“Yay, a Fart!”…. Something I Never Thought I’d Say

September 10, 2015September 10, 2015 by Jaime S. G. ♥ 0 Leave a Comment

Okay, I never thought I would be so excited about a fart. Well…. three farts to be exact. Why am I excited? Because it means that Lyra’s pipes are starting to move again! This means taking one of the tubes out of her nose and being able to ween her off of IV fluids. One happy Mamma!

To catch some of you up, in my last post I mentioned that Lyra needed another surgery. Well, about two days later she stopped being able to keep anything but pedialyte down. While we were able to keep her hydrated, she wasn’t getting any nutrition. On Sunday the decision was made to admit her to the hospital and for her to have surgery ASAP. They tried to fit her in Sunday night, but she ended up not having the surgery until Monday afternoon. Due to some other tests they had to run, she was under anesthesia for over six hours. It was gruelling for Mark and I, but luckily my parents were there to keep us distracted (we will have to have a Hearts rematch later). Lyra did great during the surgery and has been recovering really well.

Out of surgery she had three tubes. One goes down her left nostril, past her stomach, and past her duodenum We will be using it to feed her now that her intestines are waking up and are moving again (she just started getting 3 mL/hr in that tube). The second one, down her right nostril, was draining fluid from her stomach to reduce pressure on the areas where they performed surgery (they were able to take that tube out this morning). The third tube is her G-tube, which is currently just being used as an additional drain. Once we know she can tolerate her food and things are really working, we will start to feed her through this tube.

Since surgery she has only had to have four or five doses of morphine. Other than that, she has only been on tylenol and ibuprofen for pain (not bad for having your intestines mucked around with). She has had moments of smiling and playing. Her current favorite thing to look at is a giant dragonfly balloon that Grandma brought in yesterday. She has also been sleeping soundly when she sleeps. As I mentioned at the beginning, there are signs that everything is starting to move again! She farted a whole three times! Now we are waiting for her to actually poop…. I have never anticipated someone else pooping so eagerly in my life.

Anyways, the point is, she is recovering well. She will likely be in the hospital for at least two weeks, but it’s for the best. She is well taken care of here and Mark and she has lots of eager visitors. Thank you everyone who has reached out to offer support.

Lyra right after surgery

Lyra yesterday (I couldn’t resist putting a bow on her)

Lyra today… Good Morning Mommy

(The brace is just so she won’t pull her tube out. She has been trying)

P.S. I do have more photos like the series from her last surgery, I just have to use a different computer because mine is having issues with downloading photographs from my good camera.

Prepping for Surgery and a Note From a Friend

September 7, 2015 by Jaime S. G. ♥ 1 Comment

For those of you who don’t know, we are back in the hospital already waiting to have surgery. Lyra stopped tolerating her formula, and she couldn’t live on pedialyte. Upon admittance yesterday we were told they were going to have her go in for surgery ASAP. There was the potential for it to happen last night, but now it looks like it will happen this morning.

A friend of mine sent me the narrative below (in bold) the other day, and I wanted to write about it. She did not write it, but it really struck me. I was thinking about it quite a bit last night, but fell asleep before I could write about it:

Some Mothers Get Babies With Something More
-Lori Borgman

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law.

You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

The part that got to me last night was, “You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, ‘Choose me, God! Choose me! I’ve got what it takes.'” While there is much in motherhood that no one signs up for, there are moments when I think, “I really didn’t sign up for this.” Those moments, for me, have nothing to do with anger. They don’t happen when she pukes on me for 8th time that day, or when she is screaming at night and won’t sleep (although those moments I have other thoughts…. a particular book comes to mind). No, I think that when I am getting news that something else is wrong with her, when I am holding her down and she screams while the perform another test, or when I sign more consent forms for surgery.

I am sure I will think it when I hand her to the nurse and watch them walk into the operating room. I will think it every minute for the 3+ hours the surgery will take. I will think about it when I see her right afterwards. And I will likely think it every day we are in the hospital this time (it could be weeks).

While I may not have signed up for it, I can’t change it. I am not a hero. I am not any more than any other mom. I do what my child needs, and what is best for her. Sometimes, she just needs a little more.

