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Monday, May 25, 2009

Splish Splash!

It has been a wonderful Memorial Day Weekend.

Thursday we had a most excellent trip to Story Time at the library. The boys had a great time and we can't wait to go again every Thursday. Evan was so focused and enthralled by the librarian that he barely noticed all the other babies around him. Cameron was too shy to let go of me and turn to face the room so he watched over his shoulder with a big smile on his face. Their favorite part is when everyone sings together and claps their hands.

Friday we got to hang out with Daddy who came home early from work and went for a long walk with the dogs. Saturday we were really off our naps but decided to make a trip to Toys R Us for our new Super Yard and then a stroll around the mall. Sunday we played in our very own lagoon for the first time. We dressed them up in their patriotic swim shorts, rash shirts and sun hats and dipped their little toes in the chilly water. THEY LOVED IT! Drying off in a sun warmed towel was fun too. Then the best part of the day was that got a surprise visit from our favorite cousins Tim and Lucy and Uncle Chris. We had such a great time hanging out, going to the park, letting the dogs run free off leash in the tennis courts and watching Tim and Lucy ride around on their new bikes. That night the boys slept through the night without so much as a peep, though they still woke up at 4am.

And today is Uncle Mike's birthday so we drove up to Baltiomre and had a birthday dinner at Red Robbin. The boys loved sitting in the big boy highchairs and really loved when everyone sang Happy Birthday to Uncle Mike.

Our only down side to this weekend is that today Evan has started throwing up bile about every two to three hours again, and this time I'm pretty sure the tube is in the proper place. I don't think it's a virus because he's not throwing up any formula (we've been feeding him through the gastric tube for two weeks now) and he's throwing up large amounts of very dark strong smelling green bile. I guess a virus is possible since its been a week since were last in the ER and he could have picked something up there but it seems unlikely because of the lack of formula. It's like the bile is bypassing the formula on it's way up, and that makes no sense at all.

In any case here are some of the pictures from this week.





























Saturday, May 23, 2009

Featured Favorite Blog: Entertaining Kids on the Go!

So many of us have to take our kids to places and appointments where there is often a lot of hurry up and wait. A good friend of mine, an official representative of the March of Dimes and Preemie Mom has started another wonderful blog that I'm sure will take off and be a huge help to everyone looking for ways to travel and keep kids occupied. Here's the link to Entertaining Kids on the Go:

http://www.entertainingkidsonthego.blogspot.com/

Please feel free to send her your suggestions and ideas on how you keep your little ones entertained while on the go, or at least while you're sitting around waiting for them to call your name.

Additionally if you are a parent of a preemie, or looking for ways to help your child with different kinds of development skills and issues you really should check out her other blog Parenting in the NICU and Beyond. And you don't have to be a parent of a preemie to enjoy and utilize her suggestions, they are great for all kids of different ages and stages.

http://preemieparenting.blogspot.com/


Enjoy!

Monday, May 18, 2009

Up your nose with a rubber hose!



Our GI doctor is out of the office this week home sick herself so we went back to the ER with Cameron at 11am today and argued with the ER docs and the GI team about what was wrong with Cam to make him vomit so much. To recap: After getting home from the hospital on Saturday night he'd started vomiting tons of really dark green bile every hour and a half and had horrible diarrhea all night long. About 10 poopie diarrhea diapers in a row, about one every two hours. And he was still vomiting lots of dark green bile in his sleep. During today's visit to the ER the GI team said they thought,without running any tests, that the tube was probably fine and that he had a stomach virus but they wanted to stick him with IV hydration fluids and admit him for over night monitoring. At $2,000 a night for which we pay 10% we said not unless they can prove that he needs to stay.

We argued that things only got worse on Saturday when the ER team refused to correct the placement of the tube as we had demanded on Saturday, and today we demanded that the Interventional Radiology surgical team check placement since they were the ones who put it in originally.

WE WERE RIGHT AGAIN!

