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

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

The Good, The Bad, and The Lucky

July 19, 2015July 19, 2015 by Jaime S. G. ♥ 2 Comments

Tonight (or, I guess 3 am is morning) all I can think about is how lucky I am. The most immediate reason is that she is actually sleeping through her 3 am feeding! This means that I get to just do an NG feeding and I then I can go back to bed! We get one NG only feeding in a 24 hour period. Previously we were doing it for the 3 am feeding, but for the last week and a half she has been nice and awake for it. Nice and awake = bottle + NG feed. Also, by “nice and awake” I really mean “awake and fussy” or “almost beside herself”.

That is where the other part of me being lucky kicks in.

I am lucky because my mom has been here helping us, especially with the middle of the night screaming. She has also been helping us pack, prepare meals, and keeping mommy sane. I am not totally sure I would have survived the last week without her help. What makes me even more lucky is that she is able to stay for yet another week. Bless Grandma!

Oh! And my sister is here! That doesn’t really make me lucky, but I am still really excited. I mean, I am lucky to have her as a sister (please read previous post about where we are moving to in Colorado), but her being here isn’t totally related to why I feel so lucky right now.

I guess that I will throw the “bad” in the middle of this and end on a high note. Well, the middle of the night screaming had been …… awful. Given, my mom has taken the brunt of it. We live in a 2 bedroom apartment so Lyra and Grandma have been roomies for the past few days. There hasn’t been really anywhere for her to escape to when Lyra is having a rough night. My mom has taken the 1 am – 3 am shift, and I have been taking the 3 am – whenever Lyra lets me go to bed shift. Now, my husband has been taking his fair share of it too. He has been doing the midnight feeding. From what I hear, it has been tough.

The other “bad” part is that we have had to stop giving her breastmilk. Now, I know that babies who grow up on formula turn out just fine. Hello, the person typing this blog is a formula baby. It was just really hard for me to give it up. I have spent countless hours pumping since the day she was born. At times, I felt like it was the only thing I was doing right in terms of taking care of her. Just over a week ago I was desperate to feed her and I didn’t have any milk ready. It was all way too cold and she was super hungry. I grabbed a premixed formula bottle from our first NICU stay, threw a nipple on it, and prayed she would take it. To my surprise (and slight horror), she sucked it down. Not only that, she didn’t scream. Thinking that it might have been a one time thing, I tired again for the next feeding and had similar results.

Lyra didn’t like my breastmilk.

While I was really happy that we found something she would eat and be happier about, I felt rejected in a way. I had poured my heart and soul into pumping for her. I would get up in the middle of the night, even when she was in the hospital, just to pump and make sure that I kept producing plenty of food for her. With all of that time, effort, pain, and sleep deprivation…… she liked formula better. However, once I removed my ego from it, I could focus on the good part of this.

The good part is that she is doing so much better on formula. We have settled on a type that is for lactose sensitivity (for those who knew me as a baby, this will make a lot of sense). She screams less during feedings and her throw ups have mostly turned into sprit ups. Even the spitting up has become less frequent. Feeding has become more positive and she has become more eager to take a bottle (although she still isn’t taking enough by mouth for us to stop using the NG tube). Also, she seems more satisfied. To be honest, I think I was producing something closer to skim milk than whole milk. I won’t bore you with details, but there were signs that I may not have been letting down all of the time. This meant that I wasn’t producing the really fatty milk she needed. Anyways, she is turning into a little butter ball and it makes me really happy to see.

On that note, I am going back to bed…. at 3:32 am! This is a record for the last few nights.

Dealing with the Trauma

July 5, 2015July 5, 2015 by Jaime S. G. ♥ 3 Comments

Trauma is not a word that I like to use, but in this situation I can’t think of a more appropriate one to use. Also, I am not always sure how well I “deal” with it, but I do live with it. The fact of the matter is that my husband and I are traumatized by everything that has gone on. I don’t think a day goes by where I don’t think, at least once, “Am I going to have to take her back to the hospital?” Sometimes this thought occurs because the future is so unknown. Sometimes I have it because we are having a bad day. But, the thought is always there.

