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Friday, January 30, 2009

Thank you - Update & 10 Months Old

Today is Evan and Cameron's 10 month old (7.5 month adjusted) birthday.

And what a great birthday gift for the boy to have all of you thinking of us. Thank you to Stephanie and everyone who has posted their well wishes for us! We are so thankful and incredibly touched by the outpouring of love and support from everyone. We love hearing your stories and reading your advice, keep it coming! It has helped a great deal. Even my husband is floored by all of this and is amazed again and again by this awesome community of ladies who keep a look out for us.

As of right now the boys have had a modified barium and swallow test as well as an upper GI EGD (endoscopy)biopsy to determine the severity of their silent reflux and if they have allergies to the milk proteins. While it's still too early for the GI EGD to show the results we are certain they have severe GERD up to the top of the throat with allergies but anatomically they are normal and do not need surgery at this time. They do have an NG tube because they refuse to eat (Evan especially, though we have convinced Cameron to take a few swigs of a bottle post EGD procedure.) They are sleeping better because they have full tummies from the NG tubes but they are fussy because of the tubes and the IV they had to put in to do the EGD. Cam has kept his feeds down but Evan is throwing up a bit still.

The doctors agree with us that for now we will not do the G tube as we want to see how they fare with dropping the Zantac and adding Erythromicin (sp?) for motility and trying to convince them to eat the nasty Elecare formula. If we can't get them to eat that then we will try some other formulas. If we do end up doing the G tube it will be because we are spinning our wheels more than we have been trying to get the boys to eat, but they feel the G tube is a minimum a 6 month to a year commitment, hence our hesitation to proceed with it. They want to monitor how well the boys will eat by mouth three times at day, which at the moment is not at all, and continuous feed by NG tube at night, and hopefully we will get the Erythromicin and Prevacid to work to allow them to eat.

The thing about all of this is that every parent struggles with making the decisions to do or not do something in hopes that it helps their child feel better and grow better. And after a year of constant worry and anxiety and sleep deprivation you really get out of sorts with worry. There is no right or wrong answer, and isn't that the kick in the ass? And it's even more stressful when you have more than one baby because you can not, no matter how hard you try, be in two places at once and listed to three different conversations with screaming babies. I am so thankful to have an awesome husband who has been by my side every step.

I will continue to post updates, but the internet connectivity here is spotty. Eventually I will get I around to posting the details of our stay and tell you all the oh so not wonderful things about this place and the psycho lady who keeps trying to come into our room. Again, to everyone, we just can't say it enough. Thank you. Thank you. Thank you.

Friday, January 23, 2009

Little Vampires with Mommy-itis are Admitted to the Hosptial


We took the boys to their 3 week follow up GI appointment today. It was their first outing in the snow. Things aren't going well for them weight wise. I knew this would happen but when the doctor said we needed to be admitted for Failure to Thrive I still cried. I did get an apology from her for wasting our time, the boys time more specifically, and she said she was never notified by her staff that I had called once a weeks since our first appointment.

Evan did manage to barely gain a pound in three weeks on the higher 30 cal formula, but it's not at all what they wanted to see. He's now 12lbs 4oz. And Cameron has gained .1oz in the three weeks, so that's even worse. Cam still weighs 13lbs 14oz. They are 10months old and 7.5 months adjusted.

They tried to get us admitted this afternoon/night ot U of MD hospital which is about 45 min away, but they don't have any beds available at the moment. Since the guys are barely maintaining their weights we're not an emergency case but the situation is urgent, as I had been trying to tell them over and over.

We started giving them Ellecare formula with the vanilla flavoring tonight but they hated it and immediately started gagging, so we're mixing it with their old formula for now. If we can get them to continue to eat it at least insurance will cover the cost because this stuff is really expensive. We are changing their Prevacid from one 15mlg solutab at night and a half solutab during the day to one 15mlg solutab during the day and 1.5mls of Zantac at night. This is really high dosages but the GI docs aren't sure why the boys have stopped eating. We actually had to drop two feeds (the 1am feed and the 5am feed) because they just fought us the whole time, and the 9 am feed is not much better.

