Ah Ha Moment!

Last night we had our meeting with Bennett's doctors about his care.  It went much better than I anticipated and I managed to keep myself together quite well.  Basically they kept saying what they have been saying for a while..."Bennett will be out of here in a few weeks".  I have heard that so many times now I can't get excited anymore until I have him in my arms and out the doors of the NICU...aka baby jail.  They really feel that his feeding issues are related to his endurance, or lack there of, from his under developed lungs.  I went along with that theory until today (more on this later).  They are still firm in that they won't send Bennett home with a NG tube unless he is only needing 1 or 2 feeds gavaged a day.  We came to the agreement if he can eat 130cal/kg/day they will send him home on a 27 calorie formula (regular formula is 20 calories).  Yesterday Bennett only ate 80cal/kg/day...not near enough :-(  The pulmonologist said that if Bennett isn't at the point to come home with his eating in 2 weeks that he will more than likely need a G Button.  I told her I didn't think I would be ready to give in to that in 2 weeks, which means Bennett either eats or stays in the NICU.

Speech finally came over from Cook's today to evaluate Bennett after Dr. Simpson wrote the order I had asked her to write 3 times.  Bennett showed his true colors for her and she got to witness him fighting his bottle and basically shutting down and going to sleep.  The speech therapist feels that he isn't eating because he is in pain from reflux.  She is not the first person to suggest this and I have wondered about it myself.  My 'Ah Ha' moment came when she asked me how he reacted when they run his feed through the NG tube.  Honestly I had never thought about it.  After she finished feeding him and they started his feed on the pump I watched him to see what he would do.  He did the same thing he does when he eats a few times, just not as drastic since he didn't have to fight not taking the bottle...he can't get away from the feeding tube.  I am 100% convinced that reflux is his problem.  Now comes problem number 2...they don't treat reflux in the NICU.  Yesterday Dr. Simpson said that she won't treat reflux unless they are having to resuscitate him and clear his airway.  Tomorrow I am going to have to address the reflux issue again with Dr. Simpson and hopefully she will agree to treat his reflux while we are in this 2 week waiting period.  If she refuses I think we may need to seek a alternative facility for Bennett, or I am going to have to smuggle Prevacid into the NICU daily!

Update on Blake...it seems I've just been writing about Bennett a lot lately. 

Blake is doing great minus his own battle with reflux, but unlike his brother he is being treated with medicaiton!  He weighed 12 pounds 4.8 ounces when I took him to the doctor yesterday (Bennett weighs 10 pounds 1 ounce)!  He is a completely different baby than he was just a month ago.  He wakes up in a happy mood, he has lots to tell us every day and is fastenated by celeing fans!  Last night he slept for 5 hours for the first time...it was AWESOME!  I hope it is a trend that continues :-)

Blake talking to us after his bath

Blake and Jason on his first Father's Day.  This is the onsie I bought when I told Jason we were pregnant!  Did I plan that well or what!

Uncle Jeff with Blake on Father's Day

My favorite guys...minus Bennett...Jason's dad, Jason, Jeff and Blake

Blake giving us dirty looks when we put him in his car seat...it's not his favorite place!

Bennett on Tuesday in one of my favorite outfits...Blake has a matching one, I wish I could see them in them together

Bennett watching his mobile today...it provides hours of entertainment!

Frustratd, Disappointed and Heart Broken

I have done nothing but cry all day.  I have reached the point of not wanting Bennett home, but NEEDING Bennett home.  I think the thing that I am most frustrated with is he is at a point where I can take care of him at home, but no one will let me.  His lungs have been at a point where he could come home for a few weeks now, but his eating still isn't.  I am having a very difficult time understanding why they can feed him with a NG tube in the hospital, but I can't at home.  I could understand if I wasn't a nurse, but I am qualified to put a NG tube in other peoples kids, but not my own???  I spoke with Dr. Simpson this morning and she flat out said she will not send him home with a NG tube and I told her I wasn't ready to give up on him and put in a G button...she then said he would have to stay in the NICU until he can take all of his feeds on his own.  

