Acceptance.

Acceptance can be hard.


I had a sobering moment a few days ago. I have had a hard time trying to write about it, and it is still hard. But, I'm hoping by putting it all into words, I can help myself achieve the level of acceptance that I need right now.


Nora has been teething. I feel like her emotions and mini-tantrums have rubbed off on me, and it was very hard the other day. My sobering moment had Nora in her pack 'n' play, screaming (for what seemed like no reason to me, but as I have learned in the last few days, teething sucks just as much for her as it does for me), while I stood in the bathroom having a staring contest with myself. What I saw was hard for me to actually see, because it was a ton of raw, ugly emotion that I didn't want to acknowledge. 


Ugly. Uncaring. Angry. Pissed off. Unpretty. Worn thin. Fat. Whale. Disfigured. Frumpy. Alone. Frustrated. Sad. Depressed. Incompetent. Bad influence.


The list in my head was much larger than this a few days ago. Those are the ones that have resonated. The list doesn't describe a single good thing about myself. And that was a HUGE wake up call, especially when Nora quit her fit, and sat there in silence staring at me with her big, blue eyes. It was like she was asking me what was wrong.


My daughter will no doubt face her own demons about her body someday; she will be different, even if it is only a slight difference. Younger children do not generally have censors. Teenagers are flat out cruel. If I cannot look at myself in the mirror and find a single good thing about myself on a really bad day, how am I going to teach my daughter as she grows up to love herself, accept herself? That a different belly button does not define who she is? That her brain and heart are more defining features in life than a body shape or physical characteristic?


Keep in mind, this was a very difficult day, after a slew of multiple sucktastic days. There is more than enough going on around me that influences how I feel than I care to admit. And Nora teething isn't the sole excuse for a slight breakdown- it has been only a sprinkle on the frosted cupcake of life (and one of the few things I feel like sharing right now). 


So here is one of my first steps to accepting myself and the things happening around me. My list of things that I can say I feel are good attributes.


Headstrong. Fierce when necessary. Clever. Creative. Supportive. Mom.


Right now, my list is small. I'm working on it. It'll take me time, but I'll get to a good place that I will feel confident in setting a good example for my own child. 

I do not get paid for the work I do, and I am okay with that. (Why, yes, this is going to be a little bit of a rant...)


So, let's talk about that for a minute, and why I can so boldly make the above statement.


One. I am a full time mother, and I chose it. Mothering a child is a full time job, regardless if you have a paying job. As mothers we become many things, which we usually have no experience with until that baby comes home from the hospital. However, I do not believe mothers should be paid to be mothers. A mother's pay is snuggles and sloppy kisses, and unconditional love. And that is sufficient. 


Two. I am a volunteer. Note, I say volunteer. I am the Parent Support Coordinator for Avery's Angels® Gastroschisis Foundation. I help parents who are just learning that their children will be born with gastroschisis find support with parents who have already been through their journey, or are in a comfortable place to be able to provide support to another family while addressing their own families needs. The support is not limited to expectant parents, however; support is available to anyone affected by gastroschisis whether they are parents, grandparents, or survivors themselves.


This position I have volunteered for can be tedious and time consuming. I am always on my phone, texting and emailing with people for the organization, keeping tabs on the things I am responsible for. I agreed to do this without pay, even if the skills and time I am utilizing are worthy of a paid position. 


I choose to do this because I believe in it. My daughter's life has been shaped by gastroschisis, and she has been very lucky. I want other families to hold on strong, and sometimes they need help finding their strength to do so. I have committed to this, it is my job- regardless if I am paid. I report to those who have higher authority, I have time frames to follow, and I have a level of professionalism that I must keep.


Would you go to a job interview, land a job, and then flake on it? If you just answered that question with a 'yes', you may leave now. 


With any job, you must hold a level of professionalism. Paid or unpaid. Following a dress code, rules, regulations, and keeping a professional face for the public eye. I can get away with wearing my pajamas, messy hair, and smelling of B.O. while I am checking my emails because you cannot see me. My professionalism is shown in my words. Now, if I am ever put in the situation of needing to speak to someone face to face, I promise I am clean smelling and dressed for the public eye ;). 


Sorry, this post is sort of a rant today. I did tell you that I would be writing about some things not necessarily about Nora. Sometimes a momma needs to rant and vent, ya know?

Happy Baby

One of the best moments of your life is seeing your child smile. And with my child, there is never a day that I don't have an awesome day. Trust me, my buttons are pushed over the limit some days, but the anger and frustration I may feel is easily melted away when this little booger smiles at me.


