Happy Two Months Benton!

Reaching for the stars!

A few days ago Benton turned two months old!  Wow does time fly by!  I can't believe my little boy is already two months old and is 32 weeks gestastionally.  It's absolutely amazing that he is here with us today and with each passing day he gets more active and alert.  The past few days he has been opening his eyes a ton and trying to grab his tube and give high fives.

Since my last post it has been an effort in slow and steady improvement and do I ever mean slow. S-L-O-W...  Benton is slowly getting weaned off his various medications and starting his feeds again.  This past week he had an echocardiogram, a chest x-ray and another brain ultrasound.  The results of the echo showed that the pulmonary hypertension in his heart had improved and they no longer saw right to left shunting but only left to right shunting.  This means that his pulmonary hypertension looked to be almost gone so the doctors have been able to wean him off a lot of the medication they had been using to artificially increase his blood pressure.  Now his dopamine is gone, his antibiotics have completed and they are slowly weaning the hydrocortisone (a steroid) for his lungs.  In addition, they have weaned his nitric oxide down from 8 to 4 and the pressures on his ventilator are down from 37 to 33.  All of these changes have been very positive, but at the same time each time he takes a step forward he often takes a step back.  Now that they have been able to wean so many items his oxygen requirement is much higher and has been vacillating between 85-100%.

In other good news his brain ultrasound showed no change from the last one which means he does not have any cysts in his brain or obvious signs of long term damage.  This was great news since the cysts that cause long term damage tend to show up a few weeks after an injury to the brain (such as when he had such low oxygen levels there over the holidays).  In addition, his chest x-ray showed that his lungs seemed to be improving.

Now we are just hoping and praying that his lungs continue to improve, that his edema continues to slowly recede, that he tolerates his feeds and that he doesn't get any new infections.  Please keep sending the love and prayers!

Cutie pie!

2014 A Year of Hope: Days 52-59

Our little miracle ringing in the New Year!

 Happy new year! With 2013 over and 2014 starting anew our family has a lot to be grateful for.  2013 was one of the most scary and amazing years of my life.  We found out we were pregnant and experienced the ultimate bliss that comes with knowing that you are going to be bringing a new person into this world.  But our bliss was short-lived due to the shock of finding out that my water had broken at 22 weeks.  Those moments in the hospital before Benton was born were some of the most unnerving moments of my life.  Hoping and waiting for your baby to stay inside you all the while knowing that death could be lurking around the corner.  Once the shock of his early birth wore off we were simultaneously elated to have our baby here with us alive, but at the same time terrified he would fall on the wrong side of the dreaded statistics.  As 2013 wore on we fell into our pattern of hospital visits, reading Benton stories and creating a community with the other NICU moms.  With the support of everyone around us we have made it through harrowing times where we weren't sure that Benton would survive to see another day, but on December 31st Joe and I rang in the new year at the NICU with our favorite little man.  And just like that 2014 began with us staring at our baby who was opening his eyes to greet the new year.

Looking back at the past 8 weeks brings me nothing but awe.  Awe that Benton has come so far and beaten so many odds.  Awe that this experience has brought our family so much closer together and awe that becoming a mother truly is the most unbelievable experience anyone can ever have in their lifetime.  For everything that has happened all I can say is that I am unbelievably grateful to have Benton in my life and I hope that 2014 will be the year that my lovely boy exceeds all expectations and comes home.

My wonderful little man clutching my thumb.

Now that you have heard my sweet opining on the advent of 2014 I will give you an update on Benton.  Check out his 7 week and 8 week birthday signs



Over the past week Benton has made slow progress forward after a rough start.  This past Monday I went to the hospital to find out that he had a fever and the start of yet another infection.  My first thought was "wow this kid cannot catch a break" this sentiment was echoed by the attending doctor who came over and said she was troubled by this turn of events because it had seemed Benton was finally turning a corner.  Alas Benton had other plans.  With the new fever the doctors wanted to give Benton a spinal tap, take a urine culture directly from his bladder and take a blood culture.  As the doctors were pressuring me to give consent for the spinal tap Benton starting desating and had to go back up to 100% oxygen.  With him desating so much I was concerned he wouldn't make it through the procedure so I kept stalling until the doctors finally called off the spinal tap and urine culture.

