I thought I would be sitting here sharing with you our somewhat crazy and incredibly joyous labor experience, and maybe I will soon, but we have a way bigger story to share right now. We need your prayers. I don’t want this update to be alarming, or worrisome for anyone, but fear totally gripped our hearts Wednesday morning. I will try to tell the story the best I can and in terms that you can understand (nutshell version).
Cora Grace had a great first couple of nights of life. She has acted like a total, happy, fussy, hungry, well baby from the very beginning. She loves to eat! I hope mommy can keep up with her!
Background…I progressed quickly in labor which was great and surprising for a first time mommy! The bad part, I ended up pushing for almost four hours. They did threaten a c-section a couple of times, BUT Cora looked great on the monitor (believe me, I was listening closely), and I felt good and still felt like pushing (Even though I had two epidurals that DID NOT work). Yes, you read that correctly. Anyways, Cora was a little stunned when she came out and had quite a bit of bruising on her head. How this big ole beautiful baby fit inside me, I have no idea!
Cora did exactly what she was supposed to do the first 36 hours or so. She ate well, peed, pooped, fussed, everything a well baby should be doing. She did start her cluster feeding early in the day Tuesday which made for one exhausted mommy and daddy! I should add, she is still doing all of these things (except nursing, we are finger feeding/syringe feeding her)!!
Tuesday morning after she had nursed for about at hour, after being super fussy and not wanting to latch for an hour, she spit up and cleared it out on her own. I sat up with her and noticed a faint pulse/twitch in her left arm. Being a NICU nurse, I was a little alarmed, so I called my post partum nurse to come in and see what I was seeing. It was a blessing because the doctor that was in the nursery happened to be a neurology resident completing his OB rotation. He came in and asked a few questions, and we thought it might be a reaction to reflux. Everything we talked about made sense to me. Better than seizures right?
A few hours later the pediatrician came in and assessed her and royally pissed her off. She handed her back to me, and I instantly noticed she was twitching her left arm and left foot. I pointed it out to her and she suggested we video it. She immediately took the video to the neuro resident who came in and assessed her again. She did it again after he pissed her off, so he went straight to his attending who wasted no time getting her admitted to the nicu. The good thing is, she was ALWAYS alert during these episodes. She even latched and nursed while she was having the last episode we saw, so I was encouraged by that fact. They took her away to the nursery and prepared to transport her to RNICU.
Side note…UAB RNICU is where I started my career as a nurse in 2007. It is my first home and the friends I made here will always be family. We have been been treated like nothing less. When my friend Candice came rolling out the well baby nursery with the transport isolate, the tears began. I was so happy to see her face. The RNICU staff and my fertility doctors are the sole reason I always knew I wanted to deliver my babies here. As hard as it is to understand right now, this was in God’s plan the whole time.
Cora has been through a lot since Wednesday morning, and she has been a trooper!! I will throw in a few details, but it’s a lot. I will also try to make it all make sense, but that’s not likely (i will probably use some medical terms that not everyone will understand)!
They loaded her up on seizure medication that morning. Placed a UVC because they had difficulty getting an IV. By this point, she was probably pretty dry so that wasn’t surprising. I’m actually very thankful she got the central line because they have had to draw so many labs, and they use the line for that! They followed that with a head ultrasound which was normal! She had a pretty large bruise on the back of her head from delivery that they have been a little concerned about, but it has not moved at this point. They also follow frequent blood counts, and hers has remained pretty steady which is good! They followed that with a 1 hour EEG to check for seizure activity. That did show a couple of small focal seizures. They then swept her off for an MRI. The MRI showed a small bleed on her right frontal lobe which is causing the minor twitches on the left side. It also showed an ischemic area in her basal ganglia that could have happened in utero or at birth (really no way to know). The neonatologist said the biggest concern with that area would be leg tightness. As of right now she’s moving these crazy long legs just fine. She did not have any cord issues at birth (nuchal or bandolier). Her apgars were 5 and 8, so she was quite stunned and took quite a bit of stimulating and suctioning, but she came around quickly. All of her lab work has been okay. A few very minor things here and there, but as of today everything has been normal. Of course she ended up under bili lights, more so because of the large bruise on the back of her head (increased risk). They should be turning those lights off tonight. She has also been on a continuous EEG since midnight last night that will run through tonight. It picked up a couple of minor seizures this morning, they did another loading dose of phenobarbital this afternoon and she hasn’t had anymore. Tonight they began her maintenance dose of phenobarb that she will eventually go home on. (Typed 8/3/17)
(Update 8-4-17 am) Last night was a low point of this roller coaster we are on. They did turn off her bili lights which was the LEAST of our worries but still good bc it went down! Overall, Cora had a great day yesterday! For her 9pm feed she was super alert and interactive with mommy and daddy. We were so happy!!! Then they gave her the first oral dose of phenobarb, 10 minutes later I went to turn her and she was absolutely lethargic. It made me very concerned and her daddy as well. We talked to the nurse who was also concerned and she called the doctor. Doctor told us they were actually planning to give her another small dose bc they had seen a trend on the eeg that looked like she may be going to have another seizure (she had not actually had one yet but they want to stop them before they happen obviously)! I felt sick bc she was already so knocked out. I began worrying about her breathing and the possibility of her needed respiratory support if they knocked her out even more. We talked to the fellow on our way out and she was not very encouraging about going home anytime soon. We both had somewhat of a meltdown when we went to shower and lay down to rest. We came back down to bring her milk around midnight. Praise Jesus at the site we saw!!! She was alert (sleepy alert) and syringe feeding! They DID NOT give the extra dose of medicine!!