Her smile is contagious, too. You better believe it. Yesterday, as I was loading her into her stroller so we could go pick up my glasses (I don't think they make me smarter, but they make me feel smarter... does that count for something?), an older gentleman and what I will guess was his grandson stalked us through the parking lot. The man didn't speak a lick of English, but the language barrier seemed to disappear. It was obvious to me- the guy loves kids. Making faces and cooing doesn't require a specific language. This wasn't the first time someone of a different language admired this little girl.


Here in the last few days, Nora has surprised us, too. I've not seen such a proud face until she pulled herself up for the first time. So, not only is my baby growing too fast, she is getting into things much more easily. I took the opportunity while James was home for a long weekend to start baby proofing a little more. I know that experts will tell you to baby proof well before crawling begins, but I want to see what Nora's interests are. I've taken care of the obvious- cat box, plug ins, cabinets and drawers. No little things at her level that will hurt her. I believe in letting a child be curious, and I encourage it! She should be allowed to learn about the world around her. And trust me, she's learning! Fast! 


Where'd my itty bitty baby go? I sort of miss her... but this new model is quite fun too!

Gimme some sugar...

One of the things that has been on my mind since I first learned Nora would be born with Gastroschisis:

Will she be able to eat a normal diet?

My definition of a normal diet for her is simply eating what I eat, without taking special dietary restrictions into consideration. I've put much thought into this, and especially now that Nora is showing signs of having an oral aversion. I've come to a personal conclusion as a mother, and trust me- this decision of mine is educated!

We've had some feeding troubles with Nora lately. We attempted to start solids at about 5 1/2 months, only trying a couple spoonfuls of purees a day. I tried to figure out if it was flavors or textures making her vomit. Turns out, texture is her trigger. We've cycled days of attempted feedings and just bottle feedings to make sure she doesn't develop a negative connotation to feedings, but this girl seems to have a super strong gag reflex!

The county OT/PT (a therapist) came out for a visit on Monday, and we came up with a game plan to see if we can't bite this aversion in the butt before it gets worse. Essentially, I just gotta let her gag herself (not choke, ONLY enough to trigger her gag reflex) once in awhile. So, that means more playing with spoons with a hint of puree on them. What gets me is the fact she can eat the Gerber Puffs (they melt fast) without gagging issues. No, these puffs are not necessarily a source of nutrition, but that is alright. We are not trying to get her off her bottle yet- it is just practice.

Another way to help her with her food aversion is to simply expose her to foods. Celery sticks and other things that are solid and good to chew on without breaking off pieces will help expose her to flavor, which will help reduce any picky eating in the future. Because if you know me, you know my husband is HORRIBLE about being a picky eater. I do not need another picky eater to cater to!

So, knowing that it really is okay to let my child gnaw on whatever she feels like exploring (this morning's flavor was banana chips, I promise I supervised!), I've come to the conclusion that until I say so, she only get whole, nutritious foods. This means no excessive sugar (a tiny sprinkle to give flavor to sweet potatoes or squash, that's fine), no overly processed foods, and whole grains. Organic when able.

And I'll explain my theory on organic right now.  If you feel inclined, read about concentrated cases of gastroschisis happening in the UK here. 


Let me be clear. The cause of gastroschisis is still unknown. But that doesn't mean that I cannot be suspicious, especially when I fell out of the "normal" scenario (teenage pregnancy, drug/alcohol abuse, etc.).  An environmental influence mixed with possible genetic factors makes sense. So, until I know for sure what caused my child to be born this way, I will be a little extra cautious.

Since I'm Momma, what I say goes ;)

GI's, Sleeping Ninjas, Birthday Cake!

This week has been... Eventful.

This past Monday, Nora had her first visit to Doernbecher Children's Hospital to take advantage of their Pediatric Gastroenterology department. Good news: as of now, we have no good reason to go back! The overall visit went well, we enjoyed the scenery, and came home.

Oh yeah, we got to see the Oscar Meyer WEENIE MOBILE! It was parked right outside of the hospital entrance as we left. As cheesy and childish as it seems, Daddy and I got a kick out of it. We've seen it drive through our town, but have never seen it parked. It's the small things in life, right?

I suppose that this week really hasn't been that eventful. It may just have felt super busy because of my lack of sleep. My apologies if there are incoherent sentences and ramblings that don't make sense. I do not function well with lack of sleep, haha...

