Monday, June 19, 2017

Leliana's NICU Stay Part 2

If you haven't read part 1 of my daughters recent NICU stay then you can read it here. When I left off, Leliana had just been transferred from our home hospital in Ashland, KY to Norton Children's Hospital in Louisville, KY. We couldn't go to Louisville the day/evening she was transferred because we have four older boys and we needed to sleep/pack for our trip the next day that night (it was a Friday May 26, 6 days after Leliana was born). Once we got home and after we got the boys into bed that night we were able to call the hospital where Leliana was transferred to and got an update. Thankfully, she did well on the airplane and ambulance rides. She also did not have any apnea episodes while traveling and she had not had any since arriving at the hospital. When we called it was about 10:00 p.m. and she left our home hospital about 6 p.m. We were able to sleep somewhat okay that night knowing Leliana was at the new hospital. Though I did not sleep well because I was worried about a lot. That is where I left part 1 off. Part 2 will highlight what we experienced at the new hospital. I will continue to break it up into days. The last day I wrote about was day 6. I will pick up at day 7.

Day 7
It was Saturday May 27, just a week after Leliana was born. She was transferred the day before to Norton Children's Hospital in Louisville, KY. We were still home and but we were traveling to her on this day. We woke up about 7 a.m. and finished getting last minute things packed for our trip. While we were loading the boys into the van, the doctor from Louisville called me and gave me an update. He said they were going to perform a 24 hour EEG of her brain. He said she did not have any episodes over night and that she only wanted to go to Louisville to impress them with how cute she is. Pretty much they were going to let her chill on this day. After the phone call we were finally able to get going. We stopped for gas and some trip snacks and we were on the road to Louisville (a 3 hour drive from where we live) by 10 a.m. Thankfully, the roads were not too bad on the way to Louisville. Even with stopping for lunch halfway, we made it to Louisville and my grandparents house in good timing around 1:15 p.m. We relaxed for a bit and my aunt and uncle came over so we could discuss plans and sleeping arrangements for while we were in Louisville. Once we had a plan for the boys for a few hours we went to the hospital to see Leliana. The hospital was in downtown Louisville, so the traffic as you can imagine was a little rough, especially on a Saturday ht in the city. By this point, it had been almost 24 hours since we saw her so Rob and I were anxious to get to her. My aunt and uncle kept all four boys so we could go see her. After seeing her, we went for dinner with my family at my aunt's and uncle's house. We continued to discuss arrangements for our stay in Louisville which was a little stressful so we found an alternative and we were able to get into the Ronald McDonald House which was right across from the hospital. About 7:30 p.m. we loaded up and went back to downtown Louisville. When we were getting out of the van, a nurse called us and said Leliana had a small episode, but she brought herself out of it which the like to see that. After the phone call we went inside the Ronald McDonald House and did the checking in and a tour. After we got a tour of the Ronald McDonald House, (a requirement for staying there), Rob unloaded our stuff. We had to be split into two rooms as they can only have 4 people to a room. Rob had the younger two boys, Liam and Lucas. He had the younger two because I was still only a week out from my csection so I could not lift them. They still require lifting with diaper changes and all. I had Landon and Logan with me in my room. I did not have to lift them so it made sense for them to be with me. We all were in bed by 10:30 p.m. that day. It was a long day of traveling and a long day of making plans for our boys and for Rob and I. Even though we were in Louisville and a lot closer to Leliana, I still could not sleep very well. I also realized during my hours of not sleeping that Leliana was a week old. I did not get a picture of her while we were at the hospital earlier. It made me sad because I have pictures of my boys at a week old, but not her. That hit me a little bit as well, causing me not to sleep. Also, the stress was beginning to catch up to me and I felt nauseous most of the night. I finally fell asleep around 3 a.m. early Sunday morning.

