Monthly Archives: August 2015

Is Back Always Best?

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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.

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Her first North Face jacket. Welcome to Colorado!

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Swimming with Uncle Kyle.

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

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Things NOT to say to me about my child

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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:

  1. “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”.
  2. “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.
  3. “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.
  4. “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.
  5. “Why doesn’t she eat?” – If we knew why, we might have more of a solution.
  6. “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:

  1. There is no better way to ask the first question. As stated before, if it were that easy, she wouldn’t have a tube.
  2. “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.
  3. 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.
  4. “Was she a premie?” – Once again, this answers your question, but does it in a nicer way.
  5. “Do they know why she doesn’t eat?” – As with #2 and #4, this is just a nicer way to state it.
  6. “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:

  1. “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.
  2. “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.
  3. “Does she take a bottle at all?”
  4. “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:

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Look at me sitting like a big girl!

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Hello Mr. Lion. How are you today?

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Swimmer girl bath time

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I have officially found my thumb

Home Sweet Colorado

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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.

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Cousins

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Urgent Care Trip! Welcome to Colorado!

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New Toy!

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Not amused Mom!!!

General Update

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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.

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The “What If….” Game

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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.

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