Nora has decided to become a sleep-talking ninja. She hasn't felt too great; she's being treated for an ear infection (again) and also started a new medication for her GERD. It is hard to tell what exactly hasn't been feeling good to her at night, but I can tell you that Momma and Daddy are a little sleep deprived. Her eyes will be closed, she'll be either crying or chatting, and doing some crazy moves with those arms and legs. We do not generally co-sleep, but when we are this desperate for a little bit of low quality rest (hey, something is better than nothing!) it seems to be the only solution we can all agree on. Daddy and I get our low quality rest, and Nora can continue being a sleep-talking ninja. Come morning, our little night-ninja is happy as can be, and we are grumbling about magical fantasies of someone bringing us our morning coffee.

Our current goal is to get Nora back to sleeping through the night, in her own bed, without fighting us. To do this, we are changing what time of day she gets her new medicine (Prevacid has a less-common side effect of insomnia), and having patience. Wish us all luck! We could all use a good night's rest.

The last 2 days, however, have been pretty busy... I've been getting my baking on, making a tradition for my niece (She may not be my niece by blood, but blood does not make family). I've made her birthday cakes for each of her birthdays. Last year still counts, even though Vella's Momma and I cracked at a failed mission... Safeway saved our butts last year! Note to self: NO cake pops for Nora's birthdays. Unless someone else makes them :)

This year's theme was Minnie Mouse. Vella had her own little cake, and the rest of the guests got cupcakes. Cupcakes ended up pretty darn awesome... Vella's cake, however, was a different story! Short version: A remake was in order, and that remake was even more awesome than I intended. I am not very skilled at cake decorating, but I can wing it! When I have pictures to use at my disposal, I will share :)

The weekend officially starts today, as Daddy's work schedule changed to Tues-Sat. So off I go, to start a weekend of being a couch potato!

Peace out!
Momma

Happy Mother's Day

On May 9th, 2011, I received a life changing phone call. It was the Monday after Mother's Day last year.

Well, today is Mother's Day, and I am reminded of that day last year. Then, I thought a gastroschisis diagnosis was devastating. A year later with a beautiful daughter to call my own, I still feel overwhelmed- but I do not feel devastated. I feel relief instead of devastation simply because my daughter is here.

Mother's of gastroschisis children, in my opinion, are some of the strongest you'll ever meet. I am not just talking about myself- trust me, I do feel the need to toot my horn at the things I've endured as a mother- but I am certainly not the only one who fits into the "strong mother" category.


We are mothers, who even before giving birth, fight claws out to get answers and appropriate prenatal care.

We are mothers, that once our children are born, argue and fight with medical staff as necessary (I am pretty sure my pediatrician has caller ID, and refuses to answer some days... Yet, I do not give up), and never take the easy road simply because it is easy.

We are mothers, who not all have medical training and experience, but can answer questions more thoroughly than most medical professionals simply because we are always on the quest for those answers ourselves.







We are mothers, who become home-care nurses for our little ones- changing surgical dressings, placing NG-tubes after our children have ripped the old ones out, administering medications that even adults would gag and throw up from, and many, many other things that other moms may not be able to handle so well.



We are mothers, who unfortunately do not always get to bring our children home. Those of us who did bring our children home raise the mothers of Angels up on their shoulders, because they are even stronger than the rest of us who's children survived and deserve to be celebrated.

As mothers of gastroschisis children, we do things that the ordinary mother does not do. We wait (im)patiently to hold our children for weeks. We wait even longer to nurse them- if it is even possible. We wait to be able to put their first outfit on, and even then it is hard to do. We wait for their little bodies to heal so that we can let them be free of monitors and tubes. We wait.

Happy Mother's Day to all of the mommies out there- especially the mothers of gastroschisis children.

~Tiffany

Takeoff!

I do not care who you are- having a baby is tiring. Especially when your baby decides to practice her new moves at the butt-crack of dawn, when normally she would be sleeping. I suppose Nora's practice has paid off...

WE HAD TAKEOFF.

Awesome Jenni was able to take a short video of Nora as she skuttled a few paces forward, and if we can figure out the technical glitch that just happened to rear its ugly head, you will all witness this amazing accomplishment of Nora's. And trust me, this is amazing. Her abdominal muscles are much more weak than the average baby's, and she is at risk for being developmentally behind.. physically, that is. Do not underestimate her mind! She's sharp as a tack!



But on to other news.

I warned you, there would be some things that may fall into the "other" category. This is one of those times.