Since 5:30pm when they finally pulled the tube back to 3cm (from 10cm which is 7cm too far into his belly pushing on his pylorus sphincter causing all of his discomfort) to now at 10pm he has not vomited once!

Booyah! Up the doctor's nose with a rubber hose!

Tomorrow after our first feeding clinic session I am demanding copies of the boys medical files so I can give them to the next GI doctor.

Saturday, May 16, 2009

Another shit-atstic trip to U of MD Hosptial

During the course of this last week (since Sunday) the boys have been fed through the G port of their feeding tube into their stomachs to see how they would tolerate it. They were doing okay, some vomiting, but then over course of the week it was getting worse. Especially for Cameron. Then as of Thursday night he started vomiting much more freqently at least every four hours. I talked to the GI nurse who said that the GI doctor was out of the office this week and would call me back on Monday. I switched him back to the feedings by the J tube only and thought this should solve our problem. But it didn't. And overnight on Friday into Saturday he vomited copious amounts in his sleep every two hours.

By morning Cameron had vomited in his sleep every hour and a half. Naturally we suspected the tube has slipped again like three weeks ago and needs to be repositioned. Since our GI blows mega chunks and isn't reachable after business hours, and it's now Saturday, and the Radiology dept at the hospital has a skeleton crew, we went to the ER (like the GI told us to do last time) and have them get us in with Radiology fast so the Attending Dr could make the adjustment. So we spent all day in the ER at U of MD hospital (got there at 11:30am) where the boys had the GJ tubes put in. There were no other patients in any of the Peds ER rooms that we could see so we got some quick admission. We explained everything to the nurse, another nurse, another nurse, a resident, the Attending, and even the world's most pompous, cocky, greasy looking know it all on-duty Peds Surgeon and they all agreed that the tube is probably in too far and to take an xray with the contrast dye to check the placement and make the fix.

I had told them all that the GJ tube was supposed to be in between 2cm and 3cm and today it was at 6cm. When I had tried to pull the tube out myself I got it to 5cm and then got a lot of resistance and Cameron started crying in pain/discomfort so I stopped. (I'm a friggin' Human Resources person, not a medical professional. You want to recruit someone or tips on FMLA or new employee orientation I'm your girl. You want medical know how and hutzpah go find farking Meredith Grey and get her skinny ass down here pronto!)

When the Peds Surgeon looked at the tube during his evaluation he said "Oh, there's no such thing as the tube going in too far." I corrected him and pointed out that three weeks ago that was EXACTLY what had happened to both my babies. The tube is in way to far pushing on the sphincter to the intestines and the stomach fluids can't pass so they get thrown up over and over and over which will cause dehydration. His response was to pull the tube out to about 4cm right then but wanted to see the xrays before doing more. And he said he had a little trick that works like a charm on situations like this and he'd do that before we left.

They didn't have the supplies they needed to put the dye in Cameron's feeding tube, but luckily I always carry spare parts and had two for the hospital to use. This always seems to be the case, this hospital not having the basic supplies needed on hand. This is the 2nd time this has happened to us, and the resident even said that they expect the parents to provide the adapters to the feeding tube ports they install in their patients! I should have known this would happen.

Four hours and two xrays later, and still not getting any visit from someone in the Peds GI group, the doctors all said the tube is placed at 8cm and the dye is flowing fine through the colon and so he's getting the nutrients he needs and they won't pull the tube out because it looks fine to them. Call the GI on Monday. *sigh* Great. Medicine at it's finest. Leave my baby to throw up every hour and a half, and upon arriving at home he's had 6 diarrhea diapers over the last four hours. If any of these medical professionals had family members puking their guts up every hour they'd find someone to do something about the quality of their lives. Is that too much for me to demand for my boys?

