What a Difference a Week Can Make!

What a difference a week can make...Bennett is a totally different baby!  He is the happiest guy in the world compared to when we brought him home.  He is talking up a storm and loves to smile.  I think he is going to be a little flirt!  He is much less sensitive to stimulation and now really only cries when he is hungry or tired.  It is the best feeling in the world to now be able to comfort him!

We went to the pulmonologist last week and were able to take Bennett off of one of his diuretics and we are now trying to wean him off his oxygen!  He was off for a hour the past 2 days and 3 hours today and did GREAT!  For the first time today I got to carry him around the house without a leash!  It was a surreal feeling to say the least.  While he had his oxygen off he even ate a entire bottle on his own!  I am so proud of him!

No tubes!!!

We have been working on Blake's sleep schedule the past week as well.  It was a rough start with tons of crying, but now his is going down with much less drama during the day and generally puts himself to sleep at night.  It's so nice for him not to scream for an hour or two at night.  Since we have gotten him in a better sleep pattern he is eating better and sleeping longer at night.  I am waiting for the night that he doesn't wake up at all...hopefully that will come soon!

Just like dad!

So tired!

On Friday I got to welcome little Madelyn Claire into the world.  My cousin Meredith and her husband Bryen had their first baby girl and she is ADORABLE.  I know there will be many photo sessions of her and the boys in the near future!  I hope that she and the boys grow up as close as Meredith and did, more like sisters than cousins.

Yesterday we found a nanny that will be coming a few days a week to help me with the boys and housework.  She seems very nice and I am so thankful that I will get to have her help a few days a week.  I have gotten more comfortable with taking care of the boys by myself and I know I can do it, but a extra hand is always welcome.  When you are by yourself with the babies it's pretty much nonstop baby all day long.

This past week something clicked and I finally feel like a mom.  I feel like I know what the boys need and when they need it and the best part is that I am able to comfort them both!  Right now life is good!

The Circus is in Town!

If there was one way to describe our life for the past 2 weeks it would be that our life is a circus, Blake and Bennett are the ring leaders and Jason and I are the dancing ponies!

There is never a dull moment at the Warner household.  A baby is either crying, eating, puking, sleeping or needing a bath.  Sometimes they will entertain us with a coo or a laugh :-)  Since we have brought Bennett home both boys cry uncontrollably at the drop of a hat and sometimes you never know why.  Then there are other times when they are so darn cute and talk up a storm, but I think they do this so we don't ship them off to military school before they are 1!

Part of the trying moments are working with Bennett to try to get him to adjust to being home.  Most of the time we are walking on eggshells around him because you never know what will set him off into hysterical crying and you never know how long it will take to calm him down.  The little toot is happiest at the doctor's office since that's all he has ever known!  It is taking some adjusting from having a baby like Blake that you can just pick up and go with to having a baby like Bennett, that for a lack of a better word, has a leash.  We have to constantly be aware how much oxygen tubing we have to move with, if he is hooked up to his feeding pump/oxygen monitor/apnea monitor, etc.  We are getting better about being more mobile with him, but there is more of a learning curve than you would think.  He has made huge strides in the past week adjusting to the different stimulation of home, but there is still a ways to go.

Currently Blake is fighting sleep and can take up to 2 hours to get to bed.  He will cry so long I think he forgets what he is crying about.  He isn't a big pacifier baby so there isn't much to calm him but walking, rocking and patting.  Jason and I are currently reading a book on healthy sleep habits for twins and will soon be trying to get him to go to sleep in a much more peaceful manner.  The other day I found Jason carrying him around with earplugs in just to help lessen the ear piercing cries!

Yesterday we took the boys to their 4 month well appointment.  Blake weighed 14 pounds 2 ounces (38 percentile), was 24.5 inches long (36 percentile) and his head was 43cm (70 percentile).  Bennett weighed 12 pounds 1 ounce (6 percentile), was 23 inches long (3 percentile) and his head was 39.5cm (4 percentile).  It was our first outing with both of them at the same time.  It went much better than I anticipated.  They both slept in the car which was a lifesaver!  It took us about 30 minutes to get our stuff together and feed the boys after we saw the doctor, but they were kind enough to let us use the room as long as we needed to.  I have gotten quite handy at feeding Bennett through his G-button in his car seat.  We have a strap we use to hang his bag from the car seat handle and his pump is small enough that it will fit in his car seat with him...he finished his lunch on the ride home!


