After about 12 hours Hailey started showing possible signs of infection from labor. I had a fever, which pointed in that direction as well. The pediatrician felt it was best for her to spend some time in the Special Care Nursery at Good Shepherd and have a round of antibiotics just to be on the safe side. It was really hard to not have her with us, but we agreed with the decision & appreciated them taking precautions. We were able to visit her whenever we wanted and I was able to go down to nurse her. The nurses were amazingly comforting which helped so much.
Around the 24 hour mark (Sunday Morning) Hailey had a "desat" episode, which means she stopped breathing for about 45 seconds and they had to stimulate her to get her to breath. The neonatologist said this can be very normal in babies within the first 24 hours so they were not concerned. However, later that night she had another one, this time taking 2min and some oxygen to get her back to normal. At this point they were concerned and told us they would definitely be keeping her for more time. This was incredibly heartbreaking as the desire & plan we had to bring her home with us was shattered. To think about leaving our baby girl was heart wrenching & felt unfathomable. We didn't know how we would best parent Emma through this (we knew she would be confused). And we were so scared that something serious could be wrong. We were however so incredibly grateful that she was in the Special Care Nursery when this happened because they have the nurses and equipment readily available. Had she been in our room it may not have gone as well.
Throughout Sunday night & into Monday morning she had about 5 more episodes, none as severe as the 2min one, but still concerning. Most happened while she was sleeping, but a couple while she was awake. At this point we knew something more was likely going on. The nurse was again incredible in reassuring us. She let us know that this is a symptom of something and they are trying to figure out what it means. She assured us that they see this often in their job, so it is not as shocking to them, even though to us as parents it felt shocking. She said that they were going to begin collecting information to rule in and rule out different possibilities - infection, heart issues, neurological issues, etc (there were more, but I can't remember all of them and to be honest I'd rather not know every possible negative outcome. I was okay with her doing her job of shielding me).
As they began collecting this information through blood tests, EKG, Echocardiogram, etc. It became clear that to do all of the testing necessary they would need to transfer her to somewhere more specialized. This was incredibly scary to hear. We were blessed to have been meeting with Pastor Ryan at the time and he was in the room as the neonatologist explained things to us about a transfer and updated us to how Hailey was doing. It was so good to have a third party there (and if anyone has seen us at our worst throughout the last 4 years, it's definitely been Pastor Ryan. I've already ugly cried in front of him, so I had no problem doing it again!) to hear through different ears and help us make a decision in the midst of our physical & emotional exhaustion. We agreed to have her transferred to Lutheran General (LG). She would go in the ambulance with the neonatal team from LG & we would meet her there. To think about our baby girl going out into the world without us was so hard. We had to dismiss about a thousand "what ifs" and just trust. Trust that ultimately God is in control and loves her more than we ever could. Trust that He would be with her for every moment we could not be. Trust that the doctors and nurses are good at what they do and for them this is a normal work day. And admit that no matter what, we have no control over any "what ifs" or outcomes - really we never did, as we were quickly being reminded, but that God is in complete control of every single "what if" and that he is a good God who loves us tremendously.
Hailey was transferred and admitted to LG around 4pm. The transport team was so great! They even took pictures and texted them to us so we could see how she was doing. They called as soon as she got there and kept us updated. My doctor quickly discharged me (which was generous and a blessing considering at the time I was only 2.5 days out of my C-Section) so that we could leave. We came home, showered up, ate dinner, and spent some much needed time with Emma. It was so good for our family, but at the same time really sad because Hailey was not coming home with us. It was so much different than we thought it would be. And as weird as it sounds, the house didn't feel the same without her. I missed her so much and wondered how she was doing. We got to LG that evening (they had advised us to give them a few hours to get her all set up, plus she was busy with some tests that we couldn't be there for). The doctor still felt that it could be an infection causing this and ran some more blood tests and did a test on her CFS fluid (fluid around the brain). A lot of it is cultures that they watch over 48 hours, but the parts she could see looked good. We got to hold her for awhile last night and I got to nurse her, which was such a blessing (she's been on an IV). They continue to give her antibiotics to fight any possible infection. They are running an EEG this morning, and then possibly a MRI to see if there are any neurological issues. We are just following the doctors lead, as all of this is beyond any medical scope we have (so it's more than a fever or a cough pretty much).
The neonatal nurses are incredible. You really have no clue how special they are until you see them in action - tremendous medical knowledge, love for these babies that are not even their own, strength to handle these heartbreaking medical cases daily, patience and understanding for weepy & sleep deprived parents (yep, that would be us). They have an incredibly difficult job and I have yet to meet one who is cynical or rude. They have been so good to us and as we sat with Hailey yesterday and got to observe them in action I was amazed. My cousin was a neonatal nurse at Children's for awhile & I feel like I just found out she is some sort of secret European superstar - you mean this is what she does?!! This is a huge deal! She may be my new hero. Our nurse made us feel so normal. She assured us that this is just part of Hailey's birth story. She took pictures of our family and treated Hailey like she was a normal baby. She also gave us permission to go home and let us know we could literally call every half hour to see how she is doing if it would help us to rest. She answered all of our questions, empathized with us, and even cried a little with us. It was so caring & helped a lot. We came home late last night and called a couple times to see how she was doing. Each time the nurse said "thank you for calling" which made me feel anything but annoying for calling to check on her. We were able to sleep, eat, and see Emma this morning. I am doing my best to rest & recover from my C-section in the midst of all of this. We are heading back in this morning & I cannot wait to see my Hailey girl! She did so well overnight! She ate a few bottles that I had pumped and they are taking her off the IV. She has had zero "desat" episodes since Monday late morning.
God has been with us every second and every step of the way. His grace is beyond evident. From the decision to admit her to the Special Care Nursery (which may have saved her life), to giving us great nurses, having her transferred to LG, to the absolutely incredible support system we have (seriously - we have the best friends/family in the world), to the peace and trust we have felt throughout this entire experience. We used Grace as Hailey's middle name to remind us of the grace God has given us, but I think God had a different meaning in mind - her entire life has been covered by His grace and goodness. She is grace to us. One of the meanings of her first name is Hero or Wise One (other meaning just say hay baler, but we're going to ignore those). She has been a little hero throughout this - she is a strong girl!! And we have been reminded over and over that even though we don't know what is going on that none of this is a surprise to God - He knows her little body inside and out.
We would love your prayers - for healing for Hailey, that the doctors would find some answers, for continued peace for us, that she would continue to eat & nurse well, for Emma as she processes all of this (my mom is staying with her, which helps SO much).
We will update on the blog when we are able. We have been so encouraged by the texts and sweet words from friends. Know that we may not be able to reply, but each loving word speaks straight to our hearts. We feel like the luckiest people in the world to have so much support and people who love us.
Psalm 71:5-6 "For you, O Lord, are my hope, my trust, O LORD, from my youth. Upon you I have leaned from before my birth; you are he who took me from my mother's womb. My praise is continually of you.
To read the updates from our NICU journey, you can click below.
Hailey Update 2.25
Hailey Update 2.26
Our Best Day Yet!
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