Memory Lane 9/11/2010

After 7 weeks or 51 days, Sloane finally came home from the hospital. We found out on a Tuesday that she was coming home on Friday. We were preparing, but the reality was scary. I remember wishing that we could stay for one more week because my hubby was traveling the ENTIRE first week Sloane was home. We came home on a Friday and he left on a Sunday. Our circle of trust signed up for shifts and I was not alone for one minute. 

Now, here is where the post gets funny. I told everyone many, many times that we needed to be alone all weekend so we could find our groove as a family of 3. I felt guilty saying this because our families were dying to spend time with Sloane in the comforts of a home not a hospital room but it was the way I wanted it or thought I did. 

I remember the day so clearly. It was Friday, September 10th. I was a sea of emotions. Discharge wasnt exactly what it would be for a a baby without a medical need. It was a high alert day. There were medical forms to read and digest, meds to be responsible for, prescriptions to fill, syringes to pull and push correctly, surgical dressings to change, a feeding pump to run, medical supplies to unpack, specialized formula to make and a newborn to care for. It was overwhelming. The care ride home you could hear a pin drop as we sat in bumper to bumper traffic for double the time it should have taken us to come home. 

Once home, our refrigerator was filled by mammie and she was awaiting our arrival. We came in the door and it was feed time. The pump, the meds, the formula, the feeding tube, the silence, the long gone safety nets of nurses....all of it made me crumble to pieces! And so I cried, and cried and cried. I couldnt stop. I cried for hours. I couldnt control it. The girl who clearly told all our loved ones they couldnt come over for 2 days until my husband was gone was hanging on mammie and nonni begging them to not leave me. I was so afraid. I couldnt get a handle. I knew all the procedures, I knew how to take care of my daughter, I knew her better then anyone...yet, I couldnt stop crying. I kept apologizing..saying if I cold stop crying I would. I am sure on some level they were all concerned, yet on another understood the magnitude of what was happening to me. I was solely responsible for Sloane's health and that very normal fact had dropped me to my knees. My father called and asked how it was going, I burst into long sobbing cry and said "I miss mommy". And so there was soon another person in my living room. That same scenario played out once again with Sloane's Godmother. And then there were 6......

I remember eating dinner with Sloane in the bouncy seat across from me crying and apologizing to everyone there. I kept saying if I could stop crying I would. By the wee hours of the morning, I relaxed some and we assumed our positions. That would be the ones of staring at Sloane all night to be sure she was breathing. Once you child turns blue in front of you once, you never forget it or stop fearing it. 

And so our positions didnt change much for a month. We hunkered down and did find a groove. We did not take Sloane out of the house for a month. She didnt enter the real world until she was 3 months old! It was an exhausting, ridiculously challenging, pressure filled to the minute schedule, but it was one. When I think about what Sloane's care was like when she first came home, I cant believe what our loved ones did for us. I wasn't alone for a month. They gave up their sleep, they embraced the cliff note version of how to care for an infant with a feeding tube, and they took care of all stuff we couldnt manage. 

Below is the email I sent to our circle of trust. It sounds like everything was under control......NOT!!!

Back to Memory Lane

9/11/2010

the day after we came home from the NICU

hi everyone!! sloane is FINALLY home!! we came home last night. we are still finding our groove. it was quite scary to leave the safety nets at the hospital and be on our own!! im sure in a few weeks sloane's feeding routine/procedure will feel like 2nd nature!! 

alan is away for work this week so our friends/families are staying with me!! thank god!! 

thank you for all your support during our stay in the NICU! we are very thankful to have all the love and care surrounding us that we do!! we are looking toward healthier, happier and more relaxed days as the months go on.

xo

Finding My Center

I sat down tonight to write a blog that has been on my back burner brain for a while now, but I am so fucking rip roaring pissed at the Substitute Teacher in my classroom at this moment that I cant find that special place in my heart to write from. lol!! Now, I know that when you have had an experience like mine of having a child with a special medical need, certain things should not bother you. You know the saying: Don't Sweat The Small Stuff.

