Wednesday, June 21, 2017

Part 3 of Leliana's NICU Stay

This is the last part of Leliana's NICU stay. When I stopped at part 2, which you can read here, it was the last day of May and at that point we only had 2 days left in the NICU, or so we hoped. I will continue to break it down in days (counting how long she was in the NICU) like I have been in parts 1 and 2. We will pick up on day 12. Spoiler alert for those that have been reading my documenting of what we went through, there are only 5 day left to write about because on day 17, Leliana came home.

Day 12
Rob and I did what became our normal routine of going to see Leliana in the mornnig, then lunch, then walking around a store or two, dinner, and then seeing Leliana in the evening. While we were at dinner, we got a call from the children's hospital that Leliana was moved from where she was in the NICU to a what they considered a step down unit. She had been moved from the actual Norton Children's Hospital to the the regular Norton Hospital, but still in the NICU and still part of the children's hospital. Also on this day she had her 90 minute car seat test. They have to do this test so they know she will be okay breathing in her car seat. She passed the test. The only thing left to do was to be told we would be going home on day 13. As long as she did not have any issues on this night, we would go home, according to the doctor. Of course after seeing Leliana in the evening, I packed up our stuff in preparation of going home the next day.
Day 12 pictures. She loved and still loves sleeping on my chest.
Day 13
When we got to the hospital on this morning, June 2, 2017, we were told Leliana was not going home like we thought. We waited until we heard more from the doctor which wasn't until 1 p.m. that afternoon. In the meantime, we ate lunch and the BellaBaby picture lady came and did Leliana's hospital pictures. You can view her hospital pictures here (click on the word here, the pictures are cute). At 1 p.m. we heard from the doctor via telephone and Leliana's heart rate dropped early that morning. The doctor said she required stimulation to come out of it. Therefore she needed to be watched for 3-5 more days. He said if after 3 days there are no issues, they may send her home then, but we were unsure of that. At that point, we needed to plan for the full 5 days. Rob was going to go home on this day because his mom needed help with our boys. She couldn't do another 5 days alone. However, after reaching out to our friends, they stepped up to help so my Rob's mom could get a little bit of a break. Our friends really are awesome. I've written about them before. We have such a great group of friends. Rob was able to stay with me. However, this meant he still couldn't work so we were slowly running out of funds. After more reaching out, many of my Facebook friends from mommy groups and other walks of life gave money to us so we could still have funds to eat and travel. I realized how blessed I am by amazing friends near and far. That evening we had dinner with my grandparents again and then went back to see Leliana. Afterwards, we went back to the Ronald McDonald House to get some rest after what was another stressful day.
We got one hospital picture printed.
Day 14
This day was June 3, 2017. I would have been 38 weeks pregnant had Leliana not been born early. As rough as the past 2 weeks had been, we were so thankful for our baby girl. She was already a fighter. I could not believe Leliana was two weeks old on this day. I was hoping we would be home that day. My new hope became that we would be home by the next weekend and her 3 week birthday. She had 4 big brothers who were bursting at the seams to meet her and hold her. On this day, Rob took the day to rest so I spent the day going to and from the hospital on my own. Rob needed the rest.
Picture from day 14.
Day 15
As you can see, the updates were getting shorter and shorter. In this second period of 3-5 days of being observed, she was doing even better. Leliana had two small episode on day 14, but we were there when they happened and she brought herself out of them. They were documenting those, but they aren't setting her back as far as how much longer she would be here. They wanted her to bring herself out of them so she could go home. She had one over night of day 14, but she was eating so the doctor thought it was reflux. He talked to his attending, but did say tentatively home on day 16. So we took the rest of June 4, 2017 to rest, especially me because I started feeling sore again. Rob was a great husband and made sure I rested. After resting, we did more laundry at my grandparent's house. Afterwards, we had dinner and then went to see Leliana. Like I said, we built a routine while we were in Louisville with her. After seeing Leliana, we went back to the Ronald McDonald House to sleep in hopes day 16 was the day she would get out.
Wearing a hair bow on a Sunday!


