Memory Lane 8/10/10

BACK TO MEMORY LANE 8/10/10

(we had our diagnosis of a laryngeal cleft, were waiting for another swallow study to assess it after Sloane was on reflux meds, and we were starting discussions as to what kind of feeding tube sloane would come home with: a nasal feeding tube or a surgically implanted stomach one)

hi all, i have found a bit of a groove with sloane. our days are so busy. she feeds every 4 hours which sounds spread out except i pump 25 mins bf feed, do a check up w/ nurse and then start the feeding tube feed which lasts 1 hour and 20 minutes (we have to hold her upright while this happens bc of acid reflux) the process takes more than 2 hours and then starts again...we are busy girls!! 

i wont say it isnt exhausting and im not getting much milk which makes the whole process discouraging. breast milk is what sloane needs right now bc it digests faster and she needs the antibodies from me to help her with all her procedures. i just called the ob for a prescipt. to help w/ milk production. the lactation p. here are baffled but also blame it on PCOS, placenta abruption, crash c-section, blood loss, stress, lack of sleep and the fact that sloane is not nippling and i am just pumping......not sure why they are baffled that seems like a lot to me. LOL

i have been going home to sleep some nights when i like the nurse. its hard to do the guilt but i am so much better with her during the day when i get 5 hours straight through. the nurses push you to go home bc they say when we come home we wont have the luxury. alan is wonderful, he stays some nights so i can go home w/o worrying. its been working out that i go home around 10/11/12pm and come back for 5:30am to make the 6am feeding. some nights if alan works in smithfld, he is here early enough to do the 6pm feeding which is nice:) he is wonderful with her. its funny, he is not afraid at all but i am at times. and as far as the changing of diapers and swaddling...he is much better but we knew that would happen w/ mr. clean.

sloane has caught on to my arms. she knows them and only wants them. its so funny..she cries, i try to settle her and she wont have it until she is in my arms and then she just smirks and smiles...LOL she is a little shit already....i love cuddling with her ALL the time. we are trapped in a 10x10 room so my arms is where its at!!

today, was a hard day bc the 23 weeker that came in coded a few times and i dont think she is going to make it by the look of the room right now as i type. she is across the hallway from me. the scene is not something i care not to see. there are so many drs. working on her. i feel so badly for her parents. everyone here looks at each other the same way. im sad and thankful at the same time. sloane is healthier than lots of babies here but she is still in the NICU which is hard to accept..my baby is sick enough for a lenghty stay in the NICU on one hand and healthy enough to come home someday. i will never look at life the same after this experience for a lot of reasons. 

she weighed in at 7lbs 1 oz last night. very exciting!! she is big girl. another big girl came in today who is 2 months and her mom has been inserting the nasal feeding tube so im going to be chatting with her about that tmrw. its easy for the nurses to say its easy. i want to hear what a mom has to say about the process. i am very worried about it.

i miss you all. i have been trying to get outside once a day, again if i trust the nurse. its hard bc i need to like the nurse, i need sloane to be okay and i need the energy to walk out. we have the bouncy seat here so we have been trying that out. and bc she is big girl ive added some stimulation to her room. the preemies cant have that so we are lucky..we play music now. 

i started getting some returns done bc the seasonal clothes she got wont work for her by the time she comes home. its been fun to shop for her :) i hadnt done that. carol has been working on "pinking up" her unisex room at home bc i dont have the time now and i know when we get home i wont either thats for sure. 

depending on the swallow study results next week....the plan is that when we come home we will have visiting nurses, ot and speech at the house so we will be busy...

i wish one of you was a NICU nurse...LOL it would make me feel so much better to have someone in the family to help me with managing it all. 

thank you for the emails, texts, food and prayers. i know you all keep offering to do stuff for us but everything is getting done..i will ask when i need it. god knows i am a bit lost most days actually very lost. having a newborn was shocking enough (i thought i was prepared) but being here has put a new spin on motherhood for me. 

alan is all about germs as we all know so he has no tolerance for anyone touching sloane right now. we cant afford for sloane to get any other kind of illness. thankfully we are in environment that doesnt exactly welcome guests so it makes it easier on alan and i to protect sloane. i know our parents are dying to hold her, but right now it isnt an option. i cant imagine what the germ situation is going to be when we come home. 

