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)