If you are a returning reader, take notice to my much prettier blog. Again, thank you Awesome Jenni! (You know, you could show her how awesome she is by visiting her photography page.. *wink wink, nudge nudge* The link is to your left, you know you want to do it...)

I have added some features. You will find tabs at the top. A tab to bring you to my front page. A tab for you to get to know our little family. A tab that will let you watch Nora grow, and show off her accomplishments (this tab is still under construction, so check back from time to time! Leave me comments to get my butt in gear on finishing it!) You can also find a tab that gives information about gastroschisis straight from the CDC. Last but not least, a tab with information on a non-profit organization that has been a rock for me: Avery's Angels® Gastroschisis Foundation. I strongly urge you to check out their website. Because they offered me valuable support during my pregnancy, I decided to give back. I am a volunteer for them now, and while it can be hard seeing so many other families experience so many paths of gastroschisis, it feels good to try and helps others as I have been helped. A simple "I hear you, I see you, you are not alone" can be so invaluable... It is hard to describe it. You have to have been in a situation in your life where those words have been what kept you steady for one more day.

Anyhow, as my blog transforms into what I have envisioned it to be, you will find more things to look at. This is a work in progress. Much like my life is a work in progress, haha...

Stay gold, Ponyboy... Stay gold.
(Name that reference, and I'll give you a virtual cookie. But you have to comment in order to receive... and maybe I should suggest that you follow my blog? Oh? Would that work for you? Because it sure works for me.)

"Sorry, we're being held up by a 7 month old baby..."

Oh? What is Nora doing in this lovely piece of fashion called a hospital gown?

"Lions, tigers and bears, oh my!" <- printed all over the gown.

She's showing off that she is a happy girl, even when she has to do a Barium Swallow! P.S., a Barium Swallow is also referred to as an Upper GI Study. You swallow thick, chalking stuff while having an x-ray. The purpose is to make sure that the upper GI track is in good, working order.

Our day started much earlier than normal. I had to wake Nora up and feed her, change her, and snuggle her back to sleep so that way only 4 hours would pass (as required for the appointment) before the Barium Swallow instead of going a full 12 hours without eating. We left with barely enough time to make it to the Interstate Kaiser campus and be on time for our 8am appointment. For the record, Friday morning traffic is NOT my cup of tea. Nora, however, didn't mind. She played with Moose (one of her favorite toys to have in the car).

I suppose we could have taken a little more time to get to where we needed to be, because they called us back nearly an hour late. Any longer, and Nora would have turned into a little monster. Trust me, it is absolutely possible for this to happen. Do not let her cute, happy smile fool you. She is her mother's daughter, after all...

Once we were taken back, Nora got to sport her lovely hospital gown, drink some chalky goodness (I think she liked it better than her formula, honestly...), have pictures taken of her belly. Drink water, more belly pictures. Tons of repositioning. Minimal crying. Two hours after our arrival, we were done! Nora got to enjoy a real bottle, and we were able to come home.

We will find out soon what the conclusions are of the Barium Swallow. Until then, guess what I get to do?? Change diapers filled with white poop! YEAH!

Oh, and if you actually read the title- yes. The person doing Nora's x-rays decided to BLAME NORA for their schedule being behind, regardless if they were behind before we got there. Even the elderly couple we were sitting next to had something to say about that!

Nora is trying to become a photographer... She still needs some practice :)

Come back soon for more Momma Loves Nora!

-Tiffany

Gastro- what? Can you repeat that?

Have you ever heard of gastroschisis? Ya, me neither. Well, not until I got a phone call (almost a year ago, in fact) from the genetic counseling department at our hospital. I was 16 weeks pregnant with my first and only child.

It is a phone call no expectant mother wants to receive. Your heart quickens, you feel faint, and your mind goes in circles thinking about what you will do if you hear something come out of that person's mouth that is anything but "everything is fine, baby is great." This all happens before the person calling finishes identifying themselves, and where they are calling from. 

Let's just say I threatened to show up at the doctor's office and NOT leave until they told me everything. They got me in right away, told me what I needed to know, and sent me on my way. I still barely knew what gastroschisis was, and what baggage it is capable of carrying with it. So, for those of you who are as in the dark as I was a year ago, this is for you:

From Dictionary.com-

"gastroschisis  gas·tros·chi·sis (gā-strŏs'kĭ-sĭs) n. A congenital fissure in the abdominal wall usually accompanied by protrusion of the viscera." 

