Squeaker the Dragon Turns Five!

Happy Birthday to our good friend Squeaker the fiercest Dragon in all the land!

You turn five hundred years old today, that's like five years old in human people years. Which means you are still a young Dragon but in your parents loving eyes you are growing up much to fast for them. We wish you many wonderful blessings and shiny things, and hope that this is your favorite year ever.

Love from your freinds the Twin Dragons Cameron and Evan, and their parents Uncle Drew & Aunt Laura!

MTV Cribs - The NICU Edition

Preemie Moms! You may find this either completely hysterical or totally offensive. Either way, we must give the kid who made this props for knowing his NICU stuff. I found this just too damn funny!

http://www.youtube.com/watch?v=Hg0w2bJ7YaU

Yay for Little Boys

What are little boys made of?
Snips and Snails, and puppy dog tails,
That's what little boys are made of.

I am going to be the aunt to another Baby Boy M. due July 23rd! We are so excited and can't wait for our family to expand so that Mommom and Poppop will have five grandchildren, three of which will be under the age of two! Congratulations and much love to Mike and Val on their bundle of joy to come. You guys are about to have a blast!

Here's some really adorable pics of Mom & Dad growing up! Now they will get to enjoy watching moments like these....

I found your camera and orphan pictures!

I saw this link on Post Secret this week and now I'm addicted... I've never lost a camera before but it would be cool to see some people or places I know.

http://ifoundyourcamera.blogspot.com/

Enjoy!

Ladies!! I need a favor for a friend!

I have been best freinds with Mrs. A. since 10th grade. She is one of the kindest, most generous, loyal, and thoughtful people in the world. There isn't a mean or spiteful or jealous bone in her body. She has diplomacy skills and foresight to work through any situation. She is extremely intelligent and super fun. And yeah, I'll say it, I'm not embarrassed. I think I might even have a little girl crush on her she's so awesome. And I know that there isn't a single person on this planet that would argue with me on this. She is a wonderful wife and an amazing Mommy. And now that I've completely embarrassed her I'll tell you why I'm posting this.

My dearest and closest friend is pregnant with Baby #2 and has just been put on modified bed rest at 16 weeks. Bed rest to most people sounds like an extended weekend off to eat and nap as you please. But the rest of us know that this is really a scary thing, especially when faced with a lot of weeks for your baby to be ready to arrive healthy. Every woman ever placed on bed rest has had those moments of utter panic and fear and doubt. Then there is the tediousness, the monotony, the desire for a long hot shower or a stroll down the block, or even to go out to dinner. And the heartbreak of not being able to pick up your toddler and get down on the floor and play with them or do many of the day to day things you would normally do with them.

Now I would have posted a simple and basic and generic "Please send good wishes" post but that's really not my style. And I wanted to do something that would be more helpful than just showing her that I care. I want to show her just how amazing the support can be from all of you wonderful women out there. You all know how much it has helped you to have people cheering you on from afar, lending the much needed virtual ear and shoulder to cry on even though you have never met in real life. So I'm asking a big favor from all of you.

1. Please send Mrs. A. all of your available Happy Baby Baking Bed Rest Dust possible.

2. Please take a moment to post a comment with words of encouragement and any tips, hints and tricks on making it to 40 weeks on bed rest with a 4 year old toddler.

I'll start the list:

- My first suggestion for Mrs. A. is to find some support, in whatever way you can. People to help you through your days with anything you need and especially for things you shouldn't be doing yourself (because I know you will and I shake my finger at you for getting up off your butt to cook and clean!).

- My second suggestion to Mrs. A. is to start a blog. It can be anonymous and it can be as vague or specific as you want. You can really let some of your fears and frustrations go by blogging.

Thanks again to everyone for all of your support!

Love,
Laura

Can't blame that one on the dog!

I was sitting watching Grey's Anatomy and FaceBooking and I smelled the worst smell of poop ever. I looked down and realized my favorite 65 pound lap dog Bridget was at my feet. Ugh, no surprise right? She's a poop eater and maker, and she's very gassy and needs a bath in the worst way. But five minutes later I was still smelling the lovely bouquet.

