Tuesday, April 26, 2011

One day it will just click...

This is what the nurses kept telling me when it came to trying to get Blake to drink from a bottle. I will admit after the first 6 attempts I was starting to feel a little...discouraged...and let me just tell you (not that I am one to brag but) BLAKE TOOK HIS ENTIRE 6PM FEEDING FROM A BOTTLE. ALL 49 MLS (ALMOST 2 OZS). Talk about one proud Mommy!

I had some help from his AMAZING nurse Jill today, she gave me some really good pointers to help us both out. And even showed me the "right" way to burp a preemie. (Who knew you shouldn't put them on your shoulder? It makes sense because you can't see whats going on.) But I am so glad she showed me a much better way to burp him because I want to know if he is spitting up or having issues and this way he is right infront of me. I really think that not only did it just click, but the patience and helpfulness that Jill showed us, is really what got the job done. AND it was so awesome, once he was finished Jill stood up-empty bottle in hand- and shouted to the whole NICU "Blake just drank his first bottle!" Everyone clapped and cheered, Blake smiled as if he understood and Addison...she coughed as if to say "Where's my bottle?"

Speaking of Ms. Addison, the goal for her this week is to ween her CPAP support. So far she is alternating HiFlo Cannula for 16 hours and CPAP for 8 hours. The plan is to decrease CPAP time by 2 hours everyday. As far as bottle feeding, it's still on the back burner because she is now on continuous OJ feeds (her feeding tube has been pushed furthur down past her tummy into her small instestine to try and combat the reflux.) She will have to continue OJ feeds for atleast another 2 weeks and then they will try to move the tube back into her tummy and go from there. OH and she is now in a big kid crib like her brother. And I must say, she is not very cuddly...she is very independent and prefers to be left alone STILL, no matter how much Mommy wants her to cuddle. Boo for that but it's ok, I can settle for some girl talk instead lol.

Their space is pretty much done here at the apartment, cribs are up and linens are clean and in place. Just more laundry and finishing touches to put together. We really need to work on finding dressers that Daddy approves of, he is being extra picky about this for some reason. Lol. Once we have a place for all their clothes I think we will be set.

And that pretty much sums things up for now.

Our next project is CPR classes for us and the grandparents as well as a family meeting at the hospital with the doctors to go over what to expect when bringing home not one but two preemies.

Thursday, April 21, 2011

Just when we thought the end was near...

Last week things were looking so promising. We were getting very excited and looking forward to having the babies home, and naively thought that would be happening sooner rather then later. Things had progressed in leaps and bounds.

Until Saturday night...I was holding Addison and got up to put her back in the isolate. She was on the nasal cannula at the time and from the humidified air that it pumps thru, some condensation had gotten in the tube and flooded into her lungs. Suddenly she Brady-ed and went blue in my arms. (In a sense she had just been drowned by the stupid cannula). It took quite the effort and a lot of time for Addison to get herself together. The Nurse Practitioner immediately put her back on the CPAP and we realized we were > < this close to having our little girl back on the ventilator. I have seen a lot of things during our NICU journey, but by far this was more then I could handle and I suddenly felt at my weakest point.

From there things snowballed downhill quickly. Addison had several more episodes of Bradys throughout the night and into Sunday which required vigorous stimulation and several "baggings" where they had to resuscitate her. Late Sunday night we were being cautioned that we could be looking at NEC (a various serious GI infection), but the only thing to do was sit it out and wait. All of her feedings were stops and antibiotics were begun immediately.

By Monday the doctor said that her condition had improved although she still wasn't 100%. His concern was very serious reflux so in effort to counter act that, they decided to push her feeding tube down further into the beginning of her small intestine and begin "continuous" feeds (meaning she receives 33mls over 5 hours continuously rather then 33mls at once every 3 hours.) He told us today that he noticed she is still refluxing, so medication for it may be in her future. In the meantime her feedings will continue like this for at an absolute minimum of 3 weeks, which is a huge set back and means that it will be the very least that much longer before she can come home.

Blake has been put back on a rotation of CPAP 6 hours a day to help with lung expansion and they are both still having small issues with fluid on the lungs, which is being treated off and on with Lasix.

