gastroschisis awareness

Hello, Jess here from sick-land. Yes, my boys are sick again- surprise, surprise, right? But I decided to hop on for a minute to talk about a nonprofit organization that is near and dear to my heart.

Avery's Angels is a nonprofit organization founded by a mother who lost her son, Avery, to gastroschisis complications when he was in the NICU. I found a lot of support and comfort through their founders and facebook group when I was pregnant with Elliot. Please, if you have time, take a moment to visit and "like" their facebook page.

Did you know the cause of gastroschisis is still unknown, even though it is on the rise? Current statistics show that it affects 1 in every 2,229 babies. It is far more common than many other birth defects, yet nobody knows why it happens. The people at Avery's Angels are trying to change this. 

The amazing people at Avery's Angels are working on an awareness video with before and after pictures of gastro babies to use in their PR campaign. I put together this little collage for them :)

Everytime I look at pictures from Elliot's time in the NICU, I get emotional. It's amazing how far he has come, and what a happy, and (mostly) healthy little boy he is now! God is great! 

Someday, when we get our finances under control, we would love to donate to Avery's Angels, and many other nonprofits. We also love the Ronald McDonald house- that's where we stayed the entire time Elliot was in the NICU. It was great to be so close to the hospital and they provided a lot of meals and activities, too... as well as a shuttle to and from the hospital that ran from early morning until late night. St. Jude's is another nonprofit I really love.

Do you (or would you) donate to any nonprofit organizations? Which ones?

one year ago... surgery day.

My favorite pre-surgery picture of Elliot, taken the day before his surgery.

Exactly one year ago, on December 23rd, 2010, Elliot had his primary closure surgery to put the rest of his intestines back inside his belly, reconstruct his abdominal muscles, and close up his belly.

I seriously have no words, guys. So, instead, here is a quote from the original post.

"Elliot went back for surgery at about 12:30pm, and I cried like a baby as I watched them wheel him away. It is so hard to say goodbye to your brand new, five pound baby boy before he leaves for surgery."


Wearing a Christmas hat, the day before his surgery.


Elliot swaddled for the first time ever, getting ready to go into his transport isolette.


Getting settled for transport.


Minutes before we said goodbye to him and left him in the hands of the anesthesiologist. I'm pretty sure I couldn't even see my camera screen, because I was crying so hard.

I look at my healthy, happy, baby boy today, at how far he's come... and I just can't believe it. I really can't.
I cannot believe it's been a whole year!

One Year Ago...

Exactly one year ago, at 10:08 am, Elliot Reid Gougeon entered this world, weighing 6 lbs 3 oz and 19.3" long, and my life changed forever. I wasn't expecting to be able to hold him, but they suddenly plopped him on my chest. In the minute that he lay there, I couldn't do anything but stare at him and cry. I fell in love. I saw past his bright red skin and the fact that his intestines were spilling out all over my belly, to his dark hair, his cute button nose, his long eyelashes, his tiny tiny fingers and toes. He was perfect; he was mine. I knew that from this moment on, my life would never be the same.


The moment I wrote about above- when they unexpectedly put him on my chest, seconds after he was born.


Just a few feet away from me, being prepped by the NICU team. He was being placed in a sterile bag so they could take him down and examine him. I couldn't see him at all, because he was SURROUNDED by doctors. Aaron was straining his neck trying to see what they were doing, and my parents held cameras up above and just fired away- not even sure what they were taking pictures of.


All settled into his isolette.


A couple hours after he was born, they FINALLY brought me down to the NICU to see him. They probably got sick of me constantly asking, "Can I go see him yet?" I wasn't allowed to stay long, and the nurse kept asking me if I was ready to go, and I kept saying, "no, not yet. Not yet." When they finally wheeled me back up to my room, I bawled my eyes out. I could not stop crying. All I wanted to do was stay with him. Leaving your newborn son in the hands of strangers is something that takes awhile to get used to. In fact, I cried every time we left the NICU for the next several weeks.


The first time Mommy and Daddy touched baby Elliot.


Pure perfection. Who would have guessed that olive skinned, dark haired baby would turn into a fair blondie?!