can you believe on thursday..itll be one month since ive been home. im like an inmate who gets released from jail and doesnt know how to assimilate in the real world. when i am outside i am wandering around. i dont even know what tv is anymore...LOL thank god for dvr; itll save us when we are doing night feedings and need something to watch.

xo me

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

Memory Lane 8/4/2010

hi...i havent had internet in the room since we arrived bc the apple is having an issue connecting to the wifi, but today the hospital gave me a loaner. :) so now bc i dont have to leave sloane and go to the family center i thought id not only send you the important medical emails, but also the fun emails!  they are real sticklers here about no phone calls in the room, no food in the room and no noise but its all for just cause.

i am thankful to be here with the nurses. they are awesome. i was so worried about giving her her first bath and whats better than having a nurse assist you. 

she is off oxygen right now and we hope for forever. she had a steroid shot after the scope on monday to help with any swelling that occurred during the scope and it did help bc sloane hasnt needed oxygen. just shows us how inflamed her throat is...poor little peanut! she could need oxygen again if it wears off or if she refluxes more but for now its wonderful!! the good news is we now know that she doesnt need the oxygen for any damage to her lungs but for inflammation in her throat. hopefully time on the meds and no more refluxing will hlep that. she is up to her birth weight too!! they tell me their top job here is to make babies plump!!!

we were going to go to dinner last night for anniversary but as soon as our jellybean got wind of that she put on her cranky pants and made sure we didnt leave. so it was a big welcome to parenthood for us....we were thinking bacaro, al forno or nouvo for dinner bf she got fussy and that quickly became a take out salad from applebees at 10pm...LOL 

the geneticists came to see us bc sloane's birth defect is so rare. they need to be sure that her laryngeal cleft is not part of a bigger syndrome. we had to go through all sorts of questions and observations of sloane to see if she presented any other odd qualities. not fun! and what do we find out...that sloane is all her daddy in the looks department....right down to the wider set apart eyes "that models have" according to the geneticists..good god thats all we need daddy and daughter hitting the runway.....LOL what does she has of her momma who carried her...thumbs!! she has my double jointed thumbs as of right now and maybe my lips!! LOL more to come on that....

isnt it hard to believe sloane has only been here for 15 days and she turned our lives and hearts upside down...........xo

Memory Lane 8/2/10

Back to Memory Lane...the day we got our official diagnosis of a Laryngeal Cleft. Sloane 12 days old. 

Today was a good day. Sloane had her bronc-scope and she did great. she had to have 2 IVs, lots of blood taken and did not eat for almost 12 hours, was put under and was a TOUGH COOKIE!! i am so proud to be her mommy.

the dr. was pleasantly surprised that Sloane's laryngeal cleft is a suspect level one as were mommy and daddy bc what she aspirated on the swallow test looked significant so we were expecting worse. she DOES have a deep groove in her throat that did not fuse during womb growth. as she is swallowing liquids they are going through the groove down her windpipe into her lungs. a level one is good news. she may not need surgery. all other areas of her throat look good. she does have what they call a floppy airway and that will strengthen with time (that is a result of her being a 37 weeker)  her acid reflux and swelling are very bad and she was put on an additional 2 more meds to address them (so much for having the breast feed baby without any toxins....as my brother says: we make plans and GOD laughs)

the protocol will be the same we HOPE. sloane and i will be staying in the NICU for the next few weeks. we will work on her acid reflux, swelling and need for oxygen. we are hoping her lungs clear from the aspirations w/in that time and she will no longer need oxygen. in about 2 weeks, she will have another swallow study to see if she has improved. if so, we will try to manage some thickened liquid input with therapy. if not, we will continue with the feeding tube.  

the/our goal is to get sloane home. we HAVE NOT met with the NICU team yet (hoping to do so tonight) so there could be changes by tomorrow. but i think its safe to say that we will be able to take our blueberry home in a month. most likely with a feeding tube. she will have that for the next 2 to 4 months. the tube in conjunction with therapy to help her manage her slit/deep groove in her throat to swallow without aspirating. this deep groove WILL NOT close up over time. sloane will need to over compensate will eating to not aspirate.  they will periodically retest her to see if there is improvement. surgery MAY be an option in the future if this does not work.

this is all good news. to know that sloane has no other issues in her throat at this time helps us to accept the diagnosis and move forward. it is funny, how quickly your mind adjusts. this is the norm to us now. our baby is on a feeding tube and thats that. we hope in 6 months to a year, this will all be a distant memory but in the meantime sloane and her care are our life.