The Blessing of Family

September 2, 2015September 3, 2015 by Jaime S. G. ♥ 2 Comments

I am one of those people blessed with a supportive family. That is not to say that we don’t have our own conflicts, lord knows we do, but at the end of the day we support each other. For me, yesterday was one of those days that I needed a little extra support. Most days I deal just fine with Lyra’s diagnosis. I put my head down, take care of what she needs me to take care of, and I try to keep a sense of humor about things. Other days I find the uncertainty overwhelming and sad.

All parents have dreams for our children. We look forward to taking that picture on their very first day of school. You know, the one where the backpack is so big compared to their little bodies that we are worried our little one is going to tip over. We look forward to their first words, tottering steps, and their first birthday cake all over their cute face. I looked forward to her first swim meet and sharing a sport that I love so much with her.

Then I am reminded that she may never do any of those things.

She may go to “school” at some point, but it will be nothing like what the average child experiences. While she will likely speak (she is very vocal right now), she will likely struggle to make herself understood. Forming words and/or sentences is listed as a challenge with both of her genetic conditions. She will likely struggle to walk, let alone run. And birthday cake….. yesterday we met with the surgeon to talk about putting in a G-tube (information below). Unless sometime really changes with her eating, that cake will not be on her face. Everyone around her will eat it, but she probably will show little, to no, interest. Lastly, while she already shares my love of the water, swim meets and a swim team may not be in her future.

So, some days I get really sad. And this is where my family steps in. I can always talk to my husband and my family was always available over the phone, but there is something about being able to sit with my mom on the back patio while she plays with Lyra. There is something about sharing a drink a with my brother-in-law. And it is so different to be able to sit on the couch with my sister with Lyra sleeping on my shoulder. The physical presence of family makes all the difference for myself, my husband, and most importantly, Lyra.

Some time in the next two weeks Lyra will be having surgery to have the G-tube placed (we do not know the date yet), and this will be a very different hospital experience than the last three. This time there will be no emergency room, no ambulance ride, and no frantic phone calls to get our lives reorganized. This time it will be planned, and she likely will not be in the hospital for more than a day. This time we won’t have to worry about who is going take the dog. This time I will actually have a bag packed for myself. And this time we will all be surrounded by family.

We are truly blessed to be here.

G-Tube information: http://www.chop.edu/treatments/gastrostomy-tubes#.VeePadNViko

Is Back Always Best?

August 29, 2015 by Jaime S. G. ♥ 4 Comments

I am writing, once again, at 1am. It has been awhile since I have written a post at this time, but I can’t sleep. I guess all moms are up at this time at some point.

Tonight I have been dealing with a complication from Lyra’s NG tube. Lyra has now had an NG tube for over 2 months. As a consequence, she has major problems with congestion sometimes. Basically, the tube irritates her nasal passages causing more mucus to be produced. Moving to dry Colorado has not helped the congestion situation and the problem can become more pronounced when she is laying on her back. Given, Lyra sleeps on a 45 degree wedge, but that isn’t enough when she is congested. Tonight I basically woke to her choking on her own mucus. My husband and I frantically ran around picking her up, turing on lights, disconnecting her feed, and dashing into the shower. After stripping her and getting her (and my clothed self) into a nice steamy shower, her breathing rapidly improved. She has been changed into a dry diaper, given saline drops to loosen the mucus, and wrapped in a new blanket (I skipped the pj’s). After that, she promptly fell sound asleep on my chest. This time she never turned blue (as far as I could tell), but when this happens it scares the living snot out of me.

….I couldn’t think of a better phrase at 1 am….

So now, I am faced with a new dilemma. Do I put her back down on her back, like I am supposed to? OR, do I put her down on her stomach where she is less likely to choke on her mucus? Since before I became pregnant I have preached to that babies MUST be put down on their backs. I understand that, since doctors have started recommending this, the number of SIDS cases has gone down. However, she is gagging on her mucus when I put her down that way, so is it really safer for her at this point? My instinct says, “NO!!!!”. At the moment, she is on her tummy and I am sitting 10 feet away listening to her breath. We have two humidifiers running full blast (and have all night), and she sounds so much better. She is sleeping peacefully with her little hands tucked under her chin.

But the guilt won’t leave me.

I sit here, wide awake, looking at her and wondering if I should just flip her back over. I know that is what the doctors would likely recommend, and it has been pounded into my head that babies must sleep on their back (although they don’t always in the hospital…. that is another story). However, the rational side of my brain points out that, when she gets congested like this, putting her on her back only leads to a scary situation for her and us. At what point is her sleeping on her back doing more harm than good? I don’t have an answer.