My sweet, sweet angel. ♥

Happy Birthday, Elliot!
Mommy and Daddy love you so, so much. ♥

One Year Ago

Exactly one year ago, I peed on a stick and my life changed forever. Who knew two pink lines could make a person so incredibly happy? This was back when life was easy and... normal. Aaron and I were living in Arizona. We knew that we were being reassigned soon, and we assumed that we would be moving somewhere down south, where we would be able to raise our first child together. We also simply assumed that the little developing embryo inside of my uterus was perfectly healthy.
We couldn't have been more wrong. Little did we know, we were both about to be thrown into a crazy whirlwind of a pregnancy- and separated for most of it. The baby inside my belly was a far cry from healthy, but he would steal our hearts anyways, the moment we saw his little white silhouette on our first ultrasound.
Had I known ahead of time that I would spend the majority of my pregnancy on bedrest, worrying incessantly, would I do it again? Would I have felt differently knowing that I would have to spend six weeks in hell the NICU, barely able to care for or comfort my own child? Would I have been as happy if I knew that I was going to have to raise a newborn with multiple health problems all by myself, while my husband was hundreds of miles away? Was it worth it?
Absolutely. Every tear shed along this journey has been worth it. I am a better, stronger woman now than I was one year ago. Look at what came of it all- a happy baby boy. What could be better? Elliot is my entire world. He lights up my life. All the tough times over the last twelve months are instantly erased when I see his smile. When he reaches for my hand. When he looks up at me with those big eyes and I just know how much he loves and depends on me.
I'd do it again. I'd do it a hundred times.
I love you, Elliot Reid, and you are absolutely perfect in every way.




Help me bring gastroschisis, and other birth defects, into the spotlight. Please vote!

The Need to Compare

Maybe I'm just ridiculously paranoid, but everywhere I look, babies that are Elliot's age and YOUNGER are doing bigger and better things than he is. I know, I know, we've all heard it a hundred times- "don't worry, all babies do things at their own individual pace."
If I were the mother of a "regular" baby, perhaps I would heed that advice and relax a little. But the fact is, I'm not. Sure, Elliot may LOOK healthy and whole nowadays, but that doesn't change the fact that he had a very startling, unnatural beginning to life. He inspired us all during those first hard weeks with his unbelievable strength and resilience, but no matter how quickly he recovered, he is still going to be faced with some challenges as a result of what happened to him both in and out of the womb.
I've been told that the chances of Elliot having some developmental delays is about 65%. Now that's just not fair. Hasn't he already been through ENOUGH? So here I am, silently taking note of the things that he should probably already be doing by now {eating more, sleeping longer, rolling over, sitting unassisted, grabbing/holding toys, holding his own bottle, discovering his feet, etc} and trying to encourage him. This is an interesting internal battle for me, though. Honestly, I'm in no great hurry for him to do ANY of these things. I LOVE that he is still so dependent on me. He will only be this little once, so why rush things? Well, it seems that others are always questioning me about it. You should see the looks I get from complete strangers as they try to hide their shock when they find out that he is actually much older than he looks, or that he is or isn't doing a certain thing. It's frustrating.
He will be evaluated by a specialist in two months to determine whether he is reaching his milestones or falling behind. Until then, I should probably just relax and stop worrying. I'm sure he'll catch up eventually, and even if he didn't, I would love him anyway. But I'm a worrier. It's what I do!
Thanks for listening to me ramble. I just needed to get this out.

Elliot's doctor appointment

Thumbs up! All ready to go!


... or not.





We got up bright and early today to go to Elliot's doctor appointment. Elliot woke up even more than the normal 7-8 times last night {he was up every half hour at one point}, so we were both pretty tired!
First of all, Elliot now weighs 10 pounds! Wow!
He is now taking Zantac twice a day for his reflux, and we are switching his formula from Enfamil Gentlease to Gerber Good Start Gentle Plus. The Gerber formula has as much fiber as breastmilk {the Enfamil does not}, and less lactose and corn syrup so most formerly-breastfed babies do better on it. I sure hope so! Next week, Elliot will have a swallow study at the hospital. I'm definitely not looking forward to taking him back to the hospital, but I'm glad we'll be able to see what's really going on in there.

Now this is just getting ridiculous...