The doctors proscribed him a broad range of antibiotics including the same one that wreaked havoc on his kidneys the first time, but they needed to be sure they were catching everything and they promised to take him off that specific antibiotic the second they had a negative culture.  In addition they increased the pressure on his vent from 34 to 37 and the rate of his breaths per minute  from 40 to 60.  These changes would help him breathe better even though he was on 100% oxygen.  Almost immediately his blood gases got better and his oxygen requirements started to come down.

Benton in his Christmas hat!

After the "exciting" start to the week the rest of this week has been relatively calm.  Benton has been able to require less oxygen and needs anywhere from 60-90% and he has been doing much better during his cares.  For awhile when he was really sick he would desat to 60 anytime you touched him because he was so hypersensitive but now he can tolerate his diaper being changed and getting moved around with almost no desating at all.

The only other major change has been that now that he has yet another infection his edema is back in full force.  While the edema had never really gone away it had started to recede and he had been able to get down to 1100 grams (about 2lb  7oz). But with the new infection his body has sprung another capillary leak and he has been leaking fluids into his tissues again.  Over the past few days we have watched his weight creep up seemingly overnight to 1530 grams (3lbs 6 oz).  That is a gain of 400 grams in just a few short days!!  Keep in mind that this weight gain now puts him over 3 1/3 pounds when he should only be 2 lbs!  That is a lot of water!  Our poor little baby definitely looks like a little Buddha baby but luckily this time he is still peeing so we are hoping he can mobilize the fluid soon and get it off.

Our little Buddha baby.

It's been nice to have a few days to just enjoy Benton without the constant fear of him desating to the 50s.  With his oxygen levels staying pretty consistent around 70-80% I have been able to breathe a bit more and begin to hope for better days.

Please keep praying for Benton's lungs to get stronger, for his pulmonary hypertension and edema to go away, and for his heart to not be strained from all the hard work it has had to do over the past few weeks.

Kangaroo Care

A Christmas Miracle: Days 43-51

 

Saturday, December 21st was truly the hardest day of our family's life.  I know I have said that before and I really hope I never have to say that again.  This NICU roller coaster just keeps going down for us and it is harder and harder to see the light at the end of the tunnel.  But I am happy to report that our beautiful son Benton is still here with us, fighting.  He is such an amazingly strong boy and we could not be prouder of him for enduring everything he has been through. We love him so much. Right now he is still extremely critical, on 100% maximum life support due to very severe lung disease and a new infection.  We will never stop believing in our little man and we continue to pray that he will keep fighting during this extremely hard time so that one day we can be a happy family. Here is the back story from the trials we went through this past week. 

 

On the Saturday before Christmas I felt a deep pit in the bottom of my stomach.  Despite the fact that I had just called to see how our little man was doing, I felt like I needed to rush to the NICU so I got dressed and didn't even bother to dry my hair despite the frigid temperatures.  When we got to the NICU that Saturday morning I was relieved to see that Benton was sating well despite being on 100% oxygen.  I was able to breathe for a moment and enjoy reading to my favorite little man while Joe went to grab sandwiches.  However, within minutes his condition began deteriorating.  With his oxygen, nitrous oxide and dopamine at maximum levels his saturations started dropping from the 90s to the 80s to the 70s to the 60s and finally into the 50s for no apparent reason.  With him already on maximum support there was nothing else the doctors could do to stabilize him.  As my dad went to call Joe to rush back to the hospital my family and I stood next to his incubator and prayed for him to rebound - telling him he could do it and how much we all love him.

