Saturday, June 17, 2017

Leliana's NICU Stay Part 1

After sharing my birth story, I can now shift gears and write about Leliana's NICU stay. Anybody who has had a baby in the NICU knows that no matter how long or how short a baby's stay is, it is still too long for the parent. NICU time for a baby takes away the bonding time between the baby and the parents. Leliana wasn't our first baby who had to be in the NICU. Our oldest, Logan, was in the NICU for a week after he was born on September 4, 2010. Logan swallowed meconium (bowel movement in the womb before he was born) and he had a lung infection and then a feeding issue. He was in the NICU for 7 days and came home September 11, 2010. Back then, I thought those 7 days were really hard, especially as first time parents. I didn't know what the future held for Rob and I. This post isn't about Logan, it is about Leliana.

Day 1
Back to Leliana. Right after she was born, she went right to the NICU because she had some trouble breathing. The breathing resolved itself and when I was wheeled to her at 2:30 a.m. on May 21, the NICU nurse told me she now had low blood sugar so she couldn't be in my hospital room with me. I was able to nurse her before being wheeled to my hospital room. It was rough not having my baby girl in the hospital room with me. I was able to have my middle three boys (Landon, Liam, and Lucas) with me. I was of course having flashbacks of when Logan was in the NICU.

Once I got settled into my room around 3:30 a.m., my nurse told me she wanted to have me up and walking around 6 a.m. (I had a csection and the sooner you move after a csection, the better). I thought that time was great because I could walk down the hall to the NICU to check on Leliana. About 6:45 a.m., Rob and I walked down to see Leliana. We got to hold her for little bit, but they were getting ready to do a shift change so we had to leave at 7 a.m. We could go back after 8 a.m.

After we had a hospital breakfast, we went back down to see Leliana. Sadly, we couldn't hold her because her breathing got a little harder again since 7 a.m., when we were there earlier. They were letting her chill because they didn't want to cause too much stimulation. They did not start the wean from the fluids yet, because of the breathing issue. She was on fluids because of her low blood sugar. Admittedly, this where it began getting hard on me, especially where Leliana is our last baby and I already began feeling like I was missing out on bonding time with my baby girl. After we got back to my hospital, we had lunch and then rested The doctor for Leliana came in right as I woke up around 1:45 p.m. with another update which was not great but he reassured us was normal. She had an episode called premature apnea, they put a cpap on her and then was able to switch to a nose cannula but he said it is normal for preemies to have episodes like this. She was going to have to spend 5 days in the NICU anyway for observation. The episode restarted the clock. The doctor also said, she might have an infection, they tested for that. They did start antibiotics just as precaution though. Some tests at this point did come back and they looked good. The cultures would be back within 48 hours of this. All of that was May 21st which was her first full day in the NICU. 

The picture is a little blurry, this was how she spent her first day in this world.
Day 2
By 10 a.m. we had an update on Leliana. Her heart rate kept dropping over night. When I was there last night with her, her heart rate was all over the place. They did an echocardiogram that morning, May 22. We still could not hold her much which was heartbreaking for me. They didn't want to overstimulate her. As far as how I was feeling physically (I was still two days out from a csection), I was more sore this day. My doctor told me to take it easier than the day before to get the pain under control. I was very worried and anxious about our baby girl. I was trying not to because I was healing from surgery, but it was still hard. I was reminded a lot that Leliana was here, she was being taken care of, and I needed to heal up. 

