Friday, September 28, 2007

2nd try at this

I tried to post earlier and I had a video, but I couldn't get it to be visible after I published it. I then ended up deleting the post altogether.
The info the Dir of MOD sent me is in Word and Adobe files and it is a lot to post on here. I looked on the MOD website and a lot of the information appears there as well. The link is http://www.marchofdimes.com/professionals/691.asp

I want to continue this discussion soon, but for now let's bring it back to Serena and Edwin since tomorrow is the BIRTHDAY!!!!
First, my mom talked to my aunt and we have a little info on the girls. One of them has an open PDA and I'm sure they'll be trying meds. My aunt said one had fluid in the brain...not sure if they are talking about a IVH because this is coming from my cousin, who then tells my aunt, who then tells my mom. My mom and I know far too much about prematurity so we sometimes forget this is all new to my cousin. They are both on ventilators but are stable for now. Thank you all for your concern. I am hoping their NICU course is as smooth as possible. I can't get over how much "older" they look at birth compared to Serena and Edwin.

So tomorrow is the day...the day that changed our lives forever. The scarest day of my life but then the again it was the best day because they were born alive and considered viable.

In twin's news...
Serena has cut her 2 bottom teeth!!!! She can pick up a spoon and feed herself and Edwin can as well. Serena is officially crawling and not just inch worming. She has almost pulled herself to stand a bunch of times this past week and is sooo close.
Edwin is getting stronger and is climbing up on the spinning toy we have and grabbing the twirling cups off of it. Hopefully I can figure out how to post these videos. I posted them eating Gerber puffs on You Tube.
So tomorrow should be so fun, even though both kiddos are sick. We are now giving them albuterol via neb treatments, oral steroids for a 5 day course, and now Flovent BID until the spring. Respiratory wise we still have a long way to go and this cold has really taken a toll on them. I wish I could just magically give them healthy lungs...it is heartbreaking and scary to see your children struggle to breathe. I can't wait until this cold passes.

So I will have plenty of pictures and hopefully video of tomorrow.
I am not going to write a post about what happened last year. I documented it in a post back in January. Tomorrow is a day of celebration. I'm trying not to go back to the panic of last year. This year we are celebrating 2 beautiful babies who we love more than anything!!!

Lily and Sophia






p.s. I got some great information from the satewide director of the MOD of research being done that does explore some new theories of premature birth. Email me or comment if you;d like me to forward them to you.

Thursday, September 27, 2007

What I've been working on...

My email to the MOD foundraising director (we've been working together for a few months now). This is in regard to the 2007 Prematurity Summit in Boston and Springfield, Mass that I was invited to:

...I do like the idea of going to Springfield , but I can't deny that sometimes it upsets me the topics that Drs always speak on. The speakers are addressing things that the mothers are doing wrong and how it contributes to prematurity...the importance of healthy lifestyles, impact of age on prematurity, impact of smoking, impact of dental/oral health, impact of obesity and diet, impact of domestic violence and substance abuse. I understand these are very serious problems and I'm sure many women deliver early because of these issues, and this must be stopped and women must be educated.
But what about the thousands of mothers who deliver early and never know why? What about those of us who feel we did everything right but yet our babies didn't get their 40 weeks? I'd love to hear about emerging research that addresses some of suspected causes...undected infection, incompetent cervix (how can we better test for this), risks toIVF babies and multiples, benefits/drawback to a cerclage, etc. Should women carrying multiples have a cerclage put in place even without a history of premature birth? Especially for someone who would like to have more children, I would like to learn more about what I can do to prevent premature birth, and I don't have any of the risk factors most commonly pointed to:obsesity, smoking, drug use, etc.
Through my communication with other preemie mothers I have learned that many people are turned off by the MOD. I couldn't understnad why at first, until they explained that often times they felt the research and education focused on what mothers were doing wrong and there was an element of blame. A lot of mothers I am in contact with never smoked, did drugs, or the like. I understand it is important for the MOD to address these issues because there are plenty of mothers who are unhealthy while pregnant and they need this information and need to understand the possible impact of their actions while pregnant. However, if you ever come across any research that is exploring the less obvious causes of prematuirty, I would definitely be interested...

