Sip, Wait, and See

My hubby suggested last night that I take a more medical approach in some of my posts. But the thing is...with a laryngeal cleft, there is a lot of sip, wait, and see. Prior to Sloane's swallow study results in August 2011 after her cleft repair, I could have posted daily with medical updates (post: Are We There Yet). And probably should have!!! In future posts, I'll dazzle my followers with my knowledge of feeding tubes, reflux, aspiration and if you are lucky....ill post about what happens when your placenta abrupts and you have have a crash c-section. FUN for the whole family!!! Right now, we sip, wait and see.


A laryngeal cleft is in my opinion, an odd birth defect. You see, there is no easy fix or quick fix. No big surgery repairs the cleft immediately. No medicine makes it go away. I used to say to: 
we give babies open heart surgery within hours of life, but a cleft can't be fixed, 
we transplant organs in infants, but a cleft can't be fixed, 
we operate on babies' brains no matter their size, but a cleft can't be fixed. 


A laryngeal cleft is not an easy fix. There are days, months and Im now thinking years...... of sip, wait, and see. To put this in perspective, I have been waiting for 358 days to see what I did today. Almost a whole year....as I said a whole lot of sipping, waiting and seeing. Since Sloane's cleft repair in March 2011, I have been living from doctor appt. to therapy appt. to doctor appt. waiting for someone to say....ladies and gentlemen, the cleft has left the building! 


This afternoon during snack time, I asked Sloane if she wanted juice. My reply came with a big smile and a shake of the head. 1/2 juice and 1/2 water in the sippy cup to make 4oz and then one packet of Simply Thick (honey consistency) added in. A big shake to mix it up and we are off. 


I watched my daughter wander around our old living room, her new playroom. I am not quite sure how that happened?? Anyhow, Sloane wandered and sipped away at her sippy cup. She threw her head back and loved every minute of it. I watched and waited (for a cough, a gurgle, redness around the eyes) but nothing!!! And so what did I do, I cried. Yup. Tears rolled down my cheeks. The tears that happen when see something beautiful. I had waited 358 days to see something like this. To see my child hold a sippy cup and drink anything she safely could while being a normal baby. Not a baby strapped in a highchair with someone or sometimes 5 people staring at her, not a baby being x-rayed while swallowing, not a baby forced to drink...just a baby who wanted to drink and play and walk and of course, twirl and then drink some more.


Laryngeal clefts are a lot of sip, wait and see! Days and months go by in a blink but then something happens like today. Such an accomplishment becomes something so normal. 

The Blow Heard Around The Room

My hubby and I have an agreement in our house it is: whatever is said between 11pm and 6am doesn't count!! Why? Because those are the sleeping hours and sleep is a hot topic in our home. Years ago...sex was the hot topic among friends....who was getting it, when were they getting it, where were they getting it. Now as new parents, sleep is the hot topic among our friends!! As I said in an earlier post, my child has been and is a very good sleeper. 80% of the time, she goes down around 8pm and there isn't a peep until 5:30. At that point, I bring her in bed, while my hubby heads to the couch for his last 30 mins of sleep, and nestle her into my arms for another hour or so!! The best moments of my life..dreamy!!! As a disclaimer, we do not kick my hubby out of bed. As noted earlier (post:Daaaaddddyyyyy), my daughter can not get enough of her daddy so if she sees him during a drowsy time it immediately becomes play time. He wants to leave the bed so he can have a few more minutes of rest. 


We have had our nights of crying every 15 minutes but we battled thru them. Because Sloane has been sleeping well, when she does have a difficult night...the boxing gloves come out btw the both of us! It could be a soaked thru diaper, a tooth, reflux, bad dream, separation anxiety, over-tiredness or plain old screams of I want out of this shit-hole!! Whatever the reason, we do have nights that are less than peaceful.  I am more accepting of Sloane's sleep issues as I should be (or the public thinks I should be) because I am the stay at home mom. "You don't have to go to work." HAHAHAHA I love that one!!! I work harder with Sloane than I ever have in my life. Oprah was my hero when she asked a guest: do you work in the home or out of the home. That's right Oprah....you get it!!! I work in the home.


Anyway, nothing said between 11pm and 6am counts. And it is a good thing because it can get nasty. My hubby does not sleep or he is the lightest sleeper I know. I, on the other hand, am dead to the world. Sloane is kicking my ass most days so by bedtime I am a zombie. But I don't work so I have no freakin' idea why I am so tired??? My hubby, because he is nocturnal with a variety of nasal issues, hears everything before I do. Many nights/not all nights, he is up and out of bed on his way to Sloane's room by the time I sit up. For this, I take some heat and not body heat. HA There is usually a expletive and a huff and puff as he rounds the corner. I don't quite understand because if he waited 10 more seconds instead of being the perfect knight in shining armor I would "be the mama" and take care of the Sloane's situation. Instead he band aids the evening's sleep and comes back to bed with a few choice words which he decided should not count.


This morning at 5:45 the rule took root. Sloane woke up with a soaked thru diaper. I got up because I was already close to waking and awaiting her call out. After she was dressed in fresh pjs, we headed to momma's bed and snuggled in. My hubby got in the shower EARLIER than normal and proceeded to blow his nose many a time which caused my little angel to start yelling and screeching "daddy" with excitement. All I could do is think....the nose blow really?? 5 feet away from us when you know she is already awake??? really?? You know she is going to hear you, want you and attach herself to you like velcro when you are trying to leave for work!! really?? a nose blow?? And so the gloves came off! Thankfully, the aggravation on both sides because we BOTH did not want to start our work days hearing ""Daaadddddyyyyyyy"" only had 15 mins to heat up!!! 

A Home For 50 Days

The paperwork came in this week for the March for Babies. Team Sloane raised a good amount of money last year so I am hoping to up the anti this year on April 28th. I did not know much about the March of Dimes before we nestled into our NICU stay. I had no idea that they are the people who help make our babies healthier. They will forever be one of my charities of choice. 

I had not had anyone in our circle of trust who had a preemie or a baby with a medical need. We had no experience with the NICU at all. I will never forget July 24, 2010. At 10am, I was packing up to bring my baby home and at 12pm, I was sobbing crying on the floor of a sterile room while my daughter laid on a stainless steel table on O2 with just a diaper on. The sweetest intake nurse (I soon learned all the terms) Jennifer told me that Sloane had pneumonia to which I started crying....the bad sloppy cry. I am pretty sure my husband picked me up off the floor. It was a Saturday so it was a quiet day in the NICU. A pregnant doctor came in and said Sloane was being started on antibiotics and would be checking in for the 5 star treatment for 7 days. They needed to find out why my 4 day old baby had pneumonia.  What happened next saved me. Sloane became the primary patient of a seasoned NICU nurse who became our everything. Our nurse, our therapist, our friend, our translator, our advocate, our parent at times and most of all Sloane's protector. I can not imagine what Donna was thinking of us that first day. We must have seemed like scared children who were really professional adults. She sent us home to get our belongings so we would be more comfortable. She was going to take care of Sloane. For the minute, I laid eyes on Donna I trusted her. She held my baby and my hand during almost all test and medical procedures during our time in the NICU (post: Are We There Yet). And so we went home to bring and get our belongings. I packed for 7 days little did I know for once in my life I had under-packed. 