she is coming out of anesthesia as i type and tolerated better than i could have. this child is resilient!! we are looking forward to a better day tomorrow :)

thank you for all the prayers! we are very thankful today. we hope that Sloane gets better soon so she can have some visits.

xo sloane's mommy and daddy

Memory Lane 7/29/2010

The potty training thing is a new world for me. I have known for about 2 months that Sloane was ready to be trained but in classic fashion for us...I am dragging my feet. At first, it was an emotional problem for me because I just didnt want her to be a big girl. Next, it was a physical problem for me because we truly are never home. Now, it is mental problem because I am unsure of how I want to go about the potty training issue. Will I take the interval approach OR will I let Sloane go diaper free in the house for a few days?? Everyone has their opinions even our ped. 


So we have been plopping on our toilet here and there for the last month. There has been no "training" involved. Everyone is in on the action: "the machine" (our babysitter), nonni, mammie and ti-ti. We have Elmo books, Elmo dvds, and an Elmo sticker chart to promote potty training. Some days her bottom hits the seat there is a drip, drip, drip and other days there is silence. Well, yesterday I watched intently as Sloane played and I knew it was time. I plopped Sloane on the toilet and she did poop with no formal training at all. Very exciting!  

Back to Memory Lane 7/29/2010....

 Sloane was 9 days old. 

hi...okay so alan and i had some inside info last night and knew what the doctors were looking for today during sloane's scope which was done bedside and she tolerated like the strong woman she is.

it appears that sloane was born with a rare 1 in 20,000 birth defect called laryngeal cleft (lizzie im sure the sound of cleft makes you stop bc of what i said about sloane's last sonogram while i was in the hospital....ODD) im sure you will all start researching it. we did last night.

http://www.childrenshospital.org/az/Site1137/mainpageS1137P0.html

on monday, sloane will be put under anesthesia and brought to the OR for an more intensive scope to confirm the diagnosis as well as its severity. they will also look to see if there are any other issues. there are 4 grades to laryngeal cleft. after monday's scope we will have a plan of action of how to fix this. not much can happen right now or for months bc it was proven today that sloane has horrible acid reflux (maybe inherited from poppa charles...ha). her insides are terribly swollen. they have started her on meds immediately. obviously, she cant have surgery and then heal with acid reflux coming up and burning the area

depending on the grade...she will first come home with a feeding tube and have to heal the acid reflux irritation bf any treatment can happen. if its a grade 1 then she can try some therapy above that grade will mean surgery in later months. not only do we need to fix the reflux we need, the plumper the baby the better. she is is back up to 6 lbs!! YEAH!! they have done this surgery on babies at 2 or 3 months of age. the dr. was very nice and it would be done endoscopy. im sure we would get other opinions.

the dr said this is all speculation and can not be confirmed until monday. so please keep to yourselves until we know for sure.

sloane had a GREAT day today. she was awake lots and we sang and read books and had a sponge bath!! so fun!! during the bath she sneezed out a boogie that an adult would have!! it was crazy!! she is very nasally from the oxygen tubes! i wish you all could spend time with her bc she is just amazing!!

we are anxious for monday to have a diagnosis and to know when our baby can come home. its clear to us both that she will not be coming home anytime soon.

please pray until monday that we get and answer and can move forward. i dont think ill have any updates until then

xo, sloane's mommy and daddy

Memory Lane 7/28/10

Sloane's 2nd birthday was a complete success! Her croup was much better in time for her big bash on Sunday. As I was hanging the Chinese lanterns, I wondered if all my efforts would be lost on my 2 year old. I had been planning, preparing and making lists for months. All was not lost though because Sloane loved it all. We had the 3 top things in her world....bubbles, Dels, and Elmo!! She was all smiles all day!! 

On Monday, Sloane had her 2 year old doctor's appointment. Our ped was thrilled with Sloane's development. She grew 7 1/2 inches in the last year! Yup!! Daddy Long Legs!! I swear that 7 inches of the 7 1/2 are in her legs. And she gained 8 pounds!! Great Growth!! 

