Swallow: A Documentary

1 May

My sister recently sent me this short documentary about dysphagia which was produced by the National Foundation for Swallowing Disorders. It shares the story of 3 people of various ages who have different reasons for not being able to swallow.

I’ve got to say, I really relate to Elysa, the mother of 3.5 year old Rydr in this video. Hearing her talk about all of the therapy, the work of a feeding tube, the constant concern for swallow safety, and the “why did this happen to me, why did this happen to us” thoughts was like hearing someone read a page out of my diary. Parenting a little one with dysphagia is a tough road to walk, she’s 3 years ahead of me and it’s inspiring to see all of the progress they have made. Kids who have to hit all of the normal developmental milestones, and learn how to do instinctual things like swallowing are seriously tough and amazing.

 

Dear TigerOne: You Are 5 Months Old

18 Apr

Dear TigerOne,

Ok. So, you are actually 5.5 months old. Sorry baby, it turns out that raising infants does not lend itself to punctual blogging. Good thing I kept some notes last month so that I can remember what actually happened.

You are welcomed the dawn of your sixth month with the sniffles and a cough. It was sad to see you all stuffed up, but it made for some pretty good snoring. Because you are so little, your snores are pretty cute — live that up, kid! It’s a short window before it becomes not so cute. Likewise with your chubby fists and thighs. You babies have got it good.

March brought a big change in routine when I returned to work 3 days per week. We found you a sweet nanny with a solid medical background, and you seem to like her. I miss you a lot when I am at work, but I’m finding that spending some time missing you is probably making a better mother. I love you so much, but I think I was starting to get a little stir crazy at home with you all day everyday. Still, it’s been a bitter-sweet transition, and I think it’s going to take some time to get the hang of it. I am thankful that I can get away with working part-time, and still shuffle you around to all of your appointments and take adventures with you on my days off.

In Occupational/Physical Therapy we are:

  • Continuing eating purees, which you are doing great with!
  • Strengthening your obliques to increase your rolling skills
  • Encouraging you to touch your feet and knees
  • Encouraging you to reach out and grab things
  • Lots of visual tracking exercises and working on eye contact
  • Continuing to strengthen your neck muscles with tummy time

Here are the big events from your fourth month:

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You had your second sleep study. I’m pretty sure that I will never get over the shock of seeing you hooked up to all of the wires involved in an EEG. Somehow you manage to look adorable despite it all — we call that major skillz. The sleep study showed that you are still having a lot of apnea, and we had to put you back on night oxygen for the foreseeable future. Your Papa and I hate putting the cannula on you, and you hate wearing it, but it’s preventing you from developing pulmonary hypertension, so it’s gotta be done. Thems the breaks, kid.

Baby guts #stomach #upperbowel #fluoroscopy #upperGIstudy

Check it out, another picture of your insides for your baby book! In your fifth month we got to see a picture of your stomach and your upper bowel. Everything is looking good in there. They said that your upper bowel is forming “a beautiful ‘c’ shape” which is what it’s supposed to do. Your guts are beautiful! I’m such a proud Mama. This picture was the result of a fluoroscopy that we had done in preparation for your g-tube surgery. I’ll write a more on that later, but after a lot of debate your Papa and I decided to upgrade you from the nose feeding tube to a belly feeding tube. It’s gonna be good for all of us in the long run.

4.5 months

You continue to allow me to dress you like a doll, and I love it. This is perhaps one of my favorite daily motherhood tasks. I am living it up before you crush my dreams by demanding to pick out your own clothes.

Captain calamari

Captain Calamari, the pirate octopus is hands down your favorite toy. Wherever you roam, he is typically not far off. Your favorite tentacle is that golden satin hook one, it crinkles. It is your highest goal in life is to get that one into your mouth and gnaw on it. Such lofty goals you have, my young friend.

Easter

Bunny brought #tigerone some things too. He must have been impressed with Coltrane's bunny portrait.

Easter

We went to Sacramento for Easter and you got to hangout with your cousins. The whole lot of you are pretty stinkin’ cute if I do say so myself. Your Auntie took some excellent Easter portraits, she’s good like that. And the Easter Bunny brought you a ducky basket filled with things to chew on! Does the Easter Bunny know you or what?

