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Wednesday, April 29, 2009

Adjusted

We went to the dreaded U of MD Children's Hospital today and saw our GI doctor who squeezed us in for 20 minutes to adjust the G portion of the GJ tubes in each baby. They were in about a little over 2 centimeters too far, which seems like a lot to me. I equate the discomfort and pain they were experiencing to the gallstone attacks I had before I had my gall bladder removed back in October. Just makes me feel even worse that the boys had to suffer this for so long. They seem better now and only each of them only had one vomiting session since 2pm today. This is a big improvement. They didn't even throw up when we gave them their meds tonight or during a big screaming fit they had waking up around 9pm tonight. The true test will be over night and the witching hours from 2am to 6am when their vomiting and reflux seem to be at their worst.

The two teeth the boys are each cutting are really starting to show now and both of them are willing to try putting things in their mouths to chew. They have this horrible expression on their faces like "I really don't want this gross thing in my mouth but I'll try it for you Mom" and are giving the teething a good go at it. They are putting things in their mouths on their own experimentally but nothing with great vigor. That will probably happen soon enough once the teeth really start to come through. I'm excited about trying to get them to let me take a picture of their first teeth to come in, but they usually have a finger in there poking and scraping at the the little sharp bumpy things. This may be a job for Daddy the Tickle Monster!

Tuesday, April 28, 2009

Finally, some answers!

So the boys vomiting has been insane for the last three weeks, peaking at it's worst in the middle of last week. They, especially poor little Evan, vomit in their sleep about once every hour to once every 3 hours, and I never know which one it will be. It's a vicious cycle because it just aggravates the already severe reflux/GERD they have. I call at least once a week for the last 8 weeks asking to speak to the GI doc and beg for them to do something to help the boys stop all this unexplained sudden and random vomiting they do. I have been telling the nurse and the GI over and over that there has to be something wrong with the placement of the boys GJ feeding tubes which go into their stomachs and intestines. Last week at it's worst the GI nurse said she thought it was a stomach virus and totally dismissed me AGAIN and our GI told me personally over the phone that they couldn't be dehydrated because the feeding pumps would make sure they get enough fluids no matter how much they throw up. But the very next day after we gave Evan some Pedialite in his formula (thanks yet again to Sweater who's son Jax is going through the same issues) we saw an immediate improvement and think that things could have gotten very dire had we not pushed the Pedialite issue with the GI nurse. It's to the point that we are not very nice with the nurse and GI doctor anymore and especially not to U of MD Hospital System.

Well today we finally got an appointment and the GI doc hears me out about how the last 8 weeks have been and how bad they got last week through today. The boys both vomited in front of her showing her what the bile looks like and she agreed that there must be something wrong with their tubes because medically there is nothing else she can do for them and so that's the last thing she can think of.

The only thing left to do is make sure there isn't a problem with the tube. We rush to the radiology office at the hospital fourty-five minutes away, and to make a long story shorter, it turns out I WAS RIGHT! The G part of the tubes (the part that goes in the stomach) for both boys are lodged too far past the stomach and in to their duodenum, and poor Evan's balloon is even lodged in there causing him additional pain and discomfort. The tubes are obstructing all the saliva and bile from passing into the intestines, which have increased because they are cutting two teeth each, and that's why they are throwing up so much.

Since the peds GI team doesn't have surgical/radiology hours today, and we refused to stay over night and are going to go back hopefully tomorrow to have them do a quick outpatient procedure to pull the tube back out to the stomach where it should be.

We are discussing the option to try feeding the boys through the G tube port for a few times to see what happens after all this is fixed and possibly even removing the GJ tube all together and replacing it with a basic G tube. On the one hand it seems easier to just use the G port on the GJ tube, but it is less successful to do that because there is already a necessary obstruction by the J port of the tube that we currently feed them through. The GI is suggesting that because they are willing recently to have some foods by mouth despite the increased vomiting, they may be ready to go to feeds through the G port. I have my doubts and am very concerned that this may fail and we'll find ourselves back in the hospital having another GJ tube surgery with general anesthesia. But on the other hand it would be devine to move to the G tube feedings because it means we are just one more step closer to getting off the feeding tubes in a year.

