Some of you may think I’m totally crazy- but I have worried about K not getting enough to eat from day 1. The day before we were discharged, I was told that if K didn’t gain weight she would be classified as “failure to thrive” and that scared the crap out of me! So ever since then, I have worried about K losing weight…

Until now, she has not lost any weight! And I finally stopped freaking out- I thought she was in a good eating pattern and I still do! She is eating about 20 oz a day of formula and then she get about 130-160 calories from regular food a day! All of that (calorie wise) is about the same if not more than what she used to take in a day.

And yet today- K went to get her second RSV shot- which they weigh them for… and she lost 1.4 oz since her last appt two weeks ago! The ped. said she wasn’t too concerned… but really- two weeks ago- K should have been a couple of oz UP !! Not DOWN!! So yes, I am very frustrated..

Our kids have enough problems… feeding issues is one of them, and a really frustrating one! And I really thought we were in a good place right now as I’ve mentioned.. so I’m just frustrated on how she lost weight- I know weight gain slows down- and I’m ok with that… it’s just two weeks – some gain should have taken place. K has another appt on the 18th (her 9 month wellness visit) and they said they’d check again. I took a half day to go to that appt!

And I know this sounds like a post for my own personal blog- but I have not posted here in two weeks- and in order for this to pop up in google for people to find when they are in search of answers, I need to get the traffic flowing.. so I had to post here. Besides- weight gain/loss goes with our feeding struggles.

I just can’t believe all those times I was actually worried she didn’t gain weight- and she had- and now when I didn’t worry at all- she lost! ARG! I will not freak yet- I really, honestly feel like she is on a good track.. and if need be I guess I will add that dumb 11 o’clock feeding back into her schedule.. however I don’t think she’ll like that too much.

And this girl doesn’t eat much- I know this compared to healthy babies- but she will not eat when she doesn’t want to be fed. If I think she should be starving, and she isn’t in the mood to eat- she won’t! She isn’t anything like her mom… who eats even when she isn’t hungry! lol

Any ideas? Should I stop stressing? Or is this a good time to stress? What do you think?!

help!

In the video – K is getting her third dose of zantac for the day. She now WANTS the zantac as you can see.. she loves it! However, that was not the case at the hospital, and it most certainly wasn’t when we first started her on it at home. She threw a fit- now when she is throwing a fit, her zantac calms her down.. hmmm

Reflux. Fun right? Watching your baby gag while drinking, and arch their back as they start to feel the pain… burst out in tears spitting out the bottle asking “Mom please stop- I hurt” through terrifying cries… Reflux. AHHHHHHHHHHHHHHH

So if you haven’t guessed yet, K gets reflux… pretty bad. She used to be a lot worse actually- so yes, she has gotten better. She came home with ZERO meds. WOW right?! Most CDH babies wouldn’t dream of leaving the hospital without any meds, but K did. I think it was a month or maybe two months later, not sure- she started having real issues with reflux. She would throw up- not often, but once was enough for me. She would arch her back almost every time I fed her. At one point she would cry as soon as she saw the bottle. So I finally got an appt! My ped called my doc in Syracuse (K’s surgeon) and they called right away and asked for my pharmacy- calling in Zantac and Reglan.

Today, K is just on Zantac – a good amount, 1.5mL’s. But if it helps, it so worth it. Which oddly- back to the poop post- is part of her issue with constipation. So it’s either reflux to the point feeding is impossible, or feeding her prune juice and prunes everyday so she can kick that constipation side effect.

So- how do you know if it’s reflux? What do you do? How can we help our little darlings?

“The most common symptoms of gastroesophageal reflux in infants and children are:

-Frequent or recurrent vomiting.
-Frequent or persistent cough.
-Refusing to eat or difficulty eating (choking or gagging with feeding).
-Heartburn, gas, abdominal pain, or colicky behavior (frequent crying and fussiness).
-Regurgitation and re-swallowing.”