It was time to go refill the boys feed bags (yep, they have feed bags but they hang from IV poles instead of from around their head like a horse). I bounce up the stairs, well more like drag because I really should be in bed, and open the door to their room and nearly passed out. Oh. My. God. The stench was horrendous. Just then Evan starts screaming and so does Cameron. I can't tell where the smell is coming from. I assume that both boys had blowouts and take Evan to the changing table first. I open the diaper and their is my culprit. A small thick puddle of pasty dark green foul baby butt butter courtesy of the teaspoon of pureed carrots we were allowed to give him today. Mmmm....

I cleaned him up and had Daddy change the next baby in line, but that one had no poop! So the smell that came out of teeny tiny barely 12 lb Evan filled up the nursery making it passed their closed bedroom door and wafted all the way down to the living room. I owe Bridget an apology.

Ahh.... Home Sweet Home

It feels so good to be home! I missed my doggies. I missed my mom. The quiet of my home. The comfort of knowing everything in our house is germ free. There are no strangers wandering around sick. No nurses to take vitals every four hours or cleaning staff changing trash bags at 2am. No doctors that like to come in, turn on all the lights, talk loudly, poke babies and run. And there is internet that is available any time I want. Oh! And my poor DVR is bursting at the seams with all the shows I need to catch up on. And I can't even express how excited I am that I will be taking a shower in my own bathroom and sleeping in my own real bed, instead of a cold water-pick like shower and a narrow plastic covered bench or fold out chair.

I am happy to be home, but I don't know if I can say the boys felt the same way. Three weeks in the hospital is a long enough time for their little goldfish-like memories to have forgotten home. It's all new territory all over again. And their stranger anxiety was in high gear even though they normally love and gravitate to their Granny Cathy. Nothing would console them for hours but being held by Mom and Dad. They are finally sleeping thank god, laying down flat in their own cribs for the very first time. It took almost two hours to get them to finally sleep but they wake up on spastic furious angry screaming fits until we pop a paci in their mouths.

I'm trying to wrap my head around their medicine and sleep schedules. The GI wants us to try to feed them one ounce of Good Start a day to keep them remembering how to take a bottle. And she wants us to try giving them a tablespoon of watered down puree foods, though staying away from anything or quantities that might give them diarrhea like fruits. She is hoping that we will transition from 24/7 continuous pump feeds to feeding on the pump over night and eating by mouth either by bottle or purees three meals a day. But having them on 24/7 continuous pump is surreal because now I don't now what I'm supposed to do with all this extra time that I'm not trying to coerce two babies into eating with sever reflux. I guess we'll have time to make a few more laps around the playroom toys.

Also, because of our hospital being such the proactive and well coordinated bunch, they have not given the boys their RSV shot for the month of February. This worked out in our favor because our pediatrician spoke with the representatives at Synagis about the reactions they had to the last three shots and the company officially said not to give them the shots any more because it is likely their allergic reactions will get progressively worse each time they're given the shot. This is fine with me, but now we will need to be even more anal about germs and going out in public.

Here are some pics of the boys during our stay along with a great video of Daddy making them laugh so hard they peed themselves.

Cameron & Evan with their NG tubes (these are the tubes that go to their stomach which did not work for them at all).














How do you entertain two babies attached to feeding tubes and IV's??












Evan's OT says he has a hyper-extendable thumb joint which if not corrected could do damage to the tendon. Basically he's super double jointed in one thumb, moderately double jointed in the other. This did not stop him from breaking in his new thumb brace with some good old fashioned slobbering.







Cameron is already living up to his fathers expectations of being a professional video gamer!







Cameron chillin' in the playroom at the hospital.






The boys are showing the doctors how it really should be done.






Evan post GJ tube surgery.







Dueling GJ tubes.






First attempt at escape:



Interactive babies are very grabby at EVERYTHING!


This is how we celebrate going home!



My husband and I would like to thank everyone of you for your support and encouragement, even though we may have decided to do things differently. We hemmed and hawed, we argued and debated, we cried and agonized over what would be best for the boys. We stretched and grew the foundation of our marriage and our love for each other and our boys. Every one has been so wonderful to us and it just blows our minds every day at how amazing it is that we have all of you, lots and lots of people many of whom we have never met, cheering us on and loving our boys from afar. We can't even begin to properly express our gratitude for all of your love and support through this difficult and very scary time.