His feeding is a double edge sward.  He has to eat X amount of calories to grow and when he grows that amount increases...as soon as he catches up he has to eat more and it's like he is just one step behind.  I am at a point that I am not willing to give them the next few months of his life.  I feel like I am backed into a corner to give him up for them to raise for another few months or sign the consent for him to go back to surgery again.  Part of me is so angry at the physician for not having a better plan in place.  If she would have waited until he was completely ready to come home to do his surgery and then he would have had to have a G button they could have done both surgeries at the same time.  I am not completely against a G button if that's what he needs to grow, but I feel he needs more time to prove that he needs it.  I asked her for a speech/OT consult so they could evaluate his feeding and I felt like she thought I was asking for the world. 

I am so tired of being told "Let's see where he is in a few weeks."  I was told he would be home by his due day and that day came and went a month ago.  I was told the doctor that currently has him would be the one sending him home and now she will be gone in another week or so and we will get a new doctor (which may not be such a bad thing at this point).  I was told last week he would be home in 48 hours and that time too has past.  Now I'm told "Let's give him a few more weeks."

I guess basically what it comes down to is I need a reasonable answer as to why they won't let me take care of him at home...to me a NG tube is not a reason and at this point I feel like it's me against them.  I am in fight of flight mode and they have pushed me into a corner and I have nowhere to run...I have no choice but to fight for Bennett!

Operation Get Bennett Home

Operation Get Bennett Home was not a success :-(  I sat at the NICU from 8:30am until 6:30pm yesterday and 9am until 4pm today strictly working on feeding Bennett.  On Wednesday I had a mental breakdown while at home with Blake.  Partly because I can't be with Bennett as much as I would like or at the drop of a hat when I want.  I was frustrated that he had been getting new nurses every shift and when I would ask them questions about his eating they didn't know the answer because they don't know Bennett.  I didn't feel it was fair to him to have to deal with a new nurse's learning curve every 12 hours.  I didn't have a problem with a particular nurse, I just wanted him to have nurses that knew him.  Every time I turned around someone was feeding him with a different nipple and holding him in different ways.  How is he supposed to learn what to do without consistency?  I was also upset that they still had him on the same schedule that they have had him on since they day he was born.  It didn't really hit me until a nurse told me she had to wake Bennett up to feed him after he had only been asleep for 45 minutes because he had been awake.  By 3 months old it is only natural that he is awake for a few hours at a time and how can they expect him to be successful at eating when he had only slept for 45 minutes?  Blake wouldn't be successful either if I did that to him!  Thankfully Bennett had a great nurse on Wednesday who could handle me sobbing to her on the other end of the phone and got right on the ball in getting some changes made.  In less than 30 minutes Dr. Simpson was calling me and we came up with a plan. 

They took out Bennett's feeding tube and were going to let him go 4 hours without waking him up to eat, but if he wanted to eat sooner he could.  This made me feel much better, but I needed to be there to see for myself how he did.  The first night he did great and ate more than he had eaten in 1 feed before...97 ml (a little over 3 ounces)...the next morning when I got there it was a different story.  Bennett would wake up to eat every 3-4 hours and would power through the first half of his bottle in about 5 minutes without a problem then he would start to fight eating.  I would give him a break, sometimes as long as 15 minutes, and try again.  As soon as he realized it was a bottle with milk and not his pacifier he would start throwing a fit, crying, arching his back and spitting.  I think the most frustrating thing is he would take his pacifier, but not his bottle.  He prefers the pacifier because it doesn't take as much effort or coordination as the bottle.  All in all yesterday he barely met the minimum amount of calories he needs to grow, the amount of fluid he needs to stay hydrated and he lost 1 ounce.  When I went back today it was the same story all over again.

All tuckered out after trying to eat by himself all day

I am so thankful that Bennett had one of our favorite nurses, Gwen.  She knows how to talk to me so that I listen, I feel like we are a team and it isn't me against them, she knows when to help and when to step back, and most importantly she is a great advocate for Bennett...she is able to see who Bennett is instead of just another baby...I think she loves him as much as I do.  I always feel better when she is there because I know Bennett will get the best care possible!