Meds did help K. Zantac does the trick- however that isn’t to say K doesn’t suffer sometimes. She goes in and out. When she isn’t doing well with it now, she most often does the gagging thing, regurgitation deal. It’s not often the food will come back up- but if it does, she most often swallows it again. I feel awful- so I let her play while she eats. She needs to keep her hands busy otherwise she’ll pull my hair- ouch!

I know a lot of babies are on prevacid. I’m not familiar so I can’t talk about it- but I would love someone to! I know some babies go home with a lot of meds, I remember reading Ruby’s blog, and they took a pic of all the meds she got throughout the day- there were quite a few.

After eating-

I hold K up for at least 15 min. Often times she is tired, and wants to lay down- but she can’t so, all I can stand for is 15 min of her being absolutely miserable and my back breaking bc all I can do is stand otherwise she’d cry! But I have heard it’s 30 min! So hold that baby up- when they get older, they can sit up- which K does do sometimes.

Advice on Reflux-

-hold baby up as much as you can while feeding- I used pillows to lift my arm.
- hold baby up after feeding too… helps keep it down.
- while sleeping- create a wedge.
- buy the nap nanny (a friend says so)
- use the meds… they work!
-

From: http://children.webmd.com/infants-children?page=2

What Are the Treatments for Acid Reflux in Infants and Children?
There are a variety of lifestyle measures you can try for acid reflux in babies and older children:

For babies:

Elevating the head of the baby’s crib or bassinet.
Holding the baby upright for 30 minutes after a feeding.
Thicken bottle feedings with cereal (do not do this without a doctor’s supervision).
Changing feeding schedules.
Trying solid food (with your doctor’s approval).
For older children:

Elevating the head of the child’s bed.
Keeping the child upright for at least two hours after eating. (yikes)
Serving several small meals throughout the day, rather than three large meals.
Limiting foods and beverages that seem to worsen your child’s reflux.
Encouraging your child to get regular exercise.

What do you? How do you deal? How does your baby deal? What med’s are you on? This is a great post for parents even if you don’t have a CDH baby as a lot of you have reflux babies.

Poop. To poop. Pooping. Hard. Small. Round. Oval. Smushy. Smeared. All poops I have been a witness to. My personal favorite is Smushy. Smushy poo is a good poo. It’s not constipated, and it’s not a prune juice poo! My least favorite is Smeared poo. This poo basically means she pooped in her jumper and it either went all the way up her back, or all the way down her leg and requires a bath.

Poop. You are thinking, why on earth is this lady talking about poop! haha well if you have a CDH baby- you know exactly why I am talking about poop. For our babies to poop- is one of our (their) greatest feats! We sit after surgery and wait and wait and wonder when will my baby poop? Is her tummy and bowels in the right place, did surgery really go as well as they thought? When will she poop? It’s funny, as I read my journal from being at the NICU- pooping was the main topic for a long time. K didn’t poop instantly, it took a couple of days. I don’t even need to read my journal to remember how I felt that day. The very first day she pooped after surgery was amazing. It was like, yes, my baby is ok. (which doesn’t always work that way- but we were very lucky and it did.)

Now some of you may think this post is not G rated, but really- it’s a babies poop! And us CDH parents pray for poop! I don’t know about you, but I still pray K poops and it’s a good poop. She is often constipated and I feel AWFUL when that happens to her. So I pray for poop, easy poop, smushy poop!

Just about 20 min ago we had a smeared poop. I was on the phone while K was in her jumper, and she pooped. It went down the leg and it was just awful. She flails all over the place so she got it on her hands, leg, foot, back… it was just gross! So needless to say her bath was a little earlier today. But that is what made me remember- this is fantastic to clean up. I often worry she won’t poop, and when she does, I’m worried it’ll be a small round ball that she pushed real hard for!

So to go with a thanksgiving theme- I’m thankful for smushy and sometimes smeared poop!