Feeding Elliot has always been a challenge. I suppose I should be happy that he CAN eat now, but seriously? This is getting a little ridiculous. We cannot get through one bottle without him gagging, choking, coughing, spitting up, and having at least two meltdowns. Mind you- this is for one measly 2 ounce bottle! And THEN, once he finally finishes the bottle (or lately... once he has eaten an ounce and refuses more) if I DARE try to have him sit or lay flat after he eats, he screams as if I were trying to kill him. The only positions he can tolerate after eating are either laying on his belly, but he will spit up a lot more, or being dangled by his armpits. How in the WORLD that is comfortable, I have no idea. But he seems to love it.
Since his belly is still incapable of holding any more than two ounces at a time, this is a battle that we fight at least twelve times a day. I counted, and yesterday I made him a grand total of FIFTEEN bottles. FIFTEEN! This makes for a very frustrated mama and baby.
I used to think this was mostly a belly problem, but ever since we made the switch to formula, Elliot has been a whole different baby. He's had SO MUCH less gas and is pooping regularly, once a day! That is no small feat for my little constipation king. During the small windows of time that he is not either starving, eating, or recovering from eating- he is SO HAPPY. No screaming. No straining and grunting. All smiley and babbly and utterly adorable. I wish I could see a whole lot more of that side of him.
I'm thinking what some of our NICU nurses suspected- that he had reflux- is true. The symptoms were easily masked and/or overlapped by all the GI tract symptoms and issues, but now that those seem to have cleared up, it's quite obvious. So, we have a doctor's appointment tomorrow. Let's hope we come home with some sort of magical remedy that will make this all much better!

Day forty-one: we're still here

We're still here.
Although Elliot HAS proven he can {occaisonally} take all of his bottle, he still needs to be tube-fed a few times a day at this point. Technically, he needs to be able to take full feeds on his own for 48 straight hours before he can come home. His doctors are still debating whether to wait until he can do this, or to send him home with his feeding tube.
Honestly, I would feel 100x better if he came home with the tube, simply because I know my son and he is STUBBORN. What happens if I take him home and he simply refuses to eat? He's done it before and it would be nice to have the feeding tube as a last resort. Otherwise, he could very well end up back in the hospital again... and that is the LAST thing I want to happen!
Aaron has to go back to Korea on Saturday. In the meantime, Elliot is still in the hospital, but we're hoping that he migggghhhtttt be able to come home before then.

Here he is, eating his fingers :)


And staring at the toys on his bouncy seat, which, by the way, is the one thing we could NOT live without. Those vibrations make his tummy feel so much better!


#19! You guys are AMAZING!

Going home {with tubes} ?

Elliot is not a fan of tubes. He is always tugging on them and has managed to pull both his repogle and his NG tube (both of which go all the way down into his stomach) out numerous times.
Proof:





WELL, like it or not, Elliot, you're coming home soon... WITH your feeding tube. We talked to the occupational therapist today and it sounds like we will be going home sometime soon {this week}. The only thing keeping Elliot in the hospital at this point is working on feedings, and our therapist said there's no reason he can't work on that at home. At this point, it could be 4+ weeks before he'll be able to eat all of his feedings. Why spend that time in the NICU?
We already know how to gavage him, but I'll be learning how to insert the tube and check it's positioning, because it needs to be changed once a week {and because Elliot also loves to pull it out!}
I hope we get to go home in a couple days!

.... home?

We're having a VERY busy weekend with lots of visitors, but, I just had to jump on to say this:
Elliot might get to come home on Monday!
He is now IV free and the neonatologist said that if he does well with feeding and pooping this weekend, he can probably come home on Monday!
You have no idea how excited I am!

Day thirty-six- my baby is FIVE WEEKS old!

Elliot is losing weight.
He's down to 8 lbs now, when not too long ago he weighed 8 lbs 5 oz. We'd appreciate prayers for some WEIGHT GAIN, please!
Other than that, we had a good day today. He was wide awake for awhile, cuddling and relaxing with us. Elliot has changed so much in the last five weeks {did I mention he's FIVE WEEKS OLD today?!?}. The nurses are always commenting on how alert he is. Now, he can focus on our faces or nearby objects and loves looking around. His favorite toys are his floor/crib mirror and his aquarium soother. When he's not trying to eat, he spends a good chunk of his "awake time" staring out the window and if something gets in his way, he'll move around to get a better look. He's our little Curious George :)
He's also getting the hang of breastfeeding- or at least, latching on. He only manages to get about 2/3 of an ounce at a time. I'm not surprised, because he is QUITE the messy eater. We both end up taking milk baths every time he eats! Oh well, I'm sure he'll figure it out soon.








Look dad, I can make funny faces, too!


Elliot knows where the good stuff is ;)

Day thirty-five.