It was a great day to have a drs. appointment because we were able to discuss the recent episode of croup. After putting our heads together and chatting, our ped isnt convinced that this last episode of wheeze and hoarseness in Sloane's upper airway was croup. Because since stopping Sloane's reflux meds we have seen her significantly reflux in front of us, the thought is that PERHAPS Sloane is silent refluxing frequently. That silent reflux maybe causing her airway to be irritated and swollen. A swollen and irritated airway is more narrow, therefore causing a wheeze and hoarse sound. The questions now are should we put Sloane back on reflux meds OR should we wait to see if Dr. Rahbar sees any evidence of reflux in her airway when he scopes her next month? Does Sloane have a more narrow airway as a baseline than other toddlers because of her abnormal development and the laryngeal cleft and that is why she has a more frequent low grade wheeze sound at times? 

Back to Memory Lane 

7/28/10 Sloane Jacqueline was 8 days old!

hi everyone, we had our swallow study today and although it did not give us the answers that we were hoping to hear it did rule out that Sloane is NOT having an issue coordinating her suck/swallow and breathe.

the ENT will be seeing us tomorrow bc at this point we can be sure that our blueberry has an abnormality/birth defect in her throat. something is not connected properly way up high bc she is aspirating into her lungs as soon as she swallows. i would have to 80% of the food goes into her belly via the esophagus and 20% went directly into her lungs. we will have a scope tomorrow so the ENTs can give us a diagnosis of why. there can be a connection issue, a small hole or a flap issue. these are purely speculation right now. we are trying to stay off the internet as tomorrow is almost here.

as for treatment, who knows, bc we wont know until we know what it is. some options repair in time meaning sloane would be on feeding tube until that happens or somethings can be repaired surgically in time. she may be too fragile for that right now. in the meantime, she continues to eat safely! they tell me whatever it is, she will come home :) and they will make it so that she is safe and make al of us comfy feeding her.

today confirmed for me that there is a GOD. i cant not believe that i was feeding sloane all those days and filling her lungs. thank GOD, everyone, that she did not come home and continue to eat.

she has been gaining weight so we are so happy....and they have upped her food intake at each feeding and she seems happier..she is a piglet!

i know that this is scary and not what we were hoping for but sloane is magical and this whatever it is will be addressed the best way we can. we are trying to be realistic and optimistic and we ask you to be the same! sloane's arrival in the world has not been what we envisioned right back to her start off in november until this moment and that just means she is EXTRA SPECIAL!!!!

my hope is that by saturday we will have an answer and she will have made some progress with the pneumonia. we hope when that happens that you can start to see her for a short visit.

as for now, id like to start decorating my blueberry's room..turning it from unisex to girly!!! so it is ready for her arrival.

and yes, im eating and sleeping some. poppy charles is here daily to tune me up and remind me that i am a mother now! no woes!

xo sloane's mommy and daddy

Memory Lane 7/27/10

Today, my baby is 2! I did a mental walked down memory lane all night last night. I was remembering the crucial hours of 10pm to 1:58am! The chain of events played thru my mind from the moment I was induced thru my placental abruption to the second I heard Sloane cry for the first time. My delivery was not at all what they prepare you for. It was a bit scary at times and I am thankful I was in the hospital on bed rest already. 


I was able to think about all the tenuous moments during my delivery because I was wide awake last night during those hours. Why? because Sloane has croup again! Don't ask, I have no idea how. We started the steroids last night but she still uncomfy throughout the night so I kicked my hubby to the curb and let her sleep with me. Before I go any further, I want to say that i have NO IDEA how families sleep with their children in bed with them. I did not sleep a wink last night. If I wasn't worried about Sloane falling out of the bed, I had a foot kicking me OR I was staring at her breaths. Not a wink!! There was something extra special about having her in bed with me on the night of her birthday. I was in awe of in exactly 2 years to the minute....how she has grown. It is incredible!


Her croup was better today, but we still took her to the ped for a check up. I was completely preoccupied with it today. I couldnt focus on anything other than the state of her croup. This happens to me every time she is sick. I paralyzed by the symptoms and the thoughts of what they could develop into. Sloane seemed a bit better tonight. She was well enough to devour the nose and eyes of yet another Elmo cake! We had a small gathering tonight to celebrate her real birthday. The hope is that by Sunday she will be 100% so she can enjoy her big bash!!