Day 8
This was Sunday May 28, 2017. Leliana had been in the NICU for a week. Logan, Landon, and I woke up around 7 a.m. that morning. The latest they have slept in a while. Our boys have a thing for waking up at 5:30 a.m. every day. I guess taking them on a road trip and them not getting a nap is the way to make them sleep past 6 a.m. Anyway, so the boys got some good rest. Even though I didn't sleep well, I felt okay. Around 8:30 a.m. we all went down to the cafeteria at the Ronald McDonald House and got some breakfast. The house has breakfast food so we didn't have to buy food anywhere. After breakfast, Rob told me to go see Leliana and he would stay with all four boys even though he was tired. Also, by this point we worked out a plan for the boys. Rob's mom, brother, and sister in law had traveled to Madisonville, KY which is 2 hours west of Louisville and 4 hours from our home in Grayson, KY. The plan was that they would come through Louisville around 5:30 p.m. that evening to pick up the boys and we would trade cars. They would also see Leliana as well. Anyway, Rob kept the boys so I could go see our daughter and get an update on her. I was able to see Leliana and spoke with the resident doctor. The EEG was looking clear. Since it was looking clear, there wasn't a rush on this day to do anything. The doctor said it would be up to the neurologist on how long she would be here. The resident said anywhere from 3-5 days without any episodes and that what is day 8 of her being in the NICU is day 1 of episode free. Leliana had not had any major apnea episodes at this point. Hopefully the neurologist would have more answers for us the next day. With that said, they did find a heart murmur and they did an EKG. This was following the heart issue they found at home. The resident said it should be nothing, but they wanted to double check that there wasn't anything wrong and the results would be available the next day. After seeing the doctor, Rob and I decided to take the boys to a park so they could run off some energy. Even though I grew up in Louisville, we had to use our GPS because I didn't remember where anything was anymore in my hometown. The boys had fun at the playground we went to. After the playground we got lunch and went back to the Ronald McDonald House to take naps. We all took a good nap, even me. I was able to rest a little bit easier knowing Leliana was going to be okay and she was doing well. After our naps, we went to a play area inside the Ronald McDonald House since Rob's family was on their way to pick up the boys. Rob cleaned up one of the rooms since he and I would no longer need two rooms there. While Rob was cleaning up, Rob's family and some family friends arrived and we had the boys clean up so we could go eat dinner before Rob's family made the last two hours of the trip to our house. After dinner, we went to take Rob's family to see Leliana. When they were done seeing her, we told them and our boys bye. I cried because we had to tell our boys bye. I hated that we would be separated, but it was for the best. Our oldest told me, "Mommy, don't stay."That made me meltdown. I knew the boys would be in good hands with Rob's mom and some friends back home. After they left, Rob and I stayed with Leliana for a little bit before going to Wal-Mart to get things we forgot at home while packing. We went back to the Ronald McDonald House to get some sleep. Here are pictures from day 8:
Day 9
This was May 29 and also Memorial Day. I did not think too much of it being Memorial Day because I was definitely distracted. We created a routine this day of going to see Leliana in the mornings, getting lunch, going to clear our minds by walking around a store, then getting dinner, and then seeing Leliana in the evenings. This routine continued for as long as she was in the NICU. The news for this day was from a neurology standpoint, everything looked clear. We were waiting on the results of the EKG, the doctor was confident that it would also be clear. The good news was that when Leliana would need to follow up in a few months, the people that did her EKG in Louisville are based out of our hometown. They stopped the caffeine that they had been giving to Leliana. The doctor said we  would then start counting from today since they stopped it that morning. She would need to be episode free for 5 days. This day (day 9 of her NICU time) was day 1. Leliana could be going home Friday/Saturday (June 2/3). We had a clearer picture at that point of how long Leliana would be in Louisville. I also inquired about nursing Leliana. To this point I had been pumping (though I went two days without doing it, but my milk was fine) and I did nurse her at our home hospital. I was told I could definitely nurse her. After lunch and some clearing of our heads, we went to have dinner with my grandparents. It was good to see them and spend time with them (one reason why we chose Norton Children's Hospital since my family lives in Louisville). After dinner, we went back to see Leliana and then went back to the Ronald McDonald House. Things were looking up.



