Oh goodness, it’s been so long that I have jumped in here to finish her story. I wanted so much to write it all out. But it was so incredibly painful. I could hardly revisit some of these emotions. I had to take time away. My worry was I would forget things, but I wrote so much on Facebook that I can refer to that when things are foggy. So here I am, back again to finish her story as she concludes her first year of life. I wanted it to have a place on this blog too, so some may have been on Facebook once, but I want to transfer it all to one place.
If you missed part one and two you can find them here:
Pediatric Stroke: A NICU Story
After spending time with the kids on Saturday afternoon, we headed back to the hospital to spend the evening with Evelynn. I was more than ready to get back to my sweet girl. It was so hard balancing these two worlds. It felt as if my heart was torn into two pieces and left in different places. There was still so much unknown with Evelynn that I did not feel comfortable staying the night 40 minutes away from her. So we knew we were doing the right thing in heading back to the hospital for the night, but it didn’t make it any easier.
Sunday – Day 5
This was a HUGE day. Her EEG was finally removed and we saw her face for the first time! It was so hidden in all the bandages for days. It was so emotional being able to look at our baby girl again. Not only did they remove the EEG, but we got to hold her! It was such an exciting moment and it felt amazing having her with less wires. It would take time for us to get the results but we were praying and believing for no seizure activity. The neurologist thinks they were only post stroke and were controlled quickly with her anti-seizure meds. But this EEG will show us so we can be sure.
Monday – Day 6
This day is one I will never forget. After days of begging to hold my sweet girl, they were practically throwing her on me. She is no longer jaundice, so she doesn’t have to sit under the lamp any more, meaning I can hold her as much as I wanted to. Give me all the baby snuggles! They saw such a huge improvement from her skin to skin the day before, they wanted me holding her as much as possible. I definitely wouldn’t say no to that. We pretty much spent every moment with her in her room, holding her, and soaking her in. The only time we left would be to grab food and then come right back. We ate most of our food at the hospital cafeteria because I didn’t want to leave and waste any time with her.
They repeated an echo which showed a PERFECT heart! So they began weaning her of her nitrous oxide and heart medication. Both were going to be completely weaned by morning! The ultrasound showed no growth in the clot, which is what the doctors want. So that was all good news. Since she was showing to be way more stable, we decided it was time to transition home to be with the other kids as well.
This was an equally hard decision. I held onto the words one of the nurses and our case worker told me in the beginning…all of my kids needed me. At each point in our journey, I just had to decide where I was needed and be all there. Since we weren’t able to do much with Evelynn, we decided to split our time with mornings at home with the older kids, and afternoons and evenings with Evelynn.
Tuesday – Wednesday (Days 7 – 8)
These days pretty much played out the same. We slept at home and spent the morning with the kids. School was shut down during this time and virtual, but all the teachers knew what we were going through and we just did what we could. We spent time outside and soaking up the sunshine, loving on our big kids. Telling them stories and showing them pictures of Evelynn. I rested a lot at home and just snuggled the kids.
Then after lunch Chad’s mom would take the kids, and we would head back to the hospital. We would stay through to her 8PM cares and then head back home when she was snuggled to sleep. Every night was so hard to leave.
Thursday Day 9
Our NICU pod supervisor stopped by Thursday to tell us she couldn’t believe how far Evelynn has come in such a short amount of time. She said nurses were laughing at her as she literally freaked out when she same by that morning because she felt like she was looking at a different baby!! She said no Doctor could have predicted how far Evelynn has come and what she looks like today. Oh Jesus, you are so so so good!! Evelynn’s fiesty side was beginning to come out too. You can tell she is a little fighter!
She has been doing so well upping her feeds so she doesn’t need her IV nutrition. This meant the PICC line could come out and she would get to wear real clothes! I was a little discouraged last night as they continue to have me attempt to breastfeed. She latches, take a few swallows, and then unlatches. She still is too tired to “work for her food.” She responds the exact same way to the bottle. So I left discouraged knowing she has to hit 48 hours of feeding on her own to get that tube out and go home.
Well, this morning when I called I found out she responded the same way to her midnight feeding but all of a sudden this morning something clicked and she TOOK HER ENTIRE FEED BY BOTTLE!!! This didn’t happen any other time in the NICU, but this was still a big deal.
They were working on adjusting the blood thinning medicine Evelynn was taking to make sure it was at a therapeutic level with her clot. Every day they would do labs and see how the meds had to be adjusted. The meds needed to help her body keep blood flowing to make collateral veins around the clot.
