A Typical Day of Feeding

Tennyson doesn't like to eat. That probably sounds really strange to you. It's one of those things I never ever ever thought I'd have to worry about. I never heard of a baby that hated to eat - picky eaters yes - but babies who would rather starve than eat, never. From the time she was born, she struggled with sucking. She was 3 or 4 days old when she finally developed the skill to suck. Doctors were immediately concerned when she didn't have this natural skill that all healthy babies have. Soon enough she learned to drink from a bottle and eventually even suck on a pacifier.

So what does a 2 year old eat if they don't eat food? Believe it or not, Tennyson is not the only child in the world who doesn't like food (even though that is what I felt like for the first 2 years of her life). There is a fairly wide variety of formulas that offer complete nutrition for babies and kids like Tennyson.

Tennyson "eats" a formula called Elecare. Elecare works for Tennyson. It's completely broken down so all her body has to do is absorb the nutrients. On top of everything else Tennyson has slow motility. Motility concerns how fast food is digested. So the less her body has to work to break food down, the faster it digests, she is less likely to throw it up, and we can get the calories into her that we need to.

So this is what our daily set-up looks like:

I will explain all of Tenn's meds in a later post

If I'm really organized I'll prepare all of this the night before, so I can just wake up and have the entire day's worth of milk, water, and meds in nice little grab-and-go bags like this:

Each bag contains milk, water, her medicine for that time of day, and 2 large syringes of water for before and after her feed:

When it's time for Tennyson to eat, we use a feeding pump that looks like this:

It sits on an I.V. pole and the feeding bag cord runs through the top of the pump:

And this little cutie pie is sitting here "eating" her breakfast (she has a bib on because I offered her a bottle - which she declined):

pardon the messy morning hair

She is fed like this 3 times a day. She is also fed all night long while she sleeps to make sure she gets all of her calories she needs. It is really time consuming to prepare her feeds. I wash everything every night and from start to finish it takes me about 45 minutes to get everything ready for the following day. She takes an hour to eat with her feeding pump, and then she has to sit there for about an hour afterward or else it all comes up. Positioning is really important with Tennyson since she still has pretty severe reflux.

I am hopeful that one day Tennyson will not need to use her feeding tube. But until then, it's what keeps her alive, so I am very thankful for it.

e-mail me at tennsense@gmail.com

Amy

What Is A Feeding Tube?

As promised, I am going to be posting everyday this week in honor of Feeding Tube Awareness. I hope to demystify what a feeding tube is and help educate people who are curious to know what it looks like and how it works.

There are many different kinds of feeding tubes. They come in different shapes and sizes. I will only be telling about Tennyson's tube specifically, since that has been my only experience with feeding tubes.

Feeding tubes are intimidating. They sound far more serious than they really are. All they really are is an alternative way of getting food into the body. Tennyson's gastrostomy tube (g-tube) is called a MIC-KEY button (pronounced "Mickey" like Mickey Mouse). It is located on her tummy and leads directly into her stomach.

She takes all formula, water, and medicine through her tube. She can still drink bottles by mouth but she only does so once a day, if she's up to it. I don't push her if she resists it because we are trying to make every experience with feeding and food a positive one.

Tennyson has had her g-tube for about 3 1/2 months. She doesn't have any noticeable scars from the procedure because it was done laparoscopic, meaning the surgeons made a tiny incision in her belly button and used a camera to see where to place the tube. They filled her abdomen with air and then made an incision in her stomach. The stomach lining and skin are all that separates the balloon of water and the top of the g-tube. Tenn was in the hospital for three days following the procedure.

So here is what a MIC-KEY button looks like:

 



And here is it again from the top with the port door open:

To keep it secured, a syringe with water inflates a balloon, which restricts it from coming out of the stomach:

After the balloon is inflated with water, it looks like this (we check the amount monthly):

The inflated balloon simply surrounds the tube. The tube you see in the center of the balloon is how food, water and medicine get into the stomach. Pretty straight forward, right?

Next, a long skinny tube called an extension is attached to the top of the MIC-KEY button in order to get food, water, and medicine in:

One end of the extension tube attaches to the MIC-KEY button, and on the other end there are two ports - one small and one large. The small one is for small syringes (usually for medicine):

And the large port is for large syringes and feeding bag attachment:



So that just about sums up the MIC-KEY button. Not as complicated as it looks right? It's not gross. It doesn't hurt her. Think of it like a pierced ear - only in her tummy. The button stays in at all times. If it were to come out, we would need get it back in as quickly as possible. The hole can close up in as little as two hours. 

It does sometimes freak me out that it is a direct link straight into her stomach, so I sanitize all her syringes and extension tubes. I use these handy little microwave bags and just add water to them:

Up next tomorrow: A typical day of feeding.

e-mail me at tennsense@gmail.com

Amy

Unexpected Smiles

My last few blog posts have been all words and no pictures...kind of boring since I'm sure you stop by to see Tennyson's sweet face, right?!