Day 10

This was Leliana's 10th day in the NICU. The doctors rounded around 10 a.m. Day 1 of her not having any apnea issues was done. We had four more days. Her EKG was clear, and we will follow up with another one in 6 months. My grandparents came to see Leliana. My grandma was in heaven with her great granddaughter. Other than this, not much else happened on this day. We stuck with our routine as mentioned on day 9. One thing I was not looking forward to was Rob would have to travel home for work on the next day. I wanted as much time with him before he was to leave the next day. I did not want day 11 to come. I wanted my husband to stay in Louisville with me. We had an enjoyable Tuesday knowing our daughter was doing even better.
Day 11
This was May 31 and also the day Rob would have to travel home to go back to work because money didn't grow on trees. We spent the morning with Leliana. There really was not an update on her except that, the doctors were saying at this point she would go home Friday, June 2. We started on this doing some discharge work such as basic care information for when we take her home. After we visited with Leliana, we went to get lunch and Rob was going to take me to my grandparents house after lunch where I would spend the afternoon. About the time he was going to get on the road to go home, our church secretary called him. The great news about this was that Rob got to stay with me until we would take Leliana home. We have a wonderful church at home and we were so blessed by them during our time with Leliana in the NICU. Our church helped financially so Rob did not have to go home. We ate dinner with my grandparents and did a laundry. We only packed for about 5 days so we were running out of clean clothes. I was thankful for the help my grandparents gave as well.

This is where I will stop for part 2 of Leliana's NICU stay. Day 11 was the last day of May. When I write part 3, it will be June. It is kind of crazy how fast the month of May went. At the beginning of the month my family and I celebrated the graduation of my brother in law from college. We celebrated Mother's Day on May 14. On May 19 we celebrated our oldest finishing Kindergarten. Of course on May 20 Leliana was born and her birth and first 11 days in the NICU took up most of May. As crazy as May was for us, one thing remained the same during the craziness and that was how good God is and was to us and we knew through it all God was in control.
 Pictures below are some things that happened before Leliana was born and comparison pictures of when I was a baby and when Rob was a baby and comparing them to Leliana. 
This past 5 pictures were taken on Mother's Day
Logan's last day of Kindergarten
Me as a baby on the left and Leliana on the right.
Leliana on the left and my husband on the right.

My next post will pick up on day 12 of Leliana's NICU stay. Again, please share my posts about our NICU stay with anyone you know that may be going through something similar. Comment if you have been through a NICU Stay tuned for the last part of her NICU stay.
 
  

41 comments:

  1. So sorry to read this, what a very difficult journey. Having a baby in hospital is so harrowing and the fact that you have four elder children to care for too - you have so much on your plate. I wish you lots of strength and courage and of course wish Leliana all the very best.

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  2. Really sorry your family had to go through such difficult times. A really difficult journey. It must be so stressful to have your baby in hospital. You are so strong and it takes a lot of courage to talk about it online. I hope everything gets better! xx corinne

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  3. It sounds like you're having a very difficult time but that your beautiful little girl is being well looked after and your family are there to support you. I hope things get better and you can take her home soon! :-)

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  4. I can't imagine how tough it's been for you lately. It's horrible to have a baby in hospital x

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  5. I know it's a trying time, keep strong. I wish everything will be better. Just keep the faith.

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  6. Oh my goodness, poor you. It sounds like such an awful and harrowing experience. I'm so sorry that you and your family have to go through this!

    xo Jaime

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  7. I'm so sorry to hear you have to be going through this difficult time. I'm happy to hear though that things are looking up, and that you have an extremely supportive church community! It's always great to have people to lean on during trying times in our lives. May God continue to bless you and your beautiful family!

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  8. Will be sending all the love and strength you need to get through this difficult time! <3

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  9. Wow what a difficult time you all went through, you have a lovely family and it is amazing how you all held each other up.

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  10. Wow, this must have been a really terrifying experience for your family to go through - so much upheaval, and newborns are so fragile. I'll be looking for the rest of the story too, to see how it all turned out.