Happy Birthday Aunt Valerie

Just a quick shout out to Aunt Val who is celebrating her birthday today!

The boys send you big sloppy slimy kisses.

Great Site for those of you with Feeding Tubes and other Special Needs

Some friends have suggested I go to this website for support on our feeding issues and dealing with g tubes and gj tubes. Check it out:

http://www.parent-2-parent.com/forum/

Not leaving on Sunday

Evan has an infection at the entrance of his tube in his belly. We had been giving antibiotics via his GJ tube but it's not cutting it anymore. We had to put another IV in for antibiotics and even the expert Neonatal Transfer Nurse Manager had great difficulty in finding a vein that would work. It took her four tries and she used every tool, bright light, back light, and black light and trick in her book. I can only imagine how many tries it would have taken the knucklehead resident doctors to get it had I even let them try. She said that in time it would become easier but that she hopped we wouldn't need to stick him any more any time soon. Poor baby.

So because of this we will probably not leave until Monday or Tuesday. Sigh....

Update to Phase Two

Cameron did have some on going allergic reaction but we're not sure to what exactly because he's on Benadryl but he turned lobster red like Evan did about an hour after surgery and has had a fever ever since though it has come down a bit and the redness is finally going away. They are completely off sleeping schedules, though after two hours we finally got them to sleep. Hopefully tomorrow will be the start of better things.

Sadly we will be spending Valentines day in the hospital and also missing a family dinner to celebrate both Aunt Val's birthday and Valentines day. It would be so nice to be able to go out for a normal family function. Hopefully we'll be able to make both of those up soon.

Phase Two: Complete

Cameron just came out of surgery and is still sleeping the anesthesia off. Things went well, better than Evan, because his intestines were a straight shot and Evan's had to make hard left per the surgeon. So far Cam hasn't turned bright red but he has temp of 100.1 so there possibly is some reaction to one of the meds or the contrast IV dye they used. Hopefully the Benedryl we gave him just before the procedure will prevent any worse reaction.

It sounds like we might not be out of here until Sunday now. We're so ready to be done with this place.

RSV Next Door

Our pediatrician student resident is now doing a rotation on our floor. She comes to visit us and has been working with our pediatrician to have our RSV shots administered here. This morning she dropped the hint that there is a baby next door that has RSV. I also believe there is another child somewhere on the floor who has it too. We generally don't leave our room, but occasionally walk the hallways with the boys (pre-Frankenstien surgery) to give them a change of scenery. We won't be doing that anymore.

Today we had some more student nurses coming in and out to take the boys vitals. I'm glad we were inadvertently given the heads up that there's RSV next door because several student nurses either held or worked closely with that baby before coming in to our room. I asked them to not touch my boys or lean on anything. They were all very understanding and I did talk to the Nursing teacher overseeing them today. She apologized and promised not to have any more students coming in our room, but didn't provide an explanation of why they let this potential for cross contamination happen in the first place. Thank god either I or my husband are here 24/7. The boys will be given their RSV shots and monitored for further allergic reaction to the shot sometime after Cameron's recovery on Friday.

Evan is doing a little better now that he's getting Tylenol every 4 hours. He's also being put on antibiotics because the area around the tube is still redder than the doctor would like and she's acting as a precaution. Cameron gets an IV put in tonight for tomorrow's procedure with his feeds stopped at 2am and pedialite stopped at 6am.

Phase One: Completed

Evan had his GJ surgery today and the procedure itself went well. That is except for two things. The first sedative they gave him can have varying effects on kids, from elation to looking stoned to panic terror screaming. Evan experienced the latter and I guess the sensation was so trippy for him that even when he looked at me he shrieked in terror.

And worst of all was the allergic reaction he had to the contrast IV dye solution they put in so they could see everything on xray while performing the GJ surgery. The anesthesia nurse told me they moved him from the radiology procedure table to the transport crib bed once they were done the procedure and she and another nurse both noticed he was turning bright red and getting really hot quickly. He had a temperature of 101.4 for about a half hour after in the PACU recovery room. They gave him Benadryl and Tylenol and he slowly returned to normal.