I was in the car with Tenn this morning driving to two different pharmacies to pick up two different medicines and I looked back and saw my sweet little girl smiling back at me. It reminded me of a couple cute/funny videos we have of her. She has definitely taught us to expect the unexpected. You'll see why...

Disclaimer: If you don't think random baby spit-up is funny, you might want to skip this one.

You can kind of see that her legs are a little tight (spastic) in this video. We were going through the motions for rolling at the time.

We try to sit down for dinner each night together. Even though she doesn't eat food, we put out something she can taste or drink if she's open to it.

I hope those videos made you smile. They always make me laugh.

Feeding Tube Awareness week is February 5-11, so I'm committing to blogging everyday during that week about feeding issues, feeding tubes, feeding therapy...etc. Check back if you are curious about those things...we are specialists in that area :)

Amy

tennsense@gmail.com

Let's Be Honest

Long before the cerebral palsy diagnosis, I got over feeling bad for myself, but after the diagnosis came I couldn't seem to grasp what that meant for Tennyson. What would her future look like? Would she ever walk? Would she talk? Will she live with us forever? Will my body be physically capable of caring for her as she grows? I wondered if she would ever do things I loved doing when I was a child. Would she be able to run on the beach and play in the sand? Or ride bikes with other children?

I found myself making doctor appointments for little things because I was still convinced something was wrong with me and it was being missed. During one of the appointments, the doctor asked if I had been under any stress recently. That was all it took. I couldn't even just say the words without crying. Through tears, I told her my daughter was diagnosed with cerebral palsy and I immediately followed it up with how much I loved her and how happy she made us and  how thankful for her we were - in case there was any question. I told her I began having anxiety about her future because we had no idea what it would be like.

Thankfully she said, "I would be worried about you if you weren't having those feelings". I was relieved. She prescribed me an anti-depressant to help with my anxiety attacks and I had to meet with a psychologist once a month for as long as I took them. At first, I was not thrilled about adding another appointment to our already insanely busy therapy and doctor schedule, but after I went to the first therapy session, I knew it was a good thing.

I had no idea my meeting with a psychologist would lead to answers about my health which I was so desperately seeking. During one of the therapy sessions, I mentioned that nobody could tell me what went wrong with my pregnancy. All of the recommended tests came back normal. I wondered if I could have a healthy preganacy. I wondered if it was even safe for me to have future children. Due to that conversation, the psychologist referred me to an OB/GYN doctor so I could talk about my concerns.

I went to the appointment and I felt better after talking with the doctor. She noticed I hadn't been tested for everything that might explain the blood clots in the placenta. She ordered the tests and I had blood drawn. About 6 weeks later, I found out about the MTHFR gene mutation I have and I was finally able to find some peace with what happend. Even though I had more questions, now I had an answer.

I stayed on the anti-depressants for about 4 months. Taking anti-depressants definitely served their purpose and helped me get through one of the most difficult times of my life. For the first time in a long time I saw ME when I looked in the mirror. I felt different about our future and about Tennyson's future - I felt hopeful. I knew I didn't need to stay on the medication long-term, so I stopped taking them. I did not have a history of anxiety before Tennyson's birth. The medication was only necessary for this short transition period.

{word of advice - you should always consult your doctor before you stop taking any medication. I stopped abruptly without consulting my doctor and looking back that was really, really stupid. I had some crazy withdrawl side effects and I won't ever do that again...lesson learned.}

There are two pieces of writing I came across (at different times) that I could identify with. They helped me feel like I was not alone with the feelings I was having in the early days, especially when Tennyson received the diagnosis of cerebral palsy. I want to share them with you. If you are new to the "special needs" community, you might find some comfort in reading them. And even if you aren't, it might help you to understand more of the emotions and phases that people go through. You need to read the first one, to fully understand the second.

Here is the first one:

Welcome To Holland

By Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Here is the second:

Amsterdam International

By Dana Nieder

uncommonfeedback@gmail.com

© Dana Nieder 10/2010 All Rights Reserved

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

 
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

I hope you enjoyed those two stories. I no longer spend weeks, days, or even hours in the airport. I left the airport. I have airport moments, but even those are few and far between. I hope people realize mental health is a really important issue, not only for new moms, but especially for moms who didn't have a typical experience or typical children. People don't talk about it very often, but there is no shame in getting therapy, or taking anti-depressants. I'm not ashamed to admit I needed some extra help and neither should anyone else.

E-mail me at tennsense@gmail.com with questions or feedback.

Amy

Wait! There Is More Good News!

