Happy 12 Weeks! Day 84

Our little cutie has hit the 12 week mark and to celebrate he got to wear his first outfit and cheer on the upcoming Super Bowl!

A Momentary Blip in the Road: Day 83

Interacting with Mom and Dad

On Thursday, Benton turned 35 weeks gestation and as always I called the NICU to see how he was doing since I was at work.  Well while I was hoping for good news, I was greeted by the news that Benton was requiring 100% oxygen again.  This was super upsetting since he had only been requiring 50-60% oxygen the day before.  I didn't know what to do - leave work early and go see my little angel or stay put since I had been told he was stable despite needing an increased amount of oxygen.  Luckily Joe was able to go and check on Benton during lunch and told me that Benton was doing fine despite the need for more oxygen.

As soon as work let out I rushed to the hospital to see my little man.  He was still needing 100% oxygen and the doctors came over to talk to us.  The doctors had done an x-ray of Benton's chest and saw that part of Benton's right lung had collapsed and this in combination with an increase in his secretions were causing him difficulty breathing.  It seems that weaning his ventilator pressures to 30 was too much for the little tyke so while we were standing there the doctors increased his pressures back up to 33.  As always it seems that Benton makes a few steps forward and then a few steps back.  But I just have to keep telling myself that each time he has these step backs he is stronger than he used to be. 

Resting Cutie

As we spent the evening with Benton his secretions were thicker and the doctors decided to do a blood culture and start antibiotics in case he had a case of pneumonia.  The doctors were also concerned that he might have a virus since his platelets and white blood count numbers had been somewhat concerning.  Hearing this news just felt like a punch to the gut.  Benton had been just about to get his PICC line out on Friday, but now that he was on antibiotics the PICC line was going to stay in.

As I sat in the waiting area while Benton's blood cultures were taken, I spoke with the family of another 23 weeker that had been born a few days after Benton.  Their son was doing great and was actually not even requiring any type of oxygen support and was already on full feeds.  This news was hard to take, but as I sat there telling myself that every baby is different and I can't compare them - the family told me that the mom was getting to breast feed her baby for the first time that day.  My heart just broke hearing that.  I know I should be happy for other moms and share in their joy as their babies reach new milestones but sometimes it feels so unfair.  Benton and this other baby were the same age yet Benton was still requiring so much support and his lung had just collapsed that day, while this other mother was getting the joy of breastfeeding her little one.

For those of you that read the blog - you know that we try to stay positive no matter how hard it gets and how many tough breaks are handed our amazing little man - but at the end of the day I am a regular person, who feels jealousy despite wishing I didn't feel that way.  Sorry for the pity party, but this blog is not only for updating our loved ones about Benton's progress, but it is also my cathartic outlet as I continue on this journey as a NICU mom.

Please continue praying for our little guy especially to help his lungs get stronger as this seems to be our biggest roadblock at this time.

Joe comforting Benton

Growing and Growing: Days 75-82

Awake cutie

The past week has been such a blessing as we have watched Benton grow stronger each day.  Over the past 7 days Benton has made strides in his feedings and is now up to 6.5 ml/hr continuous from 1.5 ml/hr.  This is huge because it means he is more than half way to full feeds!  Once he reaches full feeds his PICC line will come out.  The PICC line is a permanent IV catheter that delivers all of his IV fluids and medicines.  Benton has had his PICC line for over 2 months so you can only imagine how small the original catheter must have been since he only weighed 1 pound.  Having your PICC line removed is a huge deal because it is one more milestone he has reached on his journey toward home.

Recently I have gotten to hold Benton in kangaroo care which is always the highlight of my week.  Feeling his warm little body rest against mine is the best feeling in the world.  Today when I held Benton he pushed against me and turned his head so that he could look into my eyes.  Getting to interact with my little man is amazing.  These moments make me realize just how wonderful parenthood already is and I can only believe it will be even better when I get to have my little one home with me every day.



Benton is still struggling with his ventilator as the doctors try new tactics to help him wean off his oxygen requirement.  Last Friday the doctors attempted to switch his ventilator to the assist control volume guarantee setting which allows the doctor to set a specific title volume (i.e. how much Benton's lungs expand with each breath) and then Benton can use more or less pressure depending on how much he needs.  This setting is better for weaning babies off the ventilator, but when the doctors switched Benton to this mode he started de-sating and required 100% oxygen again.  When I arrived to visit him at lunch that day he was back up to 100% oxygen and sating 50-60 and at one point dipped down to a saturation of 20.  Watching these numbers I felt that same dark pit in the bottom of my stomach and wondered to myself could this be the end after we have come so far.  But Benton prevailed and once the doctors switched him back off that mode and increased his pressures up to 36 he went back to sating in the 90s again.  Thank god!  After this hiccup, Benton has slowly required less pressure going from 36 to 34 to 32 to 31 and today to 30.  The doctors are no longer going to try the volume guarantee setting on the ventilator and are going to have to rely on weaning him the old fashioned way.