We'll hopefully get admitted tomorrow for a modified barium test and OT and Speech Therapy evaluations. After all the blood work and the Upper GI exam they will determine if we need surgery for a G tube or something else. Either way they feel there is some kind of allergy going on. I'm fairly certain by the way they were talking the Dr's think we need to have the G tube for both boys, and while I'm prepared for this, I'm still freaked out and depressed all the more.

So if your little one's have been admitted for FTT, had a modified barium test done, is on Ellecare and hates it, and has had a G tube surgery please tell me what I need to know. What questions do I need to ask? What things can I do to care for my boys while we're in the hospital for 3 or 4+ days?

Despite the FTT diagnosis, the boys have been really animated this week. Not just with all of their PT developments but with their personalities too. This week Cameron started babbling. He says "Diediediedie", "Yieyieyie", and is saying these sounds with varying degrees of volume and vehemence all the time. Evan is mastering the art of blowing raspberries and cooing and singing in a very distinctive little boy voice. He watches Cameron when he is babbling and I'm certain any day now they will be shouting "Yieyieyie" in unison.

(Note: I had drafted this next part of my post before today's GO appointment I described above. It just goes to show that you really need to trust your mother's instinct and break out the ass kicking boots before it's too late!)

The reflux has not gotten better though we did make another change since increasing their formula to 30calories per ounce. After a few repeat phone calls begging the GI to see us sooner than next weeks appointment because the boys have been vomiting more than ever and because their eating avoidance is worse and it now takes two hours to convince them to eat, I finally got the head nurse to tell me to increase the Prevacid dosage from one half of a 15mlg pill twice a day to one half a 15mlg pill in the morning and a full 15mlg pill in the evening. I'm pissed about this because they could have made this change when I begged for help at our initial appointment and told them that they would vomit more and scream more because of the thicker formula. At the time they told us we'd just have to see what would happen, that a thicker formula shouldn't cause them to vomit more (Ha! Yeah, right!) and thus they would not have any more paid from the reflux just because it was thicker (again, yeah right!). I plan on letting them know that I will not tolerate getting my chain yanked around like this anymore.

I'm so fed up with GI's and doctors not paying attention to us. I still haven't gotten a call back from our pediatrician's office about the boys' allergic reactions to their Synagis RSV shot. I am reporting it to the CDC and the FDA whether or not they call me, but I am really pissed that they don't seem more concerned. And the icing on the cake is that I got a call from my OB/GYN's letting me know that my OB who delivered the boys has moved to Tennessee suddenly and that I would need to start seeing someone else in the practice. I don't mind seeing someone else, but I feel very caught off guard that I won't be seeing the doctor that did a procedure on me that has caused me to decide never to have more children. It just makes me feel like I'm thrown by the wayside yet again.

We've had to drop a feeding in the middle of the night and another one at 5am because they just refuse to eat at that hour anymore. This means they go about 9 to 12 hours without eating. And frankly I don't think I can keep up with a four hour feeding schedule when it takes two hours to feed one baby any longer either. Even at 7 months old most kids have been sleeping through the night for months. I know I'm doing it for their weight gain and that they are still the size of most 5month olds at twice the age, but they just refuse to eat the 1am and the 5am bottle now. They just sit there playing and cooing and talking until they're exhausted and fall back asleep. When you put the bottle to their face they scream, arch their backs, crane their necks at odd angle to escape. So why am I killing myself trying to force it into them? I'm hoping that if I can get them to sleep from 10pm to 5am they will start eating better in the mornings. So far it's just okay, and I'm getting up every 20 minutes to replug pacifiers but they still don't eat enough at 5am though more than they were before.

Two other new developments are that recently Cameron has started to grab my shirt or the skin on my neck and pull him self so that he is open mouthed and gumming my neck. I have no idea why he's doing this but I think maybe he's trying to kiss me. It looks more like he's trying to bite me. And today Evan started doing something almost the same but with much less force and control since he's got weaker muscle tone. But it's cute all the same. The second funny development is that if I leave Cameron's sight, or if he can hear me but not see me he starts to babble or cry in distress, and then stops just as I come back into his view. It seems that separation anxiety or what I like to call Mommy-itis has kicked in. Evan is not as impacted yet, but monkey see monkey do and I'm sure he'll be behaving the same way soon.

