"You've got mail!!!"

HALLOWEEN
Normally, everyone comes to Shane's (guess our house now) and passes out candy b/c we live on a street with lots of trick or treaters. But this year, we decided not to have anyone here b/c we were afraid of all the germs getting into the house and Timber getting sick. This was our pic last year!! And a pic from a Halloween party this year.

Baby Timber was a sock monkey...even though just she and I stayed at home and didn't get to show everyone how cute she was!!

EADE LOVE is here!!!

My twin sister, Trina, had her baby Nov. 8! She's perfect!! So very sweet!! And is dark complected! She looked so big but only weighed 6 lb 13 oz. Her hands and feet are already as big as Timber's though! I was really scared she'd be as big as Timber is now, but comparing the two, Timber definately has come further than I notice many days!!
We're super excited for Timber to have another buddy to be close to! I hope I can keep them together some days so they'll be close to our cousin, Jennifer, like we were!! Here's a pic of us 3!

Timber turns 2 months old (5 months actual, 2 months adjusted)

And the fear lives on!! :(

Still reading a lot on blogs with people who have situations similar to ours. Not that our situation hasn't been tough, but reading them sure makes you thankful! I found one blog where the mother had triplets, lost one soon after delivery, one a month into the NICU and the other had severe disabilites and many, many doctor's appointments and surgeries! Ouch! I've found many with twin to twin transfusion and many where one twin has also not made it. I guess this is like my therapy?? I'm not sure why I'm so intrigued by them, but I literally spend hours each day reading!
Looking into all of it, makes me very scared to that we are not out of the clear. I read that you can do reflex test on babies very early on and often times any neurological problems can be detected. So, I grabbed Timber and did them ALL!! It seems as though she's doing everything normal. Her head/brain ultrasounds came back normal (Tinley's had continued to get worse, we had a grade 3 bleed on one side and grade 4 on the other the day she passed away and they were doing another one Monday to see if the bleeding had gotten worse). Timber's MRI the day we left the hospital also came back normal. So, I feel there's a good chance, she'll be a typical little girl! I guess there's always the "what ifs". I read that babies with IUGR (inner uterine growth restriction) and TTTS (twin to twin transfusion syndrome) have an increased risk for neurological disabilities-like CP. Many people tell me not to worry, that everything will be fine-but they don't see everything I do either! With my job, we have many kids with disabilities, so it's very real to me. Most people don't know of many disabled kids or see the severity that I do-so it's like it doesn't exist to them. Even with Eade now being here, I'm scared that she'll do things before Timber and that I'll become very frustrated! I know, it seems silly to many, but it's very real.

Frustrations, frustrations!!!
More fun news....MANY medical companies are seriously screwed up!!! I can't begin to even go into detail on all the billing/insurance/authorizations/ etc that we've had to deal with. Hours and hours!! And things still aren't correct!! If you've ever had any hospital stay, you probably know, you don't only receive one hospital bill. There are labs, xrays, ultrasounds, specialists, physician's billing, etc and for some reason NO ONE can seem to get it right!! Maybe it's because we had so many and 2 babies with the same birthdays, hospital days, policy numbers etc, but it seriously stinks!! A warning to anyone that goes through anything like this.....keep everything!! Every phone call you make, who you spoke to, what date it was, how the issue was going to be resolved, everything!! We had a company, The Pathology Group, that I received a bill for several thousand dollars for Timber's lab-first they said we didn't have insurance to pay in full immediately, after I called and corrected everything they were "sending to insurance", sent me ANOTHER bill that was DUE IMMEDIATELY, called and corrected it AGAIN-this time they didn't have Timber's name spelled correctly (which wasn't the truth!), and it AGAIN was suppose to be corrected and sent to insurance. I call insurance and they'd never received anything!! A few days later.....21 collection letters in the mail!!! UGHHHH-I wanted to call In Your Corner and send a letter to Mercy reporting them! I still plan on sending a letter to Mercy just so they know the pain of the company they chose to do their lab!!

Collection letters!!! All 21 of them!!

All of our EOBs from Blue Cross

Folders sorted by the medical companies that bill us!!