So, for now, I sit and watch my little one sleep away, on her tummy. At least, if I can listen to her breath, I know she is okay.

Her first North Face jacket. Welcome to Colorado!

Swimming with Uncle Kyle.

She pulled out her tube, so we let her enjoy some “no tube” time.

Things NOT to say to me about my child

August 27, 2015 by Jaime S. G. ♥ 1 Comment

I thought about titling this article “things not to day to a parent of a child with a feeding tube”, but I honestly don’t really know any other parents of children with a tube to compare notes with. So, this is an article about what not to say to ME.

Recently I attended a “Mommy” workout class at a local community center. It worked well for me. I could bring Lyra and get a great work out (omg I am so sore right now). However, my child does spawn many questions and comments. First off, everyone notices her because she constantly talks….. The apple did not fall far…. Upon looking at the source of all that noise, people see a brilliant smile (hers, not mine) and a big piece of heart shaped tape holding a tube in her nose. I know that people mean well, they really do, but that doesn’t mean that their comments are any less hurtful/rude. Not all of the following were said to me during this class, but they have all be said to me at some point:

“Why don’t you just wait until she is hungry?” – This one makes me the most angry, so I am putting it first. I have cried over my baby begging her to just eat a little bit more. I watched her deteriorate from dehydration in an ER while doctors and nurses over looked the fact that she needed an IV. Also, don’t you think the doctors would have skipped the whole feeding tube thing if it was that easy? So please, don’t tell me to “just wait until she is hungry”.
“Do you breastfeed?” – This is normally asked by a breastfeeding mother. As if I don’t feel guilty enough after being preached to continuously while I was pregnant about how I should only breastfeed. No, I do not breastfeed. Hello, the kid barely eats. I tried. Trust me, I tried. Breastfeeding meant Lyra screaming her head off and both of us ending up in tears. Also, since we have to carefully measure everything she takes it, I was told by multiple doctors NOT to breastfeed. I did spend countless hours her first two months of life pumping so that she could have breastmilk, but she grew better once we put her on formula. So please, get off your high horse and don’t try to guilt trip me.
“She is so tiny” -The comment by itself doesn’t bother me too much. It’s more the look on the their face, and their tone of voice, when they say it. It’s as though I have been totally negligent. Yes, my daughter is very small. At almost 4 months old, she is just now starting to grow out of her 0-3 month clothing. She basically didn’t grow for the first month of her life.
“How early was she?” – Please, don’t assume that because someones baby was in the hospital (or they are really small) they were really early. Lyra was born on her due date. She is a full term baby.
“Why doesn’t she eat?” – If we knew why, we might have more of a solution.
“She doesn’t look funny.” – Your kid does, is there something wrong with them? This comment ticks me off because it assumes that if someone doesn’t look “normal” there must be something wrong with them. Plus, there are a lot of really ugly babies out there who are totally fine. As they say, looks aren’t everything. Also, what if she did look really different? Would you say, “Oh, so that is why she looks funny”? I would hope not.

So, I do understand what people are getting at when they ask me these questions. Also, I am very open about her diagnosis and what is going on. So, here are some better ways to ask most of those questions:

There is no better way to ask the first question. As stated before, if it were that easy, she wouldn’t have a tube.
“What does she eat?” – Know, for those of you who feel superior because you were able to breastfeed for the fist five years of your kids life (I know I am exaggerating), this question is not as satisfying. However, it is much more polite. It also gets your question answered without ticking me off.
You can comment on her size, but try to make it sound like it’s something cute. She is is pretty darn cute, so it shouldn’t be hard.
“Was she a premie?” – Once again, this answers your question, but does it in a nicer way.
“Do they know why she doesn’t eat?” – As with #2 and #4, this is just a nicer way to state it.
“She is so cute!” or nothing at all – She is really stinking cute, so say that. Also, if you think she does look “funny”, or you come across another kid who does look a little different, keep that to yourself. Don’t you remember the old statement, “if you can’t say something nice, don’t say anything at all”?

Other questions that are totally fine to ask:

“What is the tube for?” – The tube is right there out in the open. There is no hiding it, and pretending it’s not there is just silly. I know people are curious, so just ask. Most of the time I just say something about it anyways.
“Will she ever eat normally?” – This is a logical question. The answer is that we don’t know, but it makes sense that you would ask.
“Does she take a bottle at all?”
“What is the prognosis?”