Picnicking with my little. ✨

We went on a couple of picnics. I’m not sure this picture can fully capture how much joy you bring me, but it does a fair job. Nothing better than spending a sunny afternoon outdoors with my little love.

5 months old today. Finally decided to grow some hair. #tigerone

And major news here: You finally decided to grow some hair! This is like, 5 times the amount of hair that you had the month before! I don’t think I had this much hair on my head until I was at least 2 years old. Way to show me how it is done. Also, it looks like your eyelashes got the hair growing memo as they have suddenly become amazing as well.

So, that’s the scoop on your fifth month. Way to keep on being awesome, kiddo! Your sixth month is shaping up to be busy and exciting, but let’s try to avoid spoiler alerts since I am supposed to blog about that in a mere 2 weeks. Let see how soon that actually happens.

Love,
Mama

Easter

31 Mar

Why aren’t there more holidays that justify dressing my baby up as an adorable animal? This kid knows how to rock a pair of ears.

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Dear TigerOne: You are 4 months old

6 Mar

Dear TigerOne,

On March 2nd, you turned four months old. I had high hopes of creating a post like this for each month of your first year, but here we are, 4 months into your life and I am finally getting around to doing this. Better late than never!

You’ve done so much growing lately. I mean, I guess that’s sort of your job as a baby, but man, you are doing it so well you should get a raise! You are creeping on 17 lbs now, rapidly approaching double your birth weight, and you are getting so long! You are 26 3/4 inches as of today, which puts you in the 96th percentile on height. As a result, you are wearing 6-9 month clothing and rapidly outgrowing the carseat that was supposed to last you until you are about a year old. That’s okay though, I know what it’s like to be tall and to not fit comfortably into airplane seats and struggle to find pants that fit. I’ll show you the ropes.

Day to day you are now:

Smiling like nobody’s business

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Continually clasping your hands together

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Bringing those hands up to your mouth and sucking your fingers

Learning how to suck his fingers. Killing me with sweetness.
Being forced to do lots of tummy time and physical therapy exercises

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And all that tummy time is paying off, because your floppy neck is getting stronger!

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We are still having lots of sweet cuddle time.
I know that I am going to miss this someday and I’m trying to savor it.

Best of days. #16weeksalready #stopgrowingsofast

You are also usually missing one sock, constantly kicking your little legs, and drooling up a storm. You are more interested in looking at the mobile in your crib and out of windows. You are enjoying your swing. You are generally mellow but still pretty fussy around bedtime. Oh, and you are starting to chuckle more and more, I can’t wait until you full on giggle. My heart will probably explode.

In occupational therapy we are currently working on:

Rolling from back to belly
Not arching the neck & overall neck and trunk strength
Bottle feedings
Eye focusing

Big events and fun times this month:

You met your grandparents! They are your Papa’s parents and they adore you

Proud Grandparents

You had your first swallow study

Scene from early today at #tigerone's swallow study. Sort of fascinating to watch. #MBS #fluoroscopy

And your first sleep study too

Sleep study #1

You took your first hike with me at Tilden Park

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We went on a lake walk with the Bradley Class Mamas & babies

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And…. (drum roll, please….) you ate your first solid food! Sweet potatoes!First solid food! He ate them sweet potatoes like a champ. #soproud

Life with you is such an adventure, TigerOne. Along with all of the regular milestones that most kids have, your monthly updates include hospital visits, swallow and sleep studies, and progress at occupational therapy. These experiences are all part of who you are, so I’m not being shy about documenting them. I want you to be proud of all the hard work you are doing, and to never feel sad or ashamed for being a little different. You my son, are a little warrior. I’m cataloging all of your battles so that you can someday look back and see how fierce and incredible you were from the very beginning.

I can’t wait to see how you flourish in the next month.

Love,
Mama

Feeding My Baby Barium and The Battle of The Bottle

17 Feb

It is fitting that during feeding tube awareness week, TigerOne had his first swallow study.