We can't stop laughing and smiling at each other every time we hear them start talking, and they are slowly just starting to grow out of their 3-6month sizes. It seems like this week the finally seem like real little boys and not just these lumps of babies we're trying to fatten up. They are starting to have distinct personalities.


Also, as a side non-baby-related note, I decided to have the minivan repaired from the rear ending fender bender we had on the day of our first GI appointment but in leaving for the appointment the van wouldn't start again (it has a brand new battery from the last time this happened in December) and then while on the way to the auto body repair shop I lost all electric while driving twice. Then when the estimator tried to turn the van on to get the mileage it wouldn't start agian. Ironically we were named as recipients of an award settlement from a class action law suit with CarMax for selling cars without telling people the car had been a rental prior to sale. We are going to use the settlement, about $1450 to buy a new van. The one we have now is just cooked, and it's the third car in a row we've had have the same or similar electrical problems. Which color should I pick for my new Mom-mobile? Red, green, or blizzard white?

I don't know if this hospital will have WiFi for me to use my laptop so after tomorrow morning I may not be online much for about 3 or 4 days.

Wednesday, January 21, 2009

We have a roller and a self soother!


Today Cameron rolled from his belly to his back on four separate occasions without help!! He was in such a great mood and he smiled bigger and bigger each time he did it. He also demonstrated once the ability to reach one hand out and pick up a rattle and hold it up in the air in front of him. I couldn't be more proud!

Evan has demonstrated on several occasions this week that he is able to take his pacifier out of his mouth and put it back in. Now if I could only get him to reach around in the dark to find it and put it back in his mouth! He's also showing us that he's able to tolerate more and more tummy time, though it is much more difficult for him to do.

I am so happy about this new development. It's really made my day, my whole week. I guess when President Obama said that change was coming he meant it and Cameron and Evan were listening.

Saturday, January 17, 2009

Lovely Blog Award

A warm thanks to Dianna from Double Trouble Twins for sharing with me the Lovely Blog Award. I am flattered and honored.



I'm a firm believer in paying it forward. My blog has been a great outlet for me, and most of all I hope that it has been as helpful for my readers. I'm passing this on to a bunch of really awesome ladies who really deserve this award, as well as the award for Mom of the Year.

Blue Moon Mama - J. Thank you for starting me on this blogging addiction. It's a part of me now and I love it. I owe it all to you.

Parenting In The NICU - Debbie, thank you for all of your support and advice on everything from having a micro preemie, oxygen, development, reflux, and a shoulder to cry on. You gave me the idea to try to post things on my blog that I hope will help others going through similar situations. Your blog is so well written and has so much information that I use it as a reference guide for just about everything. You absolutely deserve this award.

Amazing Instant & Journey of Three - Again, thank you for everything. And for always checking on me.

Jaxon & Brady's Journey

Our Little Ones

Baby On Bored

Midnight Madness

A Mother's Unconditional Love

The Compton Corner


Fertile Hope


There are so many of you that I want to share this award with, please forgive me for only listing just a few. There are just so many things I want to say to thank each of you. Most importantly I want to encourage each of you to be true to your selves, your feelings and your experiences and to continue being strong and open about everything. There are people out there reading your blogs and finding information, comfort and solidarity. Keep pouring your hearts out!

Wednesday, January 14, 2009

Breakthroughs and Fallbacks


We have had a breakthrough on our Physical Therapy and Occupational Therapy sessions these last two weeks. Until last week I had been requesting a different PT person because for the last six months our current PT person, while very nice and competent, seems to freak the boys out on sight. There have been times where she would come in to the room calm and quiet, not even looked at them and they would melt down in hysterics. I always try my hardest to make sure we've fed them early enough and that they get a little nap right up to the time of their workout session in hopes that those issues are resolved before she gets here and they are in a good mood. Until last week I could count the number of sessions that went just okay and at least one baby might have worked out with her for 5 minutes before screaming bloody murder. Usually for our "good" sessions she would tell me what to do with the baby and I would try to do it for her.

Then last week the boys were fed and napping for about an hour before she got here and I brought them down and we just chatted for a few minutes not even acknowledging their presence. Both boys were all smiles and the PT was able to do a full hour and a half work out with both of them. I never had to hold anyone, never had to console or pop a paci in a mouth. We were so elated we hugged at the end of the session. But I didn't post about it because I didn't want to jinx anything.