Day 16
We talked to the doctor on this morning, June 5. Leliana would be going home on day 17!! As long as she didn't have any serious apnea episodes on day 16 or day 17, we would be good to go home on day 17. The doctor said she went to Louisville and Norton Children's Hospital because of the episodes. Yes, she had some small ones/one moment where heart rate dropped. The small episodes are normal for newborns, is what the doctor said. Most newborns have small episodes, not everyone knows it because they aren't hooked up to machines. What Leliana was doing at that point is normal and there was no reason to keep her there longer than necessary. We did talk about a monitor. The one they'd send us home with would be bulky. The doctor also said they ring a lot when they shouldn't and they try to reserve the machines for babies who have lung issues (didn't apply to us) and need oxygen machines as well (again didn't apply to us). However, the doctor recommended store bought machines. We had  friend who sent us an Angel Care monitor to give us a peace of my mind at night once we were home. The doctor said that was a good one. We spent the rest of day 16 running some errands that we knew we needed to do back home, but could do in Louisville. This way once we were home we wouldn't have to do them. We did our last final routine of dinner, seeing Leliana, and spent our last night at the Ronald McDonald House.
My  mom came on day 16. Nana and Leliana.
Rob feeding Leliana a supplement bottle.
Day 17
The night of day 16 we told the nurse to call us if she had any serious issues that would keep Leliana from going home. We did not get any so we thought it was safe to assume she would go home. I went early to the hospital around 8 a.m. so I could be there when the doctor came in. The doctor came in a little bit after I got there and we got the all clear that she was going home on this day. We did necessary paperwork to get the discharge started. Rob cleaned up our room at the Ronald McDonald House. At 10:30 a.m. we signed the discharge papers. On June 6, 2017 Leliana came home from the hospital after being in the NICU for 17 days. I had brought her going home outfit with me that I wanted her to wear all along. She looked adorable in it. I was so happy to finally put her in it. We were so happy to finally be taking her home. We put her in her car seat at 10:50 and we were in the car and leaving the hospital at 11:15 a.m. We texted everyone that she was in the car going home and we posted to Facebook as well.
Leliana's NICU Graduate Shirt
She gave a grin because she knew she was going home.
Afternoon and Evening of Leliana's Homecoming
We had a 3 hour car drive ahead of us. We stopped for lunch around noon and then got back on the road around 12:30 p.m. We made it home at about 2:45 p.m. The boys were so happy to see us and Leliana! Of course, Logan, Landon, and Liam wanted to hold her. Lucas, our 17 month old, really did not know what to think of her. Throughout the afternoon and evening, we unpacked/straightened up/tackled some things that needed to be. Mostly we enjoyed being home as a family of 7! The next day was going to be busy. Rob had to return to work and I had a doctor's appt. (my 2 week post op appt.). We relaxed and prepared for some busy days ahead as we got settled in a family.
All cozy for her first night at home.
 This concludes our NICU journey with Leliana. Thank you for reading if you read all three parts. I will begin writing about how our time at home as been since we came home June 6, 2017 and about her first few doctor appointments.

I can't leave my blog post without something inspiring. We received a lot of help while we were in Louisville. I am so thankful for friends and family who helped us with the boys, who helped financially, or who provided a meal for us. We were taken care of while Leliana was in the NICU. I am also so grateful to the Ronald McDonald House and what they do to help families who have children in the hospital. If you don't know about the Ronald McDonald House, you can read about them here. As scared as we were, we kept our faith. God brought us through that storm in our life. Here we are two weeks later of being home, she is doing very well and things are so much better. We are still so happy that Leliana is home with us and did not have to stay any longer than what she did. We couldn't not have gotten through without our faith in God and without our awesome friends and family. If you find yourself going through something as rough as we did, remember God is there for you. Also, lean on friends and family.

Again, thanks for reading all three parts of our NICU journey. Please share this with anyone you may know going through something similar. Would love to hear if you've ever experienced anything like this.

32 comments:

  1. I'm really glad that you are back home now! The NICU really isn't where you want your child to be :(

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  2. Ah I am so glad yout beautiful child is with you at home, what a journey!