Sweet Baby Timber

Timber has been doing great!! She wasn't feeling too great, so I took her to the doctor about a week and a half ago-she had a cold and ear infection. She weighed 9lbs 9.5 oz then dropped to 9lbs 8 oz . We've been going in once a month and getting RSV shots-it's a virus preemies and sick people catch very easily and can result in very, very sick-hospitalized babies!! We have to be extra careful the next few months, as RSV and FLU season are now here! :(

She's really started to develop a personality and been smiling and interacting more the past 4-5 days!! We love it!! BIG smiles and lots of fun!!! She rolled over 11/3 and several times over those days, but hasn't since then!! Since she was sick, we didn't do much tummy time though...just lots of snuggles!! We've changed her feeding schedule to every 4 hours-which seems to help her reflux some. Not sure why, maybe more time to digest-but it's definitely helping! She's also eating much more-she was at 70 ccs, then went to 90 and now up to 120 for some feedings!! She's been sleeping in her bed and sleeping all night!! Baby Wise....I swear by that book!! I've still been reading to Timber every night too-I think the bedtime routine is the best thing ever!! Her favorite books are: Good Night Moon, If I Could Keep You Little, I Love You Through and Through, Brown Bear, and now we love The Night Before Christmas!!

Shane and I went to bedlam this past weekend and Timber stayed at my dad and Tammy's for the first time!! She did really good...she's such an easy baby!!

Tatum, Eade, my dad, Timber, my brother Keith, Ruffin and my nephew Cash

 

Timber and Eade's first Thanksgiving

Izzy, Timber and Addie (Timber's cousin that's 5 months older)

Our first family Thanksgiving

Papa Dean, Gammie and Timber

LAST BUT NOT LEAST!! A COMPARISON PIC!

Sept 10 vs. Today!! We've come a LONG way!!!

Overdue update!

Wow....first let me say I'm sorry for not keeping up better with this!! I'm going to do better and keep this kinda like my journal for Timber to see when she gets older! So that she can see what was going on when she was a baby!!

GETTING CAUGHT UP....

Coming home and preparing to come home was pretty tough!! We thought we were ready, but honestly, mentally, I wasn't! You get so use to having nurses do everything and tell you what they think, experts there to let you know everything is fine and to be there just in case it isn't! We came home Sept. 14, one day after the girls' due date. Sept. 13 put us at 3 months in the NICU!! Sounds crazy now....an entire summer spent in the hospital and away from home!!

You have room in days-basically where you practice doing everything on your own. We decided to take 2!! Let me just tell you-a couple and baby stuck in a hospital room, not able to leave, and NO entertainment gets to be VERY long and stressful!! We discharged on a Friday morning..., Thursday was about the most stressful day anyone can imagine! I have people coming in telling me all these things about how to work her apnea monitor, if this goes off do this, if this goes off this cable is bad....getting texts about the oxygen being delivered, how to deal with the regulators, what kind of tanks we wanted, cannulas, how much of everything we needed.....the pulse ox and how to set it all up and everything I'd need. How and when to give her medicine. As if this wasn't enough, the picture people were in trying to get good poses, then make us decide pics we liked and a package, etc. WOW!!!

Friday finally comes! I never thought about going home on oxygen and what all that would entail....but let me just say it's a lot of crap to be attached to a baby!! And trying to get out of the hospital with everything was nothing that came easy!! But we did it!! Less than half way home, her apnea monitor goes off (btw is extremely loud and very different than the hospital alarms), I freak smooth out!! Completely froze!! Normally we would stimulate her back but she was so tight in her car seat I wasn't sure what to do!! So I started pushing my fingers against her chest....yes, kind of like CPR! Sorry, I know, I kinda freaked out!! Nearly start crying and by this time, ready to go back and terrified of being at home alone! We finally get the alarm reset and back on the road. We picked up my niece Tatum at school (a huge surprise to her  b/c she'd never seen the babies and was just dying to finally see them!). We get home and get everything unpacked (remember, we've been living in a camper for the past 3 months, so our home wasn't quite ready!). She's attached to the oxygen and monitors, so whoever holds her has to stay in her "designated area" as there are too many cords to haul around the house. About 8 pm, as we're finally getting all settled, her pulse ox starts reading very crazy numbers-her heart rate was 61 (normal is 120-160) and her sats very low as well. None of us knew what to do! So everyone is freaking out, it's a mad house!! AGAIN, we're ready to go back to the NICU!!  Little did we know, the pulse ox reads inaccurately often and most likely it wasn't right! Tatum, Shane and I all sleep in the living room with Timber in her bassinet and all monitors attached. I watch the pulse ox ALL night long! Just making sure her numbers are staying up! We were sure glad to get the first night over with!!

