitched at times, and just was really like the only thing she could do was get a noise out. It didn’t sound like her at all. There were all the main doctors and some other nurses in there at the time, so probably 6-7 people in there looking at her and trying to figure out what would help her pain. The newer nurse, Crystal, told us they had upped her morphine to the maximum amount they could give her, or else she might stop breathing, and that it seemed to do nothing for her. I felt so helpless. I couldn’t hold her, comfort her with patting or anything. It was horrible. She finally settled down though. I went to pump and when I came back, they had told my mom and Dillon that she needed a blood transfusion. That was going to help her a lot though, she was really weak and pale. I mentioned what an awful day Bailey had had to the new nurse on the shift, and she said, “Oh yes. She’s had a REALLY hard day.”

My mom and Dillon left–Dillon went home to sleep at about 11:00ish, and I wanted to stay with her until 11:30 as long as everything was going well. They had some craziness with trying to draw blood from her “art line” is what they called it (artillery line), and it wasn’t drawing because some weird white glob was coming through the tube and blocking it. They thought that was really strange and tried again, only to have the same thing happen. So they had to call the nurse practitioner, who ordered 6 different tests to see if it was this or that, and everything came back normal. They thought maybe it could have been a weird reaction to the blood transfusion. They did have to call the IV team down to draw blood since her art line wasn’t working. They turned out all the lights and had this cool light to see her veins and stuff. They had to poke her twice though, which hurt her of course. I didn’t feel like leaving her until she was snuggled up and sleeping again. So after all that was said and done, it was 1:00 am. I took these couple pictures, and went to sleep in the room we luckily were able to get in the hospital in the PICU waiting room. The nurse, Jill, was very pleased we got it.

The next morning, I got up at 6:30 am and went to see her, then they again made me leave from 7-8. We got back to a new nurse (Heidi maybe?) and yea! I guess she slept for 6 hours that night! So great! And then we got to hold our Bailey!!! The nurse had just started to feed her and said I could if I wanted to. It was so so great to finally hold her again! She was doing so well, she got the transfer to go to the Infant Care Unit at 9:00 am, and by 9:30 am, we were on our way.

Our nurse in the Infant Care Unit, Mario, was great–he’d only been an RN for 2 months, but you could not tell. We started out sharing a room with a little 3 month old and her parents. She was having a hard time gaining weight, so they were feeding her like crazy and weighing her. The parents took off at about 11 am, and didn’t come back until the baby was discharged at 6 pm! So sad, the baby really wanted her mommy and daddy, so Mario ended up holding her and rocking her a lot. But it was fine, Dillon and I were there to care for Bailey anyways. I think the couple was just really young and the guy made it clear he did NOT want to be there! But they were nice–I was just glad we didn’t have to listen to his swearing the whole day!

Friday was so much better than Thursday! She just slept and slept. It was wonderful. Dillon brought blankets back and I went out to the van and slept for 1 1/2 hours, which felt great.

It was seriously the biggest relief and blessing to have her not be in so much pain. It did wonders for our emotional state! She definitely preferred to sleep on her right side, maybe because the drain was on the left side and probably hurt her. So, she swelled up on the one side. The top didn’t swell quite as much as we’d thought–he did more of the work in the back, so that’s where most of the swelling occurred.

Friday night, Bailey was a little confused I think as to her days and nights! She was up the WHOLE night! But she wasn’t sad for the most part, she just was awake! I slept about 2 hours that night. I finally asked the nurse, Joseph, if he would take her for a little bit because I was afraid I was going to drop her if I fell asleep. I seriously thought I’d fall asleep standing up!

The neurosurgeon came in Saturday morning and looked at her. He said he couldn’t think of a reason to keep her, and that we could go home that day. If we felt more comfortable staying overnight, we could. We debated, and originally I thought I would have wanted to stay longer, but they kept coming in and waking her up to check her vitals and all that good stuff, and wasn’t getting much sleep. So I figured she’d be happier going home so that’s what we decided!

It’s been truly amazing how fast she has improved! I am amazed at how quickly she has returned to smiling and even laughing occasionally. It was about 3:30 pm on Saturday when we got home. She slept and slept and woke up happy–okay, well I take that back, she ate and then was happy. Every time she wakes up she is pretty sad. I think it probably just hurts her when she wakes up. That night she slept for 9 HOURS!!! Wow, huh!
That 9 hours was apparently all spent on her left side again, so she got a little swollen in that eye once more.


She was so cute when she first saw the boys on Sunday morning. She couldn’t stop grinning at them.
Today, it’s been a bit harder on her. She was on morphine for Thursday and part of Friday, then Friday and Saturday she was on Lortab, and Sunday morning, then we were to transition to Motrin, and now to Tylenol. I don’t think the Tylenol is enough for her today. She just can’t sleep and is crying a lot more, so I just gave her a dose of Motrin so hopefully that will help. Devon looks like he has pink eye, and I think Carson now has strep. Hopefully Bailey can stay healthy through them being sick! They said the biggest risk now is infection of the incicsion, so hopefully we’ll keep that from happening.

Primary Children’s really is as great as you hear. The nurses and doctors are so wonderful and just really help you to trust them. I am so thankful to live so close to a great hospital, and grateful that so many great people have chosen that career path to be there. We were impressed with them all.