Today we had our 6 month post-nicu Early Intervention re-evaluation and there were four people in the house with us. The PT and the OT were there, as well as our service coordinator and the new program director, both of whom we've never met before. The boys had eaten terribly this morning and napped even worse, so we started off with some tears and lots of concerned furrowed little eyebrows, but oddly enough Cameron let the PT hold him and was even tired enough that he rested his head on her shoulder and laid snuggling in her arms for most of the visit. He wouldn't let her work on his fitness however, he just wanted her to hold him. This is a huge first! And Evan was working today's session with the OT who is a lovely Indian woman with a heavy accent who normally scares him. But today, after much more whining and fussing he calmed right down and let her do things with him that even I have not been able to do for weeks and weeks. Both boys let the OT put a finger brush in their mouths and then feed them applesauce which they absolutely loved. They even flirted with sweet smiles to the service coordinator and program director at the end of the visit. It was quite a breakthrough day for them!

And they have also been tolerating tummy time a whole lot more these last two weeks. Truly it has been like a light switch as far as their physical tolerance. Something that makes this extra sweet is that the boys are starting to really notice each other and as of yesterday they started making each other laugh. It's not the kind of laugh where one does something for the purpose of making the other laugh. Instead one baby will watch another baby doing something and just bust out laughing! We're trying to get it on video but it's tricky. These moments are so fleeting.

But our fallback has been a week and a half of horrible vomiting and eating aversions for both boys. It's worse than it's ever been and it's all because we thickened the formula to 30 calories. I had told the GI Dr that this would happen but she told us we had to do this for the next 3 weeks so we could see if their weight gain, or lack there of, was a metabolic issue or if it was just a reflux issue. It takes easily an hour to two hours to feed them one at a time, and poor Cameron will throw everything and the bile in his belly. You can feel his whole body convulsing. And afterward Cameron is still hungry so I have to feed him one more ounce at a time hoping we don't have a repeat performance. We are doing so much laundry, all our furniture has towels and blankets on it, change our clothes several times a day, sometimes right down to the underwear and socks.

One of the worst parts of having a preemie that many people don't realize is that the NICU Cha-Cha dance, that up and down roller coaster of events doesn't really end once you get them home. But it does end eventually. At least that's what everyone keeps promising me.

Tuesday, January 13, 2009

4:30am

This is the worst hour of my every day.

This is the hour where I feel saddest, the angriest, envious, bitter and alone. This is when I have the best and the worst feeds with the boys. It's when I reflect on everything that has happened to me and my boys since November 9th 2007 when we found out we were pregnant and thought it was just one baby. Even that first confirmation was tarnished with complications, at the time unexplained bleeding that turned out to be a second baby. Since that day I have not stopped worrying, being anxious, living one day at a time, one hour at a time. I have not slept more than 3 hours uninterrupted since January 2008 because when you are pregnant you have to pee often and then you stay awake uncomfortable and worrying. And my lack of uninterrupted blissful sleep is not because my poor husband and mother haven't tried to give me much needed rest. They try every weekend possible. It's because I can't turn this worry off. This pregnancy and parenthood has not been what I had hoped it would be. And the bad just keeps stacking.

When the boys were in the NICU and even for a few months after they were home, everyone remarked how well and upbeat and happy we were, that I was. And I was. But really I'm not. I have not enjoyed having babies. I'm so preoccupied with keeping up the constant bad stuff they are going through that I am struggling more and more and more with finding the good things and enjoying moments because those moments just aren't happening like they normally would. Even stupid little crap makes me up set, like the fact that I can't buy clothes on sale for next season for the boys because I don't know how big or little they will be. Or that by such and such time they will be able to do XYZ and we can go places because it will be three more months until that's actually possible. Or that eating anything isn't going to be painful, requiring coercion, a change of clothes per child and take less than two hours each child. Or feeling like I can be left alone with them for a whole day with no help,(I don't know how you do it Sweater!! You are Wonder Woman.)and feeling guilty because I often don't want the help that I have and need 24/7 for free, because I want to be like other Moms of Multiples who do it alone no problem. I am uncontrollably enraged when people even hint at joking about not wanting to be pregnant just one more day at full term because they don't want to be uncomfortable. Enraged at their selfish shortsightedness. But their baby would be fine, and I know it. I dwell on that one stupid thoughtless comment for days and days. So lame.

