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 him...so 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.

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.




Addison




Addison




Blake





Blake



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" feedings...as 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



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

Nicknames-
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.

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 ;-)



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 working...lol.

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



Addison



Addison waving "Hi"

Addison "Tada"

Blake doing what he does best.

Blake still sleeping.

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.