There was a time when I didn't sweat anything but Sloane's laryngeal cleft. I cared about things, but I certainly didn't fester them or dwell on them. Now, that I think of it. It was a nice time in my life. And it wasn't chemistry induced either. I am a firm believer in happiness thru chemistry. I was just focused on Sloane's health and nothing else truly mattered. I can remember when my brother would ask me about certain situations; my answer would be "I have a child with a hole in her throat, that doesn't matter to me." It was harsh, but true. And I am sure my attitude was difficult for the circle of trust to navigate around.

Tonight, I am writing from a difference place. Probably a more balanced place. I am writing from a place that gives a shit about general life. Sloane is in a good place. She is drinking. She is off the tube. She is healthy at this moment. She is tolerating thinner liquids. She is interested in drinking. She is on forward moving track until her next scope on October 30th with Dr. Rahbar. With all that being said, I now can breath and have been breathing more and more each day since the moment her feeding tube came out. With each breath came a "oh, yes, this is our life" and so I give a shit about outside world.

So, tonight I cant blog my very special blog. I am down right ugly inside right now. I am going "find my center" before I head to bed. LOL!! I love that one. One of the NICU nurses used to say that to Sloane and I still do when she is spinning out of control. It seems tonight that my hubby had to say the same to me as I was on a complete tyrant about my 16 years of teaching materials that are no longer in safe keeping. I am finding my center!!! We hope!!

To all my colleagues, have a wonderful school year! This "on a leave" teacher will be thinking of you tomorrow and sending her positive thoughts your way. Although I wont be in a classroom tomorrow, we will have something in common. We are working at the hardest jobs on the planet..... being a mom and being a teacher.

My Name is Tarra and My Child has a Laryngeal Cleft

Last night I did some research in regards to this blog.  I am able to gets statistics daily as to:
who is reading it,
which posts are being read,
who subscribes to receiving it daily via email,
the search engines people use to find it, and
what countries my followers are from.

So I decided to do some research on Laryngeal Cleft blogs. Through this journey, I have always searched factual information on Laryngeal clefts and their prognosis. I had never come across an actual personal experience blog. Now as a disclaimer let me say, there were there.  I just didn't want to read them. As a matter of fact, I was in a dark place when we got our diagnosis that I was furious with our circle of trust when they sent information forums/stories about children with laryngeal clefts. They were all too negative (in my opinion at that time, but clearly now that we are 2 years into our journey......they were realistic).

Last night, I spent some time researching Laryngeal Cleft Blogs. It seems that I am not exactly original. LOL There are quite a few families who have put their journeys out there for the world to follow along with. We have never had a conversation with another cleft family to have a place to bounce ideas off of. Our doctors and friends have told us of other families they have known, but none were close enough for us to feel comfort. I guess we wanted to pave our own way for our child.

I spent some time seeing as though I have become more realistic reading other journeys without wanting to toss the computer across the room. Some stories have similar paths and others don't. Many parents talk about their loathing of the feeding tube. I am convinced now that it has something to do with the fact that many  children with isolated Laryngeal Clefts do not have any visible medical issues but the feeding tube. So its like a jedi mind fuck!!

I contacted some blogs to network some on our end. I have had moms of cleft children contact me as a result of finding our blog, but I havent reached out myself. Last night changed that. After 2 years and a closed up mickey button site, I am finally ready to open myself to hear others war stories and pot of gold endings.

As for Operation Fluids, Sloane is on 4/12 oz. of liquid to one packet of Nectar Consistency Simply Thick. She is doing well and I only hear a cough here or there. Usually because she s swallowing too much liquid at once. Sloane likes to take BIG sips and swish the liquid around in her mouth like its mouthwash before swallowing. We try to control the volume in her straw but many times she squeaks a chug by!! Tomorrow, we will be trying to increase Sloane's liquid to 5 ounces to one packet of Simply Thick.