Elliot's Grandpa Steve {Aaron's dad} visited us today. Unfortunately for him, he showed up RIGHT at feeding time- and I wasn't about to miss an opportunity to try to nurse Elliot! So he checked out the new hospital while I tried struggled to breastfeed. Elliot was EXTREMELY angry and wanted nothing to do with the boob. Aaron kept reminding me about what I said yesterday, that he could have good days AND bad days, but, MAN! I was frustrated! It's hard not to feel like your son is rejecting you when he makes it so clear that he DOES NOT want to nurse. He hardly even took his bottle either, though... so I think he was just in a bad mood.
At his 3 o'clock feeding, after a few tries, he latched on and nursed quietly for about ten minutes. He then took about 40 cc's from the bottle. He seemed really full, and since we didn't know how much he got from me, we weren't sure how much to send through his NG tube. Tomorrow, we'll be using the breastfeeding scale before and after feeding, just in case he latches on- it would be nice to know if he's actually GETTING anything or not.
I think Elliot enjoyed his time with Grandpa. We also did more trust and relaxation exercises with the occupational therapist today. I swear, that woman is a MIRACLE worker! If it weren't for her, we never would've been able to get him to calm down enough to eat. Everyone in the hospital calls her the "baby whisperer."
Elliot is doing pretty well these days. The main things we're working on are:
1. Bottle feeding- he now gets 58 cc's per feeding and takes about 30-40 on his own. He can't go home until he can take full bottles for two days straight.
2. Weight Gain- he was doing well with this but has been losing a little lately. He now weighs 8 lbs 3 oz.
3. Breastfeeding- slowly making progress. Thank GOD for nipple shields!
4. Muscle toning- normal full term babies like to keep their hands/arms up by their face. Elliot, like many NICU babies, lets his arms hang limp at his sides. We're working on keeping his shoulders forward and arms up.
5. Trust- Since Elliot spent the first three weeks of his life flat on his back, he is scared to be in other positions.


Grandpa and Elliot.


Sleepy sleepy.


BIGGG eyes. Not mine, his. I'm looking at the flash rather than the lens. Can you tell I'm used to being BEHIND the camera? :)

We're movin' on up the first page!

Breastfeeding = the hardest thing I've ever {tried} to do.

I don't know if anyone's ever told you this, but breastfeeding is hard. If that sounded sarcastic, it was. Because the minute you say you want to breastfeed, every other mother in the world has something to say about it and of course, they always end with: "... but it's REALLY hard."
They weren't kidding! Sure, I knew it would be tough. I knew it would hurt. I knew that so many other mothers have tried and failed at breastfeeding. But none of that mattered to me, I just assumed I could do it. After all, I was am determined. I figured, as long as I didn't give up, I could do it.
WELL. I'm sure breastfeeding a regular, healthy, full-term newborn is hard enough. But I can't even put into words how hard it is to convince a baby with a sore, swollen belly, a recessed chin, acid reflux, and an almost-permanently arched back to hold still {and stop using his mom's boobs as a personal punching bag} long enough to latch on. Add the fact that he didn't even EAT for the first three weeks of his life, then went straight to the bottle, and you have a recipe for disaster.
The last few days were horrible, to say the least. Yesterday, lactation consultants, occupational therapists, and nurses were all trying to help Elliot latch on. We tried different positions, nipple shields, syringes, soothing, wrangling... the works. He WOULD. NOT. LATCH. I was ready to give up.
Sharon, our lactation consultant, even admitted that some babies just can't do it... and that Elliot could be one of those babies. "Exclusive pumping is still an option," she pointed out. Except for the fact that I'm not even making enough milk right now to feed him. I left the hospital yesterday thinking that my dreams were dashed and I was going to be feeding my son formula. I felt like a failure.
Today, when we got to the NICU, Elliot was starving. You could hear him screaming from down the hall. While his bottle was warming, we gave him a bath, put a fresh diaper and onesie on him, swaddled him up, did a few relaxation exercises with him that I learned yesterday from the occupational therapist, and... he was CALM. So my husband looked at me, with the bottle in his hand, and said, "Do you want to try to breastfeed him?" I looked down at Elliot skeptically and shrugged. Sure, why not. It couldn't hurt, right? I was preparing myself for the kicking, screaming banshee that my son turns into whenever we even ATTEMPT to get him close to the boob.
Magically, after only one or two tries, and the help of a nipple shield, he LATCHED RIGHT ON! He actually nursed happily for twenty-five minutes before falling asleep. You should've seen me- I was beaming ear-to-ear and kept saying to my husband, "Look at him! LOOK! He's sucking! And swallowing! And BREATHING!" I just couldn't believe it.
The feeding went so well, in fact, that we decided to give it at try again at his next feeding. And wouldn't you know it?! He latched right on and nursed until he fell asleep again! Sure, he might have been drooling a lot and I might have had milk soaking my bra and dripping down my belly, and my back might've felt like it was going to snap in half since I couldn't figure out how to recline my chair, but I was the HAPPIEST MAMA IN THE WORLD.
So there you have it. Apparently, I'm not a failure and there IS still hope. Who knows, today could've been a fluke and he could have a horrible day again tomorrow but... today, Elliot proved that he CAN latch on. It's just a matter of whether or not he WANTS to.
Seriously, though, don't let anyone tell you anything different: BREASTFEEDING IS HARD!!