You see, when he had RSV a few weeks ago an x-ray was done and we discovered that he had a touch of pneumonia. It wasn’t entirely clear if the pneumonia was caused by the virus, or if he had actually inhaled some milk during one of our feeding sessions. So, to be safe oral feeds were put on hold while his lungs recuperated from the pneumonia and we could do a swallow study to see what was up.

By the time the swallow study rolled around this past Monday, TigerOne hadn’t eaten orally for a few weeks. I attempted to give him a few small feeds the two days leading up to the study so that the lab wouldn’t be his first swallow after such a long break. On Monday, I brought TigerOne to the fluoroscopy department of the hospital, where they sat him in a special seat and basically did a real-time x-ray of his mouth and throat. I put on a lead apron and fed him a bottle of chalky white apple flavored modified barium, and then we all watched where the fluid went after he swallowed it.

Scene from early today at #tigerone's swallow study. Sort of fascinating to watch. #MBS #fluoroscopy

Modifed Barium Swallow

Above is a picture of the floroscopy screen, you can see the nipple of the bottle in black on the upper left and his mouth and throat in blue. Once I got past the horror of feeding my baby barium and exposing him to all that radiation, I was actually pretty fascinated by the study. He would take a small sip, and blue drops would trickle down his throat on the screen.

We fed TigerOne two different consistencies of barium, one that emulated milk, and another that had been thickened a little to a nectar consistency, which he was able to manage a little better. The study revealed that none of the fluids are being aspirated when he swallows, which is great. But it also revealed that he isn’t doing a very good job sucking, or managing his swallows. The process of swallowing happens slower for him than it should, and he doesn’t clear all of the fluid from his throat very efficiently.

What all that means is that there is no real end to tube feeding in sight, and that we may have to seriously consider g-tube surgery at some point, because NG tubes are supposed to be for short-term use. Mostly though, it means we just need to keep up the good fight and practice, practice, practice oral feeds.

Tiny bottle for feeding therapy

Tiny Bottle of Frustration

When a baby turns 3 months old, the instinct to suck goes away and sucking becomes a learned skill. So, the fact that TigerOne is 3.5 months old and had a prolonged break from oral feeds is really bad timing. Returning to oral feeds his week has been really frusting for both of us, it been worse than starting from square one because his suck instinct is almost gone. Is there a square negative one? I put the bottle in his mouth and he just looks at me, like “what am I supposed to do with this?” He will bite on the nipple, lick it, smack his lips around it, and do pretty much anything but suck. He will taste a drop of the milk and get extremely frustrated that he can’t get more of it.

This makes me feel frustrated but mostly sad. Sad that there is something missing in his brain that means he doesn’t have the coordination to do something so basic and instinctual. Sad that there isn’t more that I can do to help him learn. We just persevere. I offer him a one ounce bottle of breast milk thickened to nectar consistency 5 times a day, and maybe two of those times I can get him to eat half of it, the other times he refuses the bottle.

Learning to suck isn’t just about eating a bottle. It’s also about conditioning his mouth to one day be able to eat solid foods, and strengthening the muscles that will affect his ability to speak. This skill is the foundation for a lot of things. So, when I sit down with him and try to coax him into sucking, we are working for much more than freedom from the feeding tube. I guess the important thing is that despite the challenges we just keep working through it, that’s all we can do.

Fall seven times, Stand up Eight.

Japanese Proverb

Feeding Tube Awareness Week 2013

10 Feb

Today kicks off Feeding Tube Awareness Week. The day he was born, TigerOne joined half a million people nation wide who, for a variety of reasons, rely on feeding tubes to sustain their lives. I’m indebted to this technology, and grateful for the support network that the Feeding Tube Awareness Foundation has created for people and families on this feeding journey. It can be a messy, scary, lonely road to walk on your own. Here is the 2013 awareness video that the foundation made, TigerOne’s picture is in it at 4:12. He’s in good company with a lot of other strong and amazing tubies.

TigerOne’s Birth Story – Part 2

31 Jan

Oh hey there, was I telling you about TigerOne’s birth story? A family wide bout with RSV, which landed TigerOne in the hospital for a week sort of put a delay on writing this epic post. But, we’re all feeling better now, so let’s get on with it!