I was brave this week and with the help of Jason, Meredith and my mom I was able to get a few pictures of the boys.  I have discovered I am not as good with moving subjects, but hopefully they will learn to pose when they see me with the camera!  When they are this cute how can you not love them!

As a family we are all adjusting to having Bennett home, having twins and everything that comes with it.

Picts from Bennett's First Week Home!

Here are some of the pictures from Bennett's first week at home.  I wish I had more, but it's been a little hectic!  I really need to get some of them when they are wearing matching outfits, but someone seems to make a mess of their outfit before I can get the camera out or they aren't awake at the same time and I'm for sure not waking a sleeping baby at this point!  ENJOY!

Happy Boys!  This went much better than the 1st time in the NICU!

CHOW TIME!

First time in a swing!

Blake during one of his sweet moments this week.  He was happy to have his brother home at first, but now we aren't so sure!

Blake talking with his Mia.  She got to spend some quality time with Blake while we got use to working with Bennett!

Blake LOVES his Mia :-)

Uncle Jake and Blake watching TV

Blake showing Bennett the ropes

The boys watching Bennett's mobile.

Holding hands!  So sweet!

Where did the week go?

I only have a few minutes to post before the craziness ensues again...at the moment they are quiet and sleeping in their swings!

The past week has been very different than I imagined.  I thought we would bring Bennett home and he would fit right into our routine.  I should have known different...We have all had to fit into Bennett's routine, the way it has always been!

It has been wonderful to have our boys together and I love to sit and look at them when they are next to each other or put them in a crib together and watch them interact (sometimes it ends up with one of them hitting the other in the face and then the fun is over!).  I even said I would never dress them alike, but I must admit that it brings me extreme joy to see them in matching outfits!  They are just too darn cute.

Bennett had a rough start at home.  The day after we brought him home he started eating less and screaming uncontrollably every time we would feed him.  It got to the point I didn't want to feed him for the wrath that would soon ensue.  We changed his formula after a few days and that has helped a ton. He is back to our happy boy again who gets crabby from time to time.  All Bennett has done for the most part is sleep, sleep and sleep some more.  We have to set our alarm to wake up and feed him and some times he doesn't even wake up for that!  He is currently very sensitive to stimulation (even silence) and you have to move very slowly with him anytime you touch him.  He has gotten better over the past few days, so I hope it's just an adjustment to being in a different environment.  The baby I brought home from the hospital was not the baby I knew in the hospital, but he is starting to return!

Since Bennett has been home, Blake has not liked the fact that he is no longer a 'only child'.  He use to have a bewitching hour about 6pm everyday, now it just lasts all day.  He managed to run off 3 family members who were babysitting for us the other night in no time at all.  I don't think they will return unless I hand them a Valium at the door!

This week is loaded full of appointments for Bennett.  Today we are going to feeding therapy, tomorrow Early Childhood Intervention is coming to assess him and then they will start sending OT and PT to the house to work on therapy for his arms and feeding, Thursday we are going to Children's in Dallas for a appointment to get his arms looked at/splints made/x-rays taken and Friday is a well appointment for both boys. 

It will be August before we can turn around.  With twins it feels like our life is in warp speed.  It may have something to do with the extreme sleep deprivation.  If you can function on 4 hours of sleep broken into 30 minute segments please give me some tips!  Jason and I are both scared for him to go back to work next week.  I don't know how I will take care of both of them by myself and he doesn't know how he will function at work on such little sleep.  I'm sure we will figure it out and hopefully look back and laugh someday, although there was a lot of laughing yesterday out of pure exhaustion!

All in all it is great to have our family together.  We are beyond exhausted, but one smile from the boys and we forget all of the craziness for a moment and remember how lucky we are!

**I will upload picts later, have to get the peanuts ready for a busy day!

The Best Day EVER!

Bennett got his G-button Friday and this surgery was a much better experience than the last one.  They charge nurse let us pick the nurse that would have Bennett the day of his surgery and we made sure the doctor had orders waiting for him when he came back from surgery so we wouldn't have to wait for him to get pain medication.  Bennett came back to the NICU on the vent because he wasn't awake enough yet to breathe on his own, but within a hour he was off the vent and doing great!  He has had more pain after this surgery, but understandably so.

Yesterday morning about 10:30am I got the call to come pick Bennett up from the NICU!  We weren't prepared and Jason was at work because they told us he wouldn't come home until today, but there was no way we were leaving him there a day longer than we had to.  We finally got him home about 4:30pm yesterday afternoon and it made for one of the best days of our lives!

