Battle over Surgery

Dressed up and ready to go!  Wearing sheepskin booties from his Auntie Katy!

The last two weeks have been stressful to say the least.  It's a good thing that my nerves have settled before I wrote this post, because otherwise it may have been filled with tears and quite a bit of profanity.

Beautiful cutie

Our last visit with the NICU follow-up clinic was frustrating to say the least.  We arrived for our normal NICU follow-up appointment and started off with Benton's echocardiogram to check on his pulmonary hypertension.  Luckily, the visit started off great with Benton fully cooperating with the echo tech and Benton even trying to give himself the echo!  The drama started once we went to the NICU follow-up room.  Immediately the attending doctor started in by stating the fact that "we need to start scheduling Benton for gtube and nissen surgery".  This just bowled us over, we had barely even begun the appointment and we were already on the defensive.  For those of you who don't know - a gtube is a feeding tube placed directly in the stomach rather than being inserted through his nose (NG tube) like he currently has.  A nissen is when the stomach is wrapped around the base of the esophagus so that the child cannot reflux.  The gtube surgery is relatively routine and is only about 45 minutes and is completely reversible.  The nissen surgery, on the other hand, is about 5 hours long and is irreversible - the child will never be able to burp or vomit again for the rest of its life.  Plus, the nissen surgery has a high degree of complications that can require future surgeries.  From what I have read online you don't give a kid a nissen unless they are throwing up all the time or aspirating their vomit.  As you can probably tell I am very anti-surgery for my kid, especially when I think about the fact that with any surgery Benton will need to be re-intubated and he will have to once again be weaned back to breathing on his own.

Benton trying to give himself an echocardiogram!

Prior to this appointment I had been nervous because I knew Benton might need a gtube, but had figured that a nissen was only a remote possibility.  Joe was so convinced that the nissen wasn't going to happen that he didn’t even think it was worth talking about.  Hearing the doctor start off your appointment by just saying matter-of-factly that your son is going to need two surgeries blew my mind.  To her it wasn't a discussion it was an ultimatum.  We continued to ask why the doctor thought a gtube and nissen were necessary and she just kept saying that when you put in a gtube you have to do a nissen.  The doctor also kept saying that all kids with chronic lung disease need to have both a gtube and a nissen.  Joe put it very well when he said that it seemed as though the doctor has a "fast food approach to preemies" - It was like she had looked at Benton, saw he was a preemie requiring oxygen and decided to give him the #3 combo.  

As we argued with the doctor regarding the need for Benton to get a nissen, her justifications seemed to get more and more accusatory as time went on.  She explained that the speech therapist who had seen Benton had declared that he had an oral aversion (okay...fine he might).  Furthermore, she told us it was our fault he had an oral aversion because we had taken the NG tube out of his nose and tried to let him solely bottle feed.  Well that was a low blow.  We had never willingly taken out Benton's NG tube...he had ripped it out three times in one day so we let him try bottle feeding instead of shoving the tube back down his throat.  To have a doctor blame you for creating an oral aversion in your son was heartbreaking and to this day my throat tightens and tears well in my eyes as I think about those snarky words.  I would never want to harm my son or create in him any fear, yet this doctor thought it was perfectly fine to blame us for his oral aversion rather than the months he spent intubated in the NICU.

Loving the onesie and overalls

Holding his bottle and surrounded by toys

To further add salt to our wounds the doctor said that Benton's worsened pulmonary status was what required him to get a nissen and gtube.  Well this was news to us since everyone had been telling us his lungs sounded the best they ever had. As we asked what she meant by worsened pulmonary status she told us that since he was requiring 3/4 liter instead of 1/2 liter he was trending in the wrong direction - this from the same person who had told us it was just safer for Benton to sat higher due to his pulmonary hypertension and that was why they had recommended for him to be at 3/4 liter.  At the same exact moment she is telling us of his worsened pulmonary status the nurse was checking his sats and he was satting 99 on 1/2 liter and 94 on 1/4 liter.  This was by far the best we had ever seen him sat so to hear that his pulmonary status was the linchpin in her reasoning behind nissen and gtube surgery seemed absurd.  

Despite the mixed emotions felt by both parties, we were able to come to some decisions.  We agreed to have Benton take a swallow study and a study of his upper GI tract.  These studies would show if he was aspirating his milk as he swallows and also look to see if he is violently refluxing and aspirating his vomit.  Both of these studies will help all of us make a decision regarding surgery.  If he is aspirating the milk he will automatically need a gtube, if he is aspirating his reflux then he will need a nissen and a gtube.  Only time will tell.  We also agreed to start seeing a speech therapist to try and help with his oral aversion which is something we have been wanting to start for sometime. 

