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Monday, June 17, 2019

Elaina's Bilibaby Story

Our Elaina's first month of life was a little out of the ordinary. I'm sharing her story, as a peek into her little life, and just because I wanted to record it. I am no medical professional and my vocabulary and understanding is probably grossly oversimplified. 


During our discharge from the hospital with Elaina, our nurse threw in "oh yes, and you need to take her to a lab tomorrow and get her blood drawn to test her bilirubin level." Whoa, back up! What's bilirubin? Is she ok? She told us Elaina was slightly jaundice, and she should be fine. Bilirubin, the chemical that causes jaundice should go down. She was just higher than they like to see. 

We went home and took her to the lab the next day, thinking, and hoping it was just a precaution. We got a call that night that the Bilirubin level increased, so she needed to be checked the next day again. That call was Friday night. We were a little discouraged, but we were told to just feed her as much as possible because bilirubin leaves the body through urine. Also, put her near a window often because sunlight can help break the chemical down. Jaundice is very common, it often is gone in a few days! By Saturday morning, I couldn't get Elaina to wake up for a feeding. Bilirubin makes babies lethargic. I was hoping she'd wake up at the hospital lab and catch on to eating. Since newborns sleep so often, it was hard to know when it becomes too much.

Even with the poke of getting her blood drawn, nope, still sleeping. I mean she let out scream, but that was about it. We took her to the pediatrician's office, and got the result from the blood test and the bilirubin level had gone up considerably. The doctor told us she needed phototherapy. So, bilirubin is not always harmful. There is a certain amount our bodies can handle no problem. The issue is if the level gets too high, it can cause neurological damage. Since Elaina's level was increasing, and she was too sleepy to eat, we needed to break the chemical down. Phototherapy is a light that helps break down bilirubin. At home, its kind of like a little blanket that glows against the baby's skin. The doctor called into a medical supply company with a perscription for a phototherapy light. It was supposed to delivered to our house. 

By 3 pm, the light hadn't showed up. I called the supply company, and they hadn't even started processing the perscription! Long story short, the company was not going to get it to us until late that night, and my 3 day old baby hadn't had a feeding in 14 hours. We did eventually get her to eat almost an ounce of formula, but it wasn't enough. The higher her bilirubin level got, the more lethargic she was, but not eating or peeing was increasing the level, etc. You get the point, vicious cycle. She was getting into the danger zone. By 5 pm our pediatrician told us to go to the children's hospital. 

We grabbed Joslynne, a couple of essentials, and left. And by essentials, I mean, Joslynne's paci. Not any real necessities like say food, clothes, deodorant. Oh, and did I bring my pain reliever or stool softener since I was 3 days postpartum? No, no I didn't. That would have been too smart. :) We didn't know if it was just going to be an ER visit or if we'd be admitted. 

The Hospital

As soon as we arrived, our nurse tested Elaina's level again and it had sky rocketed again. I hated hearing that number. Especially since I had the number in my head that could cause brain damage in newborns.  I was relieved to be there since she could get an IV to keep her hydrated and get her wetting diapers quickly. We could also use a much more aggressive phototherapy light than we would at home. At the hospital, she was pretty much in a baby tanning bed, with light under her and shining on her. 

I could only hold Elaina for 30 minutes every several hours, so trying to get her awake to breastfeed wasn't the priority initially. Just getting something in her was. So, we had to feed her a bottle. The hospital staff was amazing and did want to help me breastfeed once the bilirubin went down enough to wake her up. 

So, I pumped like crazy! I was pumping 6 ounces everytime, so supply was no problem! We were at the hospital all night, and by morning she was awake. :) We would check her level again after 12 hours, and we were praying it went down. It did slightly.  Praise the Lord, it didn't go up anymore. 

All of Sunday was spent trying to feed Elaina, then getting her under the light as much as possible. She wouldn't breastfeed. Even though she was alert again, she had no interest. I tried each time I got to hold her, and hoped she would catch on. My focus was definitely getting her to a point where we could go home. I thought everything could go back to normal when I could hold her more. 

The hospital was awesome, and had lots of toys for Joslynne. She was going crazy though. Poor girl was already so confused on why Wes and I had been gone all week, now we couldn't go home. We don't live close to the hospital. We had siblings who were amazing to come take her out for a while. I also ran over to their house to shower, because pumping, no sleep, and postpardom hot flashes do not amount to a good thing. :P Also, food, we finally ate food. 

On Sunday night, the blood test didn't show encouraging numbers. Her level went up again. At this point, the doctor wanted to give her a coombs test. Sometimes jaundice could be caused by incompatible blood between mama and baby. I know there are much more severe issues to go through, but at this point, we were so exhausted and discouraged. I wanted to know if this was an indication of a bigger problem. Why wouldn't it just go down? It was hard to get any answers yet. 