Jason and I knew we had twins, but the past 4 months have been like having 2 single children.  We had no idea what we were in for when we got them both together.  We had a few family members over for dinner last night and 2 little babies kept us all busy.  After dinner I asked my mom to stay the night and help us get settled today.  Jason and I focused on Bennett and getting all of his equipment squared away last night and my mom took care of Blake.  I'm not real sure what I will do when I am here by myself, but I know it will be better than having to go to the NICU everyday!

1st Graduation!

"Aunt GiGi" (one of Bennett's favorite nurses) did not want him to go

Time to say "Goodbye".  This is Vicky...she put in Bennett's PICC line after he had been in the NICU only a few days

First time outside!

We are so proud of our little guy!!

Gwen is one of the nurses in the NICU that made the entire experience as good as it could be.  She was always there for us.  I hope that I am as good of a nurse to my patients as she was to us!

First car ride

Our boys are together again!

"Ummmm...Dad I thought we left this guy somewhere??"

Hunter did not know what to think.  He has a hard time watching after both babies at once!

Holding my boys together for the first time!  The best feeling in the world :-)

Blake was worn out after all of the excitement!  He has gotten so big...

...look how little he was the day we brought him home!

Bennett spent his first night at home in our room!  He is a much quieter sleeper than Blake!

It has taken 4 of us today to feed the boys, change diapers, put them down for naps and try to organize all of Bennett's equipment.  This is our first moment of silence...Bennett is in his swing wide awake (there are too many new things to look at like celling fans!) and Blake is taking a nap in his swing. 

Our mini NICU...oxygen, feeding pump and oxygen monitor.  This was our first moment of silence today.  I just sat and stared at them.  I still can't believe they are together!

Yesterday and today rank in the top 5 days of my life.  I never thought I would be so excited and it's hard to stop looking at both of them in the same room at the same time.  When we left the NICU yesterday afternoon I got one big final reminder of how lucky we are.  A baby that has been in the NICU for over 6 months, and who's dad I see frequently when we scrub our hands before we see the babies, went home to heaven.  She had had a long battle with lung issues and was a twin as well.  I don't know all the details of her story, but it hit a little too close to home.  Anytime I feel overwhelmed I'm going to stop and think of that family and know that they would give anything to trade spots with us and I am so thankful we are not in their shoes because we very easily could have been.

The next few weeks will be crazy, but in a good way.  We get to move on with our lives and have our boys together.  We have quite a few doctor appointments over the next few weeks and hopefully we will have a routine down in the next month.  I feel like the luckiest person in the world that all of our prayers have been answered.  If we have gotten this far we can do anything!

Plan C...

Yesterday was full of emotion and decisions to make.  For the short version of the story a few road blocks popped up in getting Bennett to the facility where he was to be admited for the feeding program we were going to try.  Jason and I had to take a step back and reassess our situation with Bennett getting a G-button verses coming home with a NG tube.  We both felt that God was trying to tell us something with the hurdles He placed in our way and I have prayed that He would guide us to the right answer.  I feel like He was screaming at me yesterday and since I asked for it I felt like I needed to listen.  I guess what I am trying to say is Bennett will be getting his G-button tomorrow and coming home "soon".  Unfortunately he will have to have general ansthesia and get intubated, but they assure me the procedure will be quick thus giving him the best opportunity to come off the vent quickly.  I just hope I don't have to see him on the vent for the second time in his life...it will break my heart.

This decision has been the hardest part of this entire process...harder than staying in the hospital for 10 weeks, harder than him having surgery a month ago and harder than watching him grow up in the NICU.  Everything prior to this just sort of 'happened' and we weren't given options.  I guess this is where the tough part of being a parent begins.  I feel like every decision we make could change his life and I want to make the right choices for him.  We feel this decision will allow our family the least amount of stress while giving Bennett all the time he needs to learn to eat.  My next obstical is coming up with a good story for him to tell if he still has this button when he is older and other kids ask what it is...I'm leaning toward something in the superhero genere!

Please think of Bennett tomorrow and pray that all turns out well, he is able to get off the vent quickly and that he is able to be home with his family in a few days!

Plan B!