***Response was great from the Director as always...she forwarded my email to the State Director of Program Services***

His response:

First of all, thanks for your support for the March of Dimes. We appreciate your interest and volunteerism. Patty Kady suggested that I might want to take a moment to clarify the purpose of our Prematurity Summits and speaker topics for 2007. Each year each Chapter sets a theme for their summit and a target audience. The theme is selected and developed by a group of volunteers who meet monthly from February through October to plan the event. This year the group wanted to focus on “Pre-conception Health.” The Summits in 2007, as opposed to those in prior years are NOT aimed at parents or others interested in the topic. The target audience this year is health care professionals who provide information and service to women of childbearing age, with a focus on health care providers who serve populations where there is a disparate rate of premature delivery. Summits are supposed to provide a ‘call to action’ for attendees, and in this case the ‘call’ is to go back to their place of service and ramp up the education of a group of people who simply are not aware of the impact that their behavior can have on a pregnancy. The Boston Summit also includes a track that NICU nurses would find interesting. Most of the speakers are not doctors, but rather subject matter experts. Our goal is to provide up to 550 health care professionals with information that they can use to directly impact the rate of prematurity in Massachusetts. Our keynote speaker Karla Damus does address some of the ‘unknown’ causes or causes not attributable to behavior. I personally would not recommend attendance for anyone not in the target groups because they will be disappointed. If you are planning to attend to see what it is like, or how it is done, that’s great, but if you are going for content, it might not be worth it to you.
There is some excellent research being done with some surprising indications. For example, the last time I discussed this subject with Karla, she indicated that there may be some correlation between the age of the father and the frequency of prematurity! Another researcher at Beth Israel hospital feels that infections PRIOR to pregnancy may have a residual effect that also leads to a premature birth. The latest indications are that oral health is related to premature birth. In spite of all that we know, ½ of all premature births still have no known cause and Massachusetts has the highest increase in the rate of prematurity in the country with a 41% increase since 1994. For this reason we have chosen to go the health care provider route.
I hope we can do future summits and address research advances more fully. Let me know if I can provide additional information. Thanks again for your support.


My response:
Thank you so much for your response.
It was definitely helpful in clarifying the Summit. I think it is vital for health care professionals to have to information about healthy lifestyle in pregnancy, and I think it will be extremely helpful.

I just wanted to go a little more into why I brought up the points I did in my email to Patty. I am part of a large online support group with mothers from varying perspectives. Some mothers of preemies seem to be strongly against the MOD and publicly denounce the organization on the online forums and blogs I participate in. Many of these mothers are articulate and have the passion and networking ability to be really great foundraisers, yet they feel very dismissed by the MOD because they haven't seen what research is being done to help answer why those of us who did keep our bodies healthy during pregnancy still ended up having premature births.
I wanted to find a way to attract these mothers and let them know that the MOD is a worthy cause even when there is a lot of focus on the educational piece related to keeping yourself healthy during pregnancy and avoiding alcohol, drugs, smoking, etc. In short, I just don't want these parents to think the money raised is going to research that seems obvious to some...i.e. don't abuse drugs while pregnant, to put it bluntly.
When thinking about those people who are most likely to join forces with the MOD and to volunteer their time and money to the cause, I am inclined to think it's the mothers who did what they were suppose to during pregnancy but who were caught completely off guard by premature birth. Of course this is a broad generalization, however even Patty said that in her two years of working with families the volunteers have always been the ones who "did everything right" and most still do not know why their pregnancy was cut short. If we want to reach out to families who have the experiences to share I think we have to keep in mind that there are many still searching for answers, and because of this desire to know what happened, they support research that will hopefully one day reveal the mystery.
This is why I think getting the word out about new theories and research being done into unexplained premature birth is so vital. It will also be helpful to health care professionals, such as my own OB whom I'm sure doesn't feel satisfied telling me "we just don't know what happened...maybe it was because you were carrying twins." OBs want this information too, and even though they need to be reminded of how best to articulate and edcaute their patients on healthy lifestyle during pregnancy, they too might want information to help answer why their healthiest patients still ended up delivering too early.
I want to say I think the MOD has done a good job in the past several years getting away from the angle of portraying prematurity as something that happens when you smoke or do drugs during pregnancy. I just saw a great commercial where they address the very issue that the cause of many premature births is still unknown. This is why I support the MOD...I want them to fund research to find these answers.
In the past year I have seen prematurity from many angles. I delivered at 23.5 weeks for no known reason, my sister-in-law lost her daughter to prematurity after she was born at only 21 weeks, too young to be considered viable, and just this week my cousin's wife who underwent IVF for her pregnancy delivered her twin girls at 25.2 weeks. Three women who had prenatal care from the first possible moment, who never did drugs, smoked, consumed alcohol or caffine, all delivered too early. There are hundreds of more examples of women I have come to know via the internet who are in our same position; and to me, this is the key to massive volunteerism and foundraising involvement. When you experience prematurity directly or through a loved one's experience and you see a family who desperately wanted this pregnancy and did everything right and yet something terrible happened, you are going to want to support the cause that is invested in figuring out why this happened and what can be done to make sure it doesn't happen anymore.
You described very well the intent behind this Summit. Perhaps in the near future there will be summits geared toward families who have experienced premature birth and are interested in the latest data and research. Many of us want more children, and many of us are extremely afraid. There are innumerable parents I know who struggle with the decision of whether or not to have another child after an unexplained premature birth. I think we need to help these families. I think we need to show these families that the money they work hard to raise in the WalkAmerica events every year is helping to find answers.
Thank you again for your time in responding to what I had brought up to Patty. I hope we can discuss ideas in the future.