My simpleton definition-

Gastroschisis, pronounced gas-tro-ski-sis. An abdominal wall birth defect where there is a hole to the side (most often to the right, usually unheard of to the left) of the umbilical cord. Through this hole a baby's intestines and sometimes other organs stick out. 

I cried. I yelled. I screamed. I felt some extreme emotion. But I was (barely) held together with this simple knowledge- I was going to have a daughter. And I would name her Nora. And I would love her, and squeeze her, and call her George. Nora. Nora-Bug. Pumpkin. Sweet Pea. Sugar. BeeBee. Bug. Bug-a-boo. I think you get the point.

After reeling in some of those emotions, I decided that I was going to enjoy the remainder of my pregnancy as much as possible. After a very miserable first trimester, I felt I owed it to myself. I had a baby shower, made my daughter's bedding for her crib, did maternity photos with my husband (and yes, I'll share whether or not you want me to, hehe). I came to accept my daughter's fate, even the idea that I may lose my daughter. It is important that you note, acceptance doesn't always equal happiness.

The day I was at 36 weeks gestation, my little girl wasn't beating on me first thing in the morning like usual. I did fetal kick counts, called Labor & Delivery, did fetal kick counts again after trying to give Nora a bit of a sugar buzz. She moved, but barely. It was off to the hospital for me, where I would stay for two days being monitored, and finally end up delivering on the third day.

Nora was born September 26, 2011. She was delivered via c section, and had what we like to refer to as a "rough start"- she aspirated amniotic fluid and quit breathing, and her heart was weak. I was able to see her (notice, "see", not "hold") after I was wheeled out of the OR. A nurse was breathing for her, but she was stable. 

Here is a quick(ish) rundown of Nora's NICU journey- I don't want to confuse you or bore you too badly. At birth, after being stabilized, Nora's intestines were placed in a silo (essentially a clear, sterile bag suspended above her abdomen) so that the doctors could watch the health of them and make sure moisture/heat did not leave her body rapidly. At two days old, Nora's surgeon took her to the OR to place her intestine into her abdomen. They were unable to get a good IV or PICC line in her body, so they had to surgically place a Broviak catheter into her chest (often used for cancer patients receiving chemo). They were then able to do surgery on her abdomen, but because her abdomen was so tiny, her intestine didn't all fit. The solution: Don't sew her skin together. Place a surgical graft over the spot where she doesn't have enough skin. Apply Wound Vac therapy (promotes new cell growth with gentle, continuous suction), and let her skin grow over the patch (this therapy was required 24/7- we even came home with a portable unit).

From there, we had to let her body get strong enough to remove the ventilator. It was a tight fit in there! After the ventilator came off, we were able to hold her. She received TPN (total parental nutrition) for roughly the first two weeks of her life, because she couldn't nurse or take a bottle. A tube had to be placed in her stomach to suck out access bile that her stomach didn't know how to digest. Once her stomach and intestine "woke up" and started digesting the bile it was producing, we were able to slowly introduce her to breast milk. We started with 5mL. Then worked up to 10mL. Then gradually up to 20mL. She plateaued, and wouldn't eat more. The process of increasing quantity continued, but only because the rest of the food she wouldn't eat was given to her through a feeding tube. Her goal was 60mL, or 2 ounces every 3 hours. As feedings increased, TPN decreased. Finally, something clicked. She started eating full feeds by herself- no feeding tube required. After 29 days in the NICU, Nora proved she could eat, poo, pee, and grow. 

Nora coming home!

Fast forward to her being 3 months old- she was finally free of the Wound Vac therapy. I still had to keep a bandage on her belly for a few extra weeks, but it was better than carrying around that Wound Vac!

Nora at one month old

Fast forward again to now- Nora is a beautiful, strong, goofy 7 month old. She has a special belly button. She is smaller than average, but she is growing well enough. She does have GERD, and throws up frequently. She is on medication for it, but it doesn't do very much for her. We are going to take her to see a specialist this month. The cool thing about Nora is that it doesn't matter how horrible she feels; she will smile and flirt at anyone who looks her direction. Even that baby in the mirror who looks an awful lot like her.

If you have not picked up on it already, this blog is about my life with my daughter. Many posts will be about the things she experiences because of the condition she was born with. Some posts will be about babies like her. The rest will be about... well, anything I feel like telling you about. 

So, for now, you've learned some things about Nora. You'll learn more, if you keep reading future posts of course! And I might tell you something about myself- but that is if you are lucky ;)

So for now, I'll say my goodbyes. It is time for me to be off and be a momma, because Momma Loves Nora!

-Tiffany (aka Momma!)