Memory Lane 9/3/2010

As I was posting this tonight, I started thinking about how we were dying to bring Sloane home once September had rolled around. We had been in the NICU since July 24th. It had been long enough and the g-tube surgery was the last procedure before we could be discharged. It was the light at the end of the tunnel. 

Now, that is not to say that it went off without a hitch. The night of Sloane's surgery (August 31, 2010 as she was recovering, 5 minutes after our primary nurse and make everything better person walked out the door, Sloane tore out the tubing just surgically sewn into her belly with her 2 toes in a fit of rage. I screamed because the screams she elicited were those of extreme pain. In the 7 weeks that had passed I had not seen this kind of cry. It was heart-breaking.

 The doctors & nurses came running, Sloane was gone from my arms once again and I was right back to our first day in the NICU crying like baby in the hallway. 

Crying for her pain, 

crying because I feared we wouldnt be able to go home as soon as we thought, 

crying because in my face again was the fact that there was something medically wrong with my child, crying because I didnt know if I was going to be able to take good enough care of her and 

crying because I was so afraid to take her home. 

Back to Memory Lane

9/3/2010

4 Days after Sloane's Mickey Button Surgery

The Healing was in Full Progress 

hi everyone, thank you for checking in on us after sloane's surgery. she is slowly recovering. we are hoping by tuesday, which will be one week since surgery, that she is back to herself. her reflux and colic are certainly putting a damper on her need/want to rest and sleep. mommy and daddy are also feeling its affects! its very difficult to watch her so upset and in discomfort. we are hoping to be home w/in a week or 2. i know i keep saying that but i figure its got to be true at some point. LOL sloane's belly needs time to heal!!

she is getting so big..its crazy!! already almost 8lbs 6oz!!on tuesday she will be 7 weeks old!!! 

so this am as i was feeling a bit sad/overwhelmed about how uncomfy sloane has been feeling this week and the whole last 7 weeks here in the NICU...some days i just cant believe everything that has happened. i was sitting in the family room and i met a dad and we started chatting to which he tells me his daughter was born last sunday full term and suffered terminal brain damage in the last 2 days in the womb bc of a cord issue. he and his wife were just spending time with her while they have it. 

and there it was again from the big man upstairs: the reminder that it can always be worse!!

xo

Twice The Time 2s

Let me tell you why I think The Terrible 2s, as they are called, should be renamed "Twice the Time 2s" in our house. Everything I want to, need to, have to do and end up doing takes twice the time lately. It is unbelievable!! Nothing gets done quickly or efficiently anymore. I swear to GOD, my 3 loads of daily laundry take from 7am to 8pm  to finish. I used to wonder why my mommy friends would have piles of laundry on their couches unfolded. Now, I know!!! Our bed is covered by a heap of oxy-cleaned, very wrinkled clothes for hours each day!! I am sure this makes many of my readers cringe because a perfect fold is part of their nature, but I honestly am being pulled away from the pile all day with "mommy, come play", "momma, come back", "mom, i want you", "tarwa, where are you?"

I spent sometime thinking about this Twice The Time problem today because some days I wonder where the fuck my day went?? Today, my shower took twice the time and with that my towel cabinet was emptied all over the floor, there was a pile of books scattered in the walkway and Sloane was wearing a beautiful shade of Russian Red lipstick from my makeup drawer. (Note to self: move the make-up higher up or better still throw it away seeing as though you havent worn a stitch beyond mascara and lip gloss in 2 years). Twice the time!! A standard shower followed up by the same amount of clean-up time.  One day last week, I had the awesome idea to take crayons and huge construction paper in the bathroom during shower time so Sloane would stay busy. One of my more stupid ideas....broken crayons and torn paper wrappers everywhere!! It was a wonderful reminder why I used to take a shower while Sloane was hooked up to her feeding tube fed in her highchair unable to move for 30 minutes.