Giving himself a nebulizer and blowing bubbles

As we left the doctors office our feelings ran the gamut of fear, outrage, anger and sadness.  We want to trust the doctors because we know that they did a phenomenal job with Benton in the NICU, yet we are not convinced that the surgeries that they are recommending are right for him.  Benton has always had his own timetable and only does things on his own terms.  When the doctors in the NICU were recommending a tracheotomy he waited right up until the day of his ENT consult to get his act together and get extubated after 4 1/2 months, and when the doctors said he was ready to say goodbye he showed everyone that he would fight tooth and nail to stay here on earth with us by the grace of God.  So you can understand my hesitation to just accept that Benton needs surgery just because he has taken a little longer than the average bear.  In order to help allay some of our apprehensions we have started talking to other families who had gtubes both with and without nissens and also set up appointments with specialists to get second opinions on these potential surgeries.

In other more exciting news, Benton met with a speech therapist and got to try purees for the first time!  Seeing his facial expressions when those pureed pears went into his mouth for the first time was priceless.  First, shock at what is this spoon in my mouth and then yum at the taste of the pears, then "oh no" how am I supposed to keep these yummy things in my mouth.  Needless to say more pears ended up on his face and bib than in his mouth but overall it was a resounding success.  Now we get to try feeding him purees at home which is super fun; however he still has his apprehensions regarding the spoon entering his mouth so we will see how that goes :)  Check out his first bites in the video below:

We have started working with Benton on grabbing and holding a variety of small objects.  He now has a plethora of fun toys from his various rattles to his Sophie to his Ferris wheel to his links, blocks and wubbanubs.  Each day we can see Benton's hand eye coordination increase and he is getting better at grabbing and holding each object and then trying to shove it into his mouth.  I love seeing Benton play with his toys and it's fun to see him develop favorites which he requests. 

Loving his Ferris wheel at physical therapy and at home with Grandpa

Playing with his knobby Q and spoons

We also received additional good news recently.  Benton had an eye exam with the retinal specialist and they said his ROP was completely gone and we could cross those bi-weekly exams off the list.  We also went to see the urologist regarding the NICU follow-up clinic's concern regarding his bladder not fully emptying.  The urologist examined Benton and said that there was no need for a circumcision and that any baby who had their bladder pressed on would let out some additional urine.  The urologist actually thought it was silly that we had been given any fears over something so normal.  So no required circumcision for Benton!  It's nice to know we can cross at least one additional surgery off the list!

Overall the past few weeks have been ones filled with discussion.  Discussion over what is best for Benton and what is best for our family.  While we had started off the past few weeks vehemently opposed to the gtube, we have started to come around to see its benefits.  The gtube will allow him to get that NG tube out of his nose which has quite a few benefits: 1) it will reduce his reflux as the tube will no longer be holding open his esophageal sphincter at the entrance to his tummy; 2) it could help him developmentally because he may not want to eat solid foods when the tube is in his throat; and 3) he may want to babble more once the NG tube is out of his throat.  Even though we are starting to accept the apparent inevitability of the gtube we are still outright opposed to the nissen.  The next few weeks will reveal what our future holds as we have scheduled many appointments with specialists for second opinions, swallow studies and studies of his upper GI tract.   

Please send your prayers that Benton continues to improve on his feeds and that he can avoid surgery (especially nissen surgery) and that he continues to grow bigger, stronger and healthier each and every day. 

Holding my amazing man!

Love Love Love

Enjoying Bath Time!

Benton loves his bath time.  He views it as his "man of leisure" time and loves to react to his bath toys as they squirt water on him.  After his bath he loves wriggling around in his hooded towels and just generally squealing with joy.  Bath time is my favorite time of day with my little man :)

Sheriff Benton

We got a little silly at the pediatrician's office and made this video of Benton as a cowboy.  Enjoy!

Blowing Raspberries, Talking, and Playing with Links

We love blowing raspberries on Benton's tummy and he reciprocates with cute coos and ahhs.  It's always amazing to hear him talking and reacting to our voices.  Each day Benton is making more and more sounds and we can't wait until he truly starts telling us everything he thinks :)

 

 

Benton loves playing with his links more than any other toy at the moment.  It's probably because they are the easiest thing to grab.  He is now expanding his horizons by playing with his Sophie, his knobby Q and his caterpillar rattle.  This video shows Benton enjoying his links and then stealing them from his daddy!

Happy 8 Months Benton!

Sweet cutie

It's hard to believe that we just celebrated Benton's 8 month birthday.  This means that Benton is 8 months old chronologically and 4 months old adjusted.  It's weird to think of how many ways I can think about Benton's age.  In size (he's 11 1/2 lbs) he is more like a 2 month old, but in development he is more like his 4 month adjusted age.  When people ask how old my son is, my answer changes based on who I am talking to.  For example, if its a close friend/doctor/therapist I go into the whole spiel "He's 8 months old but was born at 23 weeks so its really like he's 4 months old".  But with strangers or acquaintances that don't know my situation a simple "3 months" will suffice.  Even though he is not 3 months in any way - it is just easier to tell people what they want to hear.  I don't like explaining why my child is small for 4 months because that gets us into a whole other conversation about his premature birth and then I feel the need to explain that he really isn't even 4 months old but rather 8 months old - so I just stick with what they want to hear. 