 I was in shock. I am convinced of it now. I did not understand what was happening or why it was happening. And then it happened...I shutdown. I stopped talking to anyone aside from my hubby and NICU staff. I was afraid to open my mouth because I was afraid at what would happen. Would I throw-up, would I cry, would I scream? I wasn't sure. My husband made all the phone calls. When we came home to get our things, we saw one of my very closest friends and I said not one word to her. The girl who watched me grow for 9 months, the girl who cried like a baby when she held my baby, the girl who my daughter would call auntie...that girl, I walked passed like I didn't know her. I couldn't speak. We also saw my aunt and uncle. Like a child, I hid in my bedroom trying not to have to speak to them. I was devastated that my child didn't come home with me like everyone else I knew, rip roaring fucking mad because wasn't I the girl who lost her mother...couldn't this just happen normally?? and embarrassed that I had done something wrong during my pregnancy to have caused my child to be sick. My husband called my brother and he asked to speak to me. I just sobbed and sobbed and snorted and hyperventilated over and over again. After that, no one. I spoke to no one for days. I did email after 2 days....that seemed easier. When I think back now to our circle of trust and how removed they must have felt..I do feel badly. I shut them out when in fact they deserved to know what was happening since they too had waited 9 months for our child's arrival.  The unexpectedness, unpreparedness of Sloane's birth defect...shocked me. The day it changed was the day they told me Sloane was getting a NG tube, and then I called my father and my dearest friend like a baby myself begging them to come.  I was in shock that something was wrong with my dream come true daughter.

It did get better as time went on. I immersed myself in my new home. My hubby and I slept together there nightly for  weeks. When we learned that pneumonia was the effect not the cause, I starting staying around the clock and he went back to work coming to stay with us at night. The tests began, the diagnosis came and the healing began.  Our days did become normal...this new normal for 50 days. We made friends with another family whose son was in the NICU much longer than Sloane so they were very helpful to us. We joked with our nurses, we ate in the lounge, we learned the security guards names, introduced ourselves to new families, and we lived from rounds to rounds listening to the drs. talk about our child's progress. I emailed our circle of trust daily with updates and we little by little let a few people visit Sloane. Poppie came everyday to see his granddaughter. His visit became a hi-light of the day. Everyone respected our privacy but did anything they could to help us out. We had dinner delivered, gifts given to us to decorate Sloane's NICU room, we were given rides wherever we wanted, our lawn was cut, we were forced to go out for dinner, and our house was cleaned. If they couldn't be with us, they would do for us. I will never forget any of it. 

The NICU is a wonderful place. It saved my child from coming home and having months of pnuemonias before getting a diagnosis. It taught me to be a more in-tune parent. It educated me in medical lingo. It gave us confidence to be the parents of a child with a medical need. The NICU is a place. The nurses who work at it saved our child, mothered our child and nurtured our child. Thank you all the powers that be for the NICU, its doctors and most importantly its nurses.

Forget???? What?!?!?!

My husband and I saw some friends last night that we had not seen in a year or so. It is always nice to see them. They just had their 2nd child. The husband politely asked my hubby how Sloane was in terms of her laryngeal cleft. My hubby gave him an update on Sloane's progress to which he replied "someday, you wont even remember this happened."

We have heard different versions of that statement since Sloane was born:
this will be a distant memory soon enough,
when she is older, you won't remember these days
so many things will happen in her lifetime, this experience will    fade away

I can not say any of those statements make sense to me. How will we forget everything that has happened in these 18 months medically (post: Are We There Yet) or how will we forget that our child had a feeding tube? I do not think we will ever forget or will want to forget it. This experience has shaped us as a partnership, family and parents.

I am sure people do not know exactly what to say to us in regards to the cleft. I know everyone means well and are trying to be kind. When my hubby and I talked about the comment this morning. He looked at me and asked what I thought the husband should have said. I couldn't come up with an exact answer. I thought about what I would have said if the rolls were reversed and I was still at loss. The truth is that there is nothing that anyone can say to us that will feel right..unless they have walked a day in our shoes.

A Mom For Rent?

I have been getting more familiar with my blog these past few days. I was unaware that this site tracks how many page reviews I get each day. Yikes!!! Checking my stats has become addictive. I am happy to see that some people are following along even if i don't know who some of you are! I will say that I wish I had started this blog earlier. I have some distant friends who blog their daughter's health progress and I was initially blown away by their courage and openness. I understand now what a gift they not only gave their families but a gift they gave themselves.  Blogging could have been/is a great way to share info on Sloane's journey with all the people in our circle of trust...we could have saved lots of texts, emails and phone calls. I'm thinking from here on..this will be it!! No more group text!! I'm sure some of our followers are thrilled to hear that.  I love to document info or rather publicize it as my hubby says!

There is a reason for all the documenting happening in our house that may not make much sense to anyone but me. I do not have a mother. I miss my mother and her mothering everyday. I believe a mother fills in all the gaps for you. She holds your memories as secure as a treasure box. A mom documents your memories in her heart. Since I lost my mother 15 years ago, I have been trying to fill gaps in my life. Something as simple as "what time was I born?" became an investigation for me. I asked everyone and most times didn't believe them. I needed it from my mom...written on the back of my 1st baby picture in her handwriting. Case closed. I do have a wonderful father but a father is a father and a mother is mother. My dad, as most men in his generation, does not recall the intimate details I long for.

Becoming a mother has made the fact that I am motherless even more emotional. My mother and I had a very healthy parent-child-friend relationship. It is very difficult for me to be mom without having a mom.  I do have many "mothering woman" around me that are the closest thing to a mom I can have. I am blessed with a heart full of love from these woman. I am sure there are times that their own children get tired of me borrowing their mom. Times when I call with too many questions about having a child. Times when I share the silliest info about Sloane with them. Times when they get frustrated because as open as I am, I won't let them in completely. My mil just reminded last week that it is okay with her her if I call her mom. We had a very nice chat about it.  I have tried to work on my walls but I am forever motherless. That is not to say Sloane is grandmother-less. My daughter has 2 amazing  grandmothers (nonni & grammie) and a ti-ti that loves her as her own. Sloane does not have a gap anywhere. My female family/friends all have wonderful mothers and I envy all of their relationships. I watch them share days with their moms, I watch their moms come to their rescue countless times, I watch them share their lives with their moms and I am beyond sad. I long for that. I have actually been known to borrow a mom, that is not related to me, from one of my friends. To me she is a mom through and through...4 children, 3 grandchildren. She has seen it all. I call her for advice, thoughts, and general questions.  I am sure her own daughters think I am nuts for calling their mom, but she always graciously accepts my questions and re-affirms that I am mothering Sloane just fine. For me, in my heart and mind, no one does things the way my mom did so I ask all the mothering woman around me and then compile what I think my mother would say.  Most times, when I have an issue with Sloane, babysitting or being a new mom...a resort back to the childish saying "if mommy was here...." When I am at my breaking point, I call my brother because he gets it.... without any flowery words....he gets the rawness of it.  Being a first time mom is emotional enough, not to have the woman who mothered you in this world to guide you along can be a loaded gun!

I document, I publicize, I journal, I label, I plastic bin. I do all of these things so if Sloane is ever motherless, she will not have gaps. I never want Sloane to feel gaps as I do. She will not need to investigate. She will see her world documented in her mother's handwriting. 