Well, we have officially started Tennyson on her new medicine - Leucovorin. We wanted to start it last Wednesday, but the medicine had to be special ordered and then compounded (turned into a liquid) since she will take it through her g-tube. We gave her the first dose last Friday evening and I am so excited to see what happens!

Her therapists shared in our joy when we told them the great news. They have invested so much time in Tennyson and it’s wonderful to see them share our excitement. She has wonderful therapists. We recorded some of her therapy sessions last week to evaluate her skills. This way we have a baseline to compare any progress she makes.

Here is some of the video so you can get an idea of her physical capabilities:

I think it is beneficial for you to see what she does now so you can see her progress when it happens.

It’s difficult for me to imagine Tennyson different than she is now. It’s hard to imagine her mobile and talking, but I am hopeful she will make progress. I’m excited to know more about my daughter – like her favorite color, toy, and food. I’m excited to hear her sweet voice. I’m excited to help her learn to use her body so she can move where she wants to go.

It seems the good news just keeps on coming! Yesterday we traveled to UNC in Chapel Hill for Tennyson to have a modified barium swallow study (also known as a video fluoroscopic swallow study). A swallow study is when a liquid (barium) is given by mouth to see if it is being swallowed properly or if it is going into her airway when she swallows. The barium shows up on a screen of what looks like a continuous x-ray. The entire anatomy of her mouth and throat can be seen, including where the barium goes when she swallows.

Ideally during a study, a child would sit still and swallow liquids of different consistencies, following commands to open their mouth and swallow when instructed. Tennyson didn’t get that memo.

Our swallow study went something like this:

As soon as we walked into the room, the whining began. Despite my attempts to fool her with my excited voice and saying “we are going to have fun!!!” she moved into hysterical crying. My promise of warm milk certainly didn’t change her mind. I sat her in the chair and she began “the silent cry” – you know, the one where their mouth is open and nothing is coming out because they are going to “SCREAM CRY” the next breath they take?  The bottle was prepared and I stood in front of her trying to coax her to take a few sips from the bottle.

{Recently, she enjoys drinking from her bottle because there hasn’t been pressure for her to drink large amounts now that she has a g-tube.}

After about 5 minutes of crying and attempts to help her wrap her lips around the bottle, I asked to give her a break to see if she would calm down and get down to business. We sang a few favorite songs and I was able to make the tears stop. She gave me a few giggles. I thought she was going to be okay, but as soon as I offered the bottle the tears flowed freely again.

Plan B was put into action. I had to pour the liquid into her mouth with a spoon while she cried and then wait for her to choke it down between gasps of air. {Sounds fun, huh?} I poured about 4 spoonfuls into her mouth and the torture was over – for both of us. Thank God.  She was sweating from crying. I was sweating from trying to stop her from crying. We were pretty exhausted by that point.

Tennyson has never passed a swallow study in her life – UNTIL YESTERDAY! Even through the hysterical crying, she managed to protect her airway when she swallowed the thin liquid. I guess the results made it all worth it. No liquid went into her airway when she swallowed. It’s exciting to know that she is protecting her airway and we can move forward with feeding therapy knowing she is safe. This was scheduled as a follow up from her laryngeal cleft repair last May. It can take anywhere from 3-6 months to see optimal results from the repair. Looks like it worked! On a side note, Tenn still has reflux, but the swallow study shows that she is not aspirating liquids into her lungs.

Amy

e-mail me at tennsense@gmail.com with feedback or questions.

The Results Are In

I know a lot of you have been anxiously waiting for Tennyson's lumbar puncture results right along with us for the past two weeks. I know you have been praying for her and I want to thank you for any time you spent praying to God on Tennyson's behalf.

Tonight we received the news we have all been praying for! Tennyson will be treated for cerebral folate deficiency! I can't even describe the happiness our entire family is feeling right now.

I'm writing through tears right now - happy tears - but I can't seem to control this renewed sense of hope and confirmation that God is faithful and has an incredible plan for this little girl.

This is how I found out tonight:

I called earlier this morning to check if the results came in yet. Nobody answered so I left a message. When 4:30 p.m. rolled around, I figured I wouldn't hear from anyone and decided to just check back tomorrow. I needed to go to the grocery store, so I left the sweet girl with the husband and headed to Walmart to shop in peace. I was on the phone when they called and I had to hang up quick with Tennyson's Nana so I could get the call. Eeeek! They were calling!

I answered the call and it was our neurology nurse practitioner (we like her) and she let me know she literally received the test results about 5 minutes before she called me.

Eeeek! She had the results!!!! She said they wanted to treat Tennyson for cerebral folate deficiency! I think I squeaked out, "that's so cool!", and already started crying.