The following week was stressful, but each day got better! I wouldn't even shower without constantly checking her numbers as I was showering! You get so use to seeing numbers-just watching them in the hospital, it's hard to think she's okay without getting the confirmation from the numbers. Even going into the kitchen to make a bottle-I'd run back to the bedroom as fast as I could make it just scarred something may have happened!
By the forth week home, we started to wean her oxygen and even leave it off for a few hours at a time. At the end of that week, she was off! The nurses told us she would be on oxygen for a few months, we're glad that wasn't the case! Imagine trying to carry your baby from room to room with all that crap attached to her! It wasn't fun! And I'm sure glad I got to enjoy my sweet girl without all of it before going back to work!


A SENSE OF NORMALCY
My maternity leave is coming to an end! :( Tomorrow I go back to work, so I've been trying to get things around home caught up. Everyone keeps asking if I'm ready, yes and no! It's honestly been so different than I could've ever imagined! I thought I'd get so bored and had all these projects around the house I wanted to do! Haaa!! I cleaned closets, that's about it!! I just lay in bed and hold my sweet girl sometimes until noon!! Pretty crazy if you know me very well! We read everyday! Hopefully that will pay off one day! I've become a huge pintrest fan and am addicted to reading people's blogs!
But, I'm excited to get back to work and get out of the house some! I feel like I have been snowed in for 6 weeks (we can't get her out and in the public b/c her immune system is still very weak). Having purpose and a schedule everyday will be good for me!
 
ALL ABOUT BABY TIMBER
She has quite the personality now!! She loves to read and rock! She loves her butt to be pat on when she's held! We have finally outgrown most of our newborn clothes! That's a long way from where I thought we'd be...I thought we'd be in NB until Christmas! I definitely over shopped for NB clothes! We've been taking walks in our jogging stroller and she LOVES it....which makes mom very happy!! She has the biggest grin after a bottle or when you're baby talking to her! She'll start giggling her body and then a big grin follows! Absolutely love it!! Today her in appointment she was 8lb and 5 oz-20 inches long! Very small for her age, but still growing every week!!
We're ready to meet our new cousin-Aunt JoJo should have her within the next 3 weeks!! We've got all kinds of fun Christmas activities scheduled with our cousins  (again, I've been on Pintrest A LOT!). Timber will also start staying with her Izzy this week and hopefully get to be around Addie before too long! We're so glad she'll have 2 cousins so close in age for her to be close to.