After lunch, the doctor for Leliana came in and explained that they tried to take her off the nose cannula, but she didn't tolerate that and the would try again the next day. She did have another episode like the ones from the day before around 10 that morning, after we had already seen her. This was the main reason I can't hold her, they did not want her to be stimulated too much. The echocardiogram results showed that two of the three valves that we all have that are supposed to open and close are doing that but her third one appears it wasn't. The doctor told us she will need another echocardiogram done in 2 months to make sure there won't be any other heart issues. That did explain why her resting heart rate was lower than what other babies resting heart rates are (normally 100 or above is what the doctor said) and why it was also all over the place. I should have asked at this point, but the 5 days they said she'd be in the NICU may turn into longer than 5 days. I called Rob with the results and I lost emotionally. Mainly, this was not how I envisioned my last birth experience. Anita (Rob's mom and Leliana's Mamaw) got to see Leliana the night before and hold her. I am so happy that she was able to, but by the time I took my brother in law and sister in law down to see her, they couldn't hold her. 

After the doctor left, I decided to get some rest before going down to see Leliana for the evening.  Leliana made a huge turn around that afternoon. Rob went and talked more in depth with the nurses in the NICU, mainly because when the doctor spoke with me I had just woken up. Her oxygen had been great all afternoon. Though the results of the echocardiogram sounded concerning, it will be okay. She did have an ultrasound of her head done and the results came back fine. Not only did I get to hold her that evening around 5, I did skin to skin, and I got to nurse her too! They started to decrease the fluids because her blood sugar was doing great. Leliana's heart rate was better (still flucuates some from what I saw, but wasn't dipping and making machines beep like earlier). As long as she didn't have anymore premature apnea (where  she stops breathing) spells and she has no issues weaning from the fluids then she will be okay. She just needed to behave as the nurses told us. This was a much better path than earlier and we hoped she would be home within a week. 


Day 3
Day 3 was May 23, which was also my 30th birthday! I realized that I hadn't been in the hospital on my birthday since the day I was born (I do have a future post about how it feels to be 30). Yep, I was still in the hospital, but our hope was I'd be discharged on May 24. Leliana did very well the previous night. Her blood sugar was great. She'd been on fluids (dexatrose) and since the afternoon before they started feeding her again so the fluids were turned down at every feed. At 5 that morning the fluids were turned down to 2 (starting was 9.3). As long as her blood sugar remained perfect she would be off that in after 2 feeds. She was still on an antibiotic, but they weaned her from that on day 3, I think. She still had the nose cannula for oxygen. We hoped she would get off those on day 3 as well. She had not had anymore episodes where she stopped breathing/premature apnea. That was the very good news at this point. She was eating great and I started to nurse her, again that was more great news. Her 5 am feeding had more of my milk and less bottle. I was encouraged she will nurse great despite having a bottle and the rough start she had. I had been making it my fight to nurse her, which also meant pumping milk so I could build my supply. At this point, she would probably stay in the NICU for at least 1 more day, at most maybe 3 more depending on if she wanted to give up the oxygen through her nose.
 

Also, something new came up, which wasn't a big crisis, Leliana ended up being allergic to all things Pampers, wipes included. We learned about that on day 2. Leliana broke out into a bad rash on the night of day 1, from the diapers and wipes. At this point we were not sure yet about Aldi brands of baby items since we use those. They switched her to Huggies diapers (I am not a fan of Huggies because they irritate the skin too (for my boys they did), but they think they weren't irritating hers because the rash is got better after the nurses made the switch. They switched to cloth wipes at this point, too. My plan then was to cloth diaper anyway, just will have to really do it 24/7 and cloth wipes for her unless we found Aldi brand wipes does not irritate her. The nurse did suggest hypoallergenic baby wash (Aveeno or something). We cloth diaper Liam and Lucas, don't always do 24/7 with them (nighttime and sometimes when we run errands), but we do cloth diaper them more often than not. So hearing that Leliana had very sensitive skin really didn't phase us and one reason why we do cloth diaper (I made a whole separate post about cloth diapers).