Back to Memory Lane......Email from 7/27/10. Sloane was one week old. 

hi...

we had our upper GI test this am. it was quite the scene and again i say thank god i have alan. we watched real time on tvs and saw what is happening inside my blueberries throat. it showed that sloane doesnt have an anatomical improper connection btw her windpipe and esophagus. which is good news bc if she did she would have needed surgery.

what it did show was that sloane is aspirating food/liquid into her lungs. so tomorrow we are having a swallow study. in preterm babies this is common although she is not a premmie she was early. anyhow, the swallow study will be an xray type and we will be able to see how different liquids are swallowed and if changing the thickness of a liquid can help her and also some speech or ot therapy to teach her how to swallow correctly..she has the suck down perfectly!! little piggie!! 

after we get those results, we are moving on to an ENT study hopefully on thursday. they are going to probe down her throat and see if there is an under-development of her upper airway..vocal cords, larynx, ???  which would be more concerning.

the team switched today..go figure. they switch monthly and we hit the turning point. the new dr. is very nice and i have to say both alan and i feel that we are starting to get some answers. we are hopeful that in weeks rather than months this issue can be resolved. once we have a diagnosis, we can move forward and get this baby home!!

so sloane decided to stay up all night last night!! thank god alan stayed with me and the nurse was amazing bc we did shifts!! she may have her days and nights confused..poor blueberry!! bc today she has slept all day too. i dont care though. this poor baby has been poked and prodded for days. long gone are my worries of giving her a shot...this baby has had more things done to her since saturday than some kids have done in years so im letting her sleep.

bc she hopefully isnt aspirating anymore into her lungs (there is still a chance even with the tube of food going directly into her belly that she has reflux and it aspirating on the burps on the way up..they will check that out tomorrow too)..the pneumonia should start to improve as well as her lung capacity. we are hoping to see improvement by friday. 

i realize this is alot of info and if you dont want to get update..let me know. its just easier this way bc we know you all are worried and love us to get everyone on the same page. alan is working tmw until the swallow study and we will take her to hasbro w/ the team together.

i am starting to become more comfy in my new surroundings. i think i may have made a reputation for myself...lol..in terms of advocating for sloane...oh well!! its my job!!

until the swallow test tomorrow afternoon

love, sloane's mommy and daddy (as we are known and forever be known) 

Memory Lane 7/26/10

Today I realized that you need a freaking college degree to put a sippy cup back together! Dear Lord!! It doesnt help that we have about 10 different kinds here. I spent 15 minutes figuring out which straw went with which cup and how the mechanisms went back into place. I did decide after this process to get rid of the cups that were no longer in rotation either because their flow was too slow for the thickened liquids or because Sloane was into that one. She certainly has her favorites cups and her favorites drinks. 


Right now, DEL'S is all she wants to drink. She LOVES it!! We try to limit this treat to a couple of times a week (can we say sugar) but Sloane will ask for it daily!! And then she will sit quiet as a mouse with a spoon dishing it into her mouth. She never misses a DEL'S logo anywhere she sees one and the says "I waann Delsh!" It honestly is hysterical! Needless to say, we are having DEL'S at her party this weekend!! 


2 years ago, I would have never imagined that Sloane would be able to drink out of a cup or be able to decide what she would like to drink. I couldn't see beyond the laryngeal cleft aspirations, feeding tube and the allowed sip here or there. It was amazing to watch her suck down 8 ounces of thickened water last night with dinner like it was nothing!! 

Back to memory lane! Here is the email sent on 7/26/10 from the NICU. Sloane was 6 days old. 

hi, although we dont have any answers today about sloane, we do have a plan in place. as of right now, sloane will no longer be eating through her mouth. the drs. are afraid that she is still aspirating fluids bc her xray today did not sure as much improvement as they were hoping for. she is being feed high calorie food by ivs and may be given a NG tube. she seems more settled now and certainly feeding times are less stressful. 

i rounded this am with about 20 drs and staff members and they decided the feeding choices as well as the next test. we also have a wonderful OT eval which concluded that sloane has great bodily functions aside from those of her upper airway.  tomorrow, Sloane will have a die contrast test of her esophagus to see if there is any type of anatomy issue with her windpipe and esophagus connection. if this test doesnt show anything, sloane will be having a swallow test to see if she is having trouble coordinating her swallow muscles and breathing. those are the 2 top tests being done, that i feel at this point need to be discussed. both have solutions and all of the potential issues presented to me today have solutions THANK GOD! 

i think you will all be relieved to hear that i finally cried out for help (literally) and had to call my dad & ronda to come stay with me. i was able to express some things out loud. which only means i may be able to verbally discuss this rationally with all of you soon.

