Wednesday, March 30, 2011

Weighing in...

Well, looks like we've got some "growers" on our hands.

Blake has officially joined the 3 pounder club and now weights 3 lbs 8 ozs tonight.
Addison is a pound behind at 2 lbs 8 ozs, BUT she has always been the smaller twin and the steroids she was on also causes a decrease in weight and/or slower weight gain.

Addison took her last dose of steroids last night. They have warned us that she could take some steps back but we pray that if that does happen those will be just small steps that she will rally and over come once again. She is by far a hell of a fighter and determined to prove everyone wrong.

Both Blake and Addison are dealing with reflux, which leads to destats and bradys with feedings or shortly after. Holding them upright during feedings helps, but there are too small to hold them at every feeding. And speaking of holding while feeding, while holding Blake today he decided to really cut loose. The child smelled soooo bad that I actually asked the nurse to take him back so I could change bad that even Blake held his breath. That was one diaper that really should have been for Daddy...I am so sorry he missed it, lol. For such a small baby, WOW, is all I am going to say.

Blake also let us know he isn't quite ready for the nasal cannula full time, which is ok with me at this point. He still has a little ways to go in his growth and the bigger they both get, the easier it will be to make that transition.

Other then all that things remain stable. It seems we've reached the plateau part of our NICU stay, and I am going to sit back and enjoy it for it is long over due with all the ups and downs.

Thank you for all of the prayers and please continue to pray not just for us but all those in need.

Sunday, March 27, 2011

Mommy's always right. (Well most of the time.)

Notice Blake's "Pink Eye"
So the other night while visiting the babies, I noticed baby boy's right eye was red and swollen. I mentioned it to the nurse practitioner and she said she would keep and eye on it. Her thoughts were that it was just a positional thing from the CPAP and laying on that side...well guess what, poor thing has STAFF in his eye :-( The good news though is that its "normal flora" meaning it's not anything serious. But I still feel bad for the little guy. They are starting him on eye drops as a precaution. At least they listened and didn't just write me off as an over protective mommy.

The real love of his life.

In other news both babies are developing mild reflux, but we have discovered that if Blake is held upright during feedings and not really wiggled around for a while after, he is much better off and doesn't have any Brady episodes. Addison unfortunately is on continuous feeds at the moment so it's impossible to hold her all the time (although I would enjoy that.)

Daddy got his first smile from the little angel today, and I am pretty sure it brought tears to his eyes. It's amazing how complete we feel just sitting there holding the babies. (I can't wait to have them home.) I also can't wait to have them off the damn CPAP, they both hate it especially the prongs, they tolerate the masks much more but they have to rotate to help prevent their nose/face from permenat indentations.

And now I will leave you with a few pictures of the little hams.





Friday, March 25, 2011

Daddy's little girl...

Both babies are still on CPAP and holding their own. We met with the Neo today and he said that if all things continue to progess in the next two weeks we should be seeing babies on the High Flo Nasual Cannula (intead of CPAP) and when that happens that will also equal "real" in bottle or breast for one feeding a day to start, and it will increase from there as they learn to tolerate it. This is a HUGE step and makes for one very happy Mommy! 

You can really see how much Blake looks like his Daddy...
Daddy and Blake
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Last week Daddy held Blake for the first time and last night he held his baby girl for the first time.
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Blake made presents for Daddy's first diaper!
This is the first time Jake held her. Overwhelming feelings.
Daddy's little girl
Our First Family Photo

Wednesday, March 23, 2011

A lot to share...

Ok so I haven't posted in awhile. Between the internet being down at my house and just being busy, there isn't much time for much else.

Here's what's new...
Current Weights-
Blake 2lbs 13oz
Addison 2lbs 2ozs

Blake - Rascal
Addison - Miss Priss or Princess
These names came from the nurses lol

Both babies are on CPAP, Blake has been on for a week now and Addison is on day two. It took a few doses of the steroid treatment to get Addison ready but she is really holding her own now. I have been having pep talks with her and letting her know there is no turning back now. I think she has figured out that life better without the vent. She now gets daily "snuggle" time, mainly with Mommy but it will be Daddys turn soon.