When we left off I was 41 weeks pregnant and I had just decided to go in to the hospital to be induced based on the results of my non-stress test. As promised, here’s the follow up tale of epic induction, a zen labor, a primal delivery, and meeting tiny TigerOne.

DAY 1 – Tuesday 10/30/12
(In which we are blissfully ignorant of what’s to come)

Ultrasound aka Your Baby is a Giant

At 41 weeks & 1 day pregnant and I arrive at the hospital knowing that I won’t be coming home without my baby. We begin the day by undergoing an ultrasound because my doctor wants to estimate how big the baby is. Ultrasounds at this stage in pregnancy are historically inaccurate, they can only estimate the size within a couple of pounds over or under actual size of the baby. So, when the ultrasound technician tells me that TigerOne is 10lbs, 14oz, I don’t really believe him. I figure this kid is 10 lbs tops, and I feel pretty confident my body has grown a baby that I can deliver without needing a c-section. I’m all about keeping a positive outlook.

After the ultrasound we head upstairs to check in for the induction. It is very strange to calmly roll my suitcase through the labor and delivery floor and not be in labor. We check in at the nurses station and they show us to the room that I will be laboring in. I change into a hospital gown, unpack the ipad, our speakers, my pillow, and water bottle, and settle in. At this point I am still thinking that this process will be short and sweet just like my doctor had said it would be…

Let’s Get the Party Started

A doctor and nurse come in and give us the low down on how all of this is going to work. We will start with a pitocin test to see how my body reacts to the drug and to see how TigerOne’s heart rate tolerates it. They will deliver the drug through my IV and gradually increase it over the course of 6-8 hours and we will see if any contractions start. I am again reminded by my medical team that since I’m already partially dilated to around 2.5 cm this shouldn’t take long. Someone actually says “it won’t be like one of those awful 4 day inductions some women have to have”, and this is my first indication that inductions can be a long and tiresome process. The nurse puts in my IV, takes my vitals, and then straps two monitors to my belly; one to track the baby’s heart rate, and one to see if I’m having contractions. I am told that I need to stay on these monitors the whole time that I am on the drugs, and I’m not supposed to eat or drink anything. The pitocin starts flowing and we wait for something to happen.

All hooked up

Pitocin Level 2

Pitocin is delivered in increments of 2. You start off with an IV drip at level 2, and can increase every half hour until contractions start getting serious. At the hospital where I delivered the max is 20, and I was told that most women start feeling pretty intense contractions by a level 6 dose. During the test my dose goes up to 10 and nothing really happens, I feel extreemly mild contractions, but mostly I just get hungry, thirsty, and bored with sitting in bed. When the test period is up, we find out that we have both passed. It’s about 9pm at that point. The doctor checks me and there has been no change in my cervix, and I am allowed to have some food, walk around, and have a shower. At around 11 pm they decide to give me a round of misoprostol aka “miso”, which is an oral medication that softens the cervix. You take it, wait 4 hours, and then see if anything has happened. I take the dose along with some benadryl to help me sleep and say good night to day one.

Day 2 – Wednesday 10/31/12
(In which I loose my mind)

I am awoken at 3 am so that the nurse can take my vitals and the doctor can check to see if the miso has had any effect. Actually throughout the whole induction process nurses come in to check my vitals every 3-4 hours around the clock. It’s super annoying. The doctor checks me and says that I am dilated to around 3 cm, not very much progress at all. The decision is made to go back on the pitocin and keep increasing it until something happens. My husband and I discuss that perhaps this will be a halloween baby, but we will be wrong about that. From 3 am until around 10 pm I sit in bed while we gradually increase the pitocin. They pause it once in the afternoon so that I can stretch my legs and have some food, but then we get right back on the drip. To pass time we play cards, we watch Breakfast at Tiffany’s, Groundhog Day and Harold and Maude on the ipad, and we wait. The day is unbelievably boring and exhausting. Friends continue to text asking for updates and encouragement.

My sister sends me following image:

Labor Encouragement on Halloween

To which I reply with something like:

Induction

I am nowhere close to pushing out my little pumpkin. I’m just hanging out, developing bed sores, and cultivating some crazy hair.