Slow & Steady

I get lots of questions about what exactly Swallowing Therapy is. It, I have been told, is very new age!! Sloane is on the cutting edge. As is we didn't already know that??? 


Sloane's level 2 cleft was repaired in March 2011, but she continues to aspirate liquids. We know this because of her her failed swallow study in August. Since seeing Dr. Rahbar after that swallow study, we have started his specialized swallowing therapy. To back track a bit, in Sloane's case, a liquid are considered to be something as thick as yogurt to something as thin as water. At that swallow study, she was unable to eat yogurt with aspirating. Meaning, she showed evidence of aspirating all foods/liquids other than solids. This was shocking because she had been eating yogurt for months with no issues. We discontinued everything except solids from August until November when we started swallowing therapy with a speech pathologist. The good news is that there are no issues with Sloane's mechanical swallow or eating habits. She has perfect timing and all her parts work as they should. The bad news was in spite of that and a closed cleft, she is still aspirating liquids. In years past,  SLPs were  perplexed on how to help a child like Sloane, but Dr. Rahbar was worked with them on an approach.


Therapy is once a month and we are sent home with homework!! Right up my alley!! lol Our therapist puts Sloane in a high chair, watches her eat and perhaps take a sip of a thickened liquid via a spoon or sippy cup (if Sloane cooperates). That is it folks!! That is what I have been keeping from you. There are no tricks or special devices. It is basically a schedule of how to introduce less thickened liquids to Sloane. Our SLP gives up guidelines, recipes and ideas. At home, I know if Sloane is aspirating if she coughs, gurgles, sounds throaty or gets read around her eyes.


When we started swallowing therapy in November, we re-introducing the yogurt to Sloane, then in December we thinned out the yogurt by adding 2 oz of whole milk to 8 oz of yogurt and gave that to her by spoon, next in January we worked on adding a sippy cup of that thickened liquid to our daily routine, and this month we purchased some Simply Thick and started giving Sloane a variety of thickened liquids. She does ok with using a cup. It is very different for her. She has never had anything in her mouth that expelled liquid.  "Some days you feel like a cup and some days you don't." HA We are working on sips of thickened liquid right now. It's a learning experience for us all. The goal is for Sloane to someday consecutively drink milk or even water. 
                      Slow and steady is the motto!!! 


Drum roll please.................
Sloane drank 4 oz of thickened half water/half juice for snack today!!!!!! YAHOO!!!  Scream it from the roof tops!!! We didn't plug in for water!! She needed some coaxing from one of her best friends in the world, but she did it!!! In our home, this is huge progress. Maybe it won't happen tomorrow, but it will happen again. I know my kid!!! She will take that sippy cup and show it who is boss!!! It has taken almost 1 whole year from surgery to get to this point. 365 days!! That is 1,460 tube feeds!!
                                      Slow and Steady!!!

Bringing Bald Back

So I found a blog that features a rare childhood birth defect every Monday. This blog was started in November of 2011 and guess what the 2nd birth defect to be featured was: the laryngeal cleft! That is probably because a laryngeal cleft affects less than 0.1% of the population. Every entry has a child's story to go with it. I commented on the blog about a sip of heaven so maybe the mom would follow our story and share her experience as well.

Through all of our research, I have never had a conversation with another parent. I have not wanted to. I am the type of person who needs to experience things for themselves. War stories weren't something I was ready for. I did join an online support group when Sloane was 1st diagnosed and every time I read others stories I became more and more upset. It was just too much to take in. I THINK if I knew Sloane was going to be born with a medical need, I would have been more open to information. It took a long time to work through the emotions.  I feel now that I am educated enough and have had enough experience with our cleft to open up a bit. I hope!!

We are officially on lock down. One of my friends has 2 boys. Her entire family of 4 had the stomach bug this week. When I spoke to her, she was quite clear about how horrible it was. She strongly suggested that I stay clear of germs and people as best as I could for Sloane's sake. I agreed as the croup is dwindling away and the intestinal issues have stopped in our home. We did head out briefly today for some java. Let me interject and say that my hubby, father and brother love to joke about how I can never stay home for just one day. I say "why should we?" Anyhow, we stopped at Starbucks this am. First off, I noticed they are open until 10pm. Forget Barnes and Noble next time I need a pseudo mother's den to hide out in...I'm going to Starbucks. While we were waiting for our treats (skinny cafe latte for me and a banana for my little lady), a very together, well dressed man asked, "how old is your son?" Now, lets be clear. Sloane is not adorned in hair ornaments because she can't be! Her hair has just started coming in! We like to say, she brought bald back. Which is completely odd because I have a bouffant on my head and hubby has a head of hair that many of my own family members would die for. Our child will be 4 before she has some serious locks. Back to the man; Sloane had her pink coat on that has sparkles on the hood, a pink eyelet tunic, and white patent leather Ugg mary janes (a gift from the most fashion forward 15 year old I know...thank you!!). Aside from the clothing, I have been told by many people that my daughter has very girly features. Yet, this man didn't know Sloane was a girl. I replied, "she is a girl" and he said, "oh?" with curiosity!!!! Seriously??? What is wrong with people??? As I walked to the car, I thought maybe I should have stayed home today!!!

What Ifs

Since I have been outed by my husband, I decided to invite a few more friends in to ride our journey. And so the questions have begun about "blogging". I need to say that I have no clue how to blog. In the past 18 months, I have researched different situations in our family and have found blogs that have inspired me enough that I continued to follow them weekly. Sunday night was the night that I checked in with my friends in the blog world and found out the happenings in their life! It was/is my guilty pleasure usually accompanied by a Skinny Cow vanilla ice cream sandwich! I shared my interest in a certain blog with some friends, but they didn't seem to get drawn in the way I was. I was hooked!! Some people like American Idol; I like blogs!! I am sure in the therapeutic world that means something. Add that to list of my issues!! When I decided to blog, my hubby & an old friend (aka: the computer geek) helped to get the ball rolling. I hope this blog draws others in who may need inspiration from 1st time parents of a 19 month old born with an unexpected teeny tiny very rare birth defect or at the very least get a laugh from reading about a mom who is trying her best to stay afloat in her world!! lol


Today, I left Sloane with one of her aunties for 2 hours. Not a big deal to most moms of a 19 month old, but a big deal to me. Why? Because there was a feed involved. A tube feed that is!! I had no concerns, no worries and I didn't look back once. Quite a change from a year ago!! My hubby and I have a very small handful of people we trust to run a tube feed. We try VERY HARD to not be away for a tube feed because we truly do not relax until we know Sloane is vented and unplugged. Sometimes, if we don't want to deal with the concern, we simply omit the tube feed and give our babysitter a break from listening to our directions, rules, concerns, and play by plays. There is always a little voice in your head saying "what if ?" when a tube feed is happening and you are not running it. Sloane's mickey button has been pulled out on us on 4 different occasions. It is not a relaxed experience and we would never want that to happen on someone else's watch. We very quickly learned that replacing a mickey button to us is as normal as another parent brushing their child's teeth. You don't believe the doctors and nurses when they tell you "one day, you will do this without thinking" but it is true.  I cannot say the same about the NG tube or nasogastric tube. That tube goes down your child's nose into their belly. I tried many time to insert the NG tube but I could not do it. Although a g-tube is not ideal, it is a much better fit for our family than a NG tube. 