Rob, Anita, my brother in law, my sister in law, and the boys all came up to the hospital before lunch. Will and Chey (my brother in law and sister in law), finally got to hold their niece (their niche for those that like Boy Meets World). After lunch, we got another update. Leliana was off the nose cannula, off the fluids, and off the antibiotics. We found out she had to stay until Saturday, May 27 to make sure she wouldn't have any more episodes of the apnea spells and to make sure she would hold her own as far as oxygen and blood sugar goes. We misunderstood that she would be in 5 days total, that was actually 5 days total as long as she did not have any set backs. The clock restarted and day 3 was day 1 of 5. Our hope was she would be home that Saturday, shortly after me. I was happy to get pictures without all the wires on her! 

Day 4
The night of day 3, I came down with a post surgery infection. This meant on day 4 I did not go down to see Leliana very much. This also meant I was in the hospital a little bit longer as well. Rob came down on the night. This was the update he was given. They told him Leliana had another episode and she destated pretty bad. She would have a test done the next day of her head to make sure there isn't any hemorrhaging. This started the 5 days over of her NICU stay.



Day 5
I went to the NICU before lunch on day 5. The nurse said that the CT results were clear. The EEG results were also clear. She said we were just dealing with apnea episodes. This day was one of our best nursing sessions. I hoped this meant we would be on the upswing. I knew Leliana was a fighter and was strong. Leliana did very well on day 5 (just to be clear her 5th day on the NICU, not the 5th day of the 5 days she had to stay in the NICU apnea free). The next day would be a different story, because I was finally being discharged after 6 days of being in the hospital. While I was happy to go home, it was hard knowing I'd be leaving Leliana in the NICU. Our hospital is about 25 minutes from our house so being that far from her, I knew would be rough. I made sure to go to the NICU every chance I got on this day. I did go to bed early so I could be well rested to go home the next day.

Day 6
This was the day I was already dreading. I didn't know how much more I would hate this day. As I was finishing breakfast, my doctor came in and said I was good to go home. I told my doctor why I was crying into my scrambled eggs and he gave some encouraging words and he told me not to dehydrate with all my tears. After he left I went to see Leliana The doctor was there and informed me Leliana had a rough night with more apnea episodes through the night. The doctor felt she needed more than what our hospital could give her and felt she needed to be transferred to a children's hospital. We began working on a plan to figure out where to transfer her, childcare for the boys, and other details that came with that situation. Also, my van battery decided to die so my husband and brother in law worked on my van all morning. I had to make sure the hospital delayed my discharge until my husband could get to the hospital which was about  3:30 p.m. He had to drop the boys off with our friends first. Since Rob knew the news of her having to be transferred, he wanted as much time with her as possible.

Once Rob got to hospital that afternoon, we discussed details in length. Our options of hospitals were Norton Children's Hospital in Louisville, KY or Kentucky Children's Hospital in Lexington, KY. I have family in Louisville that told me they would be willing to help us. We went with Norton Children's Hospital in Louisville, KY. We told the doctor and he went to work right away getting the paperwork done. At that point, we finished my discharge paperwork as well. About 5 p.m., we had not heard an estimated time of arrival of the transport team so we Rob and I left to go get dinner at Taco Bell. My first meal out of the hospital was Taco Bell. I found that humorous and at that point, I needed a little humor to help me through. We got back to the hospital around 5:45 p.m. and about 10 minutes later the transport team from Norton Children's came. I signed more paperwork. The transport team explained that they would be traveling 30 minutes on ground by ambulance to get to the airport and then it would be a 45 minute flight. Once they would land in Louisville, it would be another 30 minute ambulance ride to Norton Children's Hospital. Total time was about 2 hours. They gave us time to tell Leliana bye because we would not see her until Saturday. It was very hard on Rob and I to tell our daughter bye. I cried some more. On this day I cried so much that my contacts got blurry. It was a very emotional and high stress day for us. Telling her bye, even for just one night, was very hard. For one night we would be three hours away from her. Our plan was to pack and sleep Friday night so we could travel on Saturday. We definitely needed our sleep because we were taking the boys with us.