She said that the normal range for folic acid was between 40 and 150. Low numbers are more deficient; higher numbers are less deficient. Tennyson's results came back with her level at 46. She is considered borderline deficient, but the doctor whom reviewed her results recommended treatment. She also mentioned the doctor was a top specialist on CFD and I couldn't have asked for a better doctor to be reviewing Tennyson's results. She said they were hopeful for Tennyson to make progress once we began treatment. We start treatment tomorrow! She already faxed in the prescription to our pharmacy.

I'm sure I looked a little mentally unstable as I was tearfully grocery shopping this evening. I was overcome with emotion. I don't think I realized how badly I wanted this for Tennyson. It's an incredible feeling to feel hope again. I mean, I've always had hope for Tennyson's progress, but this just feels differentt. I think it's because the doctors sound so hopeful. They are usually more reserved. I might get to hear my daughter say, "I love you", or have her reach out to give me a hug, or watch her learn to walk. Those were things I never realized I wanted so badly.

My mind just raced with all the things that she could potentially do. At one moment, I realized I was just standing in the produce section staring at the floor with tears on my cheeks. I was probably starting to scare people. My husband called and I told him the good news. When I got home and walked through the door, we all hugged each other as I held Tennyson.

Tomorrow is the first day of the rest of our lives. I have a feeling we are all about to witness a miracle and I'm so excited all of you will be right here to witness it with us!

e-mail me at tennsense@gmail.com with questions or feedback!

Amy

My Music Baby

There is something unique about Tennyson when it comes to music. She always has music around her, whether I’m singing a good morning song, or playing a children’s CD (my husband’s fave!) in the car, or going to Kindermusik classes . . . she’s always been around it. We sing when we change diapers or get dressed, we sing when she gets a bath, or when she’s drinking a bottle. The more I think about it, I sing a lot to her. It’s something that is calming to her and she always seems to smile when we sing. Her favorite song for a long time has been, “Twinkle, Twinkle, Little Star”.

I can’t take any credit for what you are about to see, though, because she doesn’t do this when I sing! {Thank goodness!!}

We first noticed this around the time she was 15 months old. It was Christmas time and there was a Susan Boyle song on. Out of nowhere she started to cry. She was inconsolable. It was bazaar. She had never acted like that. It took us a few minutes to figure out why she was crying, but we eventually turned the music off and she stopped crying. We turned the music back on and she started crying again. We turned it off and she stopped. We sang the same song to her and she began crying again. We were really confused why Susan Boyle had made our daughter so emotional. And there always seems to be a lingering effect and if Tennyson hears a small piece of the song, hours later, she immediately returns to the emotional state she was in. {I also found it interesting that Susan Boyle endured a lack of sufficient oxygen during her birth as well.}

For awhile it was only Susan Boyle that could make her cry. Soon, it was commercials, American Idol singers (like Pia – the ballad singer, was a sure bet for tears), and most recently Adele. We showed our family and for the most part, she repeated what we had seen. But isn’t it “Baby Law” to make little liars out of parents when they want a baby to do something on command for someone else? Tennyson can get very excited when she hears songs like “I Gotta Feeling” by the Black Eyed Peas and sad when she hears “Someone Like You” by Adele.

Some family members wanted to see a video of it, so my husband took this video:

After watching that video, some thought she had been swayed by my husband’s voice, so he took another video while Tennyson’s Nana was visiting. In order to show that no provoking of emotion had occurred, there was no talking allowed.

Here is the second video:

We mention it to doctors from time to time to see if they have any interest or can offer more information, but so far nobody seems to have any explanation. We have yet to meet anyone else who has a child that reacts in such an emotional way to music. Thought you all might find it interesting as well!

From our own research, we know that music can stimulate emotions in the brain. The Book “Musicophilia” by Oliver Sacks (a neurologist) was recommended to us when we mentioned this to an EEG technician while she was in the hospital for her seizures. It is a book all about music and the brain. Sacks writes, “While music can affect all of us – calm us, animate us, comfort us, thrill us, or serve to organize and synchronize us at work or play – it may be especially powerful and have great therapeutic potential for patients with a variety of neurological conditions.”

One thing you might find particularly interesting if you have a loved one who has dementia or Alzheimer’s is that, “the response to music is preserved, even when dementia is very advanced. Musical perception, musical sensibility, musical emotion, and musical memory can survive long after other forms of memory have disappeared. Music of the right kind can serve to orient and anchor a patient when almost nothing else can (Sacks, 2007).”

I would be interested to know if anyone reading has had similar sad emotional reactions with their child and music. Although we do not fully know Tennyson’s capabilities and limitations, we do know she responds to music differently than most children her age. She has really good taste and connects to emotional singers quickly. Whether she will be able to sing well or play music in the future is something we will have to wait and see (or hear).

E-mail me at tennsense@gmail.com with feedback or questions.

Amy