Before leaving I did tell the doctors that I thought they were wrong about their diagnosis, and that they were likely to see us back in there by Monday at the latest, having suffered another 24 hours of this hell, so we could go through all of this all over again. At no point did they have a GI doctor come talk to us. Oh, and the solution the Peds Surgeon had (and made the resident do because he was too busy to bother coming to see us again after I had corrected him) was to take a suture thread and tie it around the flange at the point where the tube enters the body. We had to take that stupid thing off because it worked to damn well and we couldn't get any of Cam's Prevacid meds through because it was too tight.

Cameron hasn't thrown up since about 7pm but it was in his sleep. It's now 10:17pm and I just went and pulled the tube out on my own to 5cm while Cameron was asleep. He woke up and pushed my hand away and cried a bit in discomfort and started to gag some. After rocking him a bit he settled down and went back to sleep without vomiting. He's slept through all 6 poopie diaper changes, even the one where he pooped up us back and I had to change his pajamas. If we have another night like last night with vomit every hour and a half I'm taking him back to the ER, but this time I'm bringing my big stick with the rusty nails.

I hate hospitals. I really hate this hospital. I hate these feeding tubes. And most of all I hate how brainless all the doctors we've been encountering this year are. Sorry excuse for a medical system.

Wednesday, May 13, 2009

12 month NICU follow up


So we had our 12mos (actually the boys are 13.5mos) NICU follow up. The last one was in January just before we went into the hospital and had the GJ feeding tubes put in. Since then they have made significant improvements. But not enough. We met with the Developmental Physician who says that their reflexes are fine, their tone is getting much better, but they are way way way way behind in their gross motor skills and oral and a little bit behind on some fine motor skills. No surprise, we knew this. But they are advising we see a neurologist and have an MRI done of their brains and blood work to determine or rule out any fragile X chromosomal syndrome disorders and karyotypes. Their stranger danger is so bad that they think this may be the clue, and everything else to do with their reflux, the GJ tubes has really confounded the situation and it makes their developmental improvements very slow. But all in all they show now other signs explaining why they aren't doing leaps and bounds more developmentally.

The Neurologist would be looking at the brain to determine what the gray matter and white matter are doing, any other issues that might prevent development and maybe even aggravating the reflux and spontaneous vomiting (though nothing near as bad as Sweater's boy Jaxon).

I'm so depressed. This is exactly the the kind of thing that I kept telling myself when I was pregnant and hormonal and already scared about having preemie twins that was an irrational fear and that these babies would have it rough in the beginning but it would all work out in the end. And naturally having read Sweater's post on her son Jax really makes me even more depressed. I know, I know we haven't had a diagnosis of anything yet, but it does put the worst thoughts in your head. And it is the NICU follow up doctors job to present the worst of it all to us so we have a place to grow from. And our PT and OT team from the State Infants and Toddlers program think that they are doing much better on the gross motor skills such that they will catch up eventually and are already talking about needing to scale back or discontinue the PT. We'll see what happens once the NICU follow up doctor sends the report to increase PT and OT but I think per the state's guidelines we're already maxed on our services. But the medical team still want to find out why things are falling in to place like they should.

We didn't even get to talk to them about why the boys aren't sleeping through the night and other things I can do to help that improve since they agreed crying it out isn't an option with the vomiting issue.

At least this time the NICU follow up doctor was nice and very understanding and went out of her way to make me feel like they know I'm doing everything I can for the boys, so my big stick with rusty nails to beat the doctors up with stayed tucked in the stroller basket. We start feeding clinic next Tuesday and Chiropractor maybe in two weeks. Basically we have no free time to have play dates and do fun things like normal kids.

Monday, May 11, 2009

Please Vote for our Little Angels!

The boys were born at Anne Arundel Medical Center (AAMC) and spent the first sixty-eight days of life in the Level III NICU there. In order to help maintain the exceptional facilities and staff there we are participating in the 2010 Little Angels calendar contest. Each photo is of children who were once residents of the NICU at AAMC. There are only 13 spots on the calendar and over 80 families volunteered to participate. In order to vote for us, or any other Little Angel, we are requesting a donation of $1.00 per vote for Cameron and Evan so that they get to appear in the 2010 Little Angels calendar. The more money you donate the more votes we get. The photo with the highest number of votes gets the cover of the calendar, the next highest gets January's picture, and so on.