It has taken months for us to realize that when Sloane eats solid foods, she is NO different than other children so oral feeds aren't our concern when we leave her. We certainly do not leave thickened liquids, sippy cups or juicy fruits for others to feed Sloane. We have a no choking policy. How ridiculous is that? Other parents have a standard no candy or soda policy. We have a no turning blue policy. Choking is something we save for ourselves. It has happened to us in the past. We have called 911 and we now have a CPR cheat sheet with our basket of baby books in our kitchen. Normal right?


Anyhow, I left today without a worry. I knew the auntie had it covered and it felt good. She is one of Sloane's super aunties!! Leaving Sloane was something I had to work at, it did not come easy to me. The cleft, the aspirations, the reflux, the feeding tube, and the possible choking made it almost unnecessary. Now I can say, because of the incredible circle of trust around us, on an average week, I leave Sloane during waking hours about 6 to 8 hours. Somedays it is an easy task that I gladly welcome, other days I am consumed with "what ifs?"

Are We There Yet?

It is day 14 of blogging!!! And I have to say, I am enjoying it. I should have listened to my MIL and started this a long time ago. I thought now would be a good spot to post/reflect in A Sip Of Heaven on the 18+ month journey we traveled with Sloane in a time line fashion. 


A laryngeal cleft in many circumstances is not diagnosed until months or sometimes years after birth. We thankfully were much luckier than that. I feel incredibly for those parents. From my research, I have read that children whose diagnosis comes later in life suffer through days, months, years of pneumonia after pneumonia with no known cause. I cannot imagine!?!? 


Sloane was diagnosed at day 13 of life!! A Remarkable Blessing! 

2010
7/20: Sloane arrives
7/22: Sloane turns blue while nursing in normal nursery
7/24: Sloane is transferred to the NICU and is promptly put on oxygen and antibiotics for her pneumonia. Because Sloane was aspirating her liquids therefore filling her lungs to pneumonia, each time she ate her oxygen level would dip into the 60s so O2 was necessary.
7/26: After a team of doctors/SLP watched her nurse it was determined that a nasal feeding tube will be placed in. Sloane no longer safely take food by mouth at day 6 of life.
7/27: 1st swallowing study
7/28: Upper GI barium Swallow
7/29: Beside Soft Scope with ENT
8/2: Bronch Scope with ENT. We get a diagnosis of a mild Level 1 laryngeal cleft. We were told it could be called a deep groove not even a cleft.
8/18: 2nd swallow study
8/23: Reflux swallow study for gtube surgery
8/24: Nuclear Medicine Reflux Scan
8/31: G Tube surgery
9/10: Sloane comes home FINALLY at 7 1/2 weeks old.
9/12: Visiting nursing 2X week begins
9/13: Ped appt.
9/16: Ped appt.
9/22: Early Intervention Intake (this was a hard one to handle...another post, another day)
10/1: ENT appt. to discuss plan of action for laryngeal cleft
10/6: Surgical follow up for gtube surgery
10/9: Early Intervention begins weekly
10/13: Mickey Button placed in
10/20: Ped. appt.
11/3: Swallow study #3 & surgical follow-up for mickey button
11/9: Developmental Assessment (for all NICU babies)
11/10: ENT appt. to discuss results of swallow study
11/22: Ped. appt
12/6: Brain CT scan for geneticist because laryngeal cleft can be part of a syndrome. It was clear so it was determined that Sloane's cleft is an isolated birth defect.
12/10: Feeding therapy
12/13: Radiesse injections into Sloane's cleft to try to fill the gap. Once ENT went into Sloane's airway again to inject it, he changed her diagnosis to a definite Level 1 laryngeal cleft
12/22: Swallow Study #4 & ENT appt. to review results
2011
1/20: Ped. appt
1/25: CADD clinic appt. at Children's Hospital in Boston with Dr.Rahbar & Dr. Rufo. Dr. Rahbar does a bedside soft scope and states that he THINKS Sloane's cleft is a Level 2
2/9: Surgical follow-up for mickey button
2/23 Hearing screening (for all NICU babies)
3/3: Pre-op at Children's Hospital
3/7: Bronch Scope by Dr. Rahbar & biopsies of GI track by Dr. Rufo bc of Sloane's severe case of reflux. Dr. Rahbar reports to us that he surprised because Sloane's cleft is a very deep a definite Level 2......almost a Level 3
3/14: A scope of Sloane's urinary track bc of an earlier uti
 (the most painful thing I have ever seen done to my child)
3/25: Pre-op at Children's Hospital
3/28: Cleft Repair surgery by Dr. Rahbar. All went well. We are sent home a few days later and continue with our no liquids approach.
4/22: Ped. appt.
6/21: Follow up with Dr. Rahbar after surgery. She has a bedside soft scope and it shows that  Sloane has healed great. We can begin to slowly thin out thick liquids and see if she tolerates them until her swallow study. Sloane does AWESOME all summer long. We are giving her yogurt, ice cream, and juicy fruits.
7/13: Gtube feeding clinic for help with managing feeds because Sloane is eating solids.
8/4: Ped. appt.
8/22: Swallow study after surgery to see if her cleft has been repaired successfully. Sloane aspirated EVERYTHING except solids. DEVASTATED cannot come close to how we felt. Sloane is to be taken off all foods/purees. She can only have solid foods for now on. 
8/22: Dr. Rahbar calls. He too is surprised. Suggests we look at Sloane neurologically since her cleft is healed perfectly and she is still aspirating. He says "she could have a neurological problem" I was a complete DISASTER.
8/29: Neuro appt. at Children's Hosp. Doctor suggests an MRI to rule out 2 brain malformations
9/14: Feeding therapy
9/28: Brain MRI. It comes back perfectly normal!!!!!! I like to say now that is Sloane gets anything below a B-; we will have to take measures because that means she is not trying her best! We have proof that her brain is perfect. It is confirmed again that Sloane's cleft is an isolated birth defect and she has no other related issues.
10/25: Follow up with Dr. Rahbar after failed swallow study and perfect MRI results. He suggests that Sloane has neuro/muscular discoordination because of the abnormal anatomy she was born with and that we need more time and specialized swallowing therapy.
11/9: Ped. appt
11/22: 1st appt. with swallowing specialist  at Children's
12/21: 2nd appt. with swallowing specialist  at Children's
2012
1/6: 2nd hearing screening (for all NICU babies)
1/25: 3rd appt. with swallowing specialist at Children's
2/10: Ped. appt.
to come:
3/7: 4th appt. with swallowing specialist  at Children's
4/3: Follow-up with Dr. Rahbar after a few months of swallowing therapy 


As I was typing this I realized again why I feel different that than a parent of a child with no medical needs. It is because I am. I am not the normal parent that cries when her child gets a shot or only goes to the schedule routine monthly well visits.

I am the parent that has watched her child be terrified, tortured, and violated.
I am the parent who holds her child close and says "its ok, mommy's here" when someone is doing something painful to her.
I am the parent who has handed their child over many a time to a stranger.
I am the parent who has held their child until the anesthesia has taken.
I am the parent who has slept in an ICU crib with their child so she stays calm.
I am the parent who has a child with a life altering birth defect.
I am the parent whose entire life revolves around their child's health. 
I am the parent of a child who AMAZES me with her fight EVERYDAY!!!