Another example of Twice the Time 2s is dinner prep. I am no longer a fancy cook. There was a time when I would rip out recipes on Sundays and try them that week. Not anymore!! Here at 1029, a fancy meal is a simple pasta dish that has more than 4 ingredients! LOL. Tonight, I felt adventurous so I decided to make 3 side dishes...another stupid idea. The witching hour 5 to 7pm was turned into a quick jaunt to toddler tantrum hell!! Sloane wants me to play with her, sit near her, sing with her, dance with her, and be with her. There was a juggling act between the oven, 2 boiling pans, a cutting board and my 2 year old best friend!! Dinner took twice the time to make and then twice the time to eat!

Just about everything takes twice the time for me, but half the time for Sloane. LOL She is buzzing around most days getting all her learning and playing done in record time while I am running around like a chicken with her head cut off getting my stuff done in a Twice The Time way!

Memory Lane 8/30/10

So we are on 3 nights of Sloane sleeping thru the night again! Yahoo!! I am hoping it sticks. I was diligent with the naps and the schedule to try to fix our 3am "let me out of this crib" sleeping problem. I read, I goggled, I asked friends, I hunkered us down in our home instead of packing us up for the grandparent's house and I devised a plan with my hubby to get us both on the same page...and I think it worked? For the time being at least??? The first night, there was some screaming and tears but they were short lived and the following 2 nights...not a peep!! I can only hope we get a few weeks of dreamy sleep before the construction starts at our house and Sloane's schedule, my sanity and peacefulness of silence is shot to shit!!!

BACK TO MEMORY LANE

8/30/10
(the night before Sloane's g-tube surgery)

good morning and its a wonderful one in the NICU!

as you all know we were waiting for test results to find out if sloane needed another surgical procedure during her gtube surgery to address her reflux. the drs. thought she may need to have her stomach sewn around her esophagus opening to end her reflux...its called a nissen. alan and i were tormented about having to make the decision of whether or not to consent to it. we made lists and lists of pros and cons over the past 3 days. im sure no one is surprised by this! 

last nite, i said "lets leave it up to god" and he will point us in a direction of yes or no based on the test results. we didnt want to be in the gray/maybe area where we would have to make the choice! and we arent! thank you up above!

the test results showed that sloane's reflux is significant but doesnt warrant a nissen for a few reasons! thank you god!!! we are so happy we waited out this test and the few days and didnt just consent to it on thursday.

so tomorrow is the BIG day. g tube surgery is at 8am!! let me just say that we LOVE the surgeon. we know that the next week will be a hard recovery but this is the final step to taking sloane home!!

we are praying that tomorrow and the days/weeks following it sloane keeps getting stronger and healthier!!! she is almost 8lbs 3oz!!!!!!

A Nap Freak

Let me just say that sleep is a gift! For some reason, Sloane has been up a few nights here and there from 3am on yelling for us. It is not a screaming I need help cry. It is an annoyed help me cry.

When she starts I jump up with a jolt and then hear "momma, momma, tarwa (my father thought it would be cute to teach her our names...thx dad), momma, daddy, alwhen (again thanks dad), daddy, i dont wanta do nite nite, momma, boo, boo, i juv(love) you", and on and on and on.

At certain moments it can be funny and others you want to scream yourself! I feel horrible for my hubby who is up and out the door by 6am for a 13 hour work day. I can manage. I just do the zommbie, no makeup, sweats day. I am sure the people around me know the kind of night's sleep I have had by the appearance of my hair. One of my girlfriends or should I say Sloane's best friend, told me how nice my hair looked the other day. My response was "that's because I actually did it" LOL

The past 2 nites, it was non-stop from 3am to drumroll please......4:15am. Now in an earlier post I said that my hubby and I have a rule: whatever is said in the bedroom from 11pm to 6am doesnt count. It has worked for us because we can get nasty. We both have different approaches to address our middle of the night chatty cathy problem. Both of us start off calmly and then the gloves come off.