sloane had a good afternoon and as per usual perked up when her daddy got there so they could do their whole flirting skit!! its the cutest thing. she doesnt rouse for her momma but when the "baby whisperer" shows up,...she is all about staring at him and smirking :)

im sure or i hope there will be more to come tomorrow..keep praying that we get some answers..xo

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

Belly Button #2

Sloane has started building her vocabulary all on her own. Leave it to my child. Apparently, I am not doing that good of a job and she has taken it on herself. For the past few days, she has wanted me to tell her the name of everything. For example, her tiny finger points to my earring and she says "what yat (that)?" And I say "an earring" and she says "oh" and we move on to the next object. I think we labeled at the very least 25 things throughout the day. She is picking up words at a rapid speed. Considering that my hubby and I have mouths like truck drivers, there is a HOLD on all inappropriate words. We are polishing up on our spelling skills! It is hysterical. LOL

I am unclear on how to label her mickey button site. Sloane points to it every time she has a diaper change and asks "what's this?" I stumble sometimes, I distract her sometimes and other times I say that is your special mark. I have no clue what to say. It's a conversation between my hubby and I that hasn't happened yet. I don't want to gloss it over. I want Sloane to know about her mickey button as she grows. It is part of her story and always will be.

The site looks amazing! I still think it looks like a 2nd belly button and I may just be right. The aunties had Sloane the other day and her little friend was there. He saw Sloane's belly and asked his auntie why she has 2 belly buttons. Sloane's little friend is 4...out of the mouths of babes! He confirmed it. The mickey button site does, in fact, look like a 2nd belly button.

As for Operation Fluids, all is going well. We are seeing Dr. Rahbar next month for a follow-up and we should be scheduled for a swallowing therapy appointment within the next month. Note to self: I need to call Sheila at Children's Hospital and check on this.

Sloane is on 8 1/2 ounces of liquid to one packet of Simply Thick. I have moved at a pace slower than a snail on thinning out Sloane's liquids (sorry, mammie). I have been on such a high with the mickey button going GONZO that I let the liquids slide a bit. Sloane is still drinking between 12 to 16 ounces on an average day. Most of it is flavored water, but Almond Chocolate milk is running a close second.

What's Your Chi?

As Sloane and I were arguing about a packet of stickers this morning, we ran into an old friend of mine. We were doing some birthday shopping. Sloane Jacqueline will be 2 on Friday, July 20th. I can not believe it! Where does time go? We were strolling in between Michael's craft store and Joann Fabric disagreeing over whether or not to open the stickers. I am sure you can figure out who wanted them open and who didn't!! As I was ignoring the "oh, I know, ome (open) this", we just about walked into Patricia. I haven't seen her since the first week of February 2010 when she stuck her last acupuncture needles into my feet. 

I am sure way back when in my blog, I mentioned that I have PCOS. I have always know this and was always somewhat aware that conceiving a child would be a challenge. In my younger years, I do not think I truly connected the dots. As I got older, I started to realize that PCOS was a BIG problem in the fertility world. Once my hubby and I decided that we were going to give the baby making a go, I knew I was headed for the infertility clinic on the fast track. 

I had had friends who used acupuncture to help them conceive so I decided to blend Eastern and Western medicine to help me conquer my PCOS. I was going to embrace my infertility while immersing myself in my chi. I saw Patricia for acupuncture once a week for almost a year. I knew that many people think it is hocus pocus so I quietly entered the Center For Balance each week. Patricia balanced me out and educated me on all the environmental and nutritional hindrances in my life. I learned more about my body in that one year than I had in 37 prior. 

Once I became pregnant thru IVM (In Vitro Maturation), Patricia spent the next 12 weeks strategically placing her needles to help me stay pregnant. I do believe that acupuncture helped me get pregnant, but more than that I believe that acupuncture was the reason I stayed pregnant. 

Patricia and I hadn't seen each other since my last visit. She did know of Sloane's arrival, but they hadn't met. Seeing her today reminded me of it all. It has been a 3 1/2 year uphill climb for my hubby and I. Patricia and I caught up on life and  all the bumps in the road along the way. Sloane, of course, charmed her way into Patricia's heart. The stickers were a distant memory 30 seconds into our chat. 

I was more reflective today after seeing Patricia than normal. Our lives have been in survival mode for almost 2 years, so life as we knew it before Sloane's arrival, is buried deep beneath the rubble of the laryngeal Cleft diagnosis. Acupuncture is an old friend of mine. I havent thought about my horizontal hours of incense sniffing, mediation music listening and needle pinching in years. Seeing Patricia today reminded me that I may call on my friend acupuncture someday again. The heavens above know I could use to be balanced once again!!