There are defiantly some triggers for both my husband and I. The two that come to mind are a poor PO (from a bottle) feeding, and throwing up. When Lyra is only willing to take a small amount from the bottle it flashes me back to desperately trying to get her to take just a little more, and knowing that it wouldn’t be enough to sustain her. Now, I know that she has the NG tube now and she WILL get the nutrition/calories that she needs. That doesn’t stop me from remembering being in tears and begging my baby to “just take a little more” because I knew her tiny body was in desperate need of calories and hydration. It doesn’t stop me from remembering how helpless I felt when I would bring the much needed bottle to her mount, only to have her scream and refuse to suck from it. Most of all, it doesn’t stop me from remembering how defeated I felt when she threw up what little we had managed to get in her.

Throwing up is the other major trigger.

Now, she does still throw up. I get that all babies throw up from time to time, but when you have a failure to thrive baby with a history of feeding issues, it can induce an anxiety attack every time it happens. When she throws up now, all that I can think is:

“What did I do wrong?” “Did I move her too much/too quickly?” “Did I push her to take too much from the bottle?” “Did I start the NG feed too quickly after the PO feeding?” “Is the NG feed too fast?” “Did she get enough?” “Will she keep her next feeding down?”

“Will I have to take her back to the hospital”

On and on and on…….

Now, I know that not all of these thoughts are productive. Sometimes, I did nothing wrong at all. But that doesn’t stop me from thinking some (if not all) of theses when it does happen.

The other thing I struggle with is hearing her cry, especially in fear and/or pain. I know her cries for fear and pain very well at this point, and sometimes I hear them when they aren’t actually happening. Knowing that she isn’t actually crying is a big reason why I don’t like to be in a different room than she is, especially when it comes time to sleep. Even if I am taking a nap and my husband is home, holding her, I swear I will hear her cry and it will send me vaulting out of bed. Tonight was a great example of what I struggle with.

Lyra was fussy most of yesterday (plus she threw/spit up three times). For the midnight feed she did not want to calm down and was very upset through much of the NG feeding. Sometimes, if she is too upset during the NG feed, she throws up. So, my husband and I spent the 25 minutes trading off trying to calm her down without picking her up or accidentally having her gag on her pacifier. Finally, we got her to fall sound asleep at the very end. Rather than risk waking her up in the transfer to her bed in our room, we decided to leave here in the nursery with the video monitor on. Laying in bed, I could swear I heard her crying. I could hear it building into real distress. Opening my eyes, I looked at the monitor only to see her still her peacefully sleeping always. However, even with my eyes open and watching her, I swore I could still hear it. Moments like this make me feel crazy and are hard to acknowledge and talk about, but they happen. I know why the fear is there and the moments that caused me to develop such anxiety about those two types of crying, but knowing and controlling are two very differently things.

For now, we are dealing with our trauma the best that we can. For me, I have to keep reviewing the signs that tell me that she is okay. I also try to find tools, like the monitor, to help show me that she is okay. When I start to panic, or fall apart, about some of this, my husband tells me what I can’t tell myself. I do the same for him when he starts to lose it a little. Right now, we are still a team. We try to recognize when one of us needs a break to regroup, or words about what is different (and so much better) about having her home this time. At this point, we have had her home for the longest period of time yet. As the days go by, I hope the anxiety will decrease. But for now, the best I can do is admit it is there and deal with it by using the few (but powerful) tools that I have.

Lyra’s first 4th of July.

Pink, white and blue was the closest I could get with the cloths that fit her.