As the "full-time momma", I have some ideas of why Sloane is up and rearing to go during the night, but most people think I am crazy because it sounds ridiculous. I think that when these nights occur Sloane is overtired and can't settle down. I know, I know, she is wide awake so that sounds nuts. Its just my philosophy.

I am a buzz kill when it comes to a schedule with Sloane. I like her to have her sleep and want her sleep so when she doesnt get it I think she feels the imbalance. First its her nighttime sleep and then its her naps...all the sleep, growing time, rejuvenation times goes to shit. She is cranky, I am cranky and life becomes cranky!

After a few nights of broken sleep, I am determined to put my philosophy to work. I become obsessed with an at home in bed nap. It is my goal of the day. Truly I appear like sleeping with the enemy during these days. A nap control freak!! My own brother said my whole schedule thing was driving him crazy. LOL My friends I am sure are tired of hearing me say...that wont work for us, Sloane needs to nap.

Right now, Sloane is napping! One hour down and hopefully one more to go. I organized my entire summer beautiful day around a nap. And more to come tomorrow as to if it made a difference in tonight's sleep. I am battling it out alone as my hubby is away on business dreading his long travels days I am sure, but thrilled for the silence he will hear from 3am to 4:15am!!

The Thinnest of Them All

I can easily say that today went off without a hitch! 

• There was no traffic which was great, but on the other hand WTF...why, did I leave my house 2 1/2 hours early??? Honestly the drive into Boston is completely unpredictable. 
• I had assumed that we would wait 2 hours for Dr. Rahbar, but in fact we only waited one.
• Sloane was relatively pleasant being trapped in her car seat for 2 hours and then her stroller for another one before Dr. Rahbar stuck his camera tube down her nose for an eternity. 

Those 3 things can make a visit to Children's much more pleasant. Sloane did start to unravel on the way home before she collapsed into her nap, but the truth be told I was unraveling too. My knee was killing me from driving, my eyes were slits from drain of the day and my stomach was dying for anything more than a roasted almond. Mammie, as per usual, was much more seasoned than me and took the day as a real veteran. 

As for our visit, it was a good one. I think there were some participants in our circle of trust that thought Dr. Rahbar was going to discharge Sloane today from his care. I knew that wasn't going to happen. In spite of all the progress she has made, Sloane's laryngeal cleft is still very present in her airway as a significant player in her general health and a constant topic in her medical care. Sometimes, I think because she doesn't have her feeding tube anymore and because she is drinking that people think our journey has come to an end. Sadly, this is not the truth at all. 

Dr. Rahbar did scope Sloane and say that in his opinion there is no visible irritation, swelling, redness from her reflux. As an ENT, he does not think we should put Sloane back on reflux meds at this time. He would like to give it more time without them to assess the situation more. We can assume then that Sloane's bouts with croup were just that or an airway infection of some kind. 

He and his staff were happy with Sloane's Super Duper progress! The plan moving forward is to have a BIG push thinning out her liquids from now to October. He wants Sloane to make some headway before cold and flu season is upon us. I was thinking that this year would be a bit less concerning for Sloane....but I guess not. When he said the words, the wind was immediately taken out of my sails. 

We are going to use the 1/2 oz. every 2 weeks formula...meaning that we will do 4 oz. of liquid to one packet of nectar consistency for two weeks and then up to 4 1/2 oz for 2 weeks and so on...providing I don't see any signs of aspiration this formula will continue right until we see Dr. Rahbar in late October (11 weeks). If/when I see signs of aspiration, I will backtrack to the prior consistency and sit tight until our appointment. 