Until We Meet Again

The week of 4th of July is so busy for our family. My apologizes for my disappearing act. We had a wonderful mini-vacation!! It proved to be exactly what the girls needed. Sloane and her cuzzy were 2 peas in a pod this past week. It was a week of what childhood memories are made of! They bathed together, napped together, played together, ate together and loved each other to pieces. Lots of photographs need to be developed!!

Sloane's mickey button site continued to heal well. We were diligent about keeping it clean and covered for 8 days. By Thursday, it started to look less irritated and more settled. Our assumption was that it was completely closed internally because there was no leakage at all, all week. So I decided to call Dr. K, (actually I texted her a picture of it....I am sure no-one is surprised by this). Ha. She called us and confirmed that the site looked very healed and it was safe to uncover it. We decided to wait one year and see if the outer skin around the hole/slit smoothes down at all before it gets treated. Dr. K gave us her well wishes, asked me to continue sending pictures of Sloane, complimented me on my mothering and lastly, she discharged us. Just like that! That was it! The mickey button, the feeding tube and its huge presence in our lives were gone.

I am not even sure Sloane knew she had a button or that is gone. She does keep pulling up her shirt, putting her finger on the site and saying "what's this?" We were calling it a boo boo when it was covered with a band aid. Now, I'm not sure what name will label it. I, also, keep pulling her shirt up to show everyone we see in our circle what it looks like out of pure excitement. Most people agree it looks like another belly button (ill post a pic soon).

It was a week of celebration. Their were visits to say congratulations, there was presents for Sloane to say you are a big girl, there were cards to mom/dad to say we're proud of you and there were phone calls and texts to say yahoo!! It was a very special week for us as a family. Sloane's ani, my SIL, decided to surprise Sloane with a Bye, Bye Button Elmo cake (the smile on her face was priceless as well as the red frosting that covered it minutes later).

Our circle of trust was beyond thrilled for this milestone!! And we are forever grateful for their presence on this journey.

Zantic Antics

The mickey button site has been downgraded to a category 5 to a category 1 issue. We replaced all the gauze today with a band aid. The site, itself, looks good to us but the truth be told... what the hell do we know? There is no leakage and its coloring does not indict an infection, but beyond that I am clueless. I am going to assume that the top layer of skin can not fuse together so I think they will always be a slit/opening/hole/indentation resembling another belly button. The skin around that slit/opening/hole/indentation is going to need some tweaking by Dr. K in the future. It is granulated. She had told us that she would burn it a bit to try to get it smoother. That isnt something I intend to do sooner than later unless we have to. An auntie said to me...ohhh, don't worry about that skin, she is your kid, she will probably want a tattoo around it!! LOL I had to laugh! That's a NO!! I do have 2 tats myself so that would be an interesting conversation.

So here is the first problem now that Sloane has no g-tube! I am having some major issues syringing her Zantac into her mouth. I switched her to a chewable fruity vitamin to alleviate that issue since her Poly-Vi-Sol with iron tastes like road caucus. Now, I am sure it is hard to believe, but the Zantac tastes even worse! Unfortunately, Zantac doesn't come in a fruity flavor. I did consider adding Mio drops to it for flavor...LOL! I also suggested to my hubby that we freeze it into small chips. Sloane loves to munch ice chips. We have to do something. I have tried to squirt it into the back of her cheek, disguise it in ice cream, dissolve it in her JU and drizzle it on her food. It is all not working. In the back of my mind, I wasnt overly concerned because I was thinking we were going to be able to wean her off the Zantac soon. I think that was rose colored glasses thought because on 2 different nights this week, Sloane hasnt had her Zantac. On those nights my angelic sleeper was up every hour on the hour screaming for me. Either my child is still refluxing significantly or she is having terrible nightmares.

After last night, I was determined to get the Zantac into her. I took the syringe into her cheek approach tonight. There were major tears, full fledge gagging, and some spitting. VERY FUN!! I did think for one fleeting second how easy it had been to push the meds through the mickey button. The thought passed faster than a speeding bullet. We shall see how tonight goes. I am hoping that some of the dosage made it into Sloane. I have already chatted with the NP at our ped's office once about the Zantac antics and I'm pretty sure I am calling again tomorrow.