Hypoxic Ischemic Encephalopathy (HIE)

Hypoxic Ischemic Encephalopathy...ever heard of it? Yah, I work a job in which I read medical records ALL day and I had never heard of it either until February 10, 2011 when my baby girl was born with that scary diagnosis. (It has come up twice since Lily was born actually, and it helps that I have so much background knowledge on the subject now).

Let me backtrack here...If you are one of my few blog followers/readers, you know that I wrote a strongly worded and kind of lengthy political rant- that steered into religious territory more than intended- on Sunday morning. Given that my blog is still set to public,  I was too uncomfortable leaving up and deleted by the end of the day. I blame the Chic-fil-A controversy...I didnt say a peep about my thoughts on facebook, and I sort of wish I did.

Anyway, I was feeling guilty that I dont get too personal on my blog and share more than just photos and Lily Kate stories, I thought I would share a story that is personal, and that I am also happy to share. I so wish someone had told me about HIE before Lily was born, so that the three days after her birth might not have been so traumatic and fear-ridden for me.

Here is a link to Lily's birth story, as written by a PR major at UF who asked if she could record our story and publish it on the HIE website to offer support to other families who dealt with or are currently dealing with HIE and to educate parents on this condition. Lily made such a miraculous recovery while in the NICU at Shands in Gainesville, that we were MORE than happy to speak with this "reporter" of sorts and give consent for Lilys story to be on the website. The website has actually changed since Lily's story was originally  posted and it is hard to find because HIE doesnt get searched for often enough for this particular website to come up as a suggestion. So if you didnt read this story right after Lilys birth and you would like to hear what happened and learn about HIE, I encourage you to click on this link. (Side note- googling "Hypoxic Ischemic Encephalopathy Shands brings Lily Kate's story up right at the top. Look at my little rockstar!)

Part of this story makes me laugh and part makes me cry every time I read it. The laugh part is when the girl quotes Clint to say that "Lily's cry will never be a burden to us". HAHA. For the record, my child has a chorus of cries she uses and they are in fact a burden at times, lol. The cry part doesnt require explanation, other than that I truly thought I had a stillborn baby and it was the worst possible feeling a new parent could experience.When Lily came out with a collapsed left lung, leak in would her right lung, and would not draw breaths after the lung was re-inflated...I looked up and checked to make sure her tiny tummy was moving up and down. It wasnt. Clint is so lucky he doesnt have that image in his mind of Lily laying so still and quiet in the OR, like I do. It was explained to us that babies in her condition were not expected to cry and that we shouldnt worry about that. I knew about meconium aspiration and how those babies are not stimulated to cry until after the meconium is suctioned out of the baby's mouth. I tried not to worry as much. Missing from this article is also that the doctors told me nothing of Lilys diagnosis or prognosis while I was being sewn up from my c-section and eventually I was so hysterical I needed sedatives. Luckily, my friend Beth works as a nurse in L & D and she was literally there for everything. When I woke up I asked for her and she came.While she didnt know how Lily was doing, it was such a blessing to have her there. She is an incredible nurse and we were lucky to have her (newly pregnant herself!!!!) in the OR when Brinley came out in perfect health last month.

OK, heres the link to Lily's birth story. It makes me so incredibly thankful for my smart, sassy, silly, affectionate, energetic little 20 month old who went through so much pain as a baby, but you would never know that now. Maybe I'm biased, but she doesnt exhibit any developmental delays and seems advanced with her vocabulary and skill set for a child of her age...how can I not praise God for that every day?!

http://hopefn3.org/share-your-story/lilys-story/

Three more things I want to quickly share before I close this post. (SN: waterworks are now in full swing because I just re-read it....ahhh, I get SO emotional still)

1) TMH did not have a cooling bed in their NICU until Lily and a second baby were born around Fenruary 2011 with HIE and the hospital was immediately able to prove medical need in a grant for one cooling bed so babies can now start cooling therapy before they are transferred to Shands. I havent mentioned that I was told after Lily stabilized at TMH that "There is a chance your baby could severely decompensate on the trip to Shands. The trip will be very hard on her." Weather conditions were not clear enough for a life flight so we had to wait for the Shands Ambulance with a cooling bed to get to TMH (about an hour and a half) before Lily could begin her treatment to prevent further brain damage. Through tears I asked the doctor, "So you mean she could die on the way to Shands?" and the doctor said "Yes." Bring on the sedatives.