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  3. I am really glad to read that you are back at home and everything's fine. Such a though experience. You're so strong, you made it out! xx corinne

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  4. So glad that she's at home with you. The NICU is scary so glad that everything worked out for the best.

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  5. Such a hard journey to have to go through, am so glad you had such great support throughout. Leliana is a wonderful addition to your beautiful family. Hope you're all well.

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  6. Oh it is so lovely to hear that she managed to go home! Look at all those beautiful at home pictures.

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  7. What a powerful piece. I cannot imagine having my baby in the NICU. What a harrowing experience. Glad she is all good now and home!

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  8. Welcome home Leliana! I read the entire story and was moved by the resilience your little angel has in her body... So happy for your family. Be blessed!

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  9. Finally. I am so happy for you guys. Now, it's time for new, home based routine.

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  10. Oh wow, finally some good news! It must feel amazing having your baby girls home, her brothers look so proud!

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  11. I'm so happy for good news that she's back and home where she belongs. Looks like she's going to have a lot of protecting when she grows from her big brothers x

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  12. I'm so happy to hear your're back home with her, what an ordeal you've been through! x

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  13. cute how the little kids are happy having the newborn around and feel so happy about it all, motherhood/fatherhood isnt something to go with and come cheap so its of great value to have and handle kids. the house is full of life right now as things are back to normal.

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  14. So sorry that you have to go through all this trouble but glad to know that Leliana is doing fine! She is adorable. God Bless her!

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  15. Hi Jessica,
    Thanks so much for sharing your journey with us. I'm sure it must have been really difficult to expect to go home only to find out you had to stay longer. No, we've never experienced anything like this. We did have a son who was failure to thrive, but that's the closest.

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  16. congrats on the good news - now its all about settling in and enjoying the new moments as a fam

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  17. What a beautiful baby! It must be so stressful to have a child in the hospital, but I'm glad to hear she healthy and home with your family

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  18. What a lovely end to a cliffhanger story! I am glad you got all the necessary medical help for your beautiful baby girl, and that you are all home safe now! xx

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  19. absolutely happy that she's home now. i bet the boys can't wait to spend more time with her

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  20. As a mum of a 28 weeker premie I fully get all the ups and downs. So glad you are all home and can now enjoy having your beautiful baby home xx

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  21. My goodness, what a story! I'm so glad you wrote about in this space. One day she might want to read it for herself. I couldn't help be think what an amazing organization the Ronald McDonald houses are for families facing long hospital stays. And also to the many people who contributed money to help with your expenses. With so much negativity in the world, it's nice to remember there is still so very much that is good and also to be thankful for

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  22. My gosh, she is precious!!! I am currently expecting so I am so into baby stories. Thank you for sharing this story to all of us. So happy she is finally home with her family.

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  23. What an experience for you and the family! It is breathtaking that you choose to document your experience each day even when you don't know for sure what each day will bring! Your story is truly encouraging, and I am glad your little angel is back home with you.

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  24. Sending our prayers to you and your geautiful family. Leliana is so beautiful and strong. I'm glad she is surrounded by so much love.

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  25. Awww she is a little fighter! So glad that she is back home with you where she belongs. You have such a beautiful family

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  26. What a gorgeous baby and indeed Leliana is truly a fighter! :)

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  27. Such an emotional read but glad to she is finally home now and life as they say can move on. Thanks for sharing this and great work by the staff in NICU

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  28. I am so glad that she got to come home after 17 days. When we were in NICU we saw babies that had been in for months and it really was heart breaking to me. I hope that she's doing okay and that you're enjoying every moment with her!

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  29. I'm glad she's okay now. There's nothing worse than having a loved one in hospital and I can imagine it is heartbreaking when it is your daughter.

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  30. Oh she is so sweet! hope she will be well now! lots of love for you

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  31. This is a situation as a parent you never want to be in because it's terrifying, but I'm so glad it's all in the past now and she's home with you :)

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  32. Wow I'm sure there's nothing like bringing that baby home from the NICU. God bless!

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