Memory Lane 7/25/10

As we approach Sloane's 2nd birthday on Friday, I am all sentimental. Not only am I overcome with the fact that 2 years has gone by, but I am reflective on all that happened in these past 2 years. Last year, while we were in the throws of Laryngeal Cleft hell with a feeding tube, reflux, and constant aspiration. I remember noting in my head the days from July 15th thru September 10th. Those were the days from beginning to end that I/we were in the hospital. The first 5 were on bed rest before Sloane's arrival and the remaining 50+ were in the NICU. I remember thinking, last year, holy shit....that was a long time to be away from home. I had no understanding of life outside of the NICU, no awareness of weather and no tolerance for anything besides Sloane's health. Sloane was just shy of 2 months before she became our baby at home.

As I have said in earlier posts, I did email our circle of trust almost daily to keep them in the loop while we were in the NICU. When I started blogging, there was a suggestion to archive those emails into A Sip Of Heaven. The thought behind it was that our real time story in conjunction with the post (Are We There Yet) would give Laryngeal Cleft parents another parent's experience to bounce off of. I never did get around to creating the archive so I thought I would slide those very raw and naive emails into the current running blog.

Now, seems like a good time seeing as though Sloane's laryngeal cleft issues are at a standstill. There is no news on the next swallowing therapy appointment and we will not see Dr. Rahbar until next month. She is drinking an average amount of thickened liquids daily. There is 1 new developments though. On the reflux front: Sloane has not had any reflux meds for over a week. Our ped wanted to give it a try since getting the Zantac into her was like an episode of cage fighting. In the past 8 days, I have only seen catch your breath kind of reflux on 3 different occassions. Thrilling results!!

So let's take a step back in time. The below email is the 1st I sent out from the NICU on July 25th, 2010 at the very beginning of our journey when we didnt know why Sloane was not healthy.

 

hi everyone, thank you so much for all your care and concern. we are not ignoring you. there is no phone service verbally in our room. and to be honest we are completely focused on the drs. and nurses 24/7 so its hard to answer the texts and calls. we know that you all love us and want to help but right now its our job to focus on Sloane. i have bcc this email so that no one gets bombarded with emails from this update.

let me start from the beginning. friday night during a feeding Sloane turned dusky as they call it. she went into the nursery to which they said she was okay. this did not sit well with me and i couldnt get the sound i heard out of my mind. i heard it again in the am on saturday and we sent her to the nursery again for observations. the nurses poo-pooed me but i kept going. the ped. came again and agreed with me. the NICU team also agreed that something was wrong.

we were told that she was not coming home and staying in the NICU bc something was not right yesterday at 9am. once in the NICU she was given a chest xray that showed fluid in her right lung. the diagnosis being pnuemonia. she is on the 7 day antibiotic. once this was determined..the why is asked... how did this happen and back to the noise we go.

again i ranted and again and the nurses agreed that sloane was gurgling. she is unable to keep her oxygen levels up while eating or crying which leads to a suck/swallow/breath issue which could be the cause for the pnuemonia. she may have aspirated into her lungs while eating OR the fluid could be from her delivery which i have learned in the last 24 hours was sugar coated some in terms of her state and my state at the c-section. the delivery could have set her back some. 

nevertheless, she will get an OT eval to help her manage her suck/swallow/breathe isssue tomorrow. she will get a swallow test to see if there is a mechanical issue in her throat (maybe some lazy muscles). she is on oxygen for her decreased lung capacity bc of pnuemonia and also bc her oxygen level goes down when crying or eating. it appears she puts her tongue in the way of her airway. this eval will happen this week bc she will be here atleast for 7 days.

the other issue they are addressing is that miss sloane is ravenous. she does not stop sucking when eating. we are going to teach her to relax some....she is like her momma with food!

the team of doctors is wonderful. they round her each am and each pm and her nurse is AMAZING (thank god). we are learning new techniques to feed her bc she is feeding from a bottle not my breast so we can watch her feeding abilities. i am pumping though. my breast milk will help her vitals and her physically if this viral pnuemonia instead of baterial. my milk is coming in very slowly, but the drs. assure its bc of the stress, blood loss from the placental abruption and the crash c-section.

alan is amazing. i dont know what sloane or i would do without him. he is the best father ever!!!! he watches the feedings with the nurse while i pump. we are on a 3 hour schedule and sloane seems okay with it. she is peeing and pooping. which is a good sign.

the NICU is no joke. there is a no noise policy. no tvs and no phones. it is basically silent. we brought some magazines. i can stay each night as can alan but he is going to work this week so he can use his paternity leave when his girls get home. her room has a couch but the social worker said i can stay at the ronald mcdonald house if this bc uncomfy. its across the street. we didnt leave my mom alone while she was sick so i am certainly not leaving my infant. right now we are the only two who can care for her. no one else can be in the room if one of us isnt here. 

we are going home today to get clothes, books and some girly things for her room. its very sad bc some babies are here for months so their rooms look like bedrooms. we are just going to get a few things to make her happy for the next few days.

i am fine as is alan. i am taking my pain meds and eating too. no worries.

i think it is important to when we say prayers for Sloane to thank god that he was watching over us and didnt let us take her home. the team confers that it wouldnt have turned out well. i am so thankful for that. i have called father najim and he is coming here this week to see Sloane :)

we are keeping our sense of humor...things like"come on sloane burp like poppy charles" or we keep noticing similariities btw sloane and pop al...she is making funny little snorting sounds when she eats.

alan is calling daddy and linda to keep them up to date but right now the team tells us to give her 24 to 48 for the meds to work and see her improvements and as that time goes we can address her tongue sucking swallowing issues..she needs to relax when eating...LOL the OT and ENT team are ped specialists and we will move on to that when the time comes.

ej, i will send you an email with everyone's address and maybe kristen could share the shutterfly page you made of sloane with them if you dont mind.

carol, please read this to daddy as he doesnt have email. some of his questions may get answered when he hears it in print.

i can tell you that Sloane is PERFECT!! she is the cutest thing!! we keep laughing at how at 6 1/2 lbs she has us wrapped around her finger. she just wants to be held and we love it!! alan is holding her right now.

i know it would be easier to talk verbally but right now i cant. i am afraid i will just cry as i did with chuck yesterday and that is helping no one. we need to be clear minded and strong for her. that may change tomorrow but right now it is what it is.

i ask you to not fwd this email to anyone. we sent it to everyone we wanted to have it. there is a level of privacy in this for us. i am sure you have questions as do we but the team has asked us not to go on the internet and let them progress step by step. i can say she is a little better today.

im sure as the week goes on i will think of things that need to get done at our house..so ladies, get ready!! i havent been there for 10 days and have no idea what is what. ill check it out today and let you know.

we love you all and cant wait to take Sloane home to see you all! i know you must miss her bc she is the cutest blueberry EVER!!!! just think...alan was already a germaphob..god help us when she gets home...

xo Sloane's mommy and daddy