You will also be able to purchase the calendar once it is published. Last year the calendar raised over $10,000.00 for the NICU. The marvel of modern medicine is that so many babies are able to live and lead happy and healthy lives thanks to the facilities and staff at hospitals like Anne Arundel Medical Center NICU. It's not just for premature babies, but for full term newborns who experience complications at birth and after.

Please vote for Cameron and Evan. Help us get on the calendar, and more importantly help us raise money for a wonderful establishment and staff that helped save the lives of Cameron and Evan.

To vote please follow these instructions:


a. click here to get to the website
http://www.visualconceptsltd.com/sessions.html
b.The session ID/password is littleangel_vote



c. click on "Go to Proofs"



d. click on one of the votes amount



e. select image #083 (it's on the last page of proof images)



f. add to shopping Cart



g. Check Out



h.
Fill out your personal information and credit card information



i. Click on Place Order


You will receive a copy of your transaction for your records and all donations are tax deductable.

REMEMBER: THE MOST VOTES/MONEY RAISED WILL BE FEATURED ON THE COVER PAGE WHICH WILL BE USED IN THE MARKETING CAMPAIGNS! NO NAMES OF PARTICIPATES WILL BE USED AT ANY TIME. VOTING ENDS MAY 25 2009

Our goal is to print up 1000 calendars and sell all of them. We cannot, however, do this without your help! Please spread the word and if we are successful and sell all of them and we can raise $13,000! And, that is not counting the votes!

Updates will be made via the photographer's personal blog Visual Concepts Photography.

VOTING ENDS MAY 25 2009

Sunday, May 10, 2009

My Happy Mothers Day

Last Mothers Day was my very first, and I spent it sitting alone in the NICU with my boys. The nurses gave me a card from the boys with their footprints in it and a candle each. It was so sweet, but still it wasn't the way I had ever thought of my first Mothers Day happy to have it as I was. But this year is way better.

This has been such a beautiful weekend that I never want it to end. The clouds have parted after almost six days of heavy rain and we've had breezy, windy, very warm to cool sunny days since. And it's been a busy weekend. Friday we dropped off some baby clothes and a baby shower gift with friends we haven't seen in too long of a time, so that they could pass them on to our good friends K&M in PA. We're so sorry we're missing the celebration of their baby boy-to-be but our thoughts and wishes are with them. Then Saturday we visited with Mommom and Poppop and had a great time. It was so nice to sit and chat and let the boys get to know them a little bit more. We didn't get to see our cousins, and missed seeing them but maybe next time.

When we got home from Mommom and Poppop's there was a big wind storm that blew through and almost wrecked our large gazeebo against the side of the house. It nearly took out our new family of little baby birds that have nested on the side of the house where our clothes line is attached. Luckily Momma Bird and her three hungry little baby birds are all okay. But it was like something out of the Wizard of Oz. I was kneeling over Evan on the bathroom floor having just dressed him after a bath and looked up out the open window to see this huge gazebo canopy flying through the air and coming straight at us. Nothing is broken, the fabric a little torn, and our patio lights need to be restrung anyway, but it was a scary experience from my angle and I'm sure from Momma Bird's angle.

That night we increased Evan's feeding pump volume an additional two milliliters per hour for a total of 39mls/hr. He slept pretty well except for the three instances where he started heaving in his sleep. This is the first time this has happened since we had the tubes adjusted over a week and a half ago. Since I still have ineradicably strong Mom-dar that never turns off I naturally don't sleep and heard him start his heaving and was able to get to him before anything bad happened. Each time he had a heaving attack in his sleep he did not throw up any fluids which is a good thing.

