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!!