I just wanted to share with you because I want to know what you as parents of preemies would like to see the MOD do more of? Most moms who comment here are supporters of the MOD, but especially on the PE there are moms who just don't think the MOD is helpful at all, and I can see their point as I stated in my emails.
I think there is definitely a place for the educational piece for healthy lifestyles, but in all reality didn't we do that? I personally want more. I don't want women to leave their OB's office after their 6 week follow-up post classical emergency c-section with their baby in the NICU upstairs still on a breathing machine with this as an answer: "we don't know why you delivered early. But many people go on to deliver term babies after a preemie." Well you know what? That's just not a good enough answer for me.
I want to hear what you guys think. I want to do the walk this spring and raise money for the MOD, but I also want to DO more.

They were born...25.2 weeks

My cousin's twin girls were born sometime late last night. My mom got the call from my aunt at 4:30am our time, so Amber probablly delivered on the 26th California time. The babies are both less than 2 pounds, but we don't have exact weights. Amber underwent an emergency c section, was put unconscious, and my cousin was not permitted to be in the room. He saw the babies, but they were then brought to San Diego to a Level III NICU. I am assuming with their respiratory need and their small size the Level II they were at felt it best for them to be at a Level III.
I will be calling later this afternoon,. although Amber will need to stay in the hospital where she delivered for 3 days, which means she can't see her babies until the weekend. Michael will be able to visit and tell Amber what is going on. Hopefully he will take some pictures and send them to me...I asked him to do that when we talked last night.
Another ride for our family. The hardest part was in talking to them last night there were no tears and I think no idea what was in store. It's a personal journey you have to take to understand completely. But even beyond the NICU, my mom said it best to my aunt when they spoke early this morning "It's not just the NICU, having premature twins is a lifestyle." It sure is.
And there are plenty of scary times, (i.e. even last nigth with Serena's cold really interfering with her respiratory ability and us having to take her in today most definitely), but there are also so many rewards. I pray that my cousin's baby girls, Lily and Sophia, will have the most uneventful NICU stay as possible and wish them a life of health and happiness.

Wednesday, September 26, 2007

Prayers Please...Prematurity threatens to strike again***Edited***

My mom just called. My cousin's wife is pregnant via IVF with twin girls, Lily and Sophia. He quickly called my aunt from the California Marine base hospital and said that Amber is 4 centimeters dialated and leaking fluid. She is 25 weeks pregnant.
He told my aunt that they thought the babies would be born by the morning. I am assuming they are transfering her to a hospital with a NICU since the base hospital does not have one.
This is another nightmare that I am just not prepared for. I know if she does deliver anytime soon I will have the most information to help them through their NICU journey. I just hope by some miracle there is a way to stop her labor and the girls come closer to term. She was due right around my original due date, and here we are three days away from S&E's actual birthdate.
What the heck is going on?