I remember at the NICU- she didn’t really poop much. I would remember Charlie (who was breastfed and I know had an easier time pooping because of it) always pooped, big time! haha It was always so funny! But I was always so jealous because I just wanted K to poop! But I totally understand why it was different! I just always worried she wasn’t pooping because something was wrong, I swear the nurses at Crouse must really have hated me! I was annoying! lol

It was the same with crying. (a little off topic) But when K was intubated, I prayed to be able to hear her little cry some day. I remember telling Patty that most parents prayed their kid would stop crying, but I always prayed to hear it! Different I know- with normal babies, and now that K is fine, I sometimes wish I could get her to stop as well… but when she is hysterical, it makes me thank my lucky stars because she is hysterical… and hey at least she is exercising those lung! I try to see the bright side of everything because it was too long ago that there wasn’t a real bright side. It wasn’t too long ago K was laying paralyzed in a warmer attempting to get better. So I have to remember every step of the process and be thankful I have her to cry and poop!

And please- share your experience with poop! I love hearing other stories. I love reading your comments! It brightens my day!

I have loved and I have lost. I have cried tears of joy and tears of misery. I have learned one too many things in life. CDH. It is sad to say but I would prefer not to have ever heard of CDH.

However, as I sit here and think about that last sentence I just wrote, I disagree with it. K is my life. K has CDH. I was lucky. But now that I know of CDH- and have learned of all of you and your triumphs and struggles, I can’t say I wish I never knew CDH. However, I wish I was famous. I wish I had a billion dollars- because if I had all that, CDH would be more known. Someone would be trying to help it. Someone would be trying to up the chances of survival. If and only if I were somebody. But I’m nobody. And that frustrates me.

I have loved. And I have lost. I have had two grandparent taken from me and one aunt all from a different form of cancer. Cancer is ugly. It has taken people I love away from me. Now just imagine that being your baby. And imagine that baby being taken from you from an unknown killer. CDH is ugly. Yet no one seems to be trying to help it “de-uglify” unlike they are with cancer. True, cancer is not as rare… but does that make it more important? How do doctors and researchers know which monster to help? Why can’t we help them all? Aren’t there enough movie stars and rich people out there that could help all monsters? I would love to, but I’m struggling myself… money isn’t something that I have much of. So, wouldn’t someone with money want to help us with CDH?

I guess I’m frustrated with the loss of our ….”not meaning mine, but I feel as though each CDH family is a part of me” ….last CDH baby- baby Andrew. I really thought he was going to make it… but when I woke up this morning, and did my blog stalking, I learned that he had earned his wings at just under a month old. I’ve become more and more frustrated at the fact that quite a few of the blogs that I stalk on a daily basis, have lost their baby to CDH. I wish I could start an organization- and blend it with all of the others to become the largest organization ever, and then maybe people would take notice… but I can’t. Life doesn’t allow for me to take a break and try to help a monster in disguise.

When I learned of Letters for CDH- Kellie’s blog (Carter’s Mom) I was thrilled. She came up with the greatest idea and it still has a chance to work- I hope. It’s something like that, that would make me take notice. So I assumed so would Oprah and Ellen. And they may still- I guess I just put a lot of dreams in with this project…and had hoped it would work instantly- DUMB I know… but I just didn’t want another CDH baby to lose this battle.

This is something a parent should NEVER have to know. I remember I watched a video on CHERUBS and this mom got up in front of everyone and told her story. She had a CDH baby- who lost the battle… she was pregnant again, CDH baby again- who lost the battle. What story will make these researchers and famous people with all the money in the world sit up and take notice?

I figure not too many people read this blog as my stats have shown, and that is fine. I didn’t expect this blog to change the CDH world… but I figure I can say what is on my mind, and if it offends someone, to stinkin bad! I’m frustrated with the loss of yet another CDH baby. I’m also very frustrated at the fact that those who do survive can reherniate and re-live this whole surgery process all over again (Baby Jaime). He has had a rough couple of weeks, and his poor mother, strong at that, should not have to go through this. Baby Jaime should be home, and happy and healthy. I worry about reherniation every day. I’m so thankful that K is alive. I’m so thankful she is home and healthy. But that doesn’t take away my worry. My fright.