On Monday morning, the bilirubin level decreased again. And the Coombs test was negative!  Maybe we were making progress! I met with 2 lactation consultants that day, and they both told me the problem just seemed to be Elaina's motivation. She just didn't want to suck. She showed that she could for a few seconds, then gave up and just cuddled with me. I just kept telling myself it will be better at home. 

The level, are you tired of hearing about levels? I know, me too. The bilirubin went WAY down by Monday night! Enough for us to go home! The doctor told us we needed to check her again in 2 days to make sure it keeps decreasing. I asked what happens if the bilirubin goes back up, and he said "oh that like never happens, well it shouldn't." We were so happy to go home! 

Not Again! 

Wednesday was Joslynne's birthday. Okay, routine blood test before celebrating. No big deal, we'll just swing by the lab. We got the test done and they would call us back in an hour. We went into Salt Lake to do something fun with Jos. Then I got a call. Bilirubin went back up, she needs more phototherapy. :( What happened to, "it never goes back up!" So, we got Josy some ice cream, and told her we could celebrate together at home. She's 2, so she didn't mind. ;) Thankfully, we were able to get them home phototheratpy light this time. 

Doing phototherapy at home meant we could still hold Elaina. She just had to be a little naked baby all day with the glowing pad against her skin. :) I continued to try to breastfeed. However, I would normally try for as long as possible and resist offering her a bottle. If she's hungry enough, she'll eat right? But, since eating more equals peeing this dumb chemical out, we had to focus on getting the food in her. So, she just got more and more attached to the bottle by the hour. 

The home phototherapy went on for 2 weeks. I was so worried that her liver wasn't just kicking in to break down the bilirubin on its own. Why wasn't it just going away?? Many people who heard Elaina was jaundice just said, "oh, no big deal, just put her in front of a window!" They were just trying to help, I know. ;) I wish that was our situation. But, this was a little different because even with the light, that stinkin level was not decreasing. Oh, and yes,  our little glow worm was also by a window for light all day as well. :)

Elaina was so sweet and happy. We were loving getting to know her during her first we weeks. But, I was frustrated, worried, and just wanted to stop getting my baby poked for a blood test everyday. She was champ, by the way! I wanted to put clothes on her, take a walk with her, and focus on breastfeeding. The pediatrician wanted to keep trying the light for another week before looking into any kind of testing for issues with her liver etc. 

When Elaina was 3 weeks old, we had a birthday family party for Joslynne. We got a call during the party that her level went down enough to stop using the light! Then, we would see if it would stay down without phototherapy and test in few days! We were so relieved. And, a few days later, she was still fine! We were DONE with jaundice! 


Ok, now breastfeeding. I started to try for longer each feeding, and not so readily give her a bottle. I also went a little longer between feedings so Elaina might be hungry enough to just go for it! This kid was the laziest eater. Even with the bottle, she would barely suck. A bottle took her an hour to drink!  I should add that we checked her ability to suck, swallow, even her heart rate to make sure she had the energy to eat. It came down to Elaina just wanting to chill and let the milk flow into her mouth.  Haha! Everytime I tried to breastfeed, even though she was hungry, she would just scream and flail her little head and arms around. It would just escalate until I fed her a bottle. Yes, I know, I gave in, and she was learning she would eventually get what she wanted. But, at some point the kid has to eat, and she wouldn't give up the tantrum. Well, she eventually would, but not to eat. She would just cry herself to sleep in my arms. 

I tried breastfeeding first, fed her a bottle, then pumped for 2 months. The most I ever got her to breastfeed was 5 minutes. Finally, we gave up trying and I just pumped. My supply dried up by the time Elaina was 4 months old. I kind of felt like a failure. I kept thinking maybe I should have tried a little longer. Breastmilk is so good for babies, isn't that what she needed? Many people, including doctors, assured me that nipple confusion will totally fix itself over time. But the most encouraging thing anyone told me was, "its ok if it doesn't."  We did everything we could for our baby. We also gave breastfeeding a shot, but listened to what our family needed when it was time to give up, get us all some rest, and give both of our girls the best love and attention we could.  I pumped until I didn't have anymore milk. In the end, Elaina is healthy and fed. Being a good mom isn't doing things the same way other moms do. It's not listening to every single piece of advice that comes our way. It's not doing things just how we did with our other children. It's not even being the most natural, most modern, or most savvy mama around. Being a good mom is doing what we know our child needs at that moment. 

I look back now, and this was just a small part of her life. And she's perfect. During the unknowns, it seemed like an eternity. I feel like this is really nothing compared to many families go through. But, this is part of Elaina's story and we are so thankful for her health. We learned a lot about being a family of 4, trusting God's plan for our children, and not taking health for granted. We are beyond thankful for the sweet blessing Elaina is and couldn't imagine our lives without her!

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