After he recovered and we'd returned to our room he had another flare up of the allergic reaction because the contrast dye has to process through the kidneys and out in his urine. The nurses reacted quickly with more Benadryl and we now have an Epi pen at bedside for the night nurse if we see any swelling, trouble breathing, or other complications. He periodically still wakes up screaming but we're not sure why this is. Maybe pain, though this procedure was supposed to be painless.

In speaking with the anesthesiologist, the two anesthesia nurses, and the PACU nurse (who is a former 15 year veteran NICU nurse as well), as well as our GI specialist this reaction is kind of uncommon and causes a type of histamine reaction to combat the contact causing allergen, just like you would react to a bee sting or peanuts. The lucky thing is that he did not go in to full anaphylactic shock or respiratory distress, though if exposed to this allergen again and any other subsequent future exposures the body's reaction will increase to fight the allergen as quickly as possible and he could go into shock or respiratory distress then. Additionally, they said that since he and his twin are so genetically similar, even though they are fraternal, Cameron will likely have the same or similar or worse reaction. For the rest of their lives we will need to make sure medical staff working on them know of this allergic reaction. They are going to get us a list of medications by name that have the same compounds as the contrast IV solution used today for our personal medical records for future reference.

Phase Two is Cameron's GJ surgery on Thursday. Now that we know that he's likely to have the same kind of reaction they are working with anesthesia to see if there is an alternate contrast dye solution we can use, and before the procedure we'll give him Benedryl and Tylenol. I just wonder if he'll have bad trip on the sedative like Evan or if he'll be a dopey ray of sunshine.

Phase Three: Profit - This is really how we figure out how to get them to eat like normal again.

One last update... I spoke with our head GI specialist and she consented to allowing the boys to eat birthday cake, as long as we made sure it was just a tiny taste. They can lick icing at least so I'm very relieved.

Edit Update: We had a rough night with one more flare up of the allergic reaction but it was not nearly as bad and it passed quickly. He's been having lots of screaming bouts but he's shaking his rattle (even in his sleep he does this, so cute) so I think he just doesn't manage pain well.

Edit Update 2: We just learned that there is at least one baby just a door or two down from us who has RSV. I don't know when they were admitted but my guys didn't get their RSV shot this month yet. They are waiting to give it to them post op and will watch for their reactions before discharging us. Not like we weren't being really careful about germ control but now I'm really paranoid and have run around the room with cleaning wipes.

Complaints have been filed.

I have spoken with both Patient Advocacy and the Nurse Manager about our experiences and submitted our observations about the pathetic security detail to the Director of Security for the hospital. There isn't much more for us to do at this point but move forward, though they have committed to going through employee re-training on safety and security protocols as well as doing an investigation about the fact that our boys were made to go without food for long periods of time unnecessarily.

Both Cameron and Evan are still throwing up bile even on the NJ tubes. No one is sure why they continue to do so, but it's being monitored and we are slowly weaning them up in volume to make sure they can tolerate the pace of the continuous feeding pump. Evan will have his GJ tube placed tomorrow and Cameron will be on Thursday.

Another "First" will be Lost

As parents of preemies we view everything in the world in a very different light. We take every little thing and magnify it because our babies have so many challenges that healthy full term babies don't. We cherish the many firsts that other mothers of challenged-free kids would never think of. Like the first time after 24 hours when I was allowed to hold Evan, and a week and a half when I was allowed to hold Cameron for the very first time. The first time that I heard their little tiny cries after they were taken of intubation. The first time I saw their faces without tubes. The first time Evan's left eye finally unfused two weeks after birth. The first time they could wear clothes. The first time I could change a diaper, take them out of the isolette, feed the baby by bottle, try to breastfeed, give them a bath in a tiny bucket, measure how much they ate in ounces instead of milliliters. Opening their hand, and then the first time when they opened their hand intentionally to grab the rattle offered. We even had a tiny party for their actual first birthday celebration to celebrate their Estimated Due Date birthday where they were now 0 years old instead of a negative number.

The boys will have GJ tubes in their bellies by the end of this week. Because of this they can not eat anything by mouth (or so I have been told) because the tube is an obstruction and they would not be able to pass anything from their stomach into their intestines like normal as it may cause a serious blockage.

How are they supposed to enjoy their first birthday cake? It didn't even occur to me until I was oohing and aahing over another preemie Mom's adorable 1st Birthday pics. I feel like for us it will be yet another typical "first" moment that will be lost.