As we watched in terror his oxygen saturations just kept getting lower and lower; I kept asking the doctors if there was anything else they could do.  With grim faces the doctors told us "No.  All you can do now is hold him, comfort him and say goodbye."  The attending doctor explained that this was Benton's way of letting go. That his little fragile body could not take anymore and since his numbers were not bouncing back, he will not make it. She told us that we needed to hold him now, that she didn't want us to lose that chance to hold our baby while he was still here.  I started begging and pleading that there must be something else they could do but they insisted there was not and all we could do was hold him and tell him that we love him.  To say we were completely heartbroken is the understatement of the century. We did not want our poor baby to suffer anymore but so badly wanted to spend more time with him, to love him and watch him grow up. We weren't ready yet, it was just too soon. He was born just too soon.

 

After weeping and realizing the enormity of this moment in our child's life, we decided we should hold him and comfort him.  Even though Benton was already 6 weeks old, Joe had still not held Benton since he was so fragile and sick.  I told Joe that he needed to hold Benton before he passed; that he needed that moment to bond with his son.  So the nurses helped to put Benton in Joe's arms.  It was such a scary and beautiful moment to see Joe hold Benton for the first time as we were telling him goodbye.  We sat with Benton telling him everything from our heart, how much we love him, our dreams of him growing into a healthy young boy and our life as a happy family. It was so heartbreaking but we knew the situation was dire and we wanted to savor every last moment we had with our lovely, beautiful baby boy.  The attending doctor, Dr. Ramasethu, said he could pass very fast or it could take a couple of days.  

Joe holding his son for the first time.

Saying goodbye.

 

After Joe was done holding our beautiful son, I was finally able to hold my baby on my chest, his tubes and wires carefully placed around me connected to all the monitors we all nervously watched, terrified of what the numbers would say as he fluctuated between sating and desating.  Holding my baby boy was the best feeling in the world, feeling his heartbeat along with mine, kissing his warm, peachfuzz head. As I sat there with him clutched to my chest, I felt like I was dying inside thinking that this would be my last time holding him.  Surrounded by our family we talked to Benton all day long as he laid on my chest, reading him his favorite stories, telling him how much we love him, sobbing uncontrollably and sleeping together.  In the span of less than two days I spent over 33 hours holding my amazing son attempting to say goodbye to a little life that was to be taken too soon.

 

 

 

With Joe at my side and with the support of my sister, mom, dad, and mother-in-law we spent four straight days in the NICU as we all said goodbye to Benton and tried to deal with this impending loss. Without my family's support I don't think I would have made it through those very dark days.

 

Miraculously, while we were holding him his saturation levels went up into the 90s.  When the  attending doctor arrived the following morning and saw we were still holding our son, and he was actually sating well, she was very impressed.  She hadn't expected him to make it through the night. Since holding him seemed to be helping, whenever he had another episode of lower saturation levels we continued to do kangaroo care.  Each time we held him his saturation levels would bounce back into the 90s.  The doctors said that they were befuddled, that while studies had shown that kangaroo care does help development in premature babies they had never seen such an extreme case of improvement like Benton's.   

Since Benton was starting to stabilize and sat better the attending doctor said she wanted to do a brain scan to see if the oxygen depletion had caused him major long term brain damage.  The doctor said that if she saw major damage, she felt continuing treatment would be futile. We were so scared for them to do the brain ultrasound because usually Benton desats during the procedure. Luckily he did really well during the scan and when the doctor got the results she was happy to say there had been minimal change from the original scan. We were thrilled at this news, the doctor said that as long as Benton is continuing to fight to be here with us, the hospital will keep fighting for him.  It was amazing to hear that the doctors weren't going to give up.  Even though we had a glimmer of hope in our hearts the doctors made a big point of saying that he has still has an extremely long, hard road ahead of him, and that he is still very much teetering on the edge of life.