Over the course of the 21 hours of pitocin that day, the dose climbs from 2 to the max of 20 and stays steady at 20 for a long time. The contractions never get really painful, but they are a little more noticeable than the day before. I think I can honestly say this is one of the most awful days of my life. I’m uncomfortable, being pumped full of drugs, continually prodded by medical staff, unable eat, and unable to leave my bed. I continually remind myself that this is all in the name of progress and each hour brings me closer to meeting my baby boy.

When the doctor checks me an 10pm and I have made zero progress throughout the day, I start feeling pretty low. When the doctor goes on to tell me that because my body is not responding to the meds, and because the baby is thought to be so big, I will more than likely need a c-section, the tears start flowing and I cannot for the life of me stop them. I am beyond exhausted from a long day of drugs, and my spirit has been pretty much crushed at this point. There is nothing left for me to do but to become a heaving mass of sobbing tears and snot.

My medical team sees how horribly upset and exhausted I am, and I think they are a little taken aback. They say something to the effect of “Wow. OK, crazy lady. Take this Ambian and we will try again in the morning.” My doula comes to check in with us and provide a little moral support. I take the ambian and within moments everything goes black and I am in the deepest sleep I have ever known.

Day 3 – Thursday 11/1/12
(In which something actually happens)

I was born on December 1st, and my husband was born on May 1st, so we think “Hey, maybe this baby wants to join the first of the month club!” I awake around 7am, have some breakfast and we talk with the medical team. The new plan is to take two more rounds of miso to basically beat my cervix into submission, and then to go back on the pitocin to get the contractions in gear. If this plan doesn’t work, it will be c-section time. I am not a praying type of person, but at this point I ask my sister and aunt to light candles and think positive labor thoughts for me, which they do because they are awesome. I start wishing with every ounce of me that today will be the day that I meet this baby.

It takes 8 hours to go through 2 rounds of misoprostol, and at the end of it I have dilated only 1 centimeter, for a grand total of 4 centimeters. It’s mid afternoon and I am allowed to have some food, and then we dive right back in to the pitocin. The day is filled with more card games, and more movies. More looking at each other and saying “My god, can you believe that we are still here? Still trying to make this happen?” I watch Strictly Ballroom while my husband runs home for a a shower and a change of clothing, and slowly I start to feel contractions that actually hurt a little. When he comes back  in early evening we decide to watch Rango and that’s when my contractions start coming regularly and I need to focus to get through them. I start to realize, oh hey, this is that pain that people keep telling me will happen. This is why every keeps saying I won’t be able to do this without drugs. Halfway through the movie I realize that I can’t follow the plot and that it’s time to turn off the movie and practice some breathing.

rango screen shot

Rango, sending me in to labor at long last.

So we put on some hippie zen chanting music and I start getting in to my breathing zone. Around 10pm I tell my husband to catch some sleep because I’m pretty certain that it’s going to be a long night. I sit in bed riding the rhythm of contractions. When each one rises up I press my finger against my 3rd eye, take a deep breath and exhale it as slowly as I possibly can. My husband wakes up when I begin making some noise as I labor through things. When midnight arrives we are laboring together at last.

Day 4 – Friday 11/2/12
(In which this kid finally shows his sweet face)
Disclaimer: Things get a little graphic in this portion of the post!

November second is Dia de Los Muertos which also happens to be my favorite holiday. Given that my husband and I had a Dia de Los Muertos themed wedding, it is a fitting day for our son to be born. I secretly hope to myself that he will show up in full sugar skull makeup.

Artistic Rendering of TigerOne
(Not really… painting by SigneTveitan)

At 1am things are getting pretty intense and I tell my husband that it is time to call our doula and have her head over. He hangs up the phone after speaking with her and moments later I have a really strong contraction where I ask him to push on my third eye for me. At the height of the contraction I yell “push harder!” and the moment that his thumb digs into my forehead, I feel a pop, followed by a big long gushing sensation. My water has broken so we alert our nurse. Meanwhile, the pain of contractions jumps from about a 5 to an 11. I’ve lost my cushion of water and the pain sends my body into a state of shock that causes me to violently empty everything in my stomach. My husband says something to the effect of “WOAH, this is intense! This is happening!” and I wonder if maybe some pain medication wouldn’t be a bad idea, but I keep that thought to myself and persevere.