Losing Baby Tinley

Losing Baby Tinley

We've sure had to deal with a lot these last few weeks! As most of you know, we lost Baby Tinely, July 14 to an infection (pseudomonas). It was the hardest thing to watch and go through all of it. I had a friend (who's also a nurse of many years) come to the hosptial after I told her what the infection was and that it was in her blood. She prayed with me and started to say things like Tinley may not make it. Obviously being a mom and knowing just 2 days before we were preparring for our "1 month NICU birthday party"-I didn't want to hear any of it. Wouldn't really believe or listen. I called the doctor after she left, and ask if we needed to start thinking 'she may not make it'. He assured me "NO"-we have her on antibiotics and her body seems to be responding. This was Friday morning. We watched her all day Friday on the Oscillator (a machine that basically breathes for the babies and keeps their lungs open at all times-it also shakes her continuosly), watched her continue to swell (they continued pumping fluids in all day trying to get her to pee to see if her kidneys would work), and watched her turning very, very pale. We could hardly even look at her she looked so bad. She wasn't responsive much at all-she would open her eyes, and a slight kick, but not much more. But this response was more than we got on Thursday-so, we're thinking the antibiotics are working. The doctor comes in several times and updates us-really no change-her kidneys still weren't working, her SATs weren't good, her blood pressure was very low. But, this is how a baby responds to an infection-or that's at least what I kept telling myself. My dad and stepmom, Tammy came and got our laundry and invited us out to get a break from the camper and to pick up our laundry. So, at 11 pm, we leave the hosptial and go to Blanchard. At 3:30 a.m. I called to check on Tinley-the nurse said there wasn't any change from when we'd left. At 4:15 they called and said Dr. Verma wants to talk to you guys can you come in. So we rush out and to the hosptial (about a 25 min drive). Just as we're pulling into the hospital, they call again and say they've started resuscitation!!! What?! We thought Dr. Verma was going to tell us medication wasn't working and we had to try something different. Or something-definatley not this!
We walk in the room, and they are pumping on her chest!! The most awful sight you can EVER imagine. She laid there so lifeless, with 5-6 nurses standing around her incubator crying terribly! The Dr. standing back giving orders and the respiratory therapist crying hysterically too. The Dr. calls me out to the hall, tells me what's going on as I watched them giving CPR to my baby! Stupid me, go back into the room, and say "So, there's no chance she'll be okay now, is there?" Dr. Verma, "No, this is it, do you want to hold your baby?" It still seems SO unreal! It all happended so fast. And I really, really thought, "we'll make it out of NICU. We may have a few problems, but we'll make it out" There was never ANY doubt in my mind that we wouldn't make it out! I never really believed when they said we would likely face issues due to the brain bleed, that we would. Maybe I'm naive, maybe it's the mom instinct, or just trying to be as positive as I can be to get my family through this-but I really did think everything would be OKAY!
We sat in the room and held Tinley for awhile-her body turned cold and stiff and she started to turn blue. We had no idea how to tell family or friends (afterall we've been downplaying this as "just a simple infection") we didn't want to leave the room so we could hold her as long as possible. Neither of us could even make the call without crying terribly. So, Shane sent a text out and I copied that. Sorry, for those of you that got a text and thought it was inappropriate-we just didn't know how else better to handle it and didn't want anyone to hear us breakdown.

This is really happening....

My mom, dad, and Tammy came up that morning to be with Tinley one last time. The funeral director, who is close friends with Shane's parents had been in contact with Shane and his parents all morning. But as soon as I saw him walk in with the basket for Tinley-my heart just sank and I completely lost it! It was like this was what really made it real! He sat down with us and started asking a lot of questions-through all of this, I've tried not to ask "WHY?" and be positive, but I immediatley started thinking "this just isn't right, planning your own baby daughters funeral!" Making decisions about where she will be buried! What music you'll play....all of it! Her own sister never even got to take a picture with her!! Or lay next to her!

Things will be so different...

When you walk into NICU, you have to give your baby's name-we were so use to saying, "We're here to see the Powell Twins." And when calling, we'd say "We're calling to check on our girls." It still happens some and we catch ourselves and kinda realize again everything.

We have 2 of everything we bought-2 sets of clothes, 2 recliners, 2 sets of animals/blankets etc. What are you suppose to do with all of this stuff?? Obviously, we'll have a keepsake box of some of the most memorable things, but others we aren't sure.

I envisioned the girls would be so close, like Trina and I were. Play sports together, cheer, dance, classes in school, sleep together-all of it! Now, I hate all of this for Timber! I feel like she will have this piece of her always missing and I can't do anything about it!

Our NICU journey: month 1

The first few days:

Shane and I went down and saw them the day after I delivered. I remember thinking they were so very tiny! Watching Timber (baby b) was so exciting! We thought Baby A was the mover and the active one but after watching Timber, we knew it was her all along! It was so neat watching how she
kicked and moved because it's exactly what I felt!

The second day was tough! Very, very tough! Timber got down to 1 lb 5 oz! She looked terrible! Her skin was so thin and you could see every single rib! She tried crying but you couldn't hear her because she was on the ventilator. We went home late that afternoon......going home without your babies sure is heartbreaking!

June 20....., yes, one week after they were born, we finally got to hold Timber! She was itty bitty!! When we hold the babies, it's called Kangaroo Care. They must be held skin to skin-just like a little kangaroo pouch! Tinley got her first blood transfustion today-which surprised us b/c we thought she'd do much better than Timber since Timber was the one being deprived of blood and nutrients.

