Adventures with Ellie: Well, hello again Dayton Children's...

Friday night Brandon and I had our first night out without the kiddos. My mom came to our house and watched all three of them for us so we could go to our friends’ wedding. Date night – woot, woot! With the boys, I think we’d left them with my mom when they were 2 or 3 weeks old. Ellie is twice that age (6 weeks), but I felt like we could leave and knew she was in great hands! On the way to the wedding, our cardiologist, Dr. Luby, called my cell to check in on Ellie. Have I mentioned that she’s called us every day this past week? I don’t know if I should feel special or be a little more concerned than I am right now. Ha! Either way, I feel great knowing that we have a great cardiologist. She told me that if anything changes in Ellie’s behavior or feeding patterns, that I needed to give her a call.

Ellie did great for Grandma and was a happy little snuggle bug when we got home around 11pm. At 3am, however, she started to fuss. By fuss, I mean cry and scream and flail her limbs. She sounded like she was in pain and was not consolable at all. She’d sleep for no more than 10 minutes at a time. I took her temperature, and it was normal. I knew Dr. Luby was on call through the weekend, so at 8am Saturday morning, I called Children’s to have her paged. She called me back right away and I told her about Ellie’s crying fit that had now lasted 5 hours. She told me to take her to Children’s ER because that was entirely too much for Ellie to handle. I started getting ready to go, but then walked out to the living room and saw that Brandon had finally gotten Ellie to sleep. He said, “can we give it an hour and see how she does, first?”. Absolutely!

Daddy got our bug to sleep after a major fit through the night.

I really didn’t want to bring her in and expose her to sick kids if I didn’t have to. Ellie was peaceful and slept most of the day on Saturday. Dr. Luby called us late in the morning to check in. She said, “I called the ER to see how she was and they said she wasn’t there”. I explained that she had been sleeping and that we were going to try keeping her out of that waiting room if at all possible. Dr. Luby was alright with that. Saturday was glorious! She slept like an angel all day and we had a great family day. We went out to lunch together and picked up some snacks and movies for a family night in. Brandon fell asleep on the couch after I’d taken Ellie to our room with me. Somewhere between then and 2am, the boys got out of bed and found their way to Daddy. All three Ward boys were sleeping in a pile on the couch when I went out to warm up a bottle for the 12:00am feeding.

During the feeding, Ellie woke up and was upset again. I tried everything I could think of to get her to calm down and sleep. Nothing worked. Part of me was afraid that she might have colic (we’d just talked with friends about their battle with colic in their little one). That was NOT something that I thought I could handle. I would get Ellie calmed down here and there, but again, it never lasted more than 10 or 15 minutes. She was drenched with sweat and panting for air. When she’s upset, her stomach is tight and it’s almost impossible to get the milk through her NG tube. I was at a complete loss and at 4am, sat in bed sobbing into my hands because I was spent and had no idea how to help this little peanut. I knew that something was hurting her, but I had no idea how to make it better. I know all parents can relate to this feeling at one point or another. After throwing my own little fit, I pulled myself together and decided to listen to what the cardiologist had told us to do the day before. I started packing up a diaper bag, got dressed & brushed my teeth, pulled the boys’ seats out of my van, and headed down to the ER at Dayton Children’s. Thankfully, the waiting room was empty at 5am. There was one family in front of me checking in, then it was my turn. When the receptionist asked me what was going on, I broke down. Like a chump, I know. I said, “I’m so sorry… I don’t know why I’m emotional… but I haven’t slept”. Those poor ladies… I’m sure they’ve seen this plenty of times, but they really only got Ellie’s name and birth date before they brought us into a room in the ER. By then, I was able to tell them what had been going on and that the cardiologist told us to come in. They took Ellie’s vitals and found that she had a fever of 102.4. Eeeek! I’d checked her temp under her arm on Friday night and it wasn’t elevated. Now I felt really bad for waiting.