 

Over the next few days leading up to Christmas, each day we spent all day with our little man holding him every time he de-sated.  Each night I slept with him in my arms with Joe sitting next to us in a rocking chair.  We wanted to get as much time as possible with our little one in case that day might be his last, but with each passing day he started to improve.  In the words of one of his nurses, "Benton's made a U-turn".  As each day passes he has been coming down on almost all of his supports.  His dopamine, oxygen, nitrous oxide and hydrocortisone are all being weened.  His latest echocardiogram showed that there has been a slight improvement in the pressures in his heart and lungs.  In addition, they have also said that his kidneys have now returned to completely normal functioning and his urine output has been very stable.  He still has a lot of edema, but that seems to be slowly coming off and moving in right direction.  All in all, we couldn't have asked for a better Christmas miracle and we are still praying for continued improvement and progress.

Sleeping with our little miracle.

This Christmas we count our blessings and are so thankful that he is still here with us and that the power of our love and skin to skin contact was the medicine he truly needed.  It makes me feel so good to know that I can hold Benton and give him the love and care that he needs to grow and survive. Kangaroo care is amazing and I am forever grateful that Joe and I were able to hold our son as he went through this terribly horrible time.

 

We truly appreciate all your prayers, love and healing energy being sent our beautiful son's way. We have a very long road ahead of us but we are forever grateful he is still here.

Trying to be strong.

Update - He's Holding On After His Critical Turn (Days 38-42)

Our sweet little fighter on his 6 week birthday.

To everyone that follows this blog, I apologize for the dearth of updates over the past week.  This time has been so full of ups and downs that there was never a moment that I was able to sit down at my computer and actually put words to paper.  In short, Benton seems to be pulling through this latest challenge and he is taking micro-preemie sized steps on the road to recovery.  The doctors keep stressing that he is still extremely critical and not out of the woods yet but he has stabilized.  As the main attending doctor put it "he has started the long journey up the mountain, he started slipping back down but we shoved him back; he is still near the bottom and has a long way to go".

Now that I have told you the short and sweet version - that Benton is still holding on - I will tell you the long version of this last week's turn of events...

On Monday morning I woke up and it felt like any other day.  I teleworked in the morning and then headed off to the hospital to visit my little man at lunchtime.  When I walked into the NICU, I immediately glanced across the bay and saw a lot of activity near Benton - this was not a good sign.  As I walked over it seemed like everything went into slow motion.  I immediately walked up and saw that Benton's oxygen saturations were extremely low in the 50s and he was requiring 100% oxygen.  The attending doctor came over and said things were extremely critical and that Benton was needing full oxygen support and they would do what they could to help him.  Hearing this news, my heart just dropped in my stomach.  I called Joe to rush to the hospital and then just sat and stared as several doctors and nurses buzzed around my son's isolette trying to stabilize him.  I kept watching his oxygen saturations drop lower and lower until they bottomed out in the low 30s.  Joe and my mom rushed into the NICU and joined me and my mother-in-law and we all just watched in horror as they tried to stabilize my little boy.   The doctors threw everything they had at Benton: dopamine (to increase his blood pressure), hydrocortisone (a steroid to increase his blood pressure and reduce inflammation in his lungs), nitrous oxide (to dilate the veins to his lungs so blood could better circulate), antibiotics, nebulizers and morphine.  As we stood there we prayed that his numbers would bounce back like they had 3 weeks ago when he had required 100% oxygen and the nitrous had helped....but this time his numbers didn't rebound.  The feeling of helplessness and terror that seized me was all encompassing and the tears just started to flow.  I went to call my dad and sister in Hawaii and explain the situation and I couldn't hold back the tears despite being in a hospital hallway.  By the time I finished the phone calls I was sobbing uncontrollably and another NICU mom had to help calm me down and hug me telling me "You have to be strong for your son - you can't go back into the NICU while you are crying - you must be strong for your son and have hope and faith".