***Edit*** I'm about to call my cousin at the hospital. They are at a hospital with a Level II NICU. It looks like Lily's foot is right there...just like Serena's was. She is in labor and although they are attempting to stop it, they said it looks like she will have the twins within the next 2 days. She is 25.2 weeks today.
Please pray for them. Please also pray for my kiddos. I just put a call into the pulmonologist on call.

Just talked to my cousin and his wife. An internal ultrasound on Mon was completely normal. This morning she awoke and went to the bathroom and was bleeding. She is 4 cm dialated and twin A's amniotic sac has a tear in it and she is slowly leaking amniotic fluid. Twin A is Lily and her foot is way down to where the Dr's can feel it.
They are at a Level II NICU and were told they can deal with the respiratory issues there. However, if the need for surgery arises (say a PDA ligation) they will have to go to San Diego, which is about an hour from their home. They also told them they send babies to San Diego who have brain bleeds. I didn't go into details asking if all IVHs go there or just IIIs and IVs.
It's so surreal explaining what I know to my cousin who seems to be headed onto the NICU roller coaster ride. I didn't even want to tell them any details. It's just too scary to articulate now. Amber has a son from a previous marriage who is like a son to my cousin. I think he is about 7. I hope the level II NICU is sufficient and the babies stay there. It would be so hard to travel an hour to see the babies when Dylan has school and needs to be cared for. There is no family there. My aunt lives in Maine and Amber's family is in Arkansas.
I just don't have words for this anymore. I didn't even know anyone who had had a preemie before me. And within a year look at what's happened. I think of all the families out there who are going through the NICU experience right now. My heart goes out to them all. I think I need to go to the NICU and volunteer to hold the babies who don't have frequent visitors. I feel like I need to do something...

September 26

Last year on this date Edwin and I went over to my appointment at UMass. We had an ultrasound scheduled so we went there first. We saw images of both babies, got the confirmation that we were having a boy and a girl and that they were almost exactly the same size which was a good thing in pregnancy. They were on target for their gestation...23.2 weeks. During the belly ultrasoujnd the tech said "Don't let me forget to do an internal ultrasound. Your OB likes to do one around this time with her high risk patients." She remembered anyway and so we got to that part of the exam. I thought everything was normal and she asked me to do all of these different positions, etc. and then said "I'll be back I have to consult with the Dr." I was not nervous abgout that statement this time because the last ultrasound she had said the same thing and I panicked and nothing was wrong. I figured she just had to consult since she is the tech and needed to get the okay from the Dr before telling me I was all set.
The Dr. came in, looked at the ultrasound photos and asked me if I was having any "cramping, abdominal pain, back pain, etc." No I wasn't having any pain, in fact I felt great.
I was then told my cervix was shortened and this was a sign of preterm labor. She also said my membranes were bulging. I would need to bring these ultrasound photos to my OB and I would probably be admitted to Labor and Delivery. I immediately started crying. I still remember the look on the tech's face. She said "it will beokay" but something in her eyes told me it wouldn't.
I immediately called my mom, who was at work, and told her what was happening. She googled it and said they would probably do a cerclage. I didn't know what was going on. I saw my OB and was immediately brought to L&D via wheelchair.
My cervix was checked and I was told I was 1 cm dialated. At that point it was still unclear if I would remain in the hospital until delivery or be permitted to go home on bedrest. I was asked if they could do a drug test, they did a swab to check for infection, and urine tests. Edwin then decided to go to the gym for a couple of hours while I stayed in bed and tried to rest.
An hour or so later the Dr checked my cervix again. To my horror she said I was 3 cm dialted. I was immediately put on a monitor for my contractions (which I couldn't really feel), was given meds to stop my labor, and had my first steroid shot for the babies lungs. A NICU consult was requested. I was hysterical. I was so scared and alone. I called Edwin and my mom who came right back to the hospital. I was beyond upset. I didn't understand why this was happening.
When the Dr came back she said she thought I had always been 3 cm but that with the bulging membranes it was hard to tell, so in a way that was good news b/c it meant I didn't go from 1 to 3 in only an hour. My OB came in to see me and followed up with me about everything that had happened. We talked about the need for a classical c section if they were born and she said "we'll talk about that."
The NICU came down to talk. They thought I was more like 22.4 at this point and said they would resuscitate if we wanted if I was to deliver that night. Edwin and I quickly stated we wanted them to try to save our babies. I didn't correct them about my dates. I was 23.2 weeks. We heard sooo much it is now like blur to me. I remember hearing a lot of things like BPD, ROP, IVH, etc not having any clue what it all meant. I remember hearing that the neo didn't have the statistics of survival but in 2005 there were 2 23 weekers born and they both survived, but he quickly said "that was a good year...a very good year." He made it clear that was no normal for them both to have survived. He said getting the 2nd shot of steoids would help their chances, but since they were twins they had even a smaller chance of survival b/c twins tend to develop slower then singletons. I remember he talked about long term outcomes and said that they could end up with anything from glasses to cerebral palsy. He said babies born at this gestation are never 100% "normal." I remember him saying the longer you stay pregnant the better chance they have of surviving and the better their long term outcome will be. Make it to at least 27 weeks I remember him saying. When he left he said "I better not see you again tonight."
I was so overwhelmed, so scared, so devastated, but yet I thought there was NO WAY I was having these babies any time soon. By this time they had determined I would be in the hospital until delivery and they were hoping to keep me pregnant for at least 10 weeks. I was ready to get comfy and stay awhile.
That night was scary. Everytime they felt my cervix I would go into painful and frequent contractions (I finally began feeling them at this point.) But I didn't dialate more than 3cms that night. I was scared but I really thought I would stay pregnant and be in the hospital for the next several weeks. I never thought I would be having my babies in less than 72 hours...