Home Sweet Holy $h!t We Are Exhausted

July 1, 2015July 1, 2015 by Jaime S. G. ♥ 6 Comments

Don’t get my wrong, being home is great! I love not having to drive 45 min. to see my baby. I love being able to take a nap without a doctor or nurse coming into the room. I love not having an alarm go off because managed to a lead off her chest. I love not eating cafeteria food all of the time. But just because I am home does NOT mean that I get anymore sleep. Her feeding schedule is tough and very involved. Here is what my/our days look like:

12-1 AM: Mark feeds her (yes, feeding takes an hour)
2:20 – 3 AM: My annoying alarm goes off. I pump while I blog, then I get ready for the 3 AM feeding
3-4 AM: I feed Lyra
5:40 AM: My annoying alarm goes off. I start to warm up a bottle from milk I pumped at 3 AM. Then I re-set the alarm for 6 AM and pass back out.
6-7 AM: My alarm goes off and I used to pretend that I was going to do this feeding because Mark has to get ready for work…. I don’t pretend anymore. Mark does this feeding.
8:20 – 9 AM: My alarm goes off and I debate if I REALLY need to get out of bed yet. The answer is always “yes”. So, I get up and pump and get ready for the next next feeding. Sometimes I even eat breakfast while I am pumping during this round.
9 AM – 10 AM: Feed Lyra and give her the multivitamin (that causes her to spit up half of the time) and her inhaler (this is just for a few more days post opp)
10 – 11 AM: This is when Lyra normally likes to be awake and play. If I have not had breakfast by this point, it is a lost cause until after the noon feeding.
11 AM: Yet another alarm goes off. Time for Lyra to take her Prevacid!
12 – 1 PM: Feed Lyra
1 – 2 PM: This is my best chance to get something done. If she is still awake, we play for a bit, but normally she falls asleep. I also normally try to eat something at this stage.
2 – 3 PM: Pump and get ready for the next feed.
2:50 PM: Normally Mark walks in the door from work. The angles sing, the baby smiles to her daddy, and I throw a little party in my head.
3 – 4 PM: If Mark is home, he feeds her and I pass out in the bedroom. If he isn’t, I feed her and try not to fall asleep while doing so.
4 – 5:30 ish PM: Lyra and I pass out together in the bedroom. If Mark is home, he finishes up his work in the living room.
6 ish – 7 PM: *Sometimes Lyra is hungry a little early for this feeding*. If Mark doesn’t have training her does the whole feeding while “cook” dinner. “Cooking” is a term I use very loosely. Sometimes it means order food for delivery. Sometimes it means I throw something small in the oven. Rarely does it mean using pots and pans. If Mark is training, I quickly eat dinner (read “throw something in a bowl and hope it is filling enough”)
7 PM – 8 PM: Play with Lyra if she is awake
8 PM – 9 PM: Pump and get ready for the next feeding
9 PM – 10 PM: One of us feeds Lyra. It really depends on the day and what we have going on. However, I always go to bed after this feeding and Mark often lays with her on the couch to catch a few Z’s.
11 PM: Lyra gets her meds again and we start the whole thing from the top.

There is no “weekend” schedule. There is no easier way to do it. This is what our daughter needs, so this is what we do. It is just….. exhausting. In three weeks we will re-evaluate with the doctor and see if she has gained enough weight at that point. If she has, we might be able to modify things a little. Until then, this is what we will do!

Lyra had rolled onto her side while I was pumping. Tyke was making sure she didn’t roll any more.

****Why it takes an hour to feed Lyra: First we change her. Every time. This helps wake her up if she was sleeping. Next, she takes what she can by mouth from the bottle. She has 20-30 min to do this, but she honestly is normally done after 10-15. Eating is hard and exhausting for her. She normally only takes about an ounce (30 mL- 40 mL) and than she is done. If we try to push it (and we have), she pukes. After that, we have to prepare the tools we need to feed her via the NG tube. We then check its placement, flush it, and feed her. She gets about 2mL/min. So, if she only takes 30 mL, we have to give 55 mL via the NG tube. This takes us close to 30 min. After that we have to clean the bottle and all of the tools used in the NG feed. All in all, it takes about an hour.****

Learning To Thrive

Tag: Trisomy 9p Syndrome