Thanks to YOU, we are now on the FIRST PAGE!!!!!!!!! WOW! Thank you, thank you, thank you! And I also have an assortment of awards to accept. I shall be doing that shortly... probably cheating and putting them all in one post :)

Days thirty & thirty-one

Things have been pretty interesting around here lately, with lots of changes, the main one being that Elliot moved to the brand new children's hospital and into HIS OWN ROOM yesterday! His room is complete with two comfy reclining chairs (one that folds out into a little bed), our own sink (so we don't have to wash in the scrub room anymore), and our own closet for our coats and bags (no more lockers, yay!). I'm able to pump right at the bedside now which is GREAT because I always hated dragging myself away from the nursery to go pump.
We like our new room so much better than the old nursery setup. It's so much quieter and less chaotic, which means that Elliot sleeps more peacefully. In addition, we get more privacy and are able to feel more like a "real" family.
It was easy to see that Aaron felt so much more comfortable in our new room. He spent a lot more time than usual holding, cuddling, and talking with Elliot, and it was so heartwarming to watch. I seriously love this man so much- he has been incredibly supportive and I don't know what I would do without him. He is a great husband and an even better father.
We're slowly making progress with feeding. Lately, Elliot takes 5-15 cc's from us before either getting really mad or falling asleep, and then we gavage the rest of his feeding. He now gets 38 cc's at each feeding, and he is only getting 8.5 cc's/hr of TPN. He hasn't gone to breast in a couple days because he has been breathing so hard, but I think we'll try it again tomorrow, along with some more skin-to-skin time.
He spends a HUGE portion of each day grunting and squirming while trying to poop, and is producing 1-2 HUGE bowel movements a day. Why didn't anyone ever tell me that breastfed poop is often BRIGHT ORANGE?! The first time I saw it, I freaked out because I thought something was wrong. Apparently, it's quite common for the babes lucky enough to eat from the boob. His poop really doesn't smell that bad either... my husband and I have both decided that it smells almost exactly like mustard.
Yesterday, I was holding Elliot and he pooped ALL OVER me. It was pretty funny! He felt so much better (after losing SIX OUNCES from one poop!) that he stayed awake for several hours.

Mama Update: I've been taking Fenugreek for five days now with no results. Everything I've read says that "most women" see results in 24-72 hours. I'm increasing my dose tomorrow and REALLY hoping that it's just taking longer than usual to kick in. Otherwise, my lactation consultant is probably going to write me a prescription for Reglan to increase my supply. I'm also drinking 2-3 cups of Mother's Milk tea a day.
I was really hoping to go home with an exclusively-breastfeeding baby, but I see now that it's not going to happen. Unfortunately, I will be pumping and bottle feeding (breastmilk) every three hours AND breastfeeding a few times a day, too. We'll probably go home doing 2-3 breastfeedings a day and slowly increasing from there. I have no idea how I'm going to juggle all of this and am REALLY hoping Elliot gets the hang of breastfeeding SOON.


Daddy and Elliot bonding.


Kisses! ♥


Why, what big eyes you have!


Just hanging out in his bouncy chair.


YAY for my new room!


Sleeping in the boppy with Mommy- the boppy helps to bring his shoulders and arms forward. He has a very bad habit of letting his arms fall limp at his sides, which is very unnatural for a baby his age but is not uncommon in NICU babies. Forcing him to have his shoulders forward and arms and hands up by his face improves his muscle tone.


Zzzzzzzzz


Don't worry mom, I can hold my own paci.

We're almost on the first page! WOW!

Day twenty-nine.