Blake decided that he would take himself off the vent and pulled his tube out. Meanwhile his nurse just stood there like a deer in the headlights, thankfully the practitioner was standing at Addisons bedside and was able to jump in, along with three other nurses. And luckily Blake really was ready and could hold his own during the confusion. Last weekend Daddy had "snuggle" time with Blake and I mist say they both enjoyed it. So much intact that they both fell asleep.

Addison is still on the steroids but they are weening them down. Now we just pray that she  doesn't slide backwards once she is off of them, which the doctors say is possible. That being said Addison is hardheaded and likes to prove people wrong so I am sure she will do just fine.

Their head ultrasounds...Blake's is "stable" and the doc thinks the growth is just normal development at this point. Addison is officially RESOLVING !!!!!

And I think that pretty much sums it all up. Now l will work on getting my internet fixed to get pics and more updates.

Tuesday, March 15, 2011

A Good Day...for the most part.

Today both Addison and Blake had fairly decent days (and from what I was told they had good nights last night.) I am hoping this keeps up. We still haven't start steriod treatments yet, but that may be happening tomorrow or Thursday. The Neo plans to get Addison off of the Osallatior and back on to the traditional vent tomorrow and see how she fairs with that before going forward.

Ultrasound reports - Both babies had Grade III and Addison had a Grade IV brain bleed that was detected about two weeks after birth, I am very proud to report that as of today it looks as if these have begun to stablize and won't need intervention. After talking with the NP tonight she said she feels confident that at this point they shouldn't need furture "treatment" in the form of a shunt or spinal tap to release pressure on the brain. Addison however has what they call "cystic changes" meaning that scare tissue is beginning to form where her Grade IV bleed started, this happens but what the impact will be on her as far as development if any at all, we won't know until much later.

Tomorrow I have my follow up doctors appointment and I am hoping that I will be released to be a "normal" human again ;-)

Monday, March 14, 2011

One Month Old!

I can't believe the babies are a month old today. They certainly have come a long long way since they were born and we couldn't be more proud. They are the absolute most precious miracles, who give us smiles, laugther and even some gray hair each and every day. We really couldn't ask for anything more, other then to have them home of course. 

Blake at Birth
Blake 1mth old

Addison at Birth

Addison 1mth Old
As for our post yesterday we did come to a decision on the treatment options and were set to begin those today, however the Neo that is on staff now wants to wait and get to know the babies first and really feels like we may not be quite at the point where we need to move forward. So now we wait again. That being said, my visit with the babies this morning went fairly well and both babies were behaving (which doesn't happen often.) We are working on Blake learning that holding his breath so the Pulse Ox alarm goes off is not to be used as a call bell to get ANYONE's attention. So far it's not

And now I leave you will pictures of our love bugs.


Addison waving "Hi"

Addison "Tada"
Blake doing what he does best.

Blake still sleeping.

Sunday, March 13, 2011

There is a reason why I hate rollercoasters...

Doctors, nurses, NICU staff as well as other NICU parents all refer to the NICU journey as a rollercoaster. Filled with ups and downs, good days and bad days. Some days those good days are really good and some days those bad days are really bad, and then of course there are all those days in between. Like being on a rollercoaster, going up is always fun an exciting for most people, but for me I hate it because I always know there is going to be a drop somewhere that may be scary. So even when the babies have good days, I hold my breath and pray that the trip down isn't very long or steep.

Case in point...after what I would call a pretty bumpy week we get to yesterday and things are starting to turn upward again. After Blake's on/off relationship with photo therapy for his high bilirubin count/jaundice his is once again back OFF of photo therapy. Addison's still on the Oscallitor but the doctor believes today she maybe able to come off and go back on to the regular vent. And both babies are back to getting their feedings. Great news right? Right. But here's the "hiccup" the doctor wants to try steroids to help mature their lungs and get them off on the ventilators all together. The catch is that those steroids do not come without their own set of risks, risks that could or could not be caused the steroids in themselves.