At this point, the attending doctor took our family into the dreaded side room off the NICU.  She sat us down and explained that Benton had multiple organ failure and was also suffering from pneumonia. His lungs were failing as a result of pneumonia, his heart was failing as a result of compensating for his lungs and his kidneys were still experiencing renal failure.  The doctors explained that Benton's lungs were already so damaged from weeks on the ventilator, various lung collapses, and extreme prematurity that his lungs were not able to compensate for the additional stress of the pneumonia.  Hearing this news made my heart just break.  The doctors said that they have done all they could for Benton and that he could not survive with his oxygen saturations in the 30s, 40s and 50s and therefore they would continue ventilating him but would not give him chest compressions.  Furthermore, the doctors said they were unsure of what type of lasting damage had been caused by the oxygen deprivation to his body as they were trying to bring him back.  At this point, Benton was at an oxygen saturation of 50.  We were told that the doctors would give Benton one hour to recover and hopefully we would see improvement in his oxygen saturations.  If after that hour no improvement had been made the doctors told us time and time again we should just hold Benton and say our goodbyes.

Sitting vigil next to our little man.

 Hearing this news was the most devastating moment in our entire lives.  After the doctors gave us the news they left our family to digest everything.  Joe and I curled up together and just started sobbing.  We kept saying how much we loved our little man and how honored we were to be his parents.  Joe said that one of the best moments in his life was reading stories to Benton and I kept saying that holding Benton this past Friday for kangaroo care had been the best moment in my life.  Hearing us say these words out loud made it seem more real that we could be losing our son before day's end.  After what seemed like an eternity of crying and sobbing we pulled ourselves together to go see our beautiful son.  As we sat with him our nurse, Mary Anne, said we should hold him (i.e. put our hand to hold his head and feet) so Joe and I each put our hands on our son and held him for what we thought might be our last time.  As we sat there sitting vigil by his bedside we took turns holding Benton and reading him his favorite stories and praying.  As we sat with Benton he began to slowly, slowly, slowly increase his oxygen saturations from 50 to 51 to 52 and so on until he finally reached the low 70s.  It's so scary to watch your son walk the tight rope between life and death.  If his sats had dropped from 50 to 30 we would be saying goodbye but since his sats went from 50 to 70 Benton could continue his fight on the road to recovery. 

Joe and I holding our sweet boy.

As the day wore on, our emotions became utterly frayed as we alternated between praying, trying to enjoy what could be our last minutes with our son and trying not to stare at his monitors.  A mother's love is all encompassing, but having to watch your son teeter on the edge of the cliff called life was unbearable.  Each time his numbers dropped even a smidge my heart filled with terror.  At one point later in the day a radiologist came to do a renal ultrasound to better understand what was going on with his kidneys, but Benton was not having it.  He de-sated back down to 30 and watching this go on and be able to do nothing to stop it was excruciating.  Luckily the doctors stopped the ultrasound early because Benton was not tolerating it at all.  By nights end all our family was stopping everything they were doing to come be by our side be it by planes, trains or automobiles from across the country.  In the face of such devastating news and such minute to minute panic its wonderful to know that we have such a supportive family who would rush to be by our side.

After sitting vigil with Benton all night long with each family member doing shifts and me pumping every few hours by his bedside, Benton started to slowly slowly stabilize.  On Monday evening out of nowhere Benton started peeing and hasn't stopped since.  While we couldn't have been happier to find out that Benton was finally peeing it was bittersweet because one organ was finally making a recovery as the others were failing.  However, by Tuesday mid-day the doctors were telling us that we needed to go home and rest because Benton was doing okay but was still extremely critical.  Since then he has continued to stabilize with the normal ups and downs along the way.  One hour he will be down to 65-70% oxygen and then less than an hour later he will be back up to 100%.  At this point any stimuli is extremely unnerving for our little man and he has not been tolerating being touched, moved or even having his diaper changed during cares without de-sating.  The doctors say this is normal and that he will take a long long time to recovery from his illness and subsequent lung problems.  As of now Benton has made a 5% recovery, according to the doctors, and they seem happy, thrilled even, with his progress against all odds. 