I will ask tomorrow about whether or not I can let them at least lick some icing off their fingers, but I am pretty sure the answer will be no.

I'm so upset.

The kid next door

Across the hall is a little boy who's been here just a couple days less than us. I don't know what his condition is but he's been unable to eat for several days in preparation for some procedure he's was going to have. He's about eight years old and from everything I've witnessed from our door to his, the encounters in the hallway, he's a very sweet and well behaved little boy. He sings on his karaoke machine, plays video games, colors and does book reports and homework at the nurses station, and generally stays pretty self occupied. He's not shy at all and is quite the exhibitionist and puts on singing shows for everyone in the lobby of the pediatric wing.

Tonight I had our room door open (very rare) and Cameron was playing in his exersaucer and watching people walk by. The little boy came to our door to chat and asked the typical questions about the boys. Are they twins? What are their names? Are they boys? Then he said "Wow, both your babies are in the hospital. You must be a bad parent." And then he walked away singing into his microphone.

The nurse told me he told her that she's his third favorite nurse and didn't think she could ever be second and definitely not first. Eh, he's eight. What else can you say to that?

Argg! UMMS sucks!

I'm posting about this now because I've been too angry to post it sooner. I know this is a teaching hospital and I'm all for on the job experience, but it peeves me to no end when yesterday a resident intern doctor who has never met the boys, never even came to check them over told the nurse on duty to just push the NG tube in to make it into a NJ tube. Thankfully our nurse was smart and refused to do it because only PICU and NICU nurses are allowed to do this. When she told me this is what he's said I verified that those were his instructions again and asked her to please have him come see me personally to discuss his instructions. I just knew there would be something wrong with all of this.

Having already had one baby go through this torture I know exactly how the procedure is done, what type of equipment they should use and who is authorized to do it. Later on in the day he barged into the room while the guys were sleeping, said in a loud voice "Can I turn some lights on?" and left the door wide open. (Most of the doctors do this kind of thing and it really pisses me off to no end. Do you know how hard it can be to get two sick babies to go to sleep??)

In a not nice tone I told him to keep the lights off because the babies are sleeping. He began to introduce himself and explain the process of an NJ tube insertion, still telling me we'd use the same NG tube already in there and push it down a couple of inches, the whole while gesturing towards Evan who's already got this kind of NJ tube. I told him that can't be because it's a different type of tube that's used. He then got a confused and worried look on his face and then recanted that yes indeed it would be a different tube with a special wire in it and that we would indeed need to pull out the existing NG tube to place the NJ tube. Then they did the procedure to have the NJ tube for Cameron almost immediately after this conversation with a very well trained PICU nurse teaching our wet-behind-the-ears resident intern doctor, and our on duty nurse helping.

But all of this pissed me off because A) a resident better not come to me and tell me how a procedure is done incorrectly and not even check to make sure he's looking at the right baby, and B) it just proved yet again that poor Evan was made to starve and suffer unnecessarily yet again for more than 12 hours. The PICU nurse was shocked that Evan had been made to go so long without food just for an NJ tube insert.

***Guest author says: and don't forget this morning's dazzling display of incompetence! Nurse A comes in, introduces herself and tells us she'll be Evan's nurse today. Excellent. Later, nurse B comes in and introduces herself indicating *she'd* be Evan's nurse today. Huh? Daddy, being very astute and suspicious, asks if she's working with another nurse because Evan's nurse already checked in with us. She assured me, nope, she's his sole nurse today. So she gives him some of his meds. Fast forward a short while and nurse A returns with those same meds! Thank goodness we were here AND micromanaging these clowns or who knows what would happen to our boys.

Also, last night both boys managed to throw up while on their NJ tubes. We've set their rates of formula distribution on their feeding pumps to slightly slower rates but if they throw up in the NJ tubes between now and when they have the GJ tube then we will try to get MRI's done while they're still sedated for the GJ tubes. This is scary because we've had so many system failures here that coordinating two different proceedures done at the same time while the boys are under longer sedation which has greater risks in and of itself.

I have made attempts to contact the patient advocate office but they don't seem to have anyone in their office on the weekends.

Update to last post re: Cameron's NJ tube...