Tuesday, September 25, 2007

September 25




On this day last year not too much happened. I went to work and came home and took some belly pictures since I was really starting to show by now. I was 23.1 weeks pregnant and I was so excited for my ultrasound the next day that I remember I had difficulty sleeping that night.



Today we have OT coming in with EI and I am anxious for her to give us even more ideas for strengthening Edwin's trunk and just observe them both overall. She was originally coming to help with feeding, but since Serena has now figured it out...to the point that she picks up the spoon and feeds herself and can also feed herself Gerber puffs and is content to do so for over a half hour, she'll be coming in to look at them motor wise, which she also specializes in. I love our EI worker but it's nice to get other perspectives as well. Edwin will sometimes sit when he uses his hands on the floor for support but is very inconsistent and really needs to strengthen those tummy muscles.

Monday, September 24, 2007

September 24

On this date last year Edwin returned home from Abu Dabi with more than his luggage. He propsed to me the night he came home and it was such an exciting time. We were so excited for our boy/girl twins and were excited about sharing our lives together as a family. We were anxiously awaiting my appointment/ultrasound scheduled for Sept 26 because we couldn't wait to see what the twins were up to in there. Little did we know a lot was going on in there...

So Edwin and I have been engaged for a year. We haven't even talked about our wedding day at all since. With the birth of the twins, 4 months in the hospital, coming home in the middle of RSV season, Edwin trying out for the Olympics and being away, me returning back to work 3 months after S&E came home, financially trying to get ourselves situated with me only working part-time, and trying to save for a house, there is just no time. I am content with what we have and trust me it's like we're married anyway...all that's missing is the legal aspect of it.
I would love to have a nice wedding one day, but for now I want to buy a house. I can't imagine spending money on a wedding when I feel like I should be worried about paying bills and saving. I'm sure my mom would help me with planning and helping with the wedding and that I could find a way to make it low cost, but it just seems like a lot of work to plan it and to be honest it overwhelms me at this time. Ashton's mom Shannon is in the process now, and it does sound a little fun...God bless you Shannon and I hope your day is beautiful. Some day we'll make it official and have the resources to invite everyone who means a lot to us and show them a good time.
As for now, I don't need a wedding...Edwin gave me the best gifts of all...my Serena and Edwin, Jr. and a father's unconditional love for his children.