Recently we've had some major success (just yesterday and today) with the BeachNut Stage 2 Applesauce and Oatmeal mix in a jar. The boys have been all over it like hungry baby birds eating more volume than ever before. It beats Bananas by a mile! I'm hoping that we can keep this winning streak in our eating adventures going so I'm going to also try the Blueberry and other finer Stage 2 foods. Technically we're only supposed to be doing Stage 1 purees but the applesauce and oatmeal mix is really thin and I think some of the other Stage 2 foods might be more enticing.

Another bonus to our eating success is changing spoons. We were always feeding he boys with the Gerber rubber coated spoon, or the Nuk nubby toothbrush, or by our finger. Recently we started using the Gerber Take n' Toss spoons and for some unknown reason the boys open wide and are using their lips to scrape the food off the spoon. It must have something to do with the kind of plastic or the hardness or the smoothness of these spoons. They are also a little deeper than the Gerber rubber coated metal spoons which is a more "advanced" spoons to learn to eat from for oral aversion stressed kids. I'm sure than the two bottom front teeth the boys have coming in are also encouraging the improved eating behavior, so I'm trying to take advantage of it where ever possible.

We're all running on very little sleep around here so if this is rambling I'm sorry.

Saturday, April 25, 2009

Adventures in Preemie Outings #8: The Zoo goes to the Zoo!

We made our first trip to the Baltimore Zoo today with our good freinds R and J and their sons Squeaker and Pipsqueak. It was such a nice hot sunny day and we made the decision to go last minute the night before when they invited us and I'm so glad that we did. We got to finally bring together our children and our friends and their children and hang out and it finally felt so NORMAL. Not really worrying about germs and the public and all the other things we've had to worry and obsess over for the last year, just going out as a family to a typical day at the zoo was wonderful.

And the boys were great the whole day. Despite the heat, and recent illness and teething they were both in great moods all day. Even little Evan was chatting and smiling all the time. They never napped at all, not even in the car ride home. I guess they were just having too much fun. Both of them threw up in the car either on the way there or on the way home, but even that didn't dampen their spirits. We gave them baths when we got home and I thought for sure they would crash immediately after but it took about twenty minutes for them to fully wind down and crash. But they're down now and only Cameron has woken a few times and gone right back to sleep after a little rocking.

Hey, maybe this might just jump start a sleeping through the night phase. But ultimately the day was a big success for us. I'm really looking forward to doing this again and again. I'm just sorry I didn't get the camera out to snap some shots. It would have been a great day for pictures too. Thanks to R & J, Squeaker and Pipsqueak for making a great day for us!

Thursday, April 23, 2009

Much better today - sort of

So since the last update yesterday things have gotten better and I think that Evan is out of the woods/danger with this virus. We've been giving him nothing but Pedialite for 24hours and over night I could not sleep (surprise!). He only threw up once around 1:30am and then again at the witching hour of 4am. But in those two times he throws up more volume than ever before and it's dark brown. At the 4am session the last heave had a bit of blood in it. Today his cheeks are rosy and his eyes are clear blue and he's been babbling all morning and playing, though he doesn't have the muscle tone back yet. I no longer feel like we're on the verge of a trip to the ER.

Still waiting to hear from the GI doctor. Bastard.

Wednesday, April 22, 2009

Update

After over five hours I finally called for the third time in the day and spoke to someone about Evan. The GI nurse says she thinks Evan has a stomach virus that is going around but we think it's a crock of crap and they just do everything in their power to keep us from coming in to see the Dr. Last time something like this happened and the doctor said she was never made aware that we'd been calling every week for help. We have an appointment with them next week but we've placed several calls to try to get them to see us sooner. We will be asking for a copy of the boys medical files and looking for another GI, either at craptastic Johns Hopkins or DC Childrens Hospital, though we're hoping to find a GI peds specialist in Annapolis for several reasons. In the mean time we're stuck working with our current GI.