For those of you who’ve had a little one w/ a fever, you probably know that a fever over 100.4 in a baby Ellie’s age is considered an “emergency” by the pediatricians. 102.4 was concerning for them… and when babies are under 2 months old, the standard battery of tests for a high fever include: a straight catheter to test urine, a blood draw, suctioning of the sinuses to collect mucus, and a spinal tap. UGH! The room was buzzing for the first hour or so while they collected all of these right away. Ellie was still upset, but I was happy that the testing didn’t make her any more upset than she already was. They also put her on monitors and checked her pulse ox. I let them know that her baseline was in the low 90s. She was in the low to mid 80s, though, so they started her on a little oxygen and also took a chest x-ray to check for pneumonia. Once they had what they needed, I sat in her bed and cuddled her, waiting to find out what the next step would be. They called Dr. Luby to let her know that we were in the ER and Dr. Luby confirmed what Ellie’s baseline was for heart rate, retracting and oxygen saturation. She also told them that she did NOT want Ellie on oxygen for any longer than what was absolutely necessary.

Teamwork! Ellie's getting her IV put in.

She finally slept... for a little while at least. Not digging the peach gown,

but hey, what are you gonna do?

Giving us her ornery face and flailing around the purple monstrosity that is her IV.

We were admitted and Ellie was taken off oxygen by the respiratory therapist. She kept her oxygen saturation up around her baseline just breathing on her own. This was great. Dr. Luby explained that administering oxygen dilates the blood vessels in the lungs… not a terrible thing for most people, but dangerous for Ellie who already has so much stress on the blood vessels in her lungs. Too much oxygen could cause permanent damage… and we weren't sure what “too much” oxygen was, so it was best to avoid it if possible. Sounded good to me!

Through the day on Sunday, the nurses would update me on how Ellie’s test results looked. Her bloodwork showed high levels of potassium – so Dr. Luby suggested that we do not give her Aldactone (which helps her body hold on to potassium while on her diuretic). The nurses told me that her mucus sample was clean and that all of her fluids tested negative for viruses (they test for 5 different viruses). We’d have to hang out for about 48 hours until they were able to see if any of her samples grew bacterial cultures. Her chest x-ray was also clear, so no pneumonia. Sunday just felt like a million things were happening and I was terribly sleep deprived, so I wasn't 100% in tune to what was going on.

Back in the cage. This time... maybe she's a cage fighter... she's tough like that.

Sunday night, around 3am, Ellie started having another fit. I let her nurse know that she was upset and told her that this was what had happened the past 2 nights. They gave her a dose of Tylenol. I tried to soothe her through her feeding, but nothing was really working. After 45 minutes (now into the fit for about an hour and a half), I called the nurse again and told her that she was still miserable and asked if there was anything else we could do. The nurse came in with a bouncy seat for Ellie, but when she saw how distressed she was during her fit, hooked her back up to the monitors. Ellie’s heart rate was high (really high)… floating between 190 and 210 beats per minute (her baseline is high at about 160 bpm). Her respiratory rate was also high (70+ breaths per minute when her baseline is around 40). Ellie’s oxygen saturation was dipping down into the mid 70’s at times. Respiratory came in right away and put Ellie back on oxygen. They suctioned out her nose and dropped in some “Little Noses”. This was the first time that she’s gone on monitors in the midst of a fit. When we came into the ER, she’d already been through the roughest part of her fit. This was eye-opening to me because now I could see how much she was struggling. I felt awful – but I was relieved that we were in a place where she could get help. Within 15 minutes of getting suctioned, oxygen and nose drops, Ellie was calm. Holy cow – what a difference from the 2 nights before! This fit lasted just over 2 hours altogether. Once she was calm, they took her off of oxygen and switched her tube over to just air… still flowing into her nostrils, but this air was no different than the air in the room. Ellie responded fine to that and maintained her baseline on regular air (thank goodness because we knew we didn’t want her on oxygen any longer than she needed to be).