***No pictures here but I posted some last night from S&E's cousin's bday party.***

Sunday, September 23, 2007

Today

Today we decided to go to Edwin's mom's house for our niece's bday party since it was just going to be family at the house and S&E could rest/sleep there, eat there, and do everything they do at our house..plus it is only 5 minutes down the road.
It was a lot of fun. I got to talk to my sister-in-law about the loss of her baby, and she is holding up pretty well. She said the hardest part is knowing she was alive and they did nothing. Because she does not know prematurity like I do I am sure this is an awful feeling. She said she could have accepted it better had Keiry died after they at least tried. What she doesn't realize is what "trying" is. Keiry would have been put in intense stress and pain through intubation, etc. It's so sad to say but it is better that she died pain free and peacefully in her parent's arms. I found out she was 21.5 weeks pregnant, and little Keiry lived for 5 minutes. Little is known about what happened, but it seems to me that it was almost identical to what happened with me. She was 3 centimeters when she got to the hospital, and it appears her membranes were bulging. Only, hers actually came outside of her body and therefore infection was a huge risk, and nothing could really be done. Finally she went into complete labor and Keiry was born breach. My sister-in-law (I guess I could write her name but I never asked for permission so I just haven't) was able to talk about everything without tears, and I truly admired her strength. She said she would like to try again to have another baby, but wants to find out what happened and make sure she is capable of carrying a baby to term. In her words "I don't want this to happen again." She said she just wouldn't be able to deal with that. It's true...who could deal with that? Of course she still looks a little pregnant and that must be really hard. I pray that she is able to have another baby and has an issue free pregnancy. I hope that for all of us who want more children and have gone through difficult pregnancies/births.
So it was a good day, minus Edwin crying a few times because everyone was being too loud. I had to take him into a quiet room because he was too overwhelmed because he wasn't feeling well toward the end and loud noises startle him. It's pretty quiet at our house with just Edwin, myself and Miss Serena, so he wasn't used to kids yelling and having fun.

Tia y Edwin

Ashley (1) trying to take toys from Champ

Okay I was laughing because Blades of Glory was on...have you seen that? It is sooo funny!



Mama and Serena Bean...her shirt says "I get my good looks from my Dad"...I think she looks like a mx of both of us...so I contributed too :)











The week that changed our lives forever

Tomorrow marks the anniversary of the week that changed our lives forever.
Last year on this date I was waiting for Edwin to come home from Abu Dabi where he was on an international boxing trip. I was 22.7 weeks pregnant with my b/g twins. With my OB's consent, we had just booked our flight to California for another boxing tournament. We planned to depart on Friday September 29...if you know the twin's birthdate you'll know we never made that flight...
This is a very emotional week for us...as many preemie mothers before me have articulted, I have mixed feelings about this week. The birth of my children was so bittersweet. Mostly though, I am so thankful for their lives, that this week will end up being a very joyous occasion, especially with their birthday party on Saturday, which I am sooo excited for! I will post every day this week to document what at happened at this time last year...

p.s. We are still sick. Beanie is probably fairing the best of all of us. Edwin has been having a tough time with mucous build up which is causing him to gag, cough and throw up, but he is happy when awake and is playful...he is still asleep now...yesterday he slept until 10am, although he had been up many times during the night. It's really amazing how colds take such a huge toll on our preemies. Hopefully, they will be better by their birthday!

Friday, September 21, 2007

It caught us....

Well, we've all been caught by a cold...You see, we didn't catch the cold, the cold caught us... we were trying to avoid it, but someone it found us. Now my mom, Edwin, the twins, and myself all have the sniffles, a cough, and just feel yucky.
Serena's requiring more oxygen while asleep and has a terrible cough, and Edwin has post nasal drip and is throwing up his feeds. Unpleasant to say the least. Let's hope we get better soon.

Still smiling even though he doesn't feel great...he kept anticipating the flash and would look away or squint his eyes



Daddy's sick too :(


Treatment time

Practicing getting from sitting to crawling...she just belly flops and gets back up on her hands and knees again

Thursday, September 20, 2007

Per request

I'm so anxious to get the video camera tomorrow...which also has a digital camera. My camera has stopped zooming in and takes really blurry pictures and the color is often poor quality. But here are the best shots I got of the night.

S messing with brother's monitor and brother not appreciating it.