Elliot wasn't able to try the bottle today because he is still breathing really hard. His respiratory rate was in the 80s and 90s today, and even jumped as high as 120! The doctor said that as his belly fills with food and stretches, it is putting a lot of pressure on his lungs, making it harder for him to breathe. Once he starts breathing more comfortably, we can try bottle/breast feedings again, but until then, we have to gavage all of his feedings into his feeding tube.
Last night we went to a parent meeting which focused on feedings, and we got a lot of really useful information.
I talked to another lactation consultant after the meeting. She recommended getting a six hour stretch of sleep at night again, and also doing kangaroo (skin to skin) care once a day. If things don't start to improve soon, she can write me a prescription for a medication to produce more milk.
So today was my first day of skin-to-skin, where the mom reclines shirtless with the baby in only a diaper on her chest. Elliot fought it at first because he doesn't enjoy being on his tummy, but once he settled down, we relaxed together for a good hour. It was really nice. And boy, does he look cute in just his dipe! I can't wait to get him home and into his cloth diapers.
Kangaroo care is supposed to help regulate the baby's breathing as well as stimulate milk production... and we could use help in both of these areas, so let's hope it works!

Days twenty-seven & twenty-eight.

Some updates:
♥ Elliot's feeds were increased to 27cc's yesterday. He took 5 from the bottle twice from me before being gavaged. Right after the first bottle, he puked up bright yellow mucus which went all over my shirt. So I spent the rest of the day walking around the hospital with a gigantic wet spot on my shirt: marked as a new mom. Last night the nurse got him to take a full bottle, but he puked it all up again.
♥ They decided not to increase his feeds today. When we got to the NICU, there was a GIANT pile of toot-sweets next to his crib- a telltale sign that Elliot was not in a good mood. He was also breathing really fast, even when sleeping {his respiratory rate was in the 80s and 90s}, so the nurse didn't want to even try the bottle. We gavaged him while he was sleeping and then she let me put him to breast while he was gavaged later. At first, he was really angry and kept using my boob as a punching bag, but once he calmed down, he latched on fine and actually swallowed several mouthfuls.
♥ Elliot POOPED yesterday with a suppository and today all on his own :)
♥ Elliot now sees a physical therapist twice a week. We met her yesterday and she showed us a lot of small exercises we could do with him. We are also trying to put him on his left side whenever possible, because he only likes to be on his right side and that side of his head is getting flat.
♥ The new hospital opened yesterday, and all of the babies except for Elliot and his neighbor Charlie were moved out of our nursery. Elliot should be moving soon-and we can't wait because he'll have HIS OWN ROOM in the new NICU :)

Day Twenty-five.

Life with a baby in the NICU is best described as a rollercoaster ride, full of ups and downs. Yesterday, things were going great. I left the hospital feeling incredibly happy. Today was the complete opposite. I left the hospital crying. It just wasn't a good day.
Things started off fine. We were able to give Elliot a sponge bath for the first time, which was fun. Who doesn't love a nakie baby?! But then feeding time came. You would think that after not being able to eat for three weeks, Elliot would gobble up every drop of milk we offered him. Nope. He's not interested in the bottle. In fact, he kind of hates it. He makes this horrible face when you try to get the nipple in his mouth, and arches his back and tries to escape. Then, if/when he finally starts sucking, he just lets all the milk drool right out of his mouth before falling asleep and refusing to be awoken to finish.
Our nurse sensed my frustration (and had a few frustrating feedings herself that morning), so she called the occupational therapist. She works with babies who are having feeding problems. The therapist watched me bottle feed him and pointed out a few problems:

- Elliot has a recessed chin which makes it hard for him to get a good strong latch
- He is starting to show signs of oral aversion
- He works very hard to breathe while feeding (his respiratory rate is in the 70's or 80's, which is equal to an adult running on a treadmill)
- He doesn't understand the suck/swallow/breathe sequence

So, Elliot's honeymoon phase without tubes is over. He now has an NG feeding tube in his nose. He will be given twenty minutes to try to take his bottle. Whatever he doesn't finish in that time will be gavaged (tube fed). This will enable us to wean him off the TPN (IV nutrition), which is horrible for his liver. We have plenty of time to work with him on nippling and feeding but... I just want to bring him home.
The occupational therapist reassured me that problems like these are common for gastroschisis babies, and that the feeding process can take months. MONTHS. It just wasn't what I wanted to hear at this point. It is the strangest feeling to leave the hospital every day WITHOUT my son. I just want him home with me, to be able to do all the things with him that mothers normally get to do. I feel like I'm missing out on this wonderful newborn stage. Quite frankly, I feel like an inadequate mother because I am not able to care for him 24/7. I miss him at night the most, every time I wake up to hook myself up to a machine when I should be nursing my son.
It's just hard.


Elliot a few minutes before his sponge bath


All fresh and clean! {does anyone else think he has reddish eyebrows?!}


New feeding tube :(