Daaddddyyyyy

I am so tired right now I am not sure if this post will be full of wisdom. My hubby just said I should post about how:

1. he didn't have dinner tonight
2. he slept on the couch last night because Sloane had diarrhea all night (on top of the croup) and was in bed with me
3. he is exhausted

I could post about all that but who really cares.....I say welcome to parenthood, babe!!! Dinner and comfortable, deep sleep are a thing of the past!!! This is the big game!! Put on your big boy undies!!

Instead I will say that my hubby put "hard time" this weekend as he calls it and is justified in stating #1-3. In addition to caring for a sick child all weekend, his main job was to be a marsupial.  Sloane ADORES him. It appears that her favorite place to be is in his arms or on his lap. She will watch him do anything. I can honestly say she doesn't give him a break. When he is home, she ALWAYS wants him. "Daddddyyyy" is what we hear constantly through the day. Sloane and her dad have something special. He is wrapped around her tiny finger. SJ will let him do all the things she gives me the hard time about. He can easily clean her ears, check the balloon in her mickey button, suction her nose, blow dry between her toes, and of course get her to eat something new!!  She is a daddy's girl thru and thru. And for that, I am thrilled. I continue to be one 39 years later!! My hubby is a fabulous father...hand sanitizers and all!!! Here's to dinner tomorrow night??

A Plan Anyone?

What have I noticed about parenthood lately? It is that plans have no roots. Sloane has been hit hard with illness lately. She was beyond healthy last year (she remained illness free her entire 1st year). This winter not so much. Everyone tells us we should consider yourselves lucky because she has not been sick very much for an 18 month old. Which is true. It just so happens that in the past 2 months, I feel as though we have made up for it!! 

Well, the ped was right and we are battling our 2nd bout of croup. It sucks but we did hear the magic words this morning: "her lungs are crystal clear." See you later...mr. fear!! 

We had all sorts of plans this weekend that are now gonzo. A parent makes plans and a child laughs!!! That's a new version of a phrase my brother says. In our home it translates to:

Say hello to the croup mom and dad. Say good bye to drinks last night with 2 of our favorite people, say good bye to lunch with the aunties, and say good bye to date night. We made plans and Sloane giggled at us...she reminded us that in parenthood there are no plans that are set in stone. 

Well, my hubby decided to let the cat out of the bag with my family and friends about this blog. He says he is very proud of me. I think he didn't want to be the only follower I had. LOL  It was all ok when my thoughts weren't be shared with people I see everyday. A blanket of OMG came over me when I found out he outed me and then I thought???....there isn't one of my family members or friends who would be able to put their hand on the bible and state that they didn't think I had 1, 2 or 10 issues. I mean let's be honest...these people know I can be a bit complex at times. 

So our circle of trust, the people we rely on daily, the ones who love Sloane as if she was their own, the group that care about her every sip, the individuals who have enough pictures of her to wallpaper their house....those amazing people are getting an in depth look into what can happen when first a motherless daughter, then single working chick, turned married lady has a baby with a teeny tiny birth defect...all life's plans get ripped from their roots!

One Wet Cough

We were awake today at 3:15 am and every 10 minutes after that until 5:30am. I have no idea what is happening to my angelic sleeper. Sloane cried her way thru her way last night. We have no idea what is going on. Teeth? Reflux? Nightmares? Separation Anxiety? Sloane came home from the NICU sleeping thru the night. When we would plug her in at 3 am, she would sleep right thru it many nights. A trained sleeper was on the bonus package from the NICU. I may need a crash course from them to get back on schedule. Sleep deprivation is mind altering. 


I think now is a good time to mention that when Sloane came home from the NICU 7+ weeks after her arrival in the world, I was not alone with her at all. I am not embarrassed to say that I was afraid to be. When SJ was 1st transferred to the NICU for turning dusky (aka BLUE) while she nursed one night, I became afraid of her. I can remember telling the neo-natal specialist in tears "I am afraid of my child. Do you know how that feels?" As time went on I wasn't afraid of Sloane any longer. I was just afraid. Thankfully, we had a contingent of women and men around us willing to help. There was actually a schedule for the first few weeks so I would have company. My husband was traveling for work therefore I always had someone staying with me. As time went on, that dwindled away. And life in our home became normal..... if you call me going to bed at 8 and setting an alarm for 2am to take over so my husband could sleep 2am to  6am?? While Sloane was on the tube during the night, sleep wasn't an option. The schedule was grueling at the very least. I don't know what we would have done without our families and friends during that time. 


Once you child turns dusky/blue in your arms, you have that memory etched in you. It is what I always fear. I can remember the night vividly. Sloane's day 3 of life. My cousin, his other half, and one of my dearest friends came to visit us at the hospital and I couldn't compose myself. I just cried and cried. I think I knew deep down that something was wrong with my daughter and that's when the fear began to grow. 


Today that fear came crashing back. The moment was ordinary...a diaper change that was accompanied by a loud wet cough. At first, I thought it was reflux but then it followed by a few more. I carried on trying to ignore the fear building inside. We began our all girl's day with cuzzy, her mom, grammie and ti-ti. Of course, I mentioned the cough but by then there was a husky voice and a slight wheeze.  I look to one of the seasoned moms to put my fears at rest but by the end of the day, they too were concerned. During the course of the drive home, Sloane begins to sound like Darth Vader and I am physically sick to my stomach. At this point, I am so afraid that I can't get myself off the edge of the cliff. I am right back to the mom of a 3 day old who turned dusky. I am overcome by the possibility that Sloane may have a respiratory illness and that would open the flood gates to ???On my drive home, I am physically telling myself in my head that even if Sloane has pneumonia she will not turn dusky and stop breathing. I am scarred. One wet cough, one sniffle, one wheeze can send me to the edge. If you have a child with no medical issues, it is something that I can't explain or share with you. I know it is irrational. 


So here I am, waiting for the next 13 hours to pass quickly. On high alert as we call it. The ped thinks we may be battling our 2nd bout of croup this season which pisses me off since we just recuperated from hand, foot, mouth. I don't get. I know we can't live in a bubble but somedays it would be easier!!! We will see our ped in the morning to get the diagnosis. At that point I will put mr. fear back into its special place in my heart.

The Tube Supersedes All

I am a working girl. Always have been! I had worked 16 years as a teacher before I had Sloane. I can honestly say that I loved my job. Of course there were bad days, but overall I enjoyed going to work everyday. Before I had my daughter, my job defined me. My students were my children. I spent more time with them than anyone else in my life. 


When we had Sloane, I was dying to stay home with her for one maybe 2 years and then head back to my classroom. I had made my intentions clear to my husband on our 1st date. What's funnier that or the fact he continued dating me??? Now, the fact is that going back to work sooner than later may not be the case. My hubby and I have made a decision that the tube supersedes all in terms of my job. The reasons are ones that we both agree upon. While Sloane has a feeding tube, my job will be to be home with her. I am by no means complaining, I love being home with my daughter. This job far surpasses anything else I have ever done in my life. Being a mom is the hardest job in the world. Many days, Sloane is more challenging than 18 school age children. I used to wonder what my friends who were stay at home moms would do all day. I would think: don't they get bored, they must get to sit and relax. Boy was I wrong!!!!!