This is the worst hour of my day. I am angriest at me, at the doctors, everyone around me, at the world. I sit in tears struggling to feed one baby at a time thinking of all the things, some very mean and nasty things, I want to say to get the doctors to fix my boys so they can eat and grow and be happy. And I am so very sad and tired. At this hour of the day I am the worst version of me possible.

Sunday, January 11, 2009

Cameron & Evan on video

Cameron telling me he wants Daddy to come home early from work. Either that or something about the number 9, but I'm not sure... In any case, stupid me filmed this sideways and can't figure out how to change the layout, so for your viewing pleasure turn your monitor clockwise on its side. Hee hee.....

video

This is Evan and his new bear that Mommom Judy gave him at Christmas. He always reacts to this bear with this kind of enthusiasm.

video

Saturday, January 10, 2009

We are 1 in 100,000 times two!

Here's our history with the Synagis shot.

In November we got the first shot and Evan had an instant bad reaction where he was inconsolable and his right leg, then his left too, turned deep red and splotchy for about 30 min. It went away and neither the Dr or the two NP's could figure out why, nor had they heard of anyone ever having a bad reaction.

In December they gave the shot to the boys and there were no bad reactions this time, but two days later Evan comes down with RSV and Cameron with a cold we were certain would turn into RSV but thankfully didn't. The RSV symptoms went away in about a week with all the other cold symptoms lasting a second week.

In January, this past Tuesday, we get the next RSV shot and both boys have an instant bad reaction where the leg turned deep red and splotchy and Cameron had these odd red spots or like pin pricks on the bottoms of his feet that the Dr and the NP said looked almost like symptoms of foot and mouth disease, though he had no other signs of that illness. This all went away in about 30 min. Then on Thursday night Evan comes down with all the same symptoms of the RSV he had back in December and Cameron also has the same bad cold. WTF??

My DH went and re-read the side effects of the Synagis RSV shot and here's what it says:

"

Important Safety Information

Very rare cases ( <1 per 100,000 patients) of severe allergic reactions such as anaphylaxis and rare ( <1 per 1,000 patients) hypersensitivity reactions have been reported with Synagis. These rare reactions may occur when any dose of Synagis is given, not just the first one. Also, rare but serious side effects can occur, which may lead to unusual bruising and/or groups of pinpoint red spots found on the skin.

Other side effects with Synagis may include upper respiratory tract infection, ear infection, fever, and runny nose. In children born with heart problems, Synagis was associated with reports of low blood oxygen levels and abnormal heart rhythms. Synagis should not be used in patients with a history of a severe prior reaction to Synagis or its components. Side effects, such as, skin reactions around the area where the shot was given (like redness, swelling, warmth, or discomfort) can also occur."

Here's the link to the Synagis website where I copied this info:

http://www.synagis.com/

Soooo.... What do you think? My guys are both 1 in 100,000 that are allergic to this very important shot for them. Why didn't anyone at my pedi think to re-read the side effects. This info is from the Synagis home page at the very bottom. WTF?

So now do I continue with the shots? I will be calling the company that makes it to see what they say and then calling my pedi on Monday. What would you do?



Also, I have learned from my OLF from the Nest Multiples board that there is a website where you can report to the CDC and the FDA any adverse reactions you may have on a vaccine. The website is called Vaccine Adverse Event Reporting System:

http://vaers.hhs.gov/

I will get the vaccine information on the shots that were given to my boys and either have the pediatrician's office enter our RSV shot reactions or I will do it myself.

Monday, January 05, 2009

Adventures in Preemie Outings #5: GI and Crash Bang!

Hi Everyone!
Cameron is typing the vowels while Evan is typing the consonants because Mommy is too sleepy to send out the update tonight. We kept her up aaaalllll last night fussing and whining and fussing some more.

Friday we ran errands to the mall in the wee early hours of the mall opening so that we'd avoid as many people as possible. That was nice and we had fun looking at all the sights. Many people liked to stop and stare but thankfully no one came to close. Saturday we had a great visit with Uncle Mike and Aunt Val and we were really well behaved then too, eating all of our bottle and hardly crying at all and even went to bed on time without a peep so that the grownups could actually have a nice evening to chat and play Banjo Kazooie.