They have started to develop personalities and it's so neat to watch! I think Timber will be the relaxed, calm baby and Tinley will be just the opposite just like her momma! Timber is pretty calm during her diaper changes and temp checks. Tinley likes to "throw a fit" when the nurses mess with her! Our "fit throwing" is so very diffferent than most babies. They can't cry with their vents in, so their way of showing us they don't like something is by "dropping their sats" and their heartrate elevating.

Tests & Possible Complications:

They start telling us about all the tests they run and complications we may face. Breathing problems, heart problems, brain bleeds, infections, anemia, vision problems. I had good hopes of getting out of here with 2 healthy babies, but after they've told you all that can go wrong, you begin to wonder, how can you escape with no complications! It seems nearly impossible!
I start reading about some of it and freak myself out! Now I refuse to really even listen very closely b/c I really don't want to even know unless it is affecting us.

When they are 1 week we, they start getting head ultrasounds to see if there's any bleeding in the brain. Timer's comes out normal, but Tinley looks as though she has a Grade 2 brain bleed on one side. The dr's tell us not to worry, usually these fix themselves, if it was a grade 3 or 4, we would need to be more worried. The following week, they tell us a Grade 2 on one side and a Grade 3 on the other. Discouraging news, but we can handle this. Week 3, the brain bleed is now a Grade 3 on both sides. So many questions and unknowns now! And we won't know what, if any, long term effects she'll have. Or if the bleeding has even stopped! We'll have one more big ultrasound July 16.
Brain bleeds happen in premies b/c the in their blood vessels aren't fully developed and are very fragile. As babies get older, the blood vessels grow stronger.

July 8-they have their first vision tests for ROP (retinopathy of prematurity). ROP is improper growth of the blood vessels on the retina-when babies are born early, the blood vessels may begin to grow so quickly that the growth damages the retina. We PASS the first test!! They begin to test every week to make sure things are okay. 

July 12-the doctor calls me early, early in the morning and says they have started Tinley on antibiotics, she looks as though she may have an infection. He calls her "lethargic" and "very weak." The day is choas! Nurses, the doctor, and the respiratory therapist are gathered at her incubator checking blood gases, doing chest xrays, checking her tummy, pumping her full of fluids b/c she hasn't urinated at all-just all kinds of madness!  She's put on a different breating machine called an oscillator (??)-that basically keeps her lungs open all the time. Her heartrate is off the charts-200+ and many times 220-230! Normal is 160-180 for her. Hardest day here so far! So scary b/c obviously with this much attention, she's very, very sick!

Our "temporary home"

We moved a camping trailer in the parking lot of Mercy. Let's just say-living is tight! The first couple of weeks we couldn't get the fridge or hot water to work without tripping the breaker. We were showering in the family waiting room....not fun!! And trying to keep breast milk cold at night with no working fridge was getting old! Thankfully, we have fixed the problem now. We decided to bring Ruffin up. It's been nice having him-we'll take him walking around The Greens and play in the parking lot. Gives us a break from that tiny camper and the crazy hospital room!

Our complicated pregnancy story...

Just a little update on how everything is going! As our girls turn 1 month old, it's hard to believe we already have the first month past us! I'll start from the beginning as we've had many people asking questions on how this all started....sorry for those of you know the story!

At 18 weeks, we went in for our first ultrasound appointment with the specialist. We were so excited, thinking this would be an easy pregnancy and glad to be expecting twins! After the doctor ask a few questions, she said she needed to meet with us in the consulting room. We knew it wasn't good news by her reaction. In that appointment, she told us we had a very rare condition called TWIN to TWIN Trasnfusion Syndrome (a condition where one baby "donates" blood & nutrients to the other baby). The donor baby becomes weak and anemic, the recipient becomes large and overloaded which can lead to major heart problems. She told us we needed to get to Houston that night-she'd already made us an appointment for 9:00 a.m the next morning. By Friday, I had hours and hours of ultrasounds and LOTS of pain from all the fluid build up. The doctor decided laser ablation surgery (surgery that uses a laser light to close the blood vessels shared between the babies) was the best option to save both babies (without treatment, there was an 80- 90% chance we would lose both babies).

This was the best I felt in weeks! The fluid build up was killing my back and kidneys! They removed 4.4 lbs of fluid!

Leaving the hospital feeling like a new person!

The cute heart shaped bandages! The nurses do these for the kiddos!