Last night, some of my colleagues were on national television speaking about a reading program that I taught while I was in my classroom. It did make me miss my students and the fulfillment you feel when you see a child learn something right in front of your eyes. Almost simultaneously, my father called and we were chatting our his granddaughter. I was telling him a story that explained why I think Sloane is a child who "connects the dots." Her feeding pump and tube were on the floor and she was investigating it while sitting on my lap. A few minutes later, she proceeded to lift her shirt and bring the connector piece to her mickey button. I was in awe for 2 reasons. 1. I don't think I was ever aware at how much babies/toddlers learn so quickly. 2. It was obvious that Sloane now knows that her button is something to explore.  OH DEAR!!!! Anyhow, my dad's response to my story was "she's smart, she's smart because you are always with her. do you know how great that is" I dismissed the comment quickly.  But it made me think does the tube supersede all for me or does motherhood? 


Whichever it is my job now is motherhood and it will be that forever! I have a friend who says "Listen, they aren't going to put on your tombstone whether or not you breastfed, got back into your size 6 jeans w/in 3 months of delivering or that your baby was a genius. It is just going to say that you are a mother." Amen to that!!!!

A Rookie Mistake

Today was what my hubby would call a rookie mistake. We left the house early today to do errands. The breakfast tube was at 8:30 so lunch would be around 12:30. I thought we would be home by then and decided not to take the tube. Packing everything up seemed like an unnecessary chore today.  I'm not sure what exactly I was thinking. Anyhow, we weren't anywhere near home at 12:30. In the past, this would not have mattered as much but we have transitioned over to one nap around lunchtime and I could tell Sloane aka SJ was fading fast today. She was going to fall asleep without lunch therefore hungry so the nap wouldn't be rejuvenating enough.  If you have a toddler on a tube, you know that long gone are the days when you could plug them in while sleeping without them waking up. What to do???? I decided to make a pit stop at one of my favorite local spots for lunch. I threw caution to the wind and fed SJ her oral lunch without a tube knowing that she can now drift into dreamland as she pleases with no worries. 


Rookie mistake.... not taking the tube. I did wonder today if SJ didn't have a tube, would I have an empty bottle in my extras box in my truck or would I have been in the same situation.  Is it easier for children who can drink by mouth? Or do I just imagine it is because this is all I know? Unexpectedly missing a tube feed isn't the end of the world, but it is an adjustment for me when the past 18 months have been built on a schedule built by myself and SJ's  medical professionals. This is what you do when you can't control your child's health...you try to control every other aspect of their life to remain sane. 


As for lunch...it was an example of coming full circle. Where we had lunch today was the sample place that I ate at least twice a week when SJ was in the NICU. It was meaningful going back there for the first time with my daughter for a mommy and me lunch!

Are You Stronger Than A 19 Month Old?

It is official! My daughter is stronger than I am. The binky/pacifier has been part of our life for just about 19 months. Once she was taking no liquids by mouth, we were told by the doctors to stick the binky in her mouth all day everyday. The thought was that she would develop her swallowing abilities because she wasn't swallowing anything other than her saliva. So the binky was a permanent feature much to the dismay of many.


 I had thought we would take it away at one year, but then we decided to wait for her next swallow study to have factual information on her progress since her cleft repair which was at 13 months. Once she aspirated on that swallow study, we held the binky close.... almost like a security blanket. It was then decided that she needed an MRI to see if her aspirations were neurological since her cleft was successfully closed.  My Go To Mommy (everyone needs one!!) suggested not to take the binky away seeing as though brain surgery may be in the future if there was a neuro issue. There wasn't a neuro issue. Thank the Heavens!!!!  


So somewhere around 15 months the binky should have been sent to the binky fairy. We had heard it all along the way: take it away before she starts asking for it, take it away before she names it, take it away she is too big for it, and it is going to mess up her palette and teeth alignment. Well we didn't. Why? because we didnt want to upset the apple cart.  One day, I was flipping through People mag and saw a pic of Sarah Jessica Parker's 2 1/2 year old daughter with a binky her mouth. That made me think...why should I take away Sloane's at 15 months when celebrities let their kids have them!!! LOL Yet another excuse!!!


What did I do instead of making it magically disappear? I took baby steps and weaned her off it. The binky was only around for nap time and bed time. Of course, there was the occasional boo boo or melt down that required the Save Me binky!!! 


Well this past week, I have noticed that Sloane has no interest in the binky. Not at nap time or bed time. I think my 19 month old is stronger than I am and has weaned herself off her binky. Could it be because she just got over the Hand, Foot, Mouth Virus (very fun...not) and had no interest in swallowing at all. Could it be that she has started to take a small amount of thickened liquid via a sippy cup a few times a week? Or could it be that she just knows, unlike me, that she is a BIG girl!!!

The Other Girl

As I was jogging today at the gym, I reflected on something. I was coming up on 2 miles and feeling good. I mentally felt like the old me; physically not so much!!!  As I found my stride or rather pant, I thought about the old me...the other girl.

 Before I write any further, I would like to say...I only get time to go to the gym bc of 2 very special pp in my life who watch Sloane for me. My hubby commutes for work and his day is much longer than it should be so I have to rely on others to have some time away from Sloane. The gyms happens a whopping 2 times a week although I am not complaining. I love getting to go!! The working out thing has always been part of my life but you would never know it. I should look like a playboy bunny as a result of all the hours I have logged in at a gym these past 20 years. I don't and its not because of the pregnancy. I have always double digits away from a size 2 if you get my drift!!

Anyhow, I have decided to publicly apologize for being the other girl in my past. You moms know that other girl!! The one who doesn't have something besides their job and/or husband in their life filling their time. The girl who has a weekly standing nail appt., goes to the gym nightly, goes on sexy vacations frequently, sits on the beach with a girlie book for days on end, and buys new clothes just for fun. I was that girl for years and she is as fabulous! I remember her and love her. She was as fabulous as this girl who is now a mom. Its just a different kind of fabulous. "Mom Fabulousness" for me is something that can't be explained in words. Nowadays, my nails are on whim, the vacations aren't happening, a beach? what's that, and I need personal shopper to help me buy clothes but I wouldn't trade it in to be the other girl again. I loved her but I have moved on.

 So to my friends who had children long before me...if there was a time when I was that other girl to you on a not so great day...I Am Sorry!! Maybe it was a day when you had to hold your eyes open with toothpicks or on a day when your witching hour was bringing you to tears, or maybe it was a day when you missed a shower or maybe it was a day when your only luxury was a drive thru coffee. Whichever the day....I know now what fabulous means in 2 different forms!!! Thank you for paving the way.

A Tubeless Afternoon

We had a family commitment today and it was decided that we would go tubeless!! YA-fucking-WHOO!! Not exactly as exciting as going topless for some, but for us, it was relaxation in its purest form. We were with our family and friends and there wasn't one on edge moment. Why? because the tube stayed tucked away in Sloane's travel bag for the day. We fed her, hugged her and played all day without a moment of intensity between myself and husband. The tube creates high alert btw us when it is on the job. There is always the fear that it will get tugged on or that Sloane will grow completely aggravated because everyone else is having fun and she is chained to a highchair for too many minutes, or that its appearance sends a message that the fun games are over. I have sarcastically joked before "its all normal until the feeding tube arrives!".  Now, tubeless days do not come too often. So when they do arrive we soak up every minute. After Sloane was tucked into her car seat for our ride home, my husband looked at me and "what a nice day. fantastic food." And I said, "it was so fun." Neither of us mentioned that the tube was missing because we didn't need to. We know all to well what happens when the tube is powered up.