Benton in his big boy diaper since he hasn't stopped peeing!

Joe and I would like to thank everyone who has sent love, thoughts and prayers to our beautiful boy.  We are convinced that with everyone's positive healing energy being directed to our little man he was able to overcome the odds and come back from the brink.  We are forever grateful for everyone who has supported us through this trying time.  Each note, text, call and post have uplifted our spirits and let us know that we have the love and support coming from all over the world.

Happy 6 Week Birthday to Our Little Fighter!

Days 34-37

I had written this blog post before everything happened on Monday.  This will give a bit of back story on the events before everything went downhill.

Happy 5 week birthday!

The last few days have been an exercise in patience and hope mixed with a touch of terror.  Benton had stopped peeing again and his edema is the worst its ever been.  As of Monday December 16th he is over 2 lbs (930 g) but his actual weight should be around 650 g.  Each night he can gain over 100 g which is about 20% of his body weight that's like gaining 30 lbs out of nowhere for a average 150 lb adult.  Despite the doctors best intentions nothing they have tried has worked thus far.  It seems like the doctors just keep pumping him full of diuretics and albumin to help take the fluid off but with no result.  On Thursday the doctors decided to add a low-dose dopamine drip which would help to open up the blood flow to the kidneys and it worked for one diaper.  Benton was able to produce an 11 ml diaper which was phenomenal.  We had hoped this was the start of good things to come but many of his subsequent diapers have been dry with no pee to speak of.  The doctors have also tried a new diuretic called bumex which is supposed to be stronger but that has not worked yet either.  We were told that with bumex each dose he will get a larger amount and at some point it will tip the scale and force him to pee….they just need to find his sweet spot.  Knowing this is all well and good, but until my son starts peeing again regularly I feel as if I am forever on edge.

Holding daddy's finger.

In other news, Benton has taken a few steps backward on his feedings.  As of Thursday they were up to 4ml feedings every 4 hours which was amazing.  But Benton kept having diarrhea and they felt that he was not actually absorbing the nutrients of the feeds.  Because of this the doctors decided to knock his feeds down from 4ml to 3ml every 4 hours so they could continue giving him appropriate nutrients in his IV fluid.  While this felt like a small step backward it really was no big deal in the scheme of things.  But then on Saturday the doctors called us to say they were stopping all feedings because they suspected he may have another infection or perhaps even NEC.  They suspected another infection because his tummy is that dreaded "dusky" color again. They also expressed concern that he was more lethargic than usual and his stomach girth was increasing.  But the nail in the coffin was the fact that his lab work showed that he had had a sharp drop in his platelet count.  We and the doctors were faced with a double edged sword - start treating the boy with a broad spectrum of antibiotics to help fight the infection but this could hurt his kidneys even more when they were just starting to recover.  The doctors decided to hold off on administering the antibiotics after they spoke with the specialists at the Pediatric Infectious Disease unit.  The doctors redid Benton's blood work to see if his platelets were still extremely low but his lab results no longer showed a low platelet count.  This means the results from the previous day's labs were flawed and Benton might not actually have an infection.  Later on Sunday evening as we were helping with his cares, his nurse Meghan checked to see if he has any residuals in his feeding tube and it came back with green bile.  Green bile is synonymous with NEC.  Looking at that green coloration in his feeding tube I felt utter terror.  I broke down sobbing and had to leave the NICU to recover.  It felt like we had just overcome this last infection and its after-effects were still wracking havoc on his system with the leftover edema.  I couldn't take the idea that he might have to go through this all over again.  With all of the factors currently in play the doctors have said its a waiting game.  They will continue to review his labs, check his residuals, his tummy color and girth and then decide if he needs to start the antibiotics.  We keep hoping and praying that he doesn't have an infection and that his only true issue is his kidney function and the resulting edema.