Just being Champ

Innocent look

Quick save

My sweethearts

working on my pincher grasp

cheeeese

eating paper

me 2

The "I'm not about to take out all these wipes like I did when Grammy watched me the other day" look

Brown-eyed beauty

Pink tape to keep my cannula in my nose at night time...I still rip it off of my face

Favorite show

handsome boy

Self feeding

Wednesday, September 19, 2007

Pulmonology

Hello all...
We had our pulmonology appointment yesterday. Weights/lenths:

Serena 15 lbs 8 ounces 25 3/4" long.
Champ 17 lbs 2.4 oz 27 1/2" long!

He is HUGE compared to her! Serena is still tiny, and I don't know how successful we are going to be with getting her to gain weight since she is now crawling EVERYWHERE. The girl burns A LOT of calories. But as the preemie parents know, it is just a constant battle for weight gain.

As for Beanie, I told the doc that she still needs O2 while asleep. No one is surprised because of her airway issues, and I finally got the appointment for her repeat bronch in Jan. So we will continue with the O2 while she is asleep until she doesn't need it anymore, which hopefully we will have an idea of when that might be after the bronch.

Mr. Champ has been doing really well with his sats...no issues at all in that department. They repeated an EKG which came back normal! No pulmonoary hypertension! Great news. So we now have permission to wean him down 50ccs every other week. We are at 300 now, so by the end of November he will be at 100ccs which is the point at which the pulmonologist wants to leave him at until we see him in January and then we will begin taking him for periods of time. If he is doing really well at 100 long before our appointment I may call and ask if we can try 15 minutes off a day or something, but we'll see. It was at my suggestion that we increased the wean to biweekly, and I really respect how much the pulmonologist listens to me. He knows I will be the first to call with concerns about the kids, so he said it sounded like a good plan since his EKG was good.
I also asked for a script for Zantac. I know Edwin is still refluxing, although not projectile vomitting like when he first came home. So since he sometimes cries while asleep in a painful way which makes me believe it's reflux, I figured we would try Zantac again to see if that helps. He doesn't wake up crying very often, but the fact that he does it at all isn't good. I obviously don't want my little guy in pain.

So all in all it was a good visit. We don't go back until the middle of January. We just have to pray and do what it takes to keep S&E healthy this RSV/cold season and hopefully by spring I will have tube-free kids!
Speaking of the dreaded season, we have begun our hibernation again. No more trips to Target or the like. Minus their birthday bash which is a week from this Sat., we will be limiting the amount of people we expose S&E to. We gotta do our part to protect them from the germs.

Side note...remember I told you about the weird thing I found in Serena's food? I called the company to see what they found in their lab analysis and they couldn't find the sample I sent. I sent the weird thing in a baggie as well as the jar of leftover food. They claimed the jar had spilled all over the packaging, and when I said I had sent the substance in a baggie, they called the lab back and the lab tech said she didn't see it, but had thrown away the packaging the previous day. Didn't they read the report? I said I had found a substance and I was putting it in a baggie and sending it to be analyzed. They told me to send the leftover jar too so I did. Total disregard for the situation. I wanted the substance tested...HELLO! Why didn't she look through the packaging for the substance in a baggie if that's what the report said?
Thankfully my step mother knows people at a lab and she had the substance tested right after it happened. I wanted to hear what the company said before I said anything, but since they THREW it away, I guess it doesn't matter. Thankfully it was of the vegetable family. The lab techs my step mom works with were so freaked by its appearance they thought it was fungus and sent it to another lab which could analyze it even better. I'm mad at the company but I don't see what I can do. Thankfully Serena is okay and her increase in pooping has maintained but it must because she is becoming more regular with the fruit baby food she has been eating...which is a very good thing.
In twin B news, Edwin army crawled across my mom's floor a whole bunch of times yesterday which was exciting, but confusing. I wonder if he realizes he is suppose to keep his head up? He puts his head down and just begins to wriggle across the floor.
The video camera my mom bought came today!!! She is going to read up on it and give it to me tomorrow or Friday!!! I am sooo excited to take video of the kids and post it for you all to enjoy!
Perhaps that will be my next post...tune in to find out if I have figured it out by then!

Getting them to both look at the camera at the same time just wasn't happening...