The nurse comes in and takes a look at where my water has spilled all over the sheets and informs us that the waters are not clear, there is some light meconium (meaning that the baby pooped the womb, which is fairly common in over due babies). She also tells us that it’s time to move to the room where I will actually deliver the baby. I look at her like she has just said the craziest thing I have ever heard. She wants me to walk down a hallway? While I’m in so much pain I can’t stop puking? HA! She’s hilarious! Our doula arrives and with her on one side, and my husband on the other, we walk the twenty steps to the new room, pausing for a couple contractions along the way.

We settle in to the new room and I arrange myself in a upright sitting position on the transformer labor bed. My husband and doula take turns sleeping and assisting me by putting pressure on my lower back and pressing on my forehead. I go to a place deep within myself and picture the contractions like waves, rising and falling, washing over and consuming me with a crash, and then fading away. We spend several hours like this and it feels like an eternity. I nod off in between contractions. I decide that hell is a place where you sleep for a minute, wake up to intense overpowering pain, and the do this on repeat forever. At some point I look into my doula’s eyes and tell her that I’m pretty sure that I’m going to be in labor for the rest of my life, and she assures me that I won’t. I don’t really believe her though.

The extact timing here gets a little vague, but I think sometime around 7am the doctor comes in to check me. When she says that my cervix was completely dilated I’m so on another planet that I don’t understand what that means. She tells use that the baby was still a little high so I could either start pushing now, or do what’s called “laboring down”. I end up laboring down for a while, just riding the contractions without pushing while the baby moves down. Things proceed in this manner for while until I feel like I need to move from the bed. I make my way to the toilet and that’s when the overwhelming urge to push overtakes me. I have a big involuntary push on the toilet, wherein I make the most gutteral sound my body has ever generate. It is low, and growly, and loud all at once. After that push I reach down and feel TigerOne’s head emerging and I think “Holy crap, this is it. This is primal. This is nature in action!” and then I scream out “I’m a animal!”

After this, I’m told that it is time to come back to the bed, since you know, it’s not good to deliver a baby on a toilet. With help, I waddle my way over to the bed, while crowing. I hear the nurse on the phone saying that we are about to have a baby and to send a team into the room NOW. The team arrives and after two giant pushes, wherein I’m thoroughly convinced that my body is catching fire and I’m going to split in half, TigerOne emerges with a gush of fluid and I feel immediate sweet relief. It is 9:15 am.

Moments Old

The brand new Papa cuts the cord and then, because of the meconium in the water, TigerOne has to be checked out on the warming table. It take a few scary minutes for him to pink up and let out his first cry, but I’m stuck on the bed watching from a few feet away while my placenta is delivered and I get a few stitches. I’m shouting out encouraging words to TigerOne as they stimulate him and give him some oxygen and gradually his color comes up and I hear his cry. Eventually, my husband brings our sweet swishy little bundle of TigerOne over to me, and we start to cry too.  It has been a long road to get here, but finally, we two have become a family of three.

When 2 became 3

Fresh Out of the Womb

He is 9 pounds 1 oz (take that, ultrasound!), 21 inches long, and the most beautiful thing I’ve ever seen. His little face stares up at me with curious eyes. The staff all congratulate me for getting through it all without using pain medication, they all say how extremely rare that is after so much pitocin. A  couple of nurses come in because they actually want to meet the crazy woman who had a four day induction with no meds. My amazing nurse tells me it was one of her favorite births in over 15 years of labor and delivery work. Our doula tells us how much she loves us. Everyone’s hearts are gushing with the sort of emotion that witnessing brand new life can bring.

It will be a while, about 10 hours, before TigerOne starts to show signs of being sick. At this time, we don’t know anything about the x-rays, EEGs, IVs, MRI, blood gasses, and three weeks NICU stay that will test the strength of our new family. It’s just my husband, me, our perfect boy, a whole lot of happiness and an eternity of love.