All of the risk factors are quite possible with preemies on their own who've never gotten steroids. So the choice is, give them a medicine that could mature their lungs and get them over this "plateau" of sorts and potentially worsen their over all condition at the very least temporarily but possibly for life. OR do nothing, keep praying that their lungs will mature and heal and continue to wait which could also cause it's own issues as far as brain development and overall lung function. This marks the first decision that we've had to make as parents since they've entered the world. But there is some hope, they don't want to start steroid treatment for a week to two weeks and a different Neonatologist will be caring for the twins starting next week. As our current Neo mentions it is possible that he may have a different opinion or idea that could result in the same outcome ( = bye bye ventilators) so he recommended that we discuss it further with this Neo before making our decision.

So until its actually decision time I am going to keep right on praying that God will guide us to the right choice or even make the choice for us. We are asking that are friends and family do the same thing and pray for us. This is one topic that we do not want to discuss in any greater detail with anyone, and we don't want any outside advice on what to do, because at the end of the day we have to be able to live with the decision and outcome for the rest of our lives.

And now I leave you will pictures of  Little Rascal (dubbed this by his nurses)...And of course Princess Addison herself (please forgive her she was a little "dopey" thanks to her Fentanyl drip).

Little Rascal - Blake

Princess Addison - notice she is holding on to the tube hence the reason for the sedative...they really don't want her yanking on that.

And one more for good measure, this your laugh for the day...This would be Jake aka Baby Daddy...passed out while I was in the the breast feeding room at the hospital. Too bad I don't have a sound bite to go with it because I am pretty sure I heard snoring.

Friday, March 11, 2011

Angel's Lullaby by Reba

Midnight moonlight shining through the curtain lace
Paints a perfect picture on your perfect face
One (two) sweet angel (angels) sleeping in my arms
You are the promise I knew God would keep
You are the gift that makes my world complete

And you'll never know how much I love you
But I'll keep on telling you my whole life through
Now I believe in miracles, and you're the reason why
So dream on while I sing you my angel's lullaby
- I just heard this on an episode of Reba and was literally brough to tears. Instantly made me think of Blake and Addison.

Two days later and...

Addison is still "sick"... she is now back on the Oscillator Ventilator because her CO2 levels are elevated and her lungs look worse on her chest xray. In addition to the change, the doctor also added her to yet another antibiotic. This however is a good thing because it means that now she is receiving antibiotics for just about every possible bacteria and now this should set her in the right direction. They are thinking that part of this set back could be because she is or was borderline sepsis. It is so hard to she her back on the Oscillator. It takes me right back to those first few days when she was sooo critical and its worse when she looks up at me with sad eyes as if she is asking me to help her and I can't. The nurses said Ms. Addison was none to happy with this change and has been her feisty self (which is defiantly a very good thing). So for now the plan is to have her back on the regular vent within 48-72 hours... I am hoping for 48 hours (or sooner).

In Blake news...yesterday the doctor was concerned that maybe he had an infection because he wasn't the wiggle worm he can be, and he was having a lot of destats (oxygen level drops below 85 for more then a few seconds). We did dodge that bullet...he is back to his old self, (must have been the rain). He did however decide that he would show himself just before I left to come home for a bit, and had an apnea episode...his heart rate dropped extremely low and he destated. It took what seemed like forever to get him to get with it. What was worse was when it all started his chest wasn't moving and neither was he. Talk about scary for a Mommy. Finally the nurse practitioner fused at Blake and told him, one showoff a day and today was Addison's turn. Then suddenly he decided to behave himself, quite the rascal.

Emotionally as strong as I might seem on the outside, today was hard. And I can't even begin to act like I didn't have a breakdown or two. All I know right now is I just want our babies home with us.

Baby Weights - Addison 1 lb 15 ozs (down 3 ozs from yesterday but this is a good thing because she is on Lasix to rid some of the fluid in her lungs, so it's a sign that it's working). Blake 2 lbs 5ozs (getting closer and closer...almost to the half way point of the 5ish pound weight requirement, among other things, to come home.)