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  11. This sounds like such a stressful time for you and your family to go through! I hope all worked out ok in the end.

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  12. This is a difficult and emotional time for all of you. Wishing you and your family love, hope and strength.

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  13. You are such a strong mama! I am so sorry to hear of your struggles. Hugs!

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  14. My heart aches for you love! The good news is that it sounds like your little angel is a trooper and she adorable too! My thoughts and prayers are with you and your family.

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  15. I'm so sorry you and your family are going through this. I'm so encouraged that you're finding your hope and rest in God during this time!

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  16. Having a baby in the NICU sounds like a terribly stressing time. I am so thankful that both of mine were born safe and healthy.

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  17. We had a good long stay in NICU with my son when he was born. It was one of the most heartbreaking experiences that I have ever been through. I give you all my love mama, I hope that this is over soon and you have your baby back home <3

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  18. Precious baby congratulations! I know is difficult to be at the NICU and going through an experience like this. Praying that all goes well and that your baby can go home soon.

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  19. I hope that your little girl can come home soon. Must be terribly stressful for you.

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  20. What a difficult, difficult time this must be for your entire family. It's wonderful to have that faith that can get you through it, isn't it? Sending love and prayers. x

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  21. I feel sorry and sad while reading this. You are such a very strong lady and mom. Hope leliana would be fine soon.

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  22. stay strong and always think positive thoughts as I'm sure it will go well

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  23. Cute kiddie pics. A new baby is so precious and a gift from God!!!

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  24. My daughter had a brief NICU stay and it was stressful. I will pray for you all. Stay strong, she seems like such a little trooper!

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  25. So sad to hear all about this. I know its a difficult time for the family. I wish the little one will be fine soon.

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  26. So sorry to hear you have been through this, my thoughts are with you and your family. Hoping your precious little girl will be home with you soon

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  27. seeing that smile at such an early age is so adorable, stay strong, smile with her and hope for the best!

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  28. That must have been such a stressful experience for you. Such a long way for such a small baby to travel too. I am relied to hear that she started getting better once she had been transferred. I really hope she is doing much better and you were all able to go home together safely (btw, gorgeous pics of your little guys too!)

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  29. It must have been an awful time. It's great that your husband was able to stay and give support at the start and didn't have to rush off to work. I hope all goes well.

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  30. My two youngest were in NICU for the first few weeks of their lives. It was a very worrying time for us and I can remember it like yesterday. It sounds like you have been through so much with your daughter. Much love.

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  31. What a story. I am so sorry to hear how difficult is has been. I wish you daughter all the health in the world.

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  32. I am truly so sorry to here of the bad time that you are having. But you certainly have a beautiful family my love.

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  33. Its really touching story , I can feel how difficult was that situation . Wish what you had strengthen your faith and love

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  34. Its really touching story , I can feel how difficult was that situation . Wish what you had strengthen your faith and love

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  35. Having anyone in hospital is hard nevermind a baby. Especially for a long time. She is in the right place and getting the care she needs. Must be hard for you and the boys and you are all doing a fantastic job x Hope you had a happy Mothers Day x lots of love from across the pond x

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  36. I am so sorry to hear that your family is going through such a difficult time. I can only imagine how stressful and difficult it is. My thoughts are with you and hope everything will get better very soon.

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  37. Sorry that you and your family are going through a hard time. Sending love your way x

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  38. Sending so much love and please have faith. Everything will settle down, you will see. Wishing you all the best ♥

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  39. I am so sorry you had to go through all of this. It must be so difficult to not be able to hold your baby for the first few weeks after her birth. Nevertheless, she is getting better and stronger and soon you will be able to take her home and be a normal family again. Stay strong and keep the faith. Sending lots of love and prayers!

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  40. That is not easy to go through but I admire your strength and endurance! I love all the photos!

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Thank you so much for reading my whole post and for commenting. It means so much to me. It would also mean a lot if you were to share my post as well. Hope you have a wonderful day!