In his prim and proper suit from Tutu

Enjoying time with mama

Now on to the more important thing: how Benton is doing.  Benton continues to amaze and surprise us every single day with his enthusiasm for life, ability to pick up new skills and general happy-go-lucky personality.  In the past few weeks Benton's gross motor skills have grown by leaps and bounds with the help of his weekly physical therapy appointments.  He can now hold his head up during tummy time, roll over from tummy to back, bat at toys, suck on his hands, and grasp his links.  He is also smiling socially in response to his mommy and daddy and whenever you tickle under his chin or play "this little piggy" on his toes!  When Benton is awake and playful, I just can't get over how much fun I have being his mom.

Tummy time and grasping at links

Trying to sit up in his boppy and with Daddy's help

So many things to play with :)

 Check out this video of Benton rolling over!!!

The one thing that has been difficult with Benton has been his feeding.  After he first began his prevacid medication he started to eat 60-70% of his feeds by mouth, but then all of a sudden it started to drop off with no apparent reason.  At the same time he pulled out his NG tube from his nose 3 times in less than 48 hours.  It seemed apparent to us that he really didn't want that tube in his nose, so we decided to give him 2 days without the tube and see how he did with his feeds before our next doctors appointment.  We didn't make this decision lightly - all the research we had read regarding tube weaning had recommended taking out the tube and letting the child get hungry so that they would want to eat.  So with this research backing up our decision we decided to see how our little fighter would do without the NG tube.  The answer was pretty decent.  He increased his feed volumes from 10-25% to 65-80% within those two days.  Granted he needed to be fed more often and some feeds took a little too long, but in general he was more enthusiastic about the bottle and his feedings than he was with the NG tube in place.  Furthermore, without the tube he seemed much happier and more talkative without that tube in his throat constantly.

Benton's priceless facial expression from going through a tunnel for the very first time!

With such progress in two days we went to the NICU follow-up clinic super jazzed.  But our happiness was short-lived.  The doctors were not happy with Benton's oral intake nor were they happy with his weight gain.  He had gained 10 oz in 2 weeks but that wasn't the 1lb they were looking for.  They told us it was necessary to put his feeding tube back in and increase his feeds to 80 ml at 28 calories.  Furthermore, the doctors now want Benton to be evaluated by a speech therapist, have a barium study done to review his suck and swallow reflex and perhaps start the route to a G-tube.  Needless to say we were pretty upset.  I get that my son still might need his NG tube for awhile longer, but to jump all over us for trying to wean him from his NG tube seemed cruel.  And to basically put a G-tube surgery back on the table just broke my heart.  Joe and I have already learned how to place the NG feeding tube so it's hard to wrap my head around making Benton go through G-tube surgery when we could maybe avoid it.  All in all it was a hard conversation to swallow.

We have a speech therapy evaluation set for next week and we will likely have more answers at that point.  With each passing day Benton seems more interested in his feeds and reacts with less reflux....so there is hope he can avoid surgery.

I would do anything for that smile

In other news, Benton needs to go to a urologist to have his penis looked at.  When Benton was about to be discharged from the hospital we had the choice on whether to circumcise or not.  While we had initially been for circumcision when I was pregnant, having watched Benton go through countless procedures made us decide against it.  We thought Benton had been poked enough there wasn't any reason that he needed to be poked one more time.  Well apparently that may have been the wrong call.  It seems that Benton's foreskin is causing him to not fully empty his bladder when he pees and they are afraid he will get a urinary tract infection so we need to have it looked at.  There is a high likelihood that the urologist will recommend a circumcision in which case I guess poor Little B will have it have that done as an outpatient procedure.  I just feel bad because we could have had him circumcised while he was under general anesthesia during the hernia repair and now it will likely be outpatient with just some numbing cream.  Oh well.

Being silly with pants on his head

With each day that passes, I have begun to venture out of the house more and more with Benton.  Just this past week we brought him into the backyard to enjoy a cook-out as well as took him on a walk around the Capitol.  Plus I have started to reach out to our NICU friends and start doing walks with the other moms of preemies.  My friendship with the other preemie moms has been such a blessing.  Not only do they totally understand my obsession compulsion with germs around Benton, but they are such a good resource to talk through these medical issues and developmental milestones.  Plus it's just plain fun to have mommy friends and playmates for my little man :)

Enjoying playtime in Lincoln Park with his preemie pals

Benton and his pal Henry

Despite all the medical issues we have to deal with, each day with Benton is the ultimate blessing.  I love every single minute I get to spend with my darling boy as he grows stronger each day.  We continue to pray for Benton's health - that his lungs will get stronger and no longer need supplemental oxygen, that his pulmonary hypertension and PDA will resolve and that his feeding issues will disappear.  Thank god for miracles because every day I look at my son I know I am witnessing the most amazing miracle of all.

Happy 8 Month Birthday Sign by his Great-Great Aunt Sister Mary

Playing Peekaboo

Benton enjoying some peekaboo fun with Daddy!  I love the way he smiles whenever he sees his papa.

Happy Independence Day!!

Family portrait

For Benton's first Fourth of July we celebrated by grilling outside and decking out the family in red, white and blue.  Although it was a low-key day we look forward to showing his the fireworks next year when he is a little less flammable :)

Enjoying the great outdoors on July 4th!

Benton in his red, white and blue