Tonight I weighed Evan before his bath and since Sunday (today is Wednesday) he has lost 9oz. That's a half pound in three days. All from the violent vomiting. Today he's now 16lbs 1oz down from 16lbs 10oz. He's got a sunken fontanel and his diapers are not very full at all when I change them every four hours, so his urine output has decreased. I'm trying to see if he's having any tears when he cries but so far his cries are fussy I'm Not Happy I'm In Discomfort cries and not bawling upset cries. He's fussy all the time, whiny, and lethargic but a tiny better than he was yesterday. You can definitely see and feel the difference in his muscle tone and weight.

We are giving him Pedialite and it is helping but we're sure that there is something wrong with the GJ tube placement. It may be in but we're convinced there's something not right causing him great discomfort. At our next GI visit we will be talking about scheduling to have the boys tubes replaced with the smaller McKey Button version. Hopefully that will help and be a better experience than our initial GJ tube placement.

On the flip side Cameron is doing fantastic. Sleeps like a champ from 6pm to 3 or 4am with rarely a peep, except when woken up by the screams of his brother. He's in a great mood, and is now 20lbs 4.5oz. With this weight packed on he is much stronger and more willing to explore his strength by pushing and pulling on me when I hold him so that it's like trying to hold on to an octopus. I love it! He's sitting unassisted for upwards of 20 minutes at a time, but can't put himself in that position at all. We're working on that. He can stand on his own for a few seconds and can go from sitting in a chair to standing as long as he has a table to lean on. He's eating pretty well though the volume he can eat is still an issue. We switched to a deeper Take & Toss plastic spoon from our usual Gerber's rubber coated spoon and I'm not sure why but he seems to enjoy eating off this new spoon. And this week Cameron finally learned to do something that Evan has been doing for about four months... He can put his paci in his mouth by himself!!!!

Prior to this week Evan was standing with assistance nicely and he can sit unassisted for up to 10 minutes when properly occupied with something fun. I'm sure once he's feeling better he will be back on track in no time, but it's so frustrating to see him struggling in so many ways.

I am also looking for a Chiropractor who is experienced with infants with reflux that is covered by our insurance. Since we're on track to hit our catastrophic limit for the year it should be covered and I'm going to take advantage of every service we can get. One of my good online friends Sweater has had great success for her son Jax who's going through the same things and he's now sleeping 9 hours a night. Dear god what I wouldn't give for even just four hours of uninterrupted sleep, unworried about Evan's spontaneous vomiting.

Tuesday, April 21, 2009

Can you imagine? Every 15 Minutes?

My poor little Evan has been getting much worse. Over night he threw up every fifteen minutes like clockwork. And not the usual barf and rebound. Horrible, heaving, gut wrenching, body arching, barely catch your breath breathing. I don't know how he was able to generate so much fluid so quickly but I'm guessing he threw up about 200 to In between he would dose off for a few minutes but mostly spent the time moaning, whimpering, crying, screaming in pain and flapping his little hands vehemently with anxiety. He throws up every medicine put in to his belly tube and desperately wants his paci but can't hold on to it for more than a few seconds because he's so nauseated all the time. The farrell bag isn't doing much to help catch or draw the fluid from his belly but what it is catching is dark green-yellow with what looks like a bit of curdled milk floating in it. There is no fever (at this time) and the GI doctor says that by keeping him on his feeding pump he's getting the maintenance fluids she needs so she's not worried about dehydration. I'm waiting for her to call me back because I think his J tube is not on proper position with so much heaving and the plastic flange on the tube at the belly is stuck tightly to his skin, as well as the curdled milk in his barf bag. He is lethargic, and doesn't want to be held, and inconsolable, but then as soon as you put him down he starts crying and whimpering and holding his arms out to be picked up.

Friday, April 17, 2009

Obviously we like to do things in twos around here.