A day out on the town like today requires packages of wet ones. Remember my husband is a germaphob. I had never been one until Sloane arrived. Our 50 days in the NICU definitely educated us in germs and their non-existent place the in the world of a child with a medical need. I, in my past life, have at times been called a piglet by my friends. I don't exactly have a need/want to obsess about cleanliness. Sloane's aunties are OCD about cleaning. I think they need interventions or at least therapy!!! We do have a clean house but we don't scrub our floors or the fronts of our kitchen cabinets daily. Or at least I don't!!! Ha

Nevertheless at this point, we should buy stock in wet ones. I am not sure how Sloane still has skin on her hands??? My husband has been known to not let our family members into our house if they are sick. It sounds crazy to many but the fact is: why would we expose our child to germs if we don't have to?? She encounters them daily through our travels, play dates and doctor's appointments.  My hubby and I are educated and know that there a factual downside to being over the top about germs. Our families have tried to counsel us on our No Germs Allowed Policy. Unfortunately, at this point, we have no other option. Sloane can not get a cold or a respiratory infection. Her lungs are already compromised because of her aspirations. This factual information was told to us, not by the mailman or the butcher, but by the pulmonologist that Sloane sees. So we figure that's a reliable source!?!?!?! Sloane has been sick and her immune system has kicked the shit our of the viruses she has contracted. Another blessing to add to her huge appetite, mouthful or teeth....a strong immune system.

Today was a day for wet ones and what did the momma do? I forgot them!! Of all the things to forget???? I didn't forget Sloane's change of clothes which happened to be a cute valentine outfit. I didn't forget the treats she had for her valentines. I didn't forget my cell phone. Those things were unnecessary and I could have forgotten. Instead,  I forgot the wet ones. HONESTLY!!!!!!! How could I? What did I do? I called one of the OCD cleanliness aunties... and she brought me some!!!! "I am no dope", as poppie says.

Mother's Den

I have decided that someone should open a place for moms to go and relax. Not a spa. Not a cafe. A simple drop in dimly lit place where no matter how you look; you can have your beverage of choice in hand and sit in the most comfy chair with a magazine, a tech gadget or your insane thoughts. I have revelations such as this frequently. First, I thought about a drive-thru smoothie locale because not everyone loves coffee. Then, there was the arts and crafts playroom because stay at home moms like myself need more places to hang out with your friends and their children where there is no mess left to clean. Now, I am on to the mother's den.

Last night when it was 9pm and all the stores were closing. I had no where to go. My mil was babysitting, my hubby was out with his boys and I didn't want to go home yet. Now, I wasn't exactly presentable enough to hit the town for a drink or a coffee. I had my incognito, very cute, hide your rat's nest, cap on and the day shift's clothing. That's when it hit me!! Mom's need a spot to detox from being the momma for a bit. A place that doesn't require make-up or stilettos is what I envision. As a matter or fact, I think they should a policy that any freshly showered or dolled up moms aren't allowed!!!! I have one of those mom's in my life. She always looks pretty and put together and I, on the other hand, some days am a COMPLETE mess (right back to the blueberry story).  I did end up at Barnes and Noble; which apparently has become a new hot spot. There wasn't a hard, wooden chair to be found. I wandered around like a nomad and then decided to venture home. If there was a mother's den, I would have gladly plopped on a big, plush chair and put my uggs up for a bit of down time.

A Zipper That Stopped Short

The laryngeal cleft has been explained many ways to us by many different people but there are still days when we can't answer people's questions about it. Because the LC, as I will refer to it, is rare birth defect we had no prior experience with it at all. We were deer in headlights.

Sloane was born with pneumonia. We didn't know that until day 4 of her life. She was not happy while eating her first few days of life. On day 3, as I was nursing her, she turned dusky or rather gray/blue in my arms. Here's where you may want to hold onto your seat! The nurse, who was helping me nurse, told me that all babies turn blue while eating. Let me repeat myself here. The seasoned nurse told me that all babies turn blue while eating. I accepted that answer and then spent the entire night wide awake and nervous because I knew something was wrong. Surprise, surprise..the next day the same thing happened and that is when her pneumonia was discovered. We were transferred to the NICU for 49 long, exhausting, scary, and educational days.

In basic terms, a laryngeal cleft allow liquids thru it and that liquid ends up in the lungs.ASPIRATION....a dirty word in our home!! Solid food passes by the cleft and not thru it so it is safe. Sloane's cleft is a level 2; not the best option. The larger the number; the bigger the cleft. They range from 1 to 4. Sloane's case was more challenging because even though she had no liquids by mouth after day 7 of life, she was aspirating her reflux and perhaps her saliva. We held her upright for months scared to death that she would once again get pneumonia. We tortured our families and friends with this statement: hold her upright!!!! Not to mention the all hand washing and all hand sanitizing (another post in another day...germaphobs). We are obsessed with keeping Sloane healthy.

We had Sloane's LC closed or in slang terms had her zipped up properly when she was 8 months old by the fabulous Dr. Rahbar in Boston. Although, surgery on your child's airway isnt something that is an easy swallow...no pun intended...we had no option according to the top cleft specialist in the usa. We thought the surgery was going to be the end all be all. We soon learned that we had a slow and steady journey ahead of us and Sloane was our guide. More to come....

I would like to stop here and say that my husband and I know how lucky we are to have such a healthy child. It is him and I that are in this world together everyday. We are a team that has the same ultimate goal in terms of our child. In the realm of birth defects/illnesses/disabilities, we are very very very very blessed/thankful/lucky. We never lose sight of that. I have a St. Jude's Children's Hospital calendar hanging in our bedroom to remind us each day that many children need prayers. Each time we go to Children's Hospital in Boston, I get beyond anxious because I just want to take my baby home with her LC and live happily healthier ever after. My step-mom is my wing man on all of those days and at least 2 to 3 times while walking through the hospital we catch each other's eyes and know what we are both thinking. Thank You Big Man Upstairs for this healthy, fabulous child!!! And on the days when there are bumps in our road and I want to say "Are you fucking kidding me?" I have plenty of people around me who won't let that happen. I have been kicked in the ass many times.

Today (as a short side note) was Sloane's 18 month ped visit. She grew 2 1/2 inches and gained 2 lbs. Drama momma teared up when the Dr. told us and then complimented me on the job I was doing as mom of a child with a medical need. A compliment that I accept gladly but at the same time I wonder who wouldn't do what we do for their child???? Sloane's growth is constantly a top priority. I used to count every oz. she gained. I have relaxed some....LOL. Now, I count every 1/2 lb. HA  I have heard so many stories about tube fed children not looking healthy that I worry. That's a worry that creeps in randomly everyday. Shocking??? Probably Not. Worry is the new relaxing for me!!!!

A Bite?

Is a bite a sign of love? I hope so because Sloane was ready to chomp away on anything or anyone all day today. My 10 month old niece almost lost a finger. Prior to Sloane's vampire stage, her teeth were something we were loved to see her use. While Sloane's laryngeal cleft has had an effect on her food intake, the early arrival of ALL of her teeth and her enormous appetite helped to make life move towards "normal" more quickly. Today, Sloane thought her cuzzy's finger was a carrot stick.