Before I left today I talked with Dr. Grubbs...the first doctor he had when he was born.  We decided to put the NG tube back in, still let Bennett eat when he wants every 3-4 hours for 30 minutes at a time and to feed him what he doesn't finish through his NG tube.  We are hoping in the next few weeks that he grows enough to build up his stamina so he can eat all of his bottles on his own.  If he is unable to finish his feeds at that point we are going to have to look at sending him home with a G Button (a plastic button they put in his stomach so I can feed him if he doesn't finish his bottle) or a NG tube.  I'm really hoping to avoid a feeding tube all together!

I know it sounds silly, but it makes me sad to go through their clothing drawer and see matching or coordinating outfits and know that I can't see them in them together, and that he will probably out grow them before he comes home.  I'm also worried he won't fit in the coming home outfit I had made for him.  Basically I feel like I am missing out on all the normal things that someone gets to do with their newborn and I feel pulled in so many different directions that I really have to stop and focus to make sure I enjoy the time I get to spend with them both.  It's almost like I thought time would stop and they wouldn't change much until they were home together, but that doesn't look like it is going to be the case.

I think the thing I have to remember is Blake and Bennett are not the same...they never will be...they probably would have never been even if they were both born without complications.  Since the day Bennett was born he has called the shots and we have never been able to 'make' him do something he wasn't ready for.  We always joke that Bennett says "Your not the boss of me, I'm the boss of me" and that holds true for him when it comes to eating as well.  He will do it when he is ready and when we least expect it...I just have to be patient and that is really hard after 3 months.

When I came back from lunch today I found Larry, aka Santa Clause, rocking Bennett.  It's nice to know that there are volunteers there to love on him when I'm not :-)

Interesting Realizations!

I got the call today from Dr. Simpson that Bennett could be home in as soon as 48 hours!  After we got him started back on his diuretics Saturday he was a different baby and finally started to eat more on his own again!  I am so excited that we will finally have our little guy home.  I have been so ready since he has been at a point with his respiratory status that I felt comfortable taking care of him.  We have just been waiting for him to take all of his feeds on his own...I would have brought him home with his NG tube (feeding tube), but they wouldn't let me :-(

Realizing that I will soon have a baby home on oxygen raised a lot of questions for me this morning...where will we put the main concentrator?  How hard will it be for me to get it from one room to another with him and Blake?  How long will a portable tank last?  How do I get the tanks filled? The list goes on and on!  I spoke with the social worker this morning and she will set us up with Cook's home health as soon and the order is written that he will get to go so we can get everything set up at the house.  I think my biggest fear is that we will be out of the house and his oxygen tank will run out...I envision myself frantically running into a ER screaming "HE NEEDS OXYGEN!"...hopefully I will plan our outings a little better than I give myself credit for!

That brings up another point...outings.  Bennett pretty much will be a 'bubble baby' this first year to allow his lungs to grow.  Getting sick could land him right back in the ICU.  I dread his first cold!  We basically will get him out of the house to go to doctor appointments for his lungs and physical therapy for his arms...that's about it.  While I was pregnant with Bennett and Blake and we didn't know if Bennett would make it, I promised God that if he would let me keep him I would take better care of him than anyone else and now it's time to make good on that promise!  It may make me a little over protective, but that's what moms do!

With all of that being said, I resigned from my job today.  It's bittersweet.  I enjoy being a school nurse and I didn't realize how much I need to have something in life that gives me the feeling of accomplishment until I went on disability this year.  The school district I was in was so good to me and I feel guilty for leaving, but I have to look at it as I am getting to spend this next year watching my boys grow and I will be blessed not to miss a moment!  I'm hoping once a schedule is established with the twins that I will be able to work somewhere on Jason's off Fridays to keep up my skills and allow me to have some "me time" out of the house...plus I need a pedicure fund :-)

I know the next few months will be a little rough while we figure out what's going to work for us, just like it was rough until I figured out what was going to work when we brought Blake home.  I at least feel a little more capable and prepared for Bennett to come home...I am just waiting for the moment that I get to see them side by side for more than 30 seconds.  I don't know if I will be able to take my eyes off of them!!!!!!