This is far from an exclusive list, but you get the idea. As I stated above, I am totally open about Lyra’s diagnosis. So please, ask about it. I freely tell people that she has two genetic disorders. It’s nothing to be ashamed of, and education is everything. Also, if I talk about it, maybe I will find someone with the same (or similar) diagnosis. Anyways, that is my rant. Now, enjoy the cuteness that is Lyra:

Look at me sitting like a big girl!

Hello Mr. Lion. How are you today?

Swimmer girl bath time

I have officially found my thumb

Home Sweet Colorado

August 21, 2015 by Jaime S. G. ♥ 1 Comment

Sorry it has been so long since my last update, but we moved across the country and life was a little crazy. While we will dearly miss our friends in the DC metro area, it really is the best move for Lyra and our family. We made it here safe and sound. It was a bit of an adventure with a few miss steps along the way. However, “Team Lyra” has a assembled and everyone is here safely. Now, I would like to give a special shout out to Team Lyra and discus the line-up (my husband and I have excluded from the list since everyone knows we are on the team):

G-Ma: She runs a tight ship and I could not have done this move without her. Not only did she fly out to Maryland multiple times to help us take care of Lyra, she also did a ton of packing, cooking, cleaning, etc. She was my partner on the flight to Colorado. Also, she gave up her “Casita” for 6 weeks. Um, G-Ma of the year? decade? century?
G-Pa: My dad also flew out a number of times to help us with Lyra and has been a wonderful sounding board for all things medical. He has a great way of taking some of the very clinical terminology and making it understandable to the rest of us. He may have just had his knee replaces, but he is still a champion Lyra holder! He will be up and running full speed in no time……. (Dad, that does not mean you are allowed to actually run anytime soon!)
Uncle Kyle: Oh boy, does Lyra love her Uncle Kyle. She lights up with him! He also took the time to drive my car from Maryland to Colorado for me, so that I could fly Lyra here. Such an amazing big brother. Lyra looks forward to her swimming lessons with him.
Aunt Kristi and Uncle Jason: These two live crazy busy lives. Both have high powered jobs with long hours, they have four kids, and they STILL let us move into their house for 6 weeks. Not to mention they helped us find a house to rent and some great furniture we will need. Kristi even went with me to urgent care late at night and spent 2 hours slowly giving Lyra fluids while I caught up on some sleep (Lyra was okay, she just had a little stomach virus). Oh, and they obviously love my daughter and are happy to help hold her, even when she is being a little fussy.
Nico: He is a 15 year old boy who is totally interested in his infant cousin. Um, where did he come from? He is great playing with her and his so interested to learn about what is going on with her. I am sure he will teach her all sorts of bad habits down the road. Isn’t that what big cousins are for?
Sofia: Three words, “Mommy’s little helper”. Sofia has helped me a ton since we have been here. She is amazing with Lyra and Lyra basically thinks Sofia is amazing. Some days, Sofia is the only one who can get Lyra to fall asleep for a nap.
Sarah and Emma: While Sarah and Emma may seem a little young, they do something that is amazing for my little girl. They play with her. They make faces, call her name, and spend time on the floor with her. The girls may look at it as just silly play time, but mommy sees it as cognitive development. Love these little girls.

While there are many qualities that I have left out for each of these individuals (I could write a book about some of them). You get the idea. Lyra is surrounded with a tremendous amount of support here (and so are Mark and I). All of our lives will be richer and better just having them so close….. A picture of the team will be posted soon.

Cousins

Urgent Care Trip! Welcome to Colorado!

New Toy!

Not amused Mom!!!

General Update

August 9, 2015 by Jaime S. G. ♥ 0 Leave a Comment

Today’s posting doesn’t have much of a theme beyond giving a short update on little Ms. Lyra. Last week we saw cardiology, ENT, OT and the nurse stopped by. Cardiology just did an EKG this time and the results were good. It was funny watching her get hooked up. There were 14ish sensors on her little body (see picture below), and she smiled the whole time. She won’t need to go back until she is 6-9 months old. ENT said that she looks and sounds great (they are the ones who performed her surgery). She doesn’t need to be followed up by ENT at all, unless something new develops. GO LYRA! Also, we were weighed again at the end of the week…… 10 lbs. 13 oz!!!!!!!!!! It is a huge milestone for our little one. She gained 14 oz in about a week. Last week was a very good week for Ms. Thing.