Cameron is now sleeping pretty solidly through to 4am most nights, with the occasional fussiness for a paci or that he can't get comfortable because it's warm on the second floor of our house. Evan is almost there to sleeping solidly like Cameron, but still wakes up from time to time with screaming fits for his paci and some cuddling. But then once we've got them to sleep solidly through to 4am the problem is how to get them to sleep past 4am to 6am? For their entire lives we've always had to get them up at 5:30am for medicine before Daddy had to leave for work. It's gradually moved to 5am, 4:30am, now 4am and sometimes Evan is up at 3am chatting away ready to play. *sigh*

Today, Sunday, we had another even more beautiful day and a wonderful surprise. Our GI had told us to try hooking their feeding pumps up to their G tube port to see how they tolerated the formula in their stomachs. We have been skeptical that this would work, in fact we told her that the boys still often vomited about two times a day minimum, just not as badly as it had been before the tubes were adjusted. We were thinking that their stomachs have shrunk a fair bit and they would be heaving and vomiting like they used to, that they would be in lots of pain from the constant reflux. If that was the case we would put them back to feeding them through the intestines and try again another time.

Today we took them off their feeding pump at 9am as usual for their four hour break. They ate stage two macaroni and cheese, blueberries and their latest craving of water. Yes, they love love love water. We spoon it in like soup and they are crazy for it. (Thanks to Sweater and her OT's suggestions!!) And because of doing this the other day I was drinking a glass of water and Evan pulled the glass towards him, opened his mouth and put the rim of the glass in. I let some water touch his lips and he got very excited. He would not stop and would not let me drink the water myself. I let him try several times and really all that happens is the water pours in his mouth and falls right back out down the front of his shirt. But the bottom line here is that he WANTS to put something to eat or drink in his mouth!

In feeding them their spoonfuls of water today I decided to see what they would do if I presented them with 4oz bottles with a little water in them. The boys have not had a bottle presented to them in over three months because they would gag, heave, vomit, scream, kick, arch their backs and cry at the mere sight of the bottle. If you touched the nipple to their lips it was an automatic gag reflex and they would vomit everything they had in their stomachs.

Well lo and behold, the bottles were a big hit. They picked them up, shook them about like rattles, turned them upside down oblivious to the water dripping onto their laps, and then the miracle happened....

Cameron put the bottle in his mouth and started to try to drink the water! He couldn't get it up high enough (he'd never wanted to hold the bottle before so he has no idea that he needs to hold it up high) so my mother held it at the right angle and Cameron chugged that bottle of water like it was BEER! I got so excited that I grabbed the can of Good Start and poured a scoop of formula in to his bottle and shook it up. I gave him back the bottle and he started drinking it too! It didn't phase him at all to have that bottle in his mouth and he hadn't forgotten at all how to suck and swallow and breathe!

Here's a quick video I caught just before he'd decided he'd had enough.

video

Poor Evan had just had a bad burp which caused a gag reflex and he threw up all his lunch (he ate barely and ounce but it's something) and so he was not in a good mood after that to do more than shake his bottle around. If I put the bottle to his lips he got very upset and started to gag again. That's okay. He wasn't freaked out by the sight of the bottle anymore so I'm really excited and plan on giving him another bottle of formula every day.

After lunch we plugged the feeding pumps into their G tube ports so the formula would slowly pump into their stomachs. And then as planned we went to a couple of different garden nurseries to search for hanging flowers and a couple of trees to plant. It was beautiful warm but not hot, windy enough to be cooling, and super pretty out. Then we drove around for a while to let the boys nap in the car. We grilled out on the deck, played with the boys on the swing, and then put them to bed. It is now 8pm and neither baby has heaved or vomited because of the formula continuously, and slowly, pumping into their stomachs.

The true test will be over night, especially for Evan. If we continue to have this work through the week, by next week we will go in to our GI doctor's office and she will take out the GJ tubes and put in standard G tubes with a low profile McKey Button port.

I had thought all hope for bottles and sippy cups was lost. That we had a much harder road to eating solids. All the therapists said that we would never be able to use normal sippy cups and we could pack up our bottles all together. They had said not to expect the boys to eat stage two solids for a long, long time.
But today my hope is renewed. It's been a wonderful Mothers Day.