Friday – Day 10
I remember asking on Friday if I would be allowed to breastfeed her soon and they pretty much were like, no way. She’s too weak it may be another week before you get there. I remember being so discouraged thinking this would be our life for another week, But then, I came in that next day and they were like, “So are you ready to feed her?” I was shocked and so excited! Getting her to eat was the next step to coming home!
Saturday – Day 11
This is when they finally said I could start feeding her. It was extremely discouraging at first because she seemed to have trouble latching. I could only describe it as she had a very weak latch. They said she may just be too tired or weak to still latch. I really struggled through this because I didn’t want something as simple as feeding to be what kept he
r from going home. So we made the decision at this point that it was time to switch to being at the hospital more. We tossed the idea around of me staying at the NICU, but the nurses encouraged me to go home and rest. With the monitors, lights, and the ins and outs they said it was really hard to sleep there. Resting at home was really important, and since I couldn’t drive myself still we worked it out with family to do full days at the hospital again. We knew we could be close to getting her home if we did this.
Sunday (Day 12)
We headed to the hospital bright and early. The goal was to make it before her first cares so that I could feed her once I got there. Saturday night I finally asked for a nipple shield to see if it would help Evelynn latch and it made all the difference. So that was the goal today. To get her to nurse all day and get her full volumes of feeds. They would weigh her before and after her feeds to check her volume. All day they kept saying she wasn’t eating enough, and would top her off with the feeding tube.
Again, I was so discouraged. But then after each tube feeding she would spit up tremendously so I knew something was wrong. I had a feeling that she was being over fed, but I just felt like I couldn’t speak up to the nurses. I struggled all day wondering why she was spitting up so much after her tube feedings, why she wasn’t eating enough by measurements, and what to do. In talking to some friends I found out she was actually being weighed wrong. I carefully brought it up to the nurse and she realized we had been weighing her wrong all along.
For feeding weights, you weigh with a dry diaper before feeding. Then after you feed, you weigh right away again. They were having me change her diaper again before the weight check and it was throwing off her weight. When we finally did it the correct way we showed she was eating MORE than the goal volume! This was a huge moment for me as a mom. I learned so much in advocating for her.
Monday – Day 13
Doctors will repeat scans and labs, the results from these will be a huge determiner for if and when she can go home this week. We are believing for a miracle and that these scans and labs all come back where they need to be.
Then they will look at her feeds and determine if she can go home like that. The rules here are very tricky and very hard. They care a lot about measurements and data, so this is where it’s very hard to advocate. We truly have no concern in her feeding right now and she does really well when I’m there.
Tuesday – Day 14
The labs we really needed yesterday were pushed back to today due to the special vile they use for the tests being out of stock. The delivery was delayed and since it is a time test it has to be given four hours after her blood thinners. So they drew at 9am. She also will be getting one last echo before leaving. They are rushing through all her last checks and tests with the chance she could be going home the next day! The results for her tests are below:
Heart: Her heart looks great today! Super healthy! Doing everything it should be. There is still an elevated blood level of Troponin T which is supposed to signal a weak heart muscle, but the echo doesn’t show that at all. So he said it’s very puzzling to him. But he’s not worried about it because the heart looks great. They will watch her blood pressure for a few months because of the clot and it could cause her heart to overwork. So lI’ll go back in 2-3 weeks for a blood pressure check. And then after that determine how often I need to go back as we work through the clot.
Blood Clot Test: All labs are great! The blood thinner is in the therapeutic range so we are good with that medicine dosage and that’s what she will go home on. The clot is still there, maybe only slightly smaller. So this will take time. She will have weekly blood draws, most likely with a home nurse that comes to do it to make sure we are still in the right medication levels for the thinners.
Neurology: We will follow up with him in two months. She goes home on anti seizure meds to protect her brain from after effects from the stroke; basically seizures. Gives it time to heal.
Wednesday – Day 15
We got to the hospital that morning to find out that Evelynn had lost 2oz overnight. To the NICU this was a big deal and they were ready to keep her there longer. I was heartbroken. They were able to convince the day supervisor to see how she did throughout the day and make a decision in the evening. Evelynn responded so well to breastfeeding, but she wasn’t taking to the bottle. Since she was going to be strictly breastfed, I wasn’t worried at all.
The NICU supervisor checked in with our pediatrician for advice. I will forever be grateful for her as she was the one who urged her to send us home. She promised to keep up with us with weight checks, but said she knew us so well, and as a fourth time mom she would be better at home. She even thought she would gain better at home with mom and baby relaxed, which is exactly how I felt!
Her Life. His Story.
Leave a Reply