She's Leonardo... obviously! Her brothers helped pick out this outfit.

Her eyes look wonky, but only because she was falling asleep.

On Monday, Dr. Luby came in to check on us. As she walked into the room and started talking, Ellie smiled at her. Intentionally! This was Ellie’s first real smile. Dr. Luby said, “Yeah, she’s smiling at me because she knows she’s in trouble and she’s trying to flirt her way out of it”. Ha! Kinda sounds like our kid. Dr. Luby said that Ellie looked great and that she was certain that Ellie had a virus. I asked why the labs came back negative, then and she said that they only test for 5 different viruses (and listed them for me)… she said there are thousands of viruses and everything that Ellie had been doing over the past week made perfect sense. On Wednesday when I’d talked to Dr. Luby, I told her that Ellie had diarrhea (and we adjusted her meds a bit). Friday and Saturday nights were the nights where she was inconsolably cranky. Sunday morning she had a fever and had been congested all weekend. This all pointed to a viral infection. Dr. Luby also said that the person who did the spinal tap did an amazing job and didn’t get any red blood cells in the sample at all. So from the spinal fluid, Dr. Luby could see that the monocytes (a type of white blood cells) were out of their normal range… also consistent with a viral infection. Ahhh – finally we had an answer to what was up with our sweet girl. Ellie was really alert as we talked and she just stared with bright eyes up at Dr. Luby (which was adorable).

Bright eyes after we took the air off of her (Tuesday 10/21)

Dr. Luby asked what questions I had for her. I asked about using forced air at home. Dr. Luby said it might be a possibility, but she was convinced that the change in Ellie’s fit had been a result of getting her nose suctioned and adding nasal drops. I asked about a timeline for surgery and she said we’re still on par for 4-6 months of age. She said, “honestly, after talking with you last week, I was afraid that I’d come in and Ellie’s symptoms would be heart-related. If that would have been the case, we’d be prepping for surgery soon. Because her symptoms are due to a virus and because she’s gaining weight beautifully and maintaining her baseline, we are safe to hold off yet.” Ahhh – that’s good news! She also explained that Ellie gaining weight has a two-fold bonus for surgery. She said that not only is a bigger baby anatomically better for the surgeons (operating on a little bit bigger heart), but a baby with extra weight will have higher levels of nitrogen in her system… which allows her to handle surgery and recover better… it also helps her scar heal quickly because the body has excess protein to use to build tissue. Hmmm… didn’t know that. Ellie weighed 8 pounds, 1.6 ounces this morning (Wednesday, 10/22) and is 7 weeks old today. She's almost up to the birth weight of her brothers. She had another fit last night (from 2-4am). I'd finally gotten her to sleep and was looking forward to sleeping for about 45 minutes before logging on for work, but the phlebotomist was in to draw blood at 4:30am - no such luck on the sleepy time. Speaking of sleep, though...the “parent beds” in the 3 West wing of the hospital are not as nice as the beds over in 3 East… just sayin’. Looking forward to going home sometime this afternoon. Because she's now had 5 straight nights of lengthy fits at night and at roughly the same time, they'll use this (along w/ the pattern of how she does at home) to determine if this is something colic-related or not. Here's hoping that the answer is a big fat NO and that suction and saline drops in her nose clear her up so that she can adequately oxygenate herself and calm down.

My next update WILL be from home (hoping that the confidence in that statement ensures its truth). We have Trunk or Treat & a Halloween party this weekend. Last night I worked on Halloween costumes from the hospital room… not ideal! And for those of you who don’t know… Halloween is a big deal to me and I LOVE making costumes for the kiddos. Don’t judge me this year, okay?? I may or may not have just started on them last night. Oy! I don’t think they’ll even be in the running for best costumes in the short history of costumes on our kiddos. But maybe a quick recap of how cute they were the last 2 years will make me feel a little better about them being pretty sub-par this year.

2012: Bikers!