Some pictures from this week:

Daddy teaching Evan how to play World of War Craft


Evan chillin' with Granny Cathy on the swing


Cameron laughing at Daddy


Thank you K for the awesome outfits! We now fit and love them all!


Monday, May 04, 2009

Pictures!

As promised I'm posting pictures. I can't believe I haven't posted any since the beginning of April! If you have any doubts about how well feeding your baby through a feeding tube can work, compare the pictures of Cameron in the beginning to the last few at the end. Tonight we weighed him and he's now 21lbs and Evan is 17.5lbs. Woohoo!

Without further ado...





In this pic the boys are at Mom-mom & Pop-pop's for Easter. The bags next to each of them are the farrell bags which work by gravity allowing the fluids in the stomach to flow into a contained bag with an air vent to continuously vent their stomachs to relieve the pressure there. Don't worry they are spill proof so they can grab them and wave the bag around and nothing spills out.













Best $5 ever spent on this table! It's what gets them to stand up (with a little help from Daddy).




When I get tired Daddy works well as a seat.


The boys have discovered the joys of a frozen teether! Now they are trying to put all kinds of things in their mouths.




Here's a quick shot of the two teeth coming in on Cameron so far.


























And the piece de resistance! Evan eating from a spoon with Daddy! Check out the smile in the end.



video

Saturday, May 02, 2009

Feeling a bit green

I knew these days were coming. It's no surprise. You know the saying, "Time waits for no one" and certainly not for me. At the end of this week all three of my good friends, and one thankfully already has, will have surpassed me in baking their babies past 28 weeks 6 days of gestation.

All three friends are due one week after the other in a row in July. Each week that they respectively hit 28 weeks it is a bitter sweet thing for me that I can not stop myself from thinking about. It hits me out of nowhere at the most random moments. I get all sad and weepy and depressed and happy and thrilled at the same time, kind of manic. And then it passes because I've got to move on (and like I said neither time nor twins wait for me). And the next week when another girl hits their 28 weeks the count down of weepyness starts all over again. I keep thinking "In six more days I would have my children, In three days I would become a parent and I was so no where near ready, by tomorrow I would be wheeled from the recovery room of the OR and into the NICU to see my boys for the first time and I couldn't even touch them, etc." And then on the day they hit 29 weeks I'm so happy but so envious. Jealous, down right green even. And then the day after that I'm past it, sort of. Because I don't think I'll ever be able to get truly past it.

I guess as a mother of mico-preemies, and having never had a healthy full term pregnancy (and never going to have one either) you never really get over seeing these happy healthy uncomfortable women. Maybe it's mean of me, and I'm sorry if it is because it has nothing to do with them, but very time I hear or see a hugely pregnant woman say they are uncomfortable, move in aching discomfort I can't help myself but think "How wonderful that must feel to be so uncomfortable. What I wouldn't give to be uncomfortable like that. Good. Good for them for being uncomfortable, the way it should be."

So keep baking those babies girls! Despite what I say above, I'm still ecstatic for you and am so happy things are going so well for everyone. And for Kelly, I am sorry. I had not been able to grasp the thought of it all like this before, probably because I'm always so wrapped up in my weird life, but now I think I have an inkling of what you are going through. Just an inkling because I'm sure the scope and scariness of it for you is bigger than I realize. You will get there and one day I will be reacting the same way for you too. You're sick of hearing me saying it, but like the secret says, positive thoughts beget positive outcomes. I'm going to stay positive for you, because I love you.

Whew, where are my tissues? Okay, I'm done.

It occurs to me now that I haven't posted any pictures of the boys in a while. They are feeling so much better and eating so much better and working on sleeping better, so things are looking good right now. No one has vomited, either expectedly or unexpectedly in two days. The washing machine is getting a break. I promise my next post will be full of pictures and happier things.