People, PRAYER WORKS!! We prayed so hard in those couple of hours. Honestly, I found myself trusting but also pleading with God. I guess that’s possible.
I have never seen my husband so tired and worried. He is my absolute stronghold, so to see him so concerned breaks my heart. Being a nicu nurse is a blessing and a curse, but at least I have dealt with all kinds of babies before, I know more of what to expect. In this situation, him being an adult ICU nurse is definitely a curse!! He knows way to much on the other end of the spectrum. I have told hundreds of parents that babies are resilient, they bounce back. When it comes to your own, IT IS TERRIFYING!! Being on this side of the bed is absolutely the hardest thing we have ever experienced! Of course it’s hard not to let your mind wander to the worst case scenarios. I feel like we have kept each other strong. We have both had weak moments, but we lift each other up. I’m sure there will be many more moments especially as we enter parenthood!
Update 8-5-17 @ 1:00 am…Gonna be a quick update! NEED TO SLEEP!!
They removed the EEG around 1:00 yesterday afternoon! I couldn’t get my hands on my baby fast enough!! We cuddled A LOT today!! Daddy got even more cuddles!! She is doing well on her maintenance dose of phenobarb so far. She got to be treated like a normal well baby today even though she is still getting fluids through her central line. Those were cut in half last night because she nursed so well throughout the day! She is such a champion. She just had a blowout in her diaper, nursed pretty well, and is tucked in for the night. Well, she actually has the hiccups and is staring at me, so maybe there is not rest for the weary tonight. I WILL TAKE IT!! I am so happy with her progress!
We don’t know when we will go home for sure! We are so ready! Hopefully they will pull her line tomorrow. Then we will make sure she continues to eat well, keeps her temp up (hasn’t been a problem), and does well on her maintenance dose. I hope it’s not too long!
I have been working on this update for 3 days now. I keep getting distracted, we hit a road block, or there’s just so many updates. Oh yea, I’m exhausted, have trouble remembering to eat, usually pumping or feeding Cora, etc. I want to say I’m sorry for not posting something sooner. I have tried to keep up with texts, calls and messages but there’s just not enough time in the day. Thank you to everyone who has checked in and for all of the prayers we are receiving already!!
At this point, she will go home on seizure medication and follow-up with neurology at a future date. I don’t even remember what I started typing a few days ago, I just hope it makes a little sense!
We covet your prayers now and in the future!! Our baby girl has been quite the challenge since the beginning, but we know God’s plan is incredibly greater than our own!! God has already written her beautiful story!! I pray He gives her a humble heart and incredible voice to share it with the world! We adore her more than we could have ever imagined and can’t wait to get her home and share her with everyone! We may be a little protective in the beginning, so we ask that you understand. Okay, maybe we will be a lot protective for the rest of her life!!! We thank everyone for their congrats and sweet words on her arrival! It’s been a rollercoaster, but it’s our rollercoaster and God is sitting in the driver’s seat!
For now, we gracefully wait with hopeful hearts.
Mommy’s first time holding Cora Grace since Wednesday morning!
Daddy couldn’t wait to get his snuggles after the wait!!
Our sweet baby hooked up to and EEG monitor for 37 hours!! Longest hours of our lives!