After the transport team left, we went to get our boys from our friend's house. We hung out with our friends for a bit because we needed some time with them. We needed to take a breather after the day we had. The boys were eating dinner when we arrived so that allowed time for them to eat. We ended up leaving our friend's house about 8 p.m. I was excited to finally be able to go home, even though it was just for one night. I was able to shower in my own shower once we got home and got the boys to bed. After my shower I packed enough clothes to last a week for all of us. I packed light because I knew I could do laundry if needed at the home of one of my family members. After packing, Rob and I relaxed for a bit before going to bed. We finally got to bed around 11 p.m. I did not sleep very well. I was worried about Leliana, about our car ride we'd be taking, about my own health since I was a week out from a csection. The sleep I did get was enough to get me through the next day, which was a miracle.

This concludes part 1 of Leliana's NICU stay. The next part will pick up when we arrived to Louisville. Everything in this post occurred at our home hospital, King's Daughters Medical Center in Ashland, KY. As sad as it was that Leliana had to be transferred, I have to say that the NICU team at our home hospital was amazing. They treated Rob and I very well with empathy and understanding. They took great care of Leliana and made sure we were updated on everything. They also made sure to explain everything so we understood what was going on. I am so thankful that Leliana was born where her four big brothers were born. I am also thankful that the NICU team was amazing to us. I hope to send them a thank you card soon so that they know how grateful we are for the work they do everyday. If you have ever had a baby in the NICU, then you know exactly what I'm talking about.
 I am so thankful how God worked it so I could be in the hospital at our home hospital as long as Leliana was. I was always right down the hall from her which helped me and her. At the time, I didn't understand what was going on or why (me getting a post op infection and my baby being in the NICU), but looking back it was really good my hospital stay was lengthened a little bit. I am thankful that God put the right doctor on her case to know that she had to be transferred. The timing worked out and that was because of God.

If you know someone who is going through something similar, please share my blog post with them. I would love to connect with other moms who may be going down the NICU road.


43 comments:

  1. Oh gosh this must have been such a scary thing to go through and not being able to have your little one nearby must be heart breaking in those early days.

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  2. Heart breaking. No other words. Your story really touched me. It must've been so hard for you. I wish you and your little Leliana all the best!

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  3. I've never had to experience NICU thankfully but my best friend did and I give you kudos and hugs. It's a whole other beginning and one that seems to stay with you.

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  4. You are such a strong person and I wish you all the good you can receive in the future. Shes a precious beauty for sure.

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  5. What a beautiful baby. Glad she had a good team working with her

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  6. What a traumatic few days for you. So glad that she is now at home with you. She is gorgeous. Hope you are well too

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  7. I had two homebirths. With my second, my son got too cold right after birth. He was having trouble nursing. Luckily my midwife's assistant was a lactation consultant. She was able to get some colostrum in him, which perked him back up.

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  8. Such a sweetness. Sounds like it was stressful for all of you. Not what you hope for... Wishing you both well...

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  9. OMG! I can't imagine all the emotions going through your mind. Glad the hospital was understanding and took good care of both you and your baby.

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  10. Wow, what an increble journey you all have been going through with your new little one! I remember my brother (9 years younger than me) going into the NICU a few days after he was born and it was high emotions and stess for sure. Hoping you all continue to stay strong.

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  11. My heart goes with you my darling as my little doll too was in the NICU for a month and every day was like 100 years.

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  12. Oh my goodness what an ordeal! So glad everyone was ok in the end!

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  13. No other words but heartbreaking, I had tears in my eyes reading this and the pain you were going through. It sounds like you had an amazing medical team looking after you both x

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  14. I can only imagine how hard Leliana's stay in NICU must have been for your and your family! Leliana is such a fighter, what a lovely baby! :)

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  15. So glad that he is ok. Your right anytime in the NICU is tough. Every day I was in the NICU with my niece was a day to long. God Bless

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  16. I can't even imagine, and I'm so sorry this was your experience. It would have been so difficult not to have been able to be with your little one after he was born. I'm so glad things are going better for your family now. x

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  17. I volunteered at a NICU for a while, and so I just want to thank you for sharing your story. I know how hard it is for parents, and I really hope you all the best in this journey.