Patty again, gave me another idea. Thanks Patty!! What would I do without you!!

Trick for a Treat?  Hmm what on earth is she talking about… Halloween?  No- not quite.  Some of you may know, others may have not experienced any trouble yet, but sometimes our CDH babies are very angry eaters…(maybe not angry sometimes, but you get my drift.)

I know that my CDH baby has her ups and downs- and I know you parents with normal babies think, DUH Kate, all babies have their ups and downs.. BUT it is WAY different for us CDH parents. (if you ask me) My reasoning is because of the way we left the hospital.  K couldn’t leave until she gained weight. She was losing, and losing- she wasn’t eating enough… so finally they put her on 24 cal formula, and the next day, we went home.  So I guess that is burned in my brain that if she doesn’t keep gaining, then something is wrong!  OR- if our babies aren’t eating, they could have reherniated.  SOOOOO it’s a little different.. oh wait… it’s A LOT different.

There are many reasons are kids may not eat.  Mine doesn’t eat because she is stubborn and knows I’m crazy. No- sometimes her reflux is an issue- and she gags a little while eating, and that will make her stop due to the pain.  Other times, I have NO CLUE why she stops eating when she does.  But when she does spit out that bottle, I burp her, and then try try try again.  If that doesn’t work, then it’s toy time- a very uncomfortable and sometimes painful way to feed her, but it gets the ounces in.

I will take a toy, her octoplush for example, and turn it on, she instantly calms down, stares are her toy, and then I sneak the bottle back in… and she drinks the last two ounces. But- the problem with this is… I have her in one arm, the other arm is being used to feed her.. where does the octoplush go?  K does not simply want the octoplush to just sit there, it has to dance… and NO it doesn’t move on it’s own.  Mom or Dad have to make it dance.. and sometimes I am alone, as is Grandma – who has to do this most times! So we hold the bottle with the same arm she is laying in, and grab the octoplush and dance dance dance away as she eats.  Very painful sometimes.. but it works.

Sometimes when K doesn’t want to eat- yes yes, I know what you are thinking, stop trying to feed her she probably just isn’t hungry- NO that is not it! She is hungry and she will eat! Anyway, sometimes when she won’t eat, I have to stand up, hold her in my arms, and practically do squats and rock back and forth violently- and then she will eat.  That is very painful.. but sometimes works!

Other times, when she won’t eat- yes this happens a lot…  (just these past few days thanks to Grandma) if the toy won’t work, the bouncing doesn’t work…I put her in her high chair and put the rest of the ounces in cereal .. and she’ll eat it that way. (getting more calories- so I’m totally cool with this!)

When she was younger, I used to put her in her vibrating chair- w/o the vibrations as she would puke if I had that on!! And let her get upset… from being left alone in the room, and come back in when she starts crying- with a re-warmed bottle, and she would drink that.  But she had to get upset first.. I know sounds awful… but it’s like she knew if she didn’t drink, I would go away again.. silly I know, but it worked!
So I have learned a few tricks… and yes when they work, it’s a treat!

For me, nothing is more frustrating than when K won’t eat.  Just the other day, K ate 2- 6 oz for each feed, and a whole jar (2nd foods) before I got home. I had text my mother in law to ask how K was, and she told me that, and I teared up.. I was so damn happy.  K has been in kind of a funk lately and I’m starting to think that this funk is really how she eats, and the NON FUNK is when she is in a growing stage… sooo really the FUNK isn’t a FUNK… I’m just crazy!

The jars- she just wouldn’t do in the beginning.. I had no tricks for that.. I warmed it, cooled it… nothing.  So I just kept trying and trying.. and now she will eat. Phew.. bc that was REALLY frustrating!

So if you have any tricks to feed your baby please share… as we all like to learn new things in how to get our kids to eat.