If Sloane has signs of aspiration at the thinness we are at when we see Dr. Rahbar in October, he is going to schedule a swallow study to formally assess her swallow. Once that is done and based on those results, he may want to go back in and surgically tweak (put another stitch in) her laryngeal cleft. I did know that this could happen from our 1st meeting with Dr. Rahbar in January 2011, but I had assumed that Sloane had done so well so far that it was off the table. The reality is that her cleft was a level 2 almost a 3 and her incredible progress thus far is a testament to how strong-willed my daughter is..... so a second surgery shouldn't be shocking if it has to happen. 

We met our new SLP (speech pathologist) today. She was very nice and had a sweet way with Sloane. We are going to see her monthly just as we saw Courtney. Our new SLP will monitor use thru our thinning out schedule. I do like having a professional to help me manage it all. I have missed the one on one attention of a SLP these past 2 months. 

My hubby would call me Rusty Jones tonight if he could. I am out of practice. These past few months have been a vacation in regards to medical appointments. I forgot how draining these days are for me. I am on the couch vegetating right now, which isnt ideal since I just committed to running a road race with the aunties in honor of a dear friend who we loss and should be out for a run!! 

Tomorrow is day one of this next 11 week stretch! The pressure is back on. 

Sippy Cup, Sippy Cup on the counter,

Who will be the Thinnest of the all??

6 Months Already????

Time has flown by! I can not believe that it is mid-August and tomorrow is already our follow-up appointment with Dr. Rahbar. We have been waiting since April to see him again, but it seems like Sloane was just getting scoped by him in his office (post: 4 Months and Counting 4/3/10). I always get a bit quiet the night before a doctor's appointment. I like to gather all my thoughts, plan out the day in my head as well as gather all the paraphernalia will need to take with us for the day. I am not sure what my thoughts are on tomorrow. I am not expecting or prepared for any negative news.

On the other hand, I am not exactly expecting him to say that Sloane is dismissed from his care. I am much more of a realistic 2 years later. One of my dear friends, used the word "disconnected" when she referred to my state during my time in the NICU. So to tally up, thus far, I have heard dark and disconnected. Both seem like perfect choices when I re-read my circle of trust emails from 2010! I think it is funny that at the time I had no idea my dearest friends were thinking those words! You gotta love your dearest friends...they always tell you how it is...no matter how much time has gone by!! Thats why they become the friends you hold the dearest!

Here he is!!! The man, The legend, Our Leader

As per usual, I am sure Dr. Rahbar will scope Sloane tmrw and tell us what he sees. I'l be asking him if he sees any signs of reflux...either swelling or irritation or redness. I am going assume his response will be yes seeing as though Sloane refluxed so badly today that she couldnt catch her breath and was visibly upset but its sudden appearance. 

I am hoping also to discuss the size of Sloane's airway. Is it smaller than the average 2 year old? Both of his answers will help the ped and I decide on whether to re-start Sloane's reflux meds and give us some insight as to Sloane's re-occurrent croup. Is it croup or the result of a narrow airway compounded by reflux swelling? 

I have lots of exciting things to share with Dr. Rahbar: 

1. Sloane no longer has a g-tube. 

2. Sloane is drinking 4oz. of liquid to one packet of nectar consistency without any visible issues. 3. Sloane is drinking between 8 to 16 ounces on an average day.

4. Sloane is off all her reflux meds.

5. Sloane has not have any respiratory issues in the past 6 months.

As I type this all, I actually can not believe we have made so much progress in the past 6 months. It is AMAZING!!!

Some days I start to think about all that has happened in these last 6 months, I can not process it all. Many huge accomplishments and so many tiny milestones. Everyday, Sloane is growing and learning beyond her laryngeal cleft. What I mean is....everyday, huge and teeny tiny 2 year old things are happening in our home and they have nothing to do with her laryngeal cleft!! Last year at this time most days all I thought about was:
her laryngeal cleft,
her feeding tube feeds,
her mickey button,
her lack of a sippy cup in her hand,
her potential aspirations into her lungs and
her acid reflux.