Wednesday, March 9, 2011

No big surprise...

So this morning while visiting the babies, the doctor said that he feels confident that Addison is on the mend. They caught both the pneumonia and the staph infection in time and she is showing improvement. They increased her feeding to 10 cc every three hours and he still plans to try to ween her off the vent by the early part of next week.

Blake decided that he has had enough of Addison stealing all the attention and is trying to tell us he is a big boy. And how exactly did he do this you may ask...he decided to pull out his feeding tube today. His feedings were increased to 14 cc every three hours (so almost halfway to an ounce), and they had to insert a new feeding tube in order to give him his feedings. Silly boy, up to mischief already. (Just the other day he decided to disconnect his ventilator...)

There is also talk that Blake's PICC line may be coming out overnight (bye bye IV's!!!! for the most part). And they will try this will Addison early next week as well once she is done her 7 day course of antibiotics.

For those who are curious, the babies must be able to tolerate an ounce of breast milk at a time, no longer be on the ventilator and be able to "suck, swallow and breath" at the same time in order to be bottle or breast fed. The SSB reflect is said to kick in somewhere around the 32 to 34 week gestational age (for those keeping track the twins adjusted age is 29 weeks gestation.) So who knows that may be happening in the very near future...Needless to say I am beyond excited about that!

Tuesday, March 8, 2011

Infections suck!

Addison now has an infection, the doctor *thinks* it's pneumonia and some of her cultures are showing staph (they aren't sure what kind yet, until they get the final report). Either of these alone can cause HUGE issues, combined it's worse. That being said, Addison is a fighter and loves to prove the doctors and nurses wrong just about every single day. We refuse to count her out...she will deal with this in her own time. In the meantime we will sit back and watch, comfort and pray. She continutes to progress otherwise and they are increasing her feedings. Her brain bleed remains unchanged at this point too. They will follow up on that on Monday.

Blake is...Blake. He is soooo close to "full feeds" of 1 oz at a time. He is also gaining weight and has officially hit the 2 lb mark! The doctor wants to ween his ventilator down and hopefully get him back on CPAP by next week at the lastest. His brain bleed has not gotten any worse at this point, and he has another follow up ultrasound this coming Monday.

As Jake said today for every "set back" or negative thing that happens, there are more positives to find hope and promise in.

How did we get here?

April 7, 2007 we tied the knot after dating for 5 years. We always said that as far as children were concerned "whatever happened, happened" but after three years of "nothing" happening we knew it was time to seek help. We were no longer satisfied begin a childless couple, month after month we felt heartache and pain. So off to Shady Grove we went. (We actually had tried a few other options before even getting to this point, Shady Grove was a last attempt of sorts.) One short IVF cycle later, we got the phone call that we waited three years to get, "Congratulations, you are pregnant."

We knew that there was a chance for twins because we had decided to implant two embryos. (We started out with nine embryos and by the time we got to transfer day only two remained. And no we would not have implanted nine. Two was our limit.) My blood hormone levels were through the roof, and I tried for the better part of four weeks trying to convince Jake that it was indeed twins...I think he finally believed me when we saw that first ultrasound with two heartbeats flickering on the screen.

Fast forward to week 12. I was just outside of the first trimester when I had a bleeding episode that sent me to the ER and landed me on bed rest for my birthday. We were blessed and grateful that the bleeding episode was not a result of miscarriage but rather a small blood pocket that ruptured (common with twins and IVF pregnancies.) Things were going very well after that until we got some blood work results back that showed my AFP levels were elevated, indicating that one or both of the babies could have a genetic disorder.