The “What If….” Game

August 2, 2015 by Jaime S. G. ♥ 2 Comments

Before Lyra was born, I played the “what if….” game a lot.

“What if I didn’t hear her cry when she was born?”

“What if she ends up in the NICU?”

“What if I can’t breastfeed?”

“What if she is not okay?”

I continued to play the game after she was born, between her hospital stays: “What if she stops eating again?” etc.

Well, most of things I thought of playing the “what if….” game happened. She didn’t cry when she was born, she spent time in two NICUs, she never was able to breastfeed, for awhile she wasn’t okay, and she did basically stop eating twice.

So, what did I learn?

I learned two things. The first thing that I learned is the answer to all of these questions: I will but on my big girl pants and deal with it. Her not really breathing at birth was scary, but the doctors and nurses took care of her. The NICU really wasn’t that scary of a place. In fact, the second time around I was able to get some sleep while she was in the NICU because I knew that she would be okay. And when she stopped eating the second time, I bundled her up and took her back to the hospital where we figured things out.

The second thing that I learned is that playing the “what if….” game gets you nowhere. Now, it is good to be prepared for things, but you never know what life is going to hand you. If you keep worrying about what might happen, you may not deal with (or enjoy) what is right in front of you. I could keep playing this game with Lyra now that we have a diagnosis: “What if she can’t walk?”, “What if she has trouble speaking?”, “What if she can’t go to a regular school?”. I know now that this is a waste of my time and energy. The answer is “we will deal with it”. Plus, it takes focus away from everything she is doing now.

Lyra started smiling very early and recently has started to giggle a little (mostly at herself). She is learning to sit up and is developing really good head control for her age. She plays and recognizes my voice/face. Plus, she is getting better (slowly but surely) at eating. So for now, I am enjoying what she does do, and I will deal with whatever comes next.

Let’s Call Today a “Learning Experience”

July 22, 2015July 22, 2015 by Jaime S. G. ♥ 2 Comments

Today was ….. interesting….. Lyra has a follow up appointment with ENT at Children’s Hospital. There had been a little confusion because we thought the appointment was on the 28th, but when we received the phone call to confirm it, we double checked. The office said the appointment on the 28th had been cancelled and her appointment was, in fact, on the 22nd (today).

So, my mom and I prepared. The goal was to be out the door by 10 AM. WE MADE IT! Once we got down to the parking lot, Lyra puked….. So, my mom did a field change in the car while I ran the barf cloths back up to the apartment. After all was said and done, we took off by 10:25ish. We still had plenty of time to make it to our 11:20 appointment.

We get to Children’s and realize that the stroller in in my husband’s car. I ended up just carrying Lyra. The carseat was too heavy.

We then wait for over an hour to see the doctor. Finally, we get called back and a nurse comes in to talk to us. Apparently, we have to see the doctor who did the surgery and that doctor was NOT in the office. Mind you, at this point, Lyra is really REALLY hungry. So, we make a new appointment, they gave us a parking validation, and we left to give her a bottle. The good news is, she took a bottle well!

Finally, we get down to get the car to go home (we had to do valet because the parking lot was full) and the valet can’t find my car. This is a bit more of a problem because my car is old and doesn’t have a fancy button to make it beep. They finally find my car and I am trying to set up her NG feed. While setting up the bag, two of the bottom pieces (including the piece that makes direct contact with the NG tube) fall off and land on the ground of the yucky parking garage…. Oh, did I mention we are having a heat wave in swampy DC?…..The good news is, I had an extra bag! We finally get everything set up with the NG and go to drive out of the garage. The final blow, the validation ticket we were given wasn’t working. Luckily they just let us out.

So, here is what I learned:

Always double check that you have an appointment with the right doctor
Give yourself at least an extra 30 min. when you have to drive a long ways
Always pack extra cloth for the baby and any other people who may be holding the baby (luckily this time she didn’t puke on either of us)
Pack at least 1…. probably 2…. extra NG bags
After all of this, go to lunch and have a nice cold sangria with your mom

Lyra’s Second Swimming Lesson with Grandma

Learning To Thrive

Author: Jaime S. G.