Today......I thought of none of those things! I thought about how rapidly Sloane is increasing her vocabulary, I thought about the fact that she is counting to 10 and has learned 3 colors, I thought about what she is going to be when she grows up, I thought about her freshness with all the "i dont want tos" and how much they piss me off.

Memory Lane 8/25/2010

Back to Memory Lane

8/25/2010

(we had made the very difficult decision of having a g-tube surgically implanted in Sloane. this decision proved to be one of the best we have made throughout our journey. sloane's g-tube was implanted from 
august 31, 2010 to june 27, 2012. sloane was 1 month and 5 days old and we had been in the NICU for one month)

hi everyone! sorry we havent emailed in a bit. ive gotten some check ins so i know its time to send out an update!! we weighed in last night at 7lbs 15oz!! YAHOO! 

this week has been a testing week to get ready for sloane's g-tube surgery. alan & i have decided after a very long deliberation period to have a g-tube surgically implanted in sloane rather than bringing her home with a nasal feeding tube. 

in preparation for surgery, we had an upper GI test to check the anatomy of sloane's gi track which came back normal. this wasnt surprising to us bc she is a poopy pants most days! 

yesterday was interesting! we went to nuclear medicine at ri hospital and had radioactive material put into her feed and watched/tracked sloane's reflux as she digested it. they strapped the blueberry to a table for almost 2 hours. she was so good though! truly amazing how strong she is...much stronger than the momma. this test showed multiple episodes of reflux. we are waiting to speak w/ the ent and surgeon to decide if/how this changes the g-tube surgery. there are some other medical procedures they can do to help the reflux.

i think sloane is getting tired of all this shit!! lol!! she slept monday night from 11pm until 8am today. now, of course, she had wakeful periods here and there but she was down for the count as we say in my family. she did have a week of screaming from 6 to 11pm straight so she may have fizzled herself out. they tell me when she is in her rage that colic has begun!! i think its colic and frustration bc she cant suck/eat by mouth (she is such a good sucker) as well as the fact that babies get rid of energy by nippling so she needs some extra activity to release some energy!! the pacifier isnt doing the trick some days.

its looking like surgery for th g-tube and reflux (if need be) will be tmr or friday. ill let you know when we know so the hardcore praying can begin.

 we have met with the surgeon two times and she seems very nice. we will see her again tonite or tmrw nite to make some final decisions. im worried about having my blueberry put under again as much as i worry about seeing her intubated and on a ventilator when she comes back. i know it'll be days of seeing her under the weather. the nurses have started to talk to us abut what will happen after surgery. once sloane recovers, we will begin our training to come home. 

xo, sloane's mommy & daddy

Memory Lane 8/18/2010

BACK TO MEMORY LANE

8/18/2010

when I re-read this email, I had to laugh at the fact that I call Sloane's laryngeal cleft a deep groove rather than its factual diagnostic name....that's some serious sugar coating)

first, let me say thank you for all the prayers you all sent for today. we are so thankful for your support. 

sloane had her 2nd swallow study today. the goal was to see if sloane's acid reflux/swelling treatments have helped her with her swallow enough to bypass the deep groove in her throat so that she does not aspirate liquids into her lungs. 

sloane did aspirate today. it was to a lesser degree than her first study weeks ago so we can assume that the meds did in fact help. it would have been a blessing from above for her to not have aspirated at all but logically we prepared ourselves that the groove would not magically close up and 3 weeks simply is not enough time for an infant to progress enough to bypass a groove.

so what is next? we have a meeting on friday w/ our teams of doctors to plan our discharge. basically, there will be a decision about how sloane is going to be fed at home ( a nasal feeding tube or a implanted g-tube)and what type of services will see need now and in the future to prepare her for eating by mouth. 

it is not clear to us until we see the ENT again about how we will address the deep groove in the future. will surgery be an option in 6 months when she is bigger/older or is there a high chance as she grows the groove becomes less significant and she bypasses it with ease.