We are very disappointed, but all information we've searched, people we've spoken with, including our pediatrician and her resident who also is doing a tour in our peds wing and working as our advocate with our Attending specialists, have led to this decision. We have decided the best course of action is to have GJ tubes put in both babies. The earliest they may have them done is maybe Tuesday. We've fought and fought but the bottom line is we can't keep these NJ tubes in forever and we'll just prolong their discomfort. Going with the GJ tube surgery will at least save Cameron one nasty step of having the NJ tube put in for a few days. Poor Evan was not so lucky. I just hope they don't ever remember any of this and their time on the GJ tube is short.

Cameron is getting the NJ tube too!

Cameron has been throwing up every feeding and refusing the bottle each time we try. Overnight while on a slow continuous feeding pump Cameron threw up. They are now starting getting everything prepared to have him get the NJ tube like his brother. They are also going to put him on the same formula as his brother, from Similac to Neocate, so that he doesn't have to work so hard to digest it.

We are discussing whether we should just go ahead and do the GJ tubes this week. They will not overcome their feeding aversions in two more weeks fast enough to not need the GJ tubes and we are already here in the hospital. If we do the GJ tubes we will not need to go to Mt. Washington hospital as inpatients and can just do their outpatient program from home. The hospital is 45min from home and only one parent can stay overnight at a time (though for us that might not be an issue since there are two babies) and the inpatient program is only 11 miles from our house.

And you thought poop was important!

When you become a parent the first thing you become a master of is poop. You know all the different kinds, what they mean, how to make them different colors by feeding your kid different things, and how to wash it out of anything it comes in contact with. And you count the poops. Yep, you count them like you were a little kid counting the big silver quarters in your piggie bank. Constipated babies are not fun people to be around. And babies with diarrhea can quickly become dangerously dehydrated. So poop becomes VERY important to all parents. You find yourselves having serious conversations about poop.

Well, now we are counting pee pee diapers like they are liquid gold. Evan is struggling to produce urine. We are pretty sure that it's because we slowed his continuous feed pump to 20mls per hour due to the fact that his body can't handle more than that. The normal rate is about 27mls to 30mls per hour. I'm also trying to regularly remind the clever doctors that they let him go for 14 hours without eating which would screw up his system too.

Last night his vomiting that shouldn't have happened actually happened because he can't digest this much food fast enough and so it all came back out the stomach with his bile. It was very painful for him and scared the freaking crap out of me.

We did an xray and the tube is placed correctly. He is on yet another IV drip with sugar for calories to supplement what he's missing in the continuous feed pump. We may need to move to adding TPN in his IV as well. They told us if he has another vomiting episode on 20mls/hr then we will need to do an MRI (which for an infant requires sedation again) to see if there is something wrong neurologically with him. They do not think this stems from the Level 1 hematoma/brain bleed they found during a standard NICU head ultrasound. That one was so small and insignificant the neonatologists almost missed it and argued over whether to call it a brain bleed. (For those of you who don't know, brain bleeds can be pretty common in preemies and are categorized as Levels 1 through 4, with Level 1 being usually pretty tiny and heal quickly on their own with no issues.)

Cameron is also still having vomit issues but not nearly as bad or as often as Evan. We have been approved to transfer to Mt. Washington Peds Hospital but Evan is not considered medically stable for transfer yet, and Cameron is borderline because they upped his meds and added something called Karrafate (sp??) which is supposed to work like Milk of Magnesia after he's eaten. So far it's just made him gag and throw up. And since the new hospital doesn't take admissions on the weekends we will have to wait until Monday at the earliest to transfer.

We are still trying to work out the transition on that one as each baby is transferred via ambulance separately which doesn't make me happy but apparently there's rules about this kind of thing. And since Cameron is borderline they have agreed not to split us up between the two hospitals, at least not yet. If Evan's situation turns out to be worse then we will be split between the two hospitals.

So far last night was the best night yet, with Cameron only spitting up a tiny bit and Evan not at all.

Evan had a bad night on his NJ tube...

At 2:30am Evan was asleep but fussing for a pacifier. I popped it in his mouth a couple of times and then all of the sudden he started vomiting and retching. We were told this should not happen at all with this NJ tube. His whole body was cramping and I could feel all kinds of bubbles from his shoulders to his butt. He even pooped with the force of it all. They think that somehow the NJ tube has migrated and we will have to do another xray this morning.