Two days before Christmas I was sent to the high risk specialists (otherwise know as the Perinatologist or Peri for short) to be evaluated. At that point they could not find an genetic issues via ultrasound, but they recommended we have an Amnio done to get a definitive answer. The risk of miscarriage is 1 in 400 with Amnio, this was not an option to us. We did not need to know, our babies are our babies bottom line. We will love them and give them the best quality of life no matter what. At this appointment we also found out that we were having a boy and a girl. I still remember Jake holding his breath and waiting when they identified Baby A as a girl (he was convinced it was two girls, and as he put it...he'd need all the overtime he could get to pay for bail money when they started dating.) But lucky for him Baby B was clearly a boy.

I should mention that when we got pregnant I very naively though that after all it took to get pregnant, the pregnancy would be a breeze. Clearly I was wrong.

At week 21 I found myself making not one but two trips to Labor & Delivery before we discovered my water had broke with one of the babies (Baby A - Addison). I spent a weekend in the hospital for antibiotics and monitoring. We were told at that point that labor could possibly be occurring sooner then later and that there was a huge risk of infection for both me and the babies. If I went into labor, the babies would not survive...they hadn't yet reached "viability". We were also being told that Addison now appeared to have a heart defect and a disorder known as Micrognathia. The first words out of the Peri's mouth was "consider termination of twin A, it would be better for twin B and then we could test twin A for genetic disorders." And as Jake put it "Hell no. Our little girl is not some statistic or science fair project. She is a living human being, if she decides to give up then so be it, but right now today she has a heartbeat and is alive. Whatever comes our way, she is ours."

I am very happy to say that we were very fortunate to make it to 26 weekson strict bed rest before things got crazy. I spent another three days in the hospital for steroid shots to help develop their lungs just in case...and thank God we got the steroids on board. I was released on a Friday and that following Monday (2/14 - Valentine's Day), I woke up miserable. It was something I could not explain and then the pain started. Nothing and I mean nothing made it go away or eased it, Jake immediately took me in to be checked out. By 7:30 am, I was contracting 2-3 minutes apart. And 10:00 am my OB was standing at the foot of my bed telling me that it was show time and that our twins would be born via c-section by lunch time. We've never been so scared.

The rest was a blur...I remember being in the OR and hearing the doctor call out their birth times 1:10 pm (Addison) and 1:11 pm (Blake). Addison was in the room with me while they had Blake in another OR working on him. Both babies had to be intubated and never even cried at birth. I literally got a peek at Addison as they rushed her out to the NICU. Jake got a peek at Blake on his way to the NICU. It was 5 hours later before I got to meet our little ones for the first time. All I remember was seeing these two tiny little babies with all these tubes and wires and iv's all over the place. I wasn't able to stay with them long because I was still recovering from the c-section (the nurses wheeled me up in my bed as they were taking me to my room on the Mother/Baby floor), but in the time we were there we knew things were not looking so promising, especially for our little girl.

People kept telling us "she is very sick"...thankfully those words later turned into "she's come a long way". It is by far the worst feeling ever being told to prepare for the worse and be ready to make tough decisions in the morning. The biggest blessing to us was finding out the next morning that there were no decisions to be made and our little girl had pulled herself together and rallied. And as for our son...well he was quite the show off and left the doctors and nurses speechless.

Welcome to our blog...

In an effort to better communicate with our family and friends we have created this blog. The plan is to update here as often as possible. You'll find out the status of the twins and there may even be some emotional posts here as well.

Our plan is to save all of this including any comments, to share with the twins when they get older.

Before we get started, here are some ground rules...

1. No negative comments...(we know there is tragedy around us and that not all stories have happy endings. We've already seen our fair share of tears and do not need to be constantly reminded of what could happen or happened to others.)

2. Please remember that each baby is different, try not compare the twins to one another especially when it comes to progress...and please don't compare them to other babies (especially those that are full term.)

3. Do not offer medical or parenting advice (this goes hand in hand with the above two statements.)

4. Feel free to share the link to our blog with other parents or even those who are rooting us along, but if you share the link please encourage they read this first post before they comment, etc.

5. If anyone posts anything that we feel is inappropriate it will be deleted.

6. Please keep us and the babies in your thoughts and prayers...none of us would have made it this far withouth you.

I am on my way to the hospital now, so I will have to post updates later tonight.