We have two dogs. We have two cars in the same color. We have spontaneous twin boys. And the tradition just keeps on. Today the boys had to have blood work done and I am able to confirm that both babies are cutting two teeth each. It's the bottom front two teeth. Cameron is dealing with it better than Evan by leaps and bounds but he's also increased his bile and vomiting. The GI said there is really not much they can do because the will come and with it the increased saliva and the oral aversions.

Thursday, April 16, 2009

Teething + Oral Aversion = Ugly

Teething is often a miserable phase for babies and their parents. But add to that the issues of oral aversion, heightened gag reflex, and mysterious vomiting and you have an ugly unpleasant mess.

Evan is cutting his first tooth, possibly two teeth but he won't let me get a good look. Since last night's initial teething scream fest he has barely slept and has been heaving and throwing up every two hours. The poor kid is lethargic and generally in a really bad mood. He hasn't cracked a smile all day. Can't blame him but I have done everything in my power to make him happy and comfortable. Nothing seems to work. It turns out that teething babies produce more saliva and naturally swallow it or drool. When the baby has an oral aversion to things in its mouth it gags and tries to heave up the contents of its stomach. All. Day. Long. And all night long too. Four times while Evan was sound asleep last night he began throwing up with no warning. And then he screams in pain when he's awake scaring his brother who's also not feeling his best.

And the farrell bag we have connected to the port in Evan's stomach to vent fluids and the gasses is filling up at an all time rate and volume. Heaving and vomiting many times a day on an empty stomach(we pump food directly into the intestines in the Jejunal port of his feeding tube) is enough to make anyone crabby, but this kid has thrown up mucus and bile 20 times today. He's exhausted and always in discomfort, and he's teething but putting things in his mouth is not his favorite way to sooth himself. He even refuses his beloved pacifier!

The doctors don't now why this happens all the time, usually about 5 times a day per baby, and don't really care and offer no advice or assistance to this vicious cycle aggravating our struggles with reflux and oral aversions. If every time you eat it hurts, and every time you throw up it hurts, and you can't stop the throwing up, wouldn't you just not do anything related to eating, swallowing, etc? So how are these boys supposed to overcome and outgrow the reflux on top of growing teeth?

When I ask this exact question the doctors, for all their education and specializations and fancy better-than-thou / you're not the only one in this boat attitude, literally can not answer it and can only say that somehow they out grow it eventually. Surely one of these smarty pants fancy doctors have SOME ideas that can help.

We're all exhausted and no one is feeling good, least of all Evan and Cameron. And it's only been the first 24 hours. *sigh* My poor babies. This is not the birthday gift to themselves that they had hoped for.

Just to show you how much Evan loves his paci here's a little video of him with it in better days. Cameron can't even do this trick!

video

Wednesday, April 15, 2009

Mission Control, we have a TOOTH!

Yes, and of all our babies the one to get the very first tooth is Evan! In fact it may be two or even three teeth. But I can only be sure of one sharp pointy thing poking out of his pink little bottom gum as he screams and shakes his head from side to side enough to impress Linda Blair in The Exorcist. When a kid with serious oral aversions does not want you to be in his mouth he means business!

I'm so excited for Evan! Finally something special has happened to him FIRST, before Cameron. But I suspect Cameron is right behind Evan in the tooth-growing department as he's been equally fussy and running small temperatures for days. We actually mistook the temperatures for the after-effects from their 12 months vaccinations.

My little babies are growing up! I wonder if I'll be able to get a picture of it in a couple days when it stops hurting him. It's going to be a loooooong night and a looooong week.

Tuesday, April 14, 2009

American Academy of Pediatrics Preemie Support Website

The American Academy of Pediatrics (AAP) now has a Web page designed specifically for parents of premature babies. Included as part of AAP's Section on Perinatal Pediatrics Web site, the page includes articles, links, free brochures and recommended reading. The Section on Perinatal Pediatrics is the home organization for specialists in Neonatal-Perinatal Medicine. Currently, the Web page features topics such as the importance of skin-to-skin contact (also known as kangaroo care) for premature babies and a link to a free brochure with information on preemies' key developmental milestones. To access the Web page, go to http://www.aap.org/parents.html.