Cameron had a great night and slept peacefully with no vomiting.

Evan is getting the NJ tube!

Evan is getting the NJ tube because he threw up last night on the Similac 30 calorie formula too. Cameron is doing okay with his, we just can't get him to eat it by mouth.

We are waiting for Mt. Washington Hospital to come evaluate the boys and see if we will be moved to from Univ. of MD to there. This way they will continue to treat the boys from a GI aspect and get them to start working with the feeding clinic there.

Also, we've had to stop Evan's continuous feedings to do the procedure and now it's been 11 hours since we gave him anything to eat. They only needed to wait 3 hours to empty his stomach. We've known for 24 hours we'd be doing the procedure. And there's no time frame in sight for someone from PICU or NICU and radiology to do the procedure. AAarrgghhh!! No one seems to care that this is the second time my child has gone 12 hours without food unnecessarily. We keep pointing it out and everyone says it's on its way but they don't know when. Ggggrrrrr!!!!!!!

Oh and the security guard came in to our room tell my husband he has to wear shoes at all times or the hospital non-slip socks. WTF? At least she's doing her job.

The Battle Against Reflux

We are still in the hospital as of Monday. I had thought we'd be discharged with NG tubes and go home trying to convince the boys to eat the nasty Elecare but Evan has thrown up every feed since the Endoscopy and Erythromicin on Thursday. His body is not digesting the Elecare and the Specialists have no idea why. We are doubling is Erythromicin and adding feeds every three hours and have added an IV to hydrate him because his urine output dipped quite low this weekend. Cameron is also having similar issues but not to the same dire degree as his brother and so doesn't have the IV. We just got back from xray to see if the NG tubes are placed correctly and are waiting on the formula room to mix a 30 calorie Similac formula, even though the GI docs think that there is a milk protein allergy. The boys do not demonstrate any of the symptoms of milk protein allergy but even on the continuous pumped 30 calorie Elecare they have reflux and aren't gaining weight. The only reason I was able to get them to give us something other than Elecare (trust me, I've begged, pleaded and threatened) was that the Dietitian also agrees with me and has backed me up on my plea to try other formulas. I have requested Neocate but they don't carry it at this hospital and will order it if we can't get them to eat the Similac and don't grow on the Similac bolas feedings. This means we will be here for a couple more days at least.

We are still of the mind set that we can get these kids to eat by mouth if only they'd find a formula that doesn't taste like the bottom of a sixth grader's gym locker with orange and vanilla powdered flavoring. We know that if we take them home on NG tubes this time will be limited, maybe only three to six weeks before the boys experience too much damage and then we will have to go to the G tube. But first we have to get them to eat by mouth, second we have to get them to stop vomiting. Everyone agrees they are suffering from severe reflux,and in all other ways and instances they are very happy babies who don't look sick. Yet. It's a matter of time until they do start to look sick and I don't want to wait until they are so sick that they are in serious danger.

Evan is just 12lbs and is now losing weight, and Cameron is under 14lbs and holding steady at 10 months old.

We are all exhausted. The internet is spotty at best and just to log on to make this post took me half an hour of trying. We wash and re-wash our clothes and borrow toy after toy from Child Life Services as the kids get bored and fussy easily. But they are sleeping through the night, with the exception of the during-continuous pump feeding vomit sessions. Evan vomits every four hours at the end of the feed or just before the end, and Cameron vomits after feedings. It means that Drew and I sleep light as feathers on the narrow hard drafty benches so we can hear them when they start to gag and cough in their sleep. Also the feeding pumps are always beeping with errors and that requires a trip to the nurses station. Our room stinks of vomit and Elecare. Yum!

And on another sad note, there are babies in rooms all around us that don't have parents to stay with them. Little teeny tiny babies that still sound like kittens mewing for love and attention. I was told 90% of the babies on our floor are left alone here during the day because their parents can't take leave. It just breaks my heart to hear them crying all day and all night. I know I can't, but I keep wishing that while my guys are sleeping that I could just go and pick one up to make it feel a little loved. I thank all the powers that be and my wonderful husband that I am able to be here with my boys 24/7. Even my husband can't bear to leave. So sad.

I will post more when I can. Thanks ladies!