My niece and Sloane are 9 months and 2 days apart...dreamy fun!! As I watched Sofia Grace and Rosie on Ellen (who I have a huge woman-crush on), I thought about how amazing it is to have such a blessing of 2 little girlies so close in age. I hope someday S2 (my niece's name begins with an S too) become a dynamic duo like Sofia Grace and Rosie. If you haven't seen these sweet cousins from Exxex, England.... youtube them. They are hilarious!

Having a niece as close in age as my daughter is the good news! For the mom of a child with a special need, it could have been difficult although it wasn't. You see when you have a child with a medical need; you spend too much of your time waiting for the next shoe to drop. Will something else be wrong with your child? There were a variety of doctor's appointments that left us full with worry. I can say after the first year mark, I started to relax some. Sloane was hitting all of her milestones and growing like a weed so I started to have ahhhhh moments. 

I wont lie. There were times during the first year that my hubby and I would examine our child like a medical specimen. We would read, research and question our friends over and over again about her progress. As first time parents, I think its safe to say that we had no clue about what was normal or not. Normal wasn't something we had done yet. As our niece grew in front of our eyes, we began to think back to when Sloane was that age and think of whether she developed as our niece was. Our niece was born without any medical needs to which we are beyond thankful. You do tell yourself that all children are different, but when your child is truly different... there is not always a clear distinction in your private thoughts. Because Sloane's birth defect is an imperfection is in her airway near her voice box and can be part of a syndrome, the voices in our heads can be chattering at any given time. We do know how blessed we are because Sloane's cleft is not life threatening, but we have been scarred because of its presence in our lives. The cleft seems to creep into all areas of our parenting. 

There could be a day when we think...fuck it!!! let her take a bite because this child has been through too much already...we hope not!! But the cleft's presence and all that our child has to endure because of it is everywhere!!!!!!!

War of the Grapes

There were no blueberries today but there were grapes. My child is obsessed with fruit. Any fruit, any time. Today we had one of my favorite days "the mommy & me day". We head out the the mall and shop til we drop..LOL or rather shop til Sloane screams. And then there is lunch. Our big girl lunch where everyone in the restaurant thinks all is normal. That's because I plan it this way. I schedule it and plan it and obsess about it every day. How, when , where will the tube happen. The tube is to us like what many people keep in their night stands...a dirty little secret. 

You see I hate taking the feeding pump and tube out in public. I hate that if someone sees it, they began to stare, trying to figure out why such a perfectly healthy child has a feeding tube. There actually was a small scene in my town at a breakfast joint when a woman said "i wonder what is wrong with that baby," as I plugged Sloane in. The mother (aka me), of course, made a scene. Luckily, I was with my step-mom, who is a perfect lady, so I composed myself. If I was with one of the aunties, there may have been a brawl. You see when Sloane was too young to eat solids it was harder to keep our little secret. The tube with its formula/milk were her only source of food so the tube was our shadow. Now we are free birds!! Sloane eats everything and I mean everything. She has the momma's appetite. Finally, the tube has become a drink. Gone are the days of plugging her in every three hours for one hour...here are the days of plugging her in for breakfast, lunch, snack and dinner. 

Mommy & me lunch is one of my favorite things in the world. After we sanitize the table (we are obsessed with germs...another post for another day), we sit and babble and I take pictures. It can make me tear up at times...drama momma!! I feel so blessed. And then the grapes land on the table. That's when the power struggle begins. My question is: is 18 months the new 2 years old like how 40 is the new 30? Sloane has begun to give me a run for my money as they say. The grapes now take over and chaos starts. There is whining, slurping, squirting and sweating involved as we fight over to cut and skin or not to cut and skin. Once the last grape is devoured, I remember the tube. The tube is sitting in the car waiting for our arrival. Chilled milk, charged pump, and privacy await. The fucking tube! 

Now, my child has never been passive so the grape war is just a glimpse of what is to come. I can't wait???? Thank God Sloane has the happiest and most determined personality I've seen in a long time because I believe that is why she has progressed swimmingly thru the past 18 months. The child that was supposed to be breast fed by an organically fed momma:
has taken antibiotics, 
had anesthesia 7 times, 
had 3 surgical procedures, 
has taken prescriptions daily because her reflux was so severe that she spent the first 9 months of her life upright at ALL times,
has an artificial device in her belly that mimics a mouth,
not to mention the 15+ x-rays she has already had
Many days I think can this really be????

Blog, Baby, Blog

Blogging was something on my back burner for months and then today happened. It was a normal morning that quickly turned a crisp white vest into a mirage of food stains. When I looked down and saw blueberries smeared all over the front on me i thought....blog, baby, blog. 

I am a stay at home mom of an amazing 18 month old little girl. She keeps me and my hubby very busy. I like to say she crashed into our world on July 20, 2010 and has taken over by storm. My life, as most stay at home moms, revolves around Sloane Jacqueline..... and her teeny tiny humongous nuisance of a birth defect called a laryngeal cleft. 

http://en.wikipedia.org/wiki/Laryngeal_cleft

My mil suggested blogging over a year ago but I thought who wants to listen to my rants??? And then a friend months ago encouraged me to give it a try. It wasn't until this past Sunday that I mentioned it to my hubby. I was unclear what journey the blog would take but then this morning's blueberries happened. So here I am: blogging about me, momma life, married life, and of course ironically my blueberry, as we used to call her.

A Sip of Heaven is really Sloane's journey...from sip to gulp to swallow...and how she is heavenly loving and heaven to love.

The story of Sloane's crash landing will be in another post. It has taken 18 long months to get to where we are. Now, I know 18 months is not much time in a lifetime but when you are living 18 months out by sip to sip it can feel like an eternity. 

We are a family of 3 (if you dont count the voices in my head) supported by the best circle of trust ever! lol We have wonderful families/friends who have supported us through this pesty laryngeal cleft. We began as a group who said: a what? a laryngeal cleft? what is that? Imagine how many goggle searches were done on that day...August 2, 2010. 

Don't get me wrong, I know and I am THANKFUL everyday that we are blessed to have a healthy child but there are days when I do stop and think...are you kidding me??? I am really plugging my child into her liquids thru a g-tube?? Is this real??? And yes folks, it is. My baby: 
the one I waited years for, 
the one we did IVM for, 
the one I ate organically for while pregnant,
the one that I was dying to breast feed, 
the one that turned this motherless daughter into a mother of a daughter, 
the one that surpasses every dream I ever had of being a mom...
has a g-tube and is plugged in 4 times a day for liquids. The truth is as my friends like to say "she is perfect; she just drinks differently" which is very true but realistically Sloane does have a birth defect that has left her with a part of her body not perfect at all. We were reminded of this when we gave Sloane a tiny sip of water tonight (that is a big no-no right now) and she choked until she turned color...ugh!! the pesty cleft is still here!! as if its going to magically disappear....silly mommy!!

And so the blogging begins!! My hubby just gave me the thumbs up to this post so we are off!! I now realize that my mil was right (not something I like to admit on a daily basis even though I love her to pieces). I do have a lot to let out from deep. Won't my therapist be proud!! lol