Wednesday, April 08, 2009

Another reason to celebrate!

The boys are officially on the charts! They are 12 months old, 9 and 1/2 months adjusted.

Cameron was 18lbs 15oz in the 5th %, Length 29" in the 25% for his ACTUAL age and not adjusting for prematurity, and Head Circumference 46.5cm in the 50% for his ACTUAL age again. He's now normal size for his actual age but very skinny.

Evan was 16lbs 4oz in almost the 5% for his ACTUAL age, Length is 27 1/4" in almost the 5% for his ACTUAL age and should be there for both by next month no problem with his current weight gain. Here's the big news: Head Circumference 45cm in the 50% for his ACTUAL age and so he's on the charts officially in that area. This means Evan is much smaller than other kids his actual age and still very skinny but growing and getting fatter.

This last one was most concerning because if the head growth slows, stops or does not keep up with the rest of the body it could be a sign of something bad like Cerebral Palsy, which is even more concerning because of Evan's poor muscle tone. Over the last two months the boys have gained almost 4lbs each!!! And because of all this growth they are starting to push up on tummy time, roll like maniacs, and are starting to sit when placed in that position. Cameron can sit up unassisted for several minutes as long as he's occupied. All thanks to the massive weight gain and reduced pain from reflux because we have the feeding tubes.

So we're all finally growing in the right direction.

Here are some pics I took over the beautiful sunny weekend we had recently.





Mom! Evan picked the flower!








Tuesday, April 07, 2009

My Review of Fisher-Price Little Superstar: Sing-Along Stage

Toys R Us

Little ones love to be in the spotlight and they love to sing, dance and move! The road to stardom starts right here, with a jam-packed stage that encourages singing, dancing, discovery, and all-around self-expression. The Sing-Along Stage features two modes of play, babies can activate lively song...


Got my Preemies to sit unassisted!

Laura - Mom to twin 28 weekers Maryland 4/7/2009

 

5 5

Pros: Durable, Engaging, Educational, Interactive, Lots of Fun

Best Uses: Indoor, Young Children, Entertainment

Describe Yourself: Stay At Home Parent, Education Oriented, Parent Of Two Or More Children, First Time Parent, Parent Of Multiples (Twins etc)

I was looking for something to entice my twins to sit unassisted and to bear weight on their hands and that would not agitate one baby's minor sensory delay with his hands. This did the trick. Also, they are learning to stand holding on to this toy and looking at the lights and mirror. Love it, just wish it had more songs... :-)

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Edit Update: I bought mine at a yard sale/tot swap for $15 without the microphone rattle but it sells new at Babies R Us /Toys R Us for about $49.

My Review of Big Oball

Toys R Us

Big Oball is super durable, super soft, and super indestructible. It is crushable, kickable, catchable, and throwable; it is everybody's favorite ball! Kick it, stomp it, crush it and Big Oball bounces right back to a perfectly formed ball. Big Oball is amazing action fun with amazing durabilit...


Got my Preemies to open their hands!

Laura - Mom to twin 28 weekers Maryland 4/7/2009

 

5 5

Pros: Sturdy, Good for small hands, Durable, Attractive Design, Hours of Fun, Fine motor skills used, Gross motor skills used, Light for weak muscles

Best Uses: Individual Play, Small Children, Physical Activity

Describe Yourself: First Time Parent, Parent Of Multiples (Twins etc), Parent Of Two Or More Children, Stay At Home Parent, Education Oriented

I was searching for a toy that was small enough to fit my preemie twins hands, that was light enough for them to hold on their own, and that would encourage them to bring both hands forward to the mid-line. This was the toy that made the magic happen! I love this thing! And it washes in warm soapy water and dries quickly. Best preemie toy ever!

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