Memory Lane 8/8/2010

Re-reading all of these emails from our time in the NICU has been trying on my heart at times. Some of my close friends have said the same. This morning I was chatting with a very old and dear friend who called that part of journey a "very dark" time and it truly was. Although I think the tone of my emails is upbeat, let me be clear I was shell-shocked. I know I was and my circle of trust certainly wouldn't disagree I am sure of that. As I re-read, I notice that I did consciencelessly understand how sick Sloane was at the time and what her Laryngeal Cleft was, but emotionally I do not think I ever absorbed it at all. To have a child that tiny not well truly fucks you up!

We have friends who just had triplets. 3 boys!! Although they were born at 30 weeks, all 3 of them were over 3 pounds and have required no medical interventions. A MIRACLE! They are all residing in the NICU right now. I think about their mom every morning while I am in the shower. I remember those days and no matter how wonderful our experience was....the time was isolating, scary, heart wrenching and downright surreal. I remember the sun blazing outside but I would be in a sweatshirt. I remember not wanting to leave for 30 mins to go downstairs to the cafeteria because I was afraid something would happen or that Sloane would cry and I wouldn't be there. I remember being utterly embarrassed when my friends convinced me to grab a quick outdoor lunch and we saw someone who I knew...and I thought "oh my god, I am a horrible mom. my child is in the hospital and I am out eating with my friends" I remember that my hubby and I would get dinner at the closest restaurant to the hospital there was and the first words I would say to the waitress were "please be quick, our daughter is in the hospital. I need to get done fast". I remember when the geneticist walked into Sloane's room. I hated her the moment I saw her. She would be the person who had the potential to tell me something else was wrong with my child. I would cringe at the sight of her and want to vomit when I heard her voice on the phone. I would have to say she (the geneticist stayed in close contact with us until Sloane was 6 months old..not to my liking) and Early Intervention were the hardest players for me to emotionally handle.  When I take time to remember these memories because I have chosen to bury some very deep....I do think "dark" is a very accurate word for that time in our lives.

BACK TO MEMORY LANE......8/8/2010

Sloane was 19 days old

today was sloane's due date so she is officially 40 weeks old!! a few pp. have emailed me to get an update as i havent sent any in a few days. sloane is doing well. she is still off the oxygen and this am on rounds, the drs. concurred that it is unlikely she will need it again. we are so hoping for that!

our blueberry has been gaining weight and is up to 6 12! which is wonderful!!! her face has gotten fuller we have been told by the grandparents and there may be the beginning of a double chin!!! bc alan and i are here all the time i dont think we see the changes as much as others do.

i have been getting my training on inserting the nasal feeding tube thru her nostril down her throat...i can tell you this is not what you want to do to your infant but the nurses tell me before i leave her itll be common practice for alan and i...im not to sure about that!! they have a checklist of all the things alan and i need to be proficient in bf we can get discharged.

sloane is quite feisty...yesterday she tore out her feeding tube some and wiggled herself out of her swaddle...she makes the nurses giggle!!!!! she is considered a BIG girl around here bc she was full term.

this week we will be working on fattening sloane up and keeping her happy. hopefully, there will be some more tubbies!! we also need to cut her nails which you would think would be a synch compared to what sloane has been through in the last 19 days but it isnt..its scary a bit...LOL

she will not have another swallow test until next week. at that point, we should be able to see if there has been improvement and if she is going to be able to drink thickened liquids. if the edema and acid reflux have gotten better as well as sloane's floppy airway has strengthened bc she is older then there is a chance. if not, she will come home on the feeding tube and we will have some therapies over the next months to help sloane overcome her laryngeal cleft while swallowing.

every day i am thankful to have sloane as healthy as we do and to be fortunate as we are. i made a nicu friend next door whose son was born at 26 weeks and 1lb 12oz. they have been here for 3 months. her son is adorable but he isnt going home anytime soon which breaks my heart. and yesterday they took a 23 weeker in....who was 1 lb 2 oz!!! this little girl is so tiny...i cant believe my eyes.

one of our favorite nurses told me on friday that she lost her second pregnancy at 34 weeks bc of a fetal/maternal hemorage for no reason. it was a little girl who was 5 lbs 7 oz. i cant even imagine. and then there are the babies who cant go home but go into foster care bc of poor parenting or no money/housing or the babies here who never have visitors!!!!

so this week we will ask god to continue to make her stronger and keep her healthy :) we also we ask god to give her mommy and daddy the strength and patience that they need to handle all the nursing responsibilities they will have once they bring her home.

xo sloane's mommy and daddy