In the midst of all of this though, there has been a silver lining. Both babies brain bleeds are officially "resolving" (including Blake's who had actually worsened a few weeks ago). And they both passed their eye exams with flying colors. Not to mention Blake is now in an open crib.

As  NICU mom, all you can do is take the good with the bad and just keep moving on.

Thursday, April 14, 2011

Two Months Old !!!!!

That's right today our miracle babies turned two months old. It seems like just yesterday we were being rushed to the OR to deliver and our future was so uncertain. I think tonight I have a huge case of the baby blues for some reason. I think a lot of it is because I am so anxious to just have them home already. I have had enough of the running back and forth and the constant ups and downs.

Today they put Blake on the regular flo cannula. Which basically is just like what they use on adults or other people who need minimal oxygen support. He is still at 1 liter...we need to get to .5 liters to be "allowed" to come home on oxygen (provided he has met all other requirements), but this is a big step in the right direction and there is a great chance he could come home withouth needing to be on oxygen. They discontinued his bottle feeding because they don't feel like he is ready. I am trying to trust the doctors on this but I am not feeling comfortable with that choice. It was a once a day thing and it wasn't really "hurting" him, I guess he could have done "better" but I thought he was handling it well enough. So now it will probably be another week before they let him attempt it again. Whats really odd it that he is still allow to "nuzzle" while we feed him through his feeding tube as long as I have pumped prior. But it is what it is.

They have made no real changes with Addison. So we just keep right on trucking.

Their weights are currently 4 lbs 8oz for Blake and 3 lbs 14.5 ozs for Addison.

Heres a look at our time in pictures....

Addison at birth

Addison 1 month old

Addison 2 months old

Blake at birth

Blake 1 month old

Blake 2 months old

And one more because I just couldn 't resists. This melts my heart.

Wednesday, April 13, 2011

Leaps and bounds

A week ago we were sitting in the NICU with two babies on CPAP. Tonight both of our angels are on the HiFlo Cannula. (Addison is currently on a rotation of HiFlo for 6 hours at 3 liters and then CPAP +4 for 3 hours. Blake is on 1 liter of HiFlo continuously. And both are doing fabulous.)

We are now also attempting "real" feedings with Blake once a day. The first two attempts were not so great, the third was AMAZING and he took 1/3 of his feed from a bottle and then today was not so hot, but we are working on it.

They are both now on "manual" isoletes and able to wear clothes.... all of that being said I dont know what excites me more. Last week I went from feeling like things were at a stand still, to over the weekend seeing and feeling like things just snowballed and took off. I know for sure these babies will be home in no time at all.

That is literally the short version but I will leave you with pictures showing all the progress...

I love this pic of Addison...melts my heart

Outfit courtesy of Nana

Her first outfit...from Mommy and Daddy.

Loving her sleeper from Grammy and Pop Pop

Very true statement ;-)

Grandmom (Nana's) little guy!

Monkey Love from Grammy and Pop Pop

And of course his first outfit...from Mommy and Daddy.

Thursday, April 7, 2011

4 years ago...

I married the man of my dreams. We both had so many wishes for our future. As the clock struck midnight and the date changed to 4/7/11, we both knew all was right in our world. All those wishes had come true.

Thank you to my wonderful husband and the two greatest kids a Mommy could ever ask for. I am so glad that we shared that moment together at midnight. There is nothing more precious to me.

Jake you have been my rock through thick and thin. We've had our fair share of ups and downs along the way, but we've made it. Our journey together is far from over, but I am glad to have you by my side to travel it. Here's to our next anniversary, with the kiddies home :) .

Tuesday, April 5, 2011

More good news :-)

The results are in from Blake and Addison's head ultrasounds. Addison's is continuing to resolve (Praise God) and Blake's is "getting there". One of the ventricles that is effected has started to shrink (Praise God) and the other is just a tad larger BUT the Neo and the Neurosurgeon both agree no intervention is needed at this point, and their is still hope that it could all completely resolve on its own!!!!! Very blessed to have such wonderful news again today. And (gasp) I heard a rumor that the Nasal Cannula is going to be used tomorrow...on Mr. Blake. Please say a prayer that he is really ready for it this time and we can work on getting him off CPAP for good!