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  18. Sounds like beautiful little Leliana has had such a difficult start to life, and I can't even imagine how you must be feeling. But happy to hear that she's finally home and you're all doing a lot better x

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  19. Oh my goodness :( bless both of you, I am really sorry to hear what you have been through the past week but I really hope that things can settle down. She is gorgeous and has a lovely name. Good luck lovely x

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  20. I am sorry you got to experience such a tough time with your little girl. My daughter stopped breathing for some seconds right after she was born and the doctors went all "Grey's anatomy" on her. Scarriest moments of our lifes!!!!

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  21. Hope you and your little angel are doing well. I can't imagine what you went through. She looks so cute!

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  22. What a great baby! You both look so proud. Congratulations.

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  23. What a tough experience you had with your baby. Good to know she's getting better.

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  24. My baby was in a unit too, it is a real worrying time and does make the bonding just that bit harder.

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  25. She looks beautiful and I hope the best for you two. This is such a great journey to be able to embark on.

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  26. First, your baby girl is beautiful! Second, you are a strong woman and I'm sending positive vibes to you and your family!

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  27. Sending prayers your way. My friend has a baby in NICU right now too - born at 28 weeks. I hope you get to bring your baby home soon

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  28. Sending prayers your way. My friend has a baby in NICU right now too - born at 28 weeks. I hope you get to bring your baby home soon

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  29. I don't have my own child yet perhaps never will. But when my nephew came into our life in 2015, our family was the happiest. But he was born earlier than he should and we were told he had to stay for a while in NICU and his mom will just visit him everyday. It was so heartbreaking for all of us. Praying for your baby!

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  30. I personally have not experienced this before but I feel so much for you. I'm sure everything will go well eventually because Leliana is a fighter as we can all see! She's so adorable!

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  31. Aww what a gorgeous little girl and you are such a strong momma - it sounds like you had a great team too!

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  32. You are such a strong mama! I really hope you are feeling better with the infection! and massive congratulations on your daughter! You both are fighters! x

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  33. What a scary experience, best wishes to you and your family for getting through such a tough time x

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  34. Our son Logan spent several days in the NICU it wasn't easy but the staf was amazing and really supportive. Your experience sounds terrfying;) SO glad your gorgeous daughter is home with her family now

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  35. Oh Lord, what a challenging time. I feel for you and precious beautiful daughter. Yet we rejoice and thank God with you that all went well. May Leliana bring much joy to you. wishing you and your family, health, blessings and happiness.

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  36. Oh my. What a difficult and hard time ypu all went through! I'm sorry that things didn't go to plan, bit I look forward to hopefully good news to come!!!

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  37. This sounds so rough. I can only imagine what it would have been like. I know that apnea is such a dangerous thing even for adults. For aa little one to have it would be awful.

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  38. I think it is wonderful that you took time to document your ordeal, as much of it fades away as the weeks fly by and baby gets stronger.... I send both of you love and blessings. Welcome to your earth family Leilani!

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  39. Carson spent his first 10 days in SCBU and I was truly amazed by his care. I wish I'd have kept a diary but I really wasn't as strong as you clearly are. Sending love to you all x

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  40. cute kid, amazing to show some family bond between child and parent. congrats and Gods blessing on you and the kid.

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  41. Such a blessing! When I had my twin boys, one of them almost had to go to the NICU and I felt like a nervous wreck just at the idea of being separated from him. You are a very strong woman!

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  42. i'm glad that Logan is okay. Love that name by the way. Also sending prayers that Leliana is getting stronger and better as the days go by. You're lucky to have a great support system and writing this out has got to be therapeutic. All the best to you and your beautiful family.

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  43. Such a terrifying time for a family to experience, but such lovely pictures of you all. I wish you all the best.

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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!