2) One of my very best friends Maria is a Nurse Practitioner at Miami Childrens Hospital, currently specializing in neurological/genetic disorders in children. (She didnt do the neuro/genetics stuff at the time Lily was born). She texted me a few months ago asking for the link to Lily's birth story because she loves telling her coworkers and even patients (I think?) about what success Lily had a Shands. We are both proud to be gator girls and UF alums. :) It makes me feel GREAT for Lilys story to be used to encourage parents of HIE babies that the odds are so good for babies who receive cooling therapy at Shands or other participating hospitals. Dr.Weiss at Shands developed this cooling protocol in 2004. It was only 7 years old when my baby got to take advantage of it, wow, so grateful for this amazing doctor.

3) I will forever appreciate my friends who sat with me at TMH during the 3 days I was there healing from my c-section and Clint and Lily were at Shands. You guys know who you are. Hands down, those were the worst 3 days of my life and Im lucky to have friends that were there for me to distract me from the fear of the unknown. About 6 of my girlfriends (and Clint's best friend Steve) came to visit after both of my girls were born.You guys get a gold star in my book! :)

Valentines Day night (technically 3 am on Feb 15th) we got to hold Lily for the first time after her MRI....amazing and so long overdue. This picture is really special to me because that moment meant more than I can explain. 4.5 days is way too long to wait to hold and properly snuggle the little life you created.

On February 15th, the doctors sat us down with the results of the MRI. 3 spots of damage, one that controls your right arm and two small ones that are not of concern. We are the luckiest parents in the world. 1 year of preventive Occupational Therapy and 10 months of Phenobarb to prevent seizures later...we have the most perfect 20 month old girl I could ever imagine!!

Lily at TMH waiting to be transferred to Shands. They let me hold her hand.

 

Lily receiving cooling therapy at Shands. They lower the body just a few degrees to a specific temperature. The doctors said that light touch is actually painful, but hard pressure such as squeezing a hand is OK. So glad the cooling is only 72 hours, doesnt this baby look like she needs a swaddle and a cuddle from mama??

 

 

 

I just reread this post, and thought of a PSA I'd like to make to anyone out there in the medical field...

 

PSA: If you are a nurse (specifically a family care nurse who treats post partum women), please take TWO MINUTES to review a patient's chart BEFORE entering their hospital room.Or, maybe the floor could spare 5 minutes to brief the nurses on the shift that there is a mom requiring a little more sensitivity than the average recovering mom. Not to mention that trying to promote breastfeeding by pumping when you dont have your baby with you is a disaster and extremely painful (or at least it was for me). I found it very upsetting when a few of my nurses at TMH came in and asked me where my baby was. Really? How many times do I have to explain that she almost didnt make it and that things are touch and go right now as she receives cooling therapy for her encephalopathy/brain damage at Shands. The answer was 3. I think I had to explain to three separate nurses what happened through my tears and I

would have appreciated nurses coming in and being just a little more aware of and sensitive to the HIE situation. I am so thankful my friend Beth was there- during, after, and the next day when her and Tien slid a card and $50 worth of food giftcards for our 2 weeks in Gainesville. Nurse Beth really is awesome! September 10th was extra special because we got to take a picture with Beth, a healthy chunky Brinley Claire AND, even though you cant seem him,  baby MADDOX is in this photo too! A baby that is also a miracle and has a special place in my heart already.

 

9/10/12

Brinley Claire, fresh out of the oven. Beth checked on us and we took a quick photo.

 

Beth and Tien back in late June at a going away party for our friends Mike and Erin Drury. Beth was pregnant, but only about 10 weeks I think so no one knew yet. I cant wait to meet this little guy due February 7th!