We had such a great visit with Mommom & Poppop on Sunday. And it was great with Uncle Ray and Auntie Jenny at Bertucci's after we left Mommom & Poppop's too. Both of us slept and were in good moods the whole day, Cameron even ate his whole bottle at lunch. Bertucci's was fun because we got to watch another baby, Julian from accross the table. Mommy and Daddy had a great time being out like normal grown ups with Uncle Ray and Auntie Jenny, and Mommy is super excited about the extra clothes Julian gave us!! He's a snappy dresser. We like visiting and can't wait to do more of it once RSV season is over.

But today was only a so-so kind of day because we had our GI appointment at the University of Maryland. We were good boys but Cameron didn't want to eat his bottle in the doctor's office, and we thought it was great fun that both of us got to make a very smelly poo-poo surprise for the doctor to see. They are going to bump our caloric intake from about 22 calories in formula (takes 16 scoops of formula for 32 ounces of water) to 30 calories in formula (which will take 24 scoops of 32 ounces of water), which means we'll go from one and a half large cans of formula every day and a half to at least two cans every day and a half. At $29 a can that's a lot of formula. Yikes! Hope we like it.

We'll do this for about three weeks to see if we gain more weight and determine if our weight gain problem is also a metebolic issue as well as a reflux issue. At our next appointment they will see how much we gain and then talk about putting us on a allergen free soy based formula that requires a perscription so hopefully the insurance will pay for it because that can be upwards of $45 a can. Double Yikes! We'll also do blood work at that next visit to rule out infections and talk about other medications that might work, though it seems like they are happy that we're doing well with Prevacid. We like our cherry flavored nom-noms.

On our way home from the GI today we had quite an adventure. We were rear ended in a fender bender just a few blocks from the house. The poor lady behind us didn't realize we'd had to stop for someone ahead of us and she smacked real hard into our bumper. Every one is okay, we slept through it, and the damage is pretty minor. But poor Mommy is still a little shaken up because she saw it coming and couldn't do anything about it. It's okay though, we'll let her drive our red exersaucer car until she can convince Daddy to get her a new Toyota Sienna. Our exersaucer car goes real fast, makes vroom-vroom sounds, and bounces up and down. And it's made of plastic just like Aunt Val's car so it won't dent like Mommy's car did. :-P

Tomorrow we have our third shot to protect us from RSV but we're not looking forward to that because it really hurts. And on Wednesday we go back to University of Maryland for our 9 month old NICU follow up. Hopefully they will tell the state to give us more physical therapy.

That's all we have time to tell you about because Mommy and Granny Cathy said it's time for bed. Big hugs and slobbery kisses to everyone.

Love,
Cameron & Evan

Sunday, January 04, 2009

Another Great Reference for Parents of Preemies

Here is a another great link for Parents of Preemies to use for a whole range of Preemie related questions. Everything from websites where you can find NICU approved micro-preemie clothes, breastfeeding a preemie, development and games for fine and gross motor skills, and formula for preemies. This site was created by and contributed to by members from the Preemie Board on TheNestBaby.com (a.k.a. TheBump.com), a group of wonderful supportive women who have been through just about everything preemie related.

http://sites.google.com/site/parentingyourpreemie/

Friday, January 02, 2009

Developmental Games for Fine & Gross Motor Skills


So as many of you know I post frequently on The Nest Baby.com (also known as The Bump.com) on the preemie and multiples boards. I posted the question about searching for books and info on other activities I can do with my boys to help improve their fine and gross motor skills. Thanks again to PreemieParent and MHop for sharing your suggestions, advice and seeking out more information for us. Following is a link to a free guide on activities you can do with your child to improve these motor skills from ages Birth to 3 years old. Also, I'm including the link to PreemieParent's awesome blog which has so much wonderful information on preemies, oxygen assistance, reflux, motor development and other things that every preemie parent can benefit from knowing.

Motor Skill Development Guide
http://www.earlychildhood.msstate.edu/motoractivities/infant-toddler.pdf

Parenting In the NICU and Beyond:
http://preemieparenting.blogspot.com/

I hope that this reference is helpful to you. These activites can be used with all children, so don't feel that you can't use this information to help you develope your little one. And please feel free to pass this information on!