Busy Week!

This past week has been super busy...or at least it seemed that way!

Bennett had his hernia surgery on Tuesday and everything went as we had hoped.  He was able to have the surgery with a spinal block instead of general anesthesia.  It is a huge relief to have that behind him.  Just a update on the fit I had to throw to sit with him before surgery...I was able to go back to his room and sit with him until he went to surgery without another word said to me.  They didn't even move us to a isolation room and honestly I heard less during their "report" than I do when I'm up visiting Bennett during the day.  I think I made his night nurse mad because she requested an assignment change the next night, but if that's all it takes to get her upset she needs to toughen up a little.



Bennett in the isolette when he was born



Big baby in a little box...he has grown a ton since he was born!

It was a little rough after Bennett came out of surgery once his spinal block wore off.  There was no comforting him and his nurse was no where to be found.  I asked the nurse at the other end of the room to call the doctor and get him some Tylenol and see if he could eat...all she did was go find the other nurse.  Bennett's nurse said they wouldn't want to give him anything for a few hours and I about came unglued.  He didn't have general anesthesia and there is no reason a baby should stay in pain for a few hours.  Finally she called the nurse practitioner when I requested something for his IV and the nurse practitioner agreed reluctantly to give him some Tylenol, but wouldn't make the call if he could eat so we had to wait 15 minutes for his doctor to get out of a business meeting.  There is something so wrong about a patient having to wait for a doctor to get out of  a business meeting.  We pay her literally $2000.00 a day to take care of Bennett...at that price I don't feel he should have to wait!  When she came to see Bennett she was fine with him eating and thankfully scheduled Tylenol for him for the next 2 days.  That made me feel better so I wouldn't have to leave it up to a nurse to decide if he was in pain or not after the experience I had just had.

Bennett all comfy and sleeping after surgery

The surgery seemed to set Bennett back a little.  He hasn't been finishing his bottles and that's the last thing he has to do to come home.  I think there are a few factors playing into him slowing down on his eating...he had surgery, they stopped his diuretics and he is only on 0.25L of oxygen.  Basically he is having to work harder than he ever has.  I got to talk to the pulmonologist Thursday evening and she seems very nice.  She agreed to turn his oxygen up to 0.5L while he eats to try to help him out.  She also said that Bennett will come home on oxygen and stay on it through winter.  She said that the oxygen will help him not work as hard, therefor not burn as many calories and in turn grow better which will help his lungs grow better too!  I'm hoping to get him started back on his diuretics today after we saw him last night.  He was more swollen and had gained about 4 ounces which is a lot for a day.

After 3 months I finally got a picture of him on a scale!

Wednesday my friend Katie and her mom were kind enough to come watch Blake so I could go see Bennett again.  He was much better and seemed to be getting back to his old self.

Bennett at 11 weeks old!

Blake at 11 weeks old!

Thursday night I had a "Mom's Night Out" with my friend Jennifer.  We went to a mom's event where they had the best products from birth-infancy.  It was a great night and everyone left with one of the products.  Unfortunately I drew a crummy number because they had some awesome prizes...10 Britax strollers, a crib, a Orbit baby stroller and tons more.  We got a support for the boys when we give them a bath...maybe it will keep them from being wiggly in the tub!  I had a great time and met other moms who had great advice.  I can't wait until the next event :-)

Yesterday was our 5 year anniversary...boy does time fly!  We took Blake for his first sleepover with my mom, went to Texas de Brazil and then went and spent some quality time with Bennett!  Best of all we slept ALL NIGHT!!!  What a treat :-)

All in all it was a great week and we are keeping our fingers crossed that next week will be better.  The doctor keeps telling us she thinks he will be home this next week!  That would be the best Father's Day gift for Jason that I could imagine!