Chillin.

To add insult to injury, over the weekend Benton's oxygen requirements kept slowly increasing from 60% to 70% to 80% to 100% on Sunday.  When we arrived at the hospital Sunday afternoon he was not sating well (only in the 70s) and his oxygen concentration was at 100%.  This seemed like deja vu.  Three weeks ago to the day Benton had taken a turn for the worst and his lungs had not been saturating well despite being on 100% oxygen.  Last time they had to give him nitrous oxide to help dilate his vessels around his lungs.  This time they decided to give him a larger tube.  This would help in case the tube had a clog that was preventing oxygen flow, but in addition Benton had grown enough that his old tube was producing a leak and much of his oxygen support wasn't getting to him anyway.  The doctors re-intubated Benton with the 3.0 tube and immediately he began sating much better.  By the time we left the hospital that evening he was down to 75% oxygen and was sating well.

In the midst of all this scary news, there have been some moments where we have been able to just enjoy our little man.  On Friday, I was able to hold Benton for kangaroo care again.  This time I was allowed to hold him for over 2 hours and I actually started nodding off to sleep as he dozed in my arms.  It was the most calming feeling to have my baby sleeping in my arms and breathing against my chest while my eyes kept getting heavier and heavier.  There is something about a napping baby that makes you just so tired.  Holding him is always the highlight of my day and this extended kangaroo care was the absolute highlight of my week.  On Saturday, Joe was finally cajoled into changing Benton's diaper for the first time.  Many of the nurses had been betting they could finally convince Joe to change a diaper and that day finally occurred this past Saturday.  Joe was a champ and he didn't even flinch when Benton pooped on his hand :)

Up close and personal doing diaper duty.

Also on Saturday we met up with one of the NICU graduates who is currently a student at Georgetown.  He was born at 25 weeks back in 1994 so he is one of the ultimate success stories.  He had met us early on in our NICU experience and he had come by the NICU to give Benton a Christmas present which was unbelieveably thoughtful and so sweet.  Benton was given a cute Hoya (i.e. bulldog) stuffed animal which is the Georgetown mascot.  The bulldog was so cute and cuddly but the sentiment was even sweeter...in the card the NICU graduate explained that when he was in the NICU his mom took a picture of him next to a similar stuffed animal and it was amazing years later seeing how much bigger he was than the stuffed animal when at one point it was bigger than him.  The same could definitely be said about Benton so it will be cool to see how Benton grows in comparison to the bulldog over the years.

Benton next to his bulldog.

I wish that this blog post was full of happy news, but the reality lately has been pretty scary and it has definitely started to take an emotion toll on us as well as our extended family. 

Prayer Request

Today Benton has taken a very critical turn. His edema has been affecting his organs and the swelling is causing him lung, heart and kidney failure. He is currently at 100% oxygen and we are trying Nitrous Oxide treatment again to help him. The Nitrous is not yet working and though we remain hopeful and have faith in our little boy, the doctors are extremely worried about his outcome right now.

Please pray for our beautiful son, send him your love, positive thoughts, and healing energy so that he may keep on fighting. We believe that all your prayers have been monumental in his recovery and sincerely appreciate all the love and good thoughts you're sending his way.

Hopefully Staying the Course, Days 31-33

Wide awake and feisty little man!