we have 2 options. a nasal feeding tube as she has now and an implanted stomach feeding g-tube. we arent sure what the team will suggest but we have our own opinions on both. before we can go home, we need to be trained in     the nasal tube and its feeding procedure as we will be responsible for replacing it OR for the stomach tube we need  surgery, healing time and training on its feeding procedure. either way im hoping we are home in weeks not months. we are all ready to get home and start enjoying the bliss of parenthood. 

today was a confirmation that we have a long road ahead of the 3 of us. as with all things in life, we are thankful....for sloane being healthy, for finding out about the groove bf she got sicker, for all the family bonding we are doing in our small room, for the support around us from all of us and for the fact that GOD answered our prayers and gave us this amazing child. there will be days, when im sure we will lose sight of our blessings and we hope you will all be there to support us then as well. 

each day, sloane and i say our prayers and we pray for all of you. your care has not be forgotten through this past month. 

on brighter blueberry notes, sloane weighed in at 7lbs 7oz this week. she is sowing some wild oats..she may have some colic like her daddy did they tell me. i said "acid reflux, a cleft, and colic....are you joking" and they said "it could be worse" and that it can be!!

xo sloane's mommy and daddy

Memory Lane 8/13/2010

BACK TO MEMORY LANE 

8/13/2010 

hi everyone, someone of you having been texting/emailing to check in on sloane so i thought id send out an update. 

time is flying here in the NICU; we have been here for 3 weeks. sloane is getting bigger and stronger. she is up to 7lbs 5oz!! thats one pound since birth and almost 1lb and 1/2 since admission into the NICU.

sloane's 2nd swallow study is on wednesday. we are anxious to see how she does so that the drs. can make a plan for our discharge in terms of sloane's future feeding approach. hopefully, sloane's acid reflux/swelling have diminished and her weight gain has helped strengthen her throat muscles so she will show improvement from her 1st one 3 weeks ago.

she has gotten much more feisty which can be the good news or the not so good news.... i went home to sleep last night and the drs. called at 4am bc sloane had blood in her belly. she had torn out her feeding tube during the night and when they re-inserted the new one and checked its placement she had blood in her stomach. they stopped feeds and put her on an iv until they can figure out what is happening. im hoping its just bc she irritated herself with the tube but who knows.i cant believe she is back on an iv.  so of course, i have rationalized that this would have happened if i was here but the GUILT of not being here overrides it. i am also concerned about if i am going to be able to keep reinserting an nasal feeding tube when she pulls it out.

sloane is truly resilient...sloane is less affected by our setbacks it seems than i am. alan said the other day "babe, sloane is not the problem; she will be fine. she is stronger than her mother."  and i say thank god for that bc this is the hardest thing i have ever experienced. 

 the blueberry is much more alert and is enjoying going wireless so we can walk around the halls. daddy gave her a bath today and mommy filed her nails..it was a real spa day. :) right now, she and daddy are napping together. 

the nurses continue to be wonderful. if we go home at night to sleep, sometimes we come back to a scrapbook page one of them has made of sloane from the night before. 

we are started to realize that we dont know normal baby behavior vs sloane's behavior. its hard to sit back and say ok, this is fine. all babies do this. rather than sending out a red alert to the nurses. hopefully we will have a better understanding when we come home. being 1st time parents is hard enough, but in this situation sloane is kicking our asses!! we laugh about it daily!! she has brought us to our knees. neither one of us can remember life prior to her arrival and it feels like she has always been here...i mean seriously is it only 3 1/2 weeks since her birth??????

so wednesday is the day we have waited over 2 weeks for...its the big game as alan says. we know nothing major will change in the immediate but it would be a blessing to see some improvement in regards to sloane's swallowing skills and the reflux induced swelling in her throat. id like to hope that we will be home by labor day. 

we hope everyone is healthy and enjoying their summer. say a little prayer that on wednesday, the blueberry puts on her big girl pants and once again shows us what she is made of!!!!

xo, sloane's mommy and daddy