I am trying to very hard not to get my hopes up too high, but once he is on the cannula then home isn't THAT far off the radar. (And realistically it's not that far off for either of them anyway.) Can you believe in less then a week these miracles will be two months old and our NICU journey *should* be 2/3rds of the way over? I am still trying to grasp that concept.

I know many of you have asked me the question, "What needs to happen for them to come home?"
Well there are a few things...
1.) Be able to maintain body temp. (they are both close enough to the weight requirements that if their temps stay consistent for a few days they will change them to manual settings on their isolates, monitor their temps and again if consistent try them in an open crib.)
2.) Taking full feeds by breast and/or bottle. (Every feeding, the full amount, without having any Bradys or destats. And still gaining weight.)
3.) Pass a car seat test. (Being able to sit in a car seat for an allotment of time without having any Bradys.)

The optimal goal is to have them both home without oxygen support and without a heart monitor, however needed those two things or one of those two things does not stop a home coming. All of this could occur earlier but will more likely be closer to my actual due date of May 23rd.

I feel like right now we are at a crossroad. The end of our NICU time is so close, yet seems so far away. I keep trying to tell myself it's not that much longer, it's really not that much longer.

And when they do come home we will have a whole new journey. At home it will be our job to protect them as best as we can from being exposed to germs that could cause illness. To do all of this we will have to limit visitors and set very strict guidelines for any who visit. We have already been cautioned to avoid school aged children and ANYONE who is remotely sick or been in close quarters with anyone who is sick. We know and appreciate that everyone will be eager to meet them, but we hope that everyone will understand that the first year is the most fragile. What may not bother a full term baby or even an adult could result in another hospital stay (or worse) for our little ones. 

While I am sure small exceptions will be made (mainly for their Christening), this is not something we can really budge on. The holidays this year will be exciting and tough all at the same time, because we will be on lock down for all of RSV season. But it will be worth it in the end to keep our babies as healthy as we can.

Anyway, that's all for tonight. I am actually going to enjoy the little bit of "extra" time I seem to have today and get some sleep.

Monday, April 4, 2011

Way to go!

Ok so lets recap...I actually heard the Nurse Practitioner say "Blake and Addison had a good night and have remained stable," for THE VERY FIRST TIME EVER!!!! Can I just tell you how absolutely amazing that was to hear? We are so proud of our munchkins.

Blake is on CPAP still, but his pressure settings have been lowered and he seems to be doing well with it. We might be retrying the nasal cannula later this week (and hopefully after successfully mastering that, we will be moving on to breastfeeding and/or bottle feeding!!!!!!!). It's soooo close!

Addison was moved off CPAP and put on something called SiPAP which is very similar to the CPAP, except in addition to the constant pressure air it also is currently giving Addison 10 extra "puffs" of air every minute. She had tolerated this much better then CPAP and they are hoping to cut those 10 extra puffs out and get her back on regular CPAP by the end of the week.

Last Thursday we were told that they thought Addison had an abscess forming under her chin, after blood cultures, a spinal tap, antibiotics, and ultrasound of the area...24 hours later they determined it may have just been cellulitus. And "whatever" it was, was none existent by that point. I am glad that they are so proactive but I really wish that EVERY time they *think* something is off kilter they would not do a spinal tap. However it is protocol and much better to be safe then sorry I suppose.

In a previous post I believe I mentioned the twins had brain bleeds (common in preemies.) Addison was by far the worst but has remained stable (she had another head ultrasound today, but results are pending). Blake's is in his ventricles and over the past weeks has grown, not by much but it's growth none the less. Right now they aren't too concerned and don't feel there is need for intervention, and they even got a second opinion from the neurosurgeon who agrees. So for now we "wait" and pray that it will resolve on its own.

Weighing in...
Blake is now 3lbs 15.5ozs
Addison is OFFICIALLY A MEMBER OF THE 3 LB CLUB...at 3lbs 3ozs!!!!!!!!!
****One of the doctors has a rule, once you hit three pounds chances for infection, etc go WAY down! Yay Babies!***

What else can I say, besides we are blessed. THANK YOU to everyone who has been praying for us. Please keep those prayers coming because they are working!