The past few days since Benton's one-month birthday have been an effort of staying the course.  Over the weekend Benton had started peeing again and we were ecstatic.  It was such a great one-month birthday present for him and his parents that he was peeing again. By Monday, however, Benton's peeing had started to taper off again and the doctors were concerned.  The doctors examined his labs and it looked like this time the cause for the diminished peeing was due to heightened calcium levels and a lack of albumin in his blood.  The calcium was causing him to create more kidney stones and the lower albumin levels meant he couldn't pull the liquid into his blood stream that was causing his edema.  The doctors explained that this was not acute renal failure like last week, but rather his kidneys were trying to heal and were "rubber-banding" back and forth between peeing and needing more time to heal.  This definitely seems to be the case because over the past three days he has gone from peeing very little to peeing a lot with many variations in between.  Hopefully he can stay the course and just continue peeing so he can get rid of his edema.

In addition, his heightened edema has continued to plague him and cause various problems to his organs.  At first it seemed that the edema was mainly creating problems for the lungs since the extra pressure of the liquid on his lungs required more pressure on his ventilator.  We want the pressure on his ventilator to be going down, so every time they need to increase the pressure its one step further for him to get off the ventilator and down to the CPAP, which is when Benton will no longer be intubated.  On Monday, the doctors heard a heart murmur while they were examining him and they ordered an echo.  After reading the results the doctor told us that that his PDA (a duct in his heart) had re-opened due to the pressure of all these extra liquids being in his body. The doctors indicated that the duct may close after his edema has gone down, but if the PDA doesn't re-close Benton may need heart surgery in the future.  Many of Benton's NICU neighbors have either had the PDA surgery or are in line to have the surgery soon so if and when we get to that point we should have a lot of other families to talk with and hear their experiences.

All cozy in his snuggle-up.

On Tuesday we had another family meeting with the attending doctors and the social worker.  We were scared to have a family meeting especially after we were blindsided with lots of bad news at the last one, but the family meeting is supposed to be a way to hear about Benton at a holistic level and understand how each of his systems are working.  At yesterday's family meeting we were given the breakdown on all of Benton's systems and everything we heard we were aware of before.  The doctors remain concerned about his kidneys, his lungs and how he will tolerate his feedings.  They also gave us what their hopeful goals are for the next 2 weeks.  Dr. Scalia hopes that Benton will continue to tolerate his feeds and get up to full feeds so they can take out his PICC line which provides his IV fluids.  The doctor also hopes that he continues peeing, sheds his edema and that this helps his lungs need less ventilator pressure.  Hearing a hopeful picture of Benton's future gave us strength and allows us to focus our prayers on his next steps.

Today was a pretty good day.  Not only was Benton peeing again with the help of the lasix, but his stomach girth went down which hopefully means his edema is starting to recede.  While Benton had been doing well on his feedings he has had some fits and starts since they increased his feedings from 2ml to 3ml every 4 hours.  At 8am he had not digested his feeding so they re-gave him the milk and by noon all was well and so he was able to feed again, but then it happened again at 4pm.  Hopefully he continues being able to maintain his feedings because that is the only way he can grow.  Overnight his nurses had weighed him at 880 grams but this is an overestimate due to his edema.  Even though he is still so tiny we want him to lose weight so that he can get rid of his edema.  Its weird to think that Benton needs to lose weight in order to be healthy but we need that weight to not be artificially high from retaining water. 

Holding Benton's feeding tube.

Today was also another opportunity for me to do kangaroo care with Benton again.  Every time I get to hold him is the best day in the world and today was no exception.  Looking at his peaceful face while he lies on my chest makes me feel whole.  My mom and my mother-in law had brought a mirror with them that day and they both took turns holding it up so I could view Benton's handsome face while he nuzzled my chest.  The whole time he was lying on me Benton was high-sating and his title volumes (i.e. the amount of volume he was taking into his lungs) were at all time highs.  It's nice to know that he enjoys his kangaroo time as much as his mommy.  :)

Thank you to everyone who is following this blog and sending us encouraging notes and comments.  Every comment, note, card and email we receive touches our hearts and gives us strength.  So thank you for all of your support.  Please continue sending your thoughts and prayers to our little fighter.  He needs your prayers to help him keep peeing, get rid of his edema and succeed in tolerating his feedings.