Well we finally came to a point where we had to make a decision and we decided to try the inpatient feeding program at Our Children's House at Baylor versus getting a G-button at the current moment.  Bennett's reflux seems to be better since they changed his formula, but the formula is so thick and harder to digest (I'm sure there are a few other reasons too...) that he still isn't eating well.  His feeding tube went back in on Sunday because he was eating less and less again and he was getting more and more tired.  Bennett has finally convinced us that he may in fact need a G-button, but this will be our last attempt to avoid it.  Originally they wanted us to commit 3-5 weeks with them and I think that is the main reason we were so hesitant.  I called them this morning and told them we couldn't commit that amount of time due to emotional, psychological, physical and financial reasons, but that we could give them 10 days of inpatient therapy followed by outpatient therapy twice a week.  They agreed they could work with that time frame and agreed to send him home with a NG tube (tube in his nose) while we work with outpatient therapy to buy him a little more time.  I know the doctors we are currently with think we are insane...his pulmonologist in fact refuses to take care of him if he is home with a NG tube so we will have to find another one before we leave the hospital.

We are not against getting a G-button (feeding tube surgically place in his abdomen) for Bennett if that is what he needs, but we feel that we need to give him every opportunity possible to avoid surgery again.  I know someday I would have to explain the scar on his stomach and I need to be able to tell him that we tried everything possible.

So what this means for all of us is Bennett will be transported to Dallas on Thursday, I will move in with Bennett until he comes home next Friday, Jason will take care of Blake when he is not at work and our marvelous friend Laura will watch Blake while Jason is at work during the day.  I don't know if it truly takes a village to raise other people's kids, but it sure does for ours!

I finally feel at peace with this decision and I know it is the right decision for us!  The best part of us moving Bennett is Blake can come visit him...I finally get to see my babies together since they were 3 weeks old and hold them together for the first time...something I have been longing for since they were born!  It will be a great week!!!!

Bennett on the 4th of July...he fell asleep in his bouncy seat watching his Baby Einstein DVD!

Bennett and one of his FAVORITE nurses Gwen!  I know when she's taking care of him that he gets the best care and most love possible!  She is his Aunt GiGi :-)



Mom and Blake cuddling on the couch



Mom and Bennett having some quality time!

Time for Progress

Last weekend they started Bennett on a new formula for reflux and it really seemed to make a difference.  He started to eat more and at times was eating more than he had to.  They did a pH probe study on him on Monday to assess his reflux, which came back "with in normal limits".  He had 36 incidences of reflux in 19 hours, but the pH wasn't low enough for them to be open to giving him medication.  I am so thankful that the formula helped, but the only problem is they can't make it as high in calories as he needs because it gets too thick which means he has to eat even more and the past few days he hasn't been able to do that.  He needs to be eating 100-110 ml at every feed and he is eating 80-90ml.  They also want him to eat it in 30 mins and it is taking him 45 mins to get 85ml down.  He is so close, but at the same time so far away.  It's a lot of work for him to eat with the condition of his lungs and the NICU has exhausted all of their resources to help him.  Baically the plan is Bennett either eats or he gets G-Button.  The doctor was hopeful that he would come home this weekend and gave us the second "warning".  She even had all of his oxygen and monitors delivered to the house yesterday.  There is no way he will be home this weekend or in the next week for that fact.  It's hard to get excited any more when they tell us they think he will be home since we have heard it so many times.  I told them I don't want to hear he is coming home until they have set him on the curb and call us to come get him...I was joking, but not really!

Bennett with his pH probe...he was still a happy little guy with all that stuff on him :-)

I have now reached the point that we all, including Bennett, need to move on with life and I don't feel like that is going to happen in the NICU.  There is no way I can let them put a G-Button in him in the NICU without a second opinion and we can't get a second opinion without leaving there.  The only place for us to go is Our Children's House at Baylor in Dallas (about 50 miles from our house).  They have a successful intensive inpatient feeding program.  There are a few down sides to moving him to this program.  He will be in a private room, so unless one of us is there he will be by himself most of the day, it takes a hour to get there without traffic and we all know the price of gas, and Blake could not stay at night (but he could come during the day which means I could see my boys together for the first time since they were 3 weeks old!).  We are willing to do what we have to do to get Bennett the care he needs, but this new program will be a struggle for our family.  The good news is they do send patients home with NG tubes to work in the outpatient program, their goal is to get kids home as soon as possible without a G-Button, and their speciality is feeding.  If they can't get him to eat the amount he needs to then I don't think anyone can.  Jason and I are giving him until the middle of next week to try to do it on his own, but if we are in the same place we are now I have a strong feeling we will have to move forward and try something else.  It's time our family is together!

Daddy and Bennett during their visit today

Hunter and Bailey with 'their baby'.  Hunter is always where Blake is...he even cries when Blake is upset.  It's really sweet!

We are making progress on finishing the nursery.  Jason made the letters above the boys beds.  They turned out so cute!



Blake on his play mat that provides hours of entertainment!

Tummy Time!  Not his favorite time of day!