Bennett's coming home outfit I had made yesterday!

My sweet boy just being cute!

Pick Your Battles

Bennett is having surgery tomorrow to fix his hernia at Cook's at 7am.  Jason and I planed to get to the NICU at 6 so we could sit with him and then go to Cook's.  I know the NICU is closed from 6-8 am/pm, but you would think if your patient was going to surgery and their parent was there that you would let them be together...apparently this is not the mentality of Harris Fort Worth!  I was told that I could get there early but then would be made to leave at 6am because the unit is closed for shift change.  They claim it's to protect HIPPA rights, but I call B.S on that.  If they cared about HIPPA they wouldn't talk about patients in front of other patients when the unit is open.  I could tell you more than I should know about most babies that have been around Bennett and I would bet that they could tell you about Bennett.  I'm not mad about HIPPA, I'm mad that their standard of care isn't more compassionate!

I finally talked with the charge nurse tonight and decided it was time to pick my battle!  Don't get me wrong...Bennett has had some AMAZING nurses that I love, but there are times when he hasn't received the care that I wish he did.  I haven't complained when I go to see Bennett and he is in the same outfit I saw him in 24 hours ago, I didn't say anything when they haven't been as attentive as I would like to his alarms going off on his monitors, I didn't pitch a fit when a nurse wouldn't let me back for 45 minutes because she was weighing him, and I haven't argued their ridiculous policy that a snot nosed 4 year old can go back in the NICU, but I can't take my healthy newborn so I can see my baby more often.  After much debate and attitude from the charge nurse they are going to let us back in the NICU and put Bennett in a isolation room so we can sit with him.  I don't understand why it is such a difficult concept!  I think the thing they need to remember is that when they take care of a child, they also have to take care of the family and if they would stop and put themselves in the parent's shoes I think they would have a change of heart!

Blake's First Road Trip!

Today I decided to "Just Do It"...I packed Blake up in the car and headed to Camp Reynal!  It was a much needed trip for mom and if I have anything to do with it the boys will some day be camp counselors there.  For those of you who don't know Camp Reynal is an amazing camp for kids with chronic kidney disease.  I have volunteered for them for the past 9 years and I was the director for the past 4 years.  To say the least Camp Reynal is a big part of my life and it was very hard for me not to be there this year.  Oprah said in her final episode to do something in life that you are passionate about and I think Camp Reynal is my "thing"!

Feeding Blake in the dining hall.  Who would have thought when I was eating in this dining hall when I was a camper 20 years ago (that makes me sound old!) that I would one day bring my own child here!

Blake with some of my favorite Reynal people...Sam, JJ, Jennifer, Allie and Kaci!

I was worried about making the 1.5 hour drive by myself with Blake, but he did great!  We were out of the house by 9am, he slept in the car the entire way there and was ready to eat when we arrived.  He did the same thing on the way home.  It is nice to know that I can still get out and do things...it may be a different story with 2, but I have decided that I'm just going to have to bite the bullet and do it...we can't be trapped in the house forever.

Today the boys are 10 weeks old.  I'm not sure where the time has gone, but it has flown by.  I put Blake in 0-3 month outfits today for the first time...he is getting so big so fast :-(

Bennett 10 weeks old!  They are getting him ready to come home.  They have taken the rolls out of his bed and have made it flat.  A surgeon is coming to evaluate him tomorrow to see if he needs surgery.  Once he realizes he is a Warner and that Warner's like to eat he will be on his way out of the door!

Blake 10 weeks old!  He has enough control to sit by his monkey now!  This is his first 0-3 sized outfit.

Photo time with mommy!

Photo time with Daddy.  We have our own versions of dress up!

They turned Bennett's oxygen down to 0.4L today and he is doing great.  They are going to try to get him down to 0.25L of oxygen over the next few days and if we are lucky he will be able to come off the oxygen before he comes home!

All in all it was a great day and I am glad that I got to introduce Blake to so many of my favorite people!  Next year hopefully Bennett will get his first camp experience!