With the ventilator pressures slowly decreasing, Benton has been able to wean his oxygen requirement from 100% to 70%.  Yesterday he even hit 48% oxygen for this first time in over 2 months! While this was just for an hour it definitely shows that his lungs are starting the slow healing process and he is improving bit by bit.

Benton's tape beard

As Benton continues to grow we find out new and interesting things about the NICU.  Apparently it is the parents job to trim and cut the baby's nails and it's not something the nurses can assist with since it's not medically necessary.  I had never really given a second thought about manicures for babies - I don't know if it was just from naivete or just the fact that I figured a baby's nails wouldn't grow that long until they were at least a few months old - but we didn't even own a set of baby nail clippers.  Well, we are now the official owners of a infant manicure set and Benton got his first manicure last night!  Joe was super brave and trimmed Benton's nails and Benton didn't seem to mind :)

Benton's first manicure

I know in our last post I mentioned that Benton hadn't pooped despite starting continuous feeds.  Well on Friday the day had finally come for him to get a suppository because he couldn't seem to shake his constipation.  Luckily the suppository worked and Benton was able to poop for the first time in 9 days and he hasn't stopped since.  I'm sure that Benton feels quite a bit of relief and in just that one poo he lost 2 cm in girth!

My little boxer!  These mittens help to stop Benton from grabbing his tube.

The other day I was looking through old pictures of Benton and it is truly amazing to see how much he has grown over the past 11 weeks.  Today he weighs 2 kilograms (4.4 lbs) and is almost 15 inches long.  Granted some of that weight is his edema, but even the doctors believe he is at least 3 lbs 10 oz!  I sometimes can't believe that he has grown so much - almost tripling his weight since birth.  We couldn't be more prouder of our little man and we feel so truly blessed to be his parents.

As this week progresses we are hoping for Benton to continue improving each and every day.  We pray that he can get up to full feeds and get his PICC line taken out, that his lungs get stronger and he requires less oxygen and that his eyes continue to improve.  Thank you to everyone for all of the thoughts and prayers you are sending our beautiful boy.  I can't help but believe that each prayer makes him stronger and having prayers from all over the world being sent his way is the best cure!

Happy 11 Week Birthday!

My Little Boxer: Day 78

Over the weekend Benton started to really hate his ventilator tube.  Since he is now in his "micro-preemie teenage years" according to our nurse it's normal to see Benton grab at his various tubes and leads and try to rip them off.  He has been pulling out his feeding tube and attempting to extubate himself.  To help keep him from grabbing his ventilator tube we bought him mittens.  These mittens make him look like a little boxer which is fitting because he is kicking some NICU butt!

Again please excuse my baby talk and just enjoy the cuteness of him stretching out and enjoying his isolette.

No Nitrous No Problems: Days 70-74

Sleeping cutie on his new elephant sheets

This past weekend has been a big one for our little man.  After his eye surgery on Thursday, the doctors turned their attention to continuing the wean on Benton's nitrous.  Right before the eye surgery the doctors had made the call to wean his nitrous from 4 to 3, but during the surgery they decided to knock his nitrous back up to 4 to help him through the procedure.  Over the weekend they continued to wean Benton's nitrous and by Sunday he was off the nitrous!  This was huge news because Benton had been on nitrous for over a month and usually the doctors like to use nitrous for just a few days.  The fact that Benton was finally able to wean off the nitrous made us ecstatic and is hopefully an indication that he is truly turning a corner.

In addition, the doctors have been weaning Benton's ventilator pressures from 33 to 31 to 30 to 29.  Apparently this was a little too much too quickly for Benton in light of the fact that the nitrous was gone, because as soon as the ventilator pressures went down past 30 Benton started to require 100% oxygen again.  For at least two days Benton required 100% oxygen and every time this happens my nerves stand on end!  The doctors decided to bump his ventilator pressures back up to 31 and today Benton has been requiring a bit less oxygen again (only 80%).  What a relief!

Relaxing in his isolette

Benton's feedings have been going pretty well and he has worked his way up to 4ml every 4 hours.   In order to check how Benton is tolerating his feeds the nurses check his residuals at each "cares" to see if any milk has still not been digested by his stomach.  Basically the nurse uses Benton's feeding tube to pull back on his stomach juices and see if any leftover milk hasn't been digested.  A few times Benton has had some pretty substantial residuals, but overall he has been doing great.  As a result of his residuals, today the doctors changed his feeds to continuous feedings of 1.5ml per hour (the equivalent of 6ml every 4 hours).  This means he will get a continuous drip of milk into his belly rather than a big meal every 4 hours.  This is quite a big boy move for Benton and we are psyched to see Benton progressing further in his feeds.

Breast milk continuous feed

Since Benton is now holding his own temperature in his isolette he no longer needs to be naked and just wearing a diaper, but can actually be swaddled and potentially wear clothes.  Needless to say hearing this information made me super excited!  After two and a half months I could finally buy something for my little man that he could actually wear and decorate his digs.  Over the weekend my mom and I went shopping to get Benton some receiving blankets and his very first outfit.  As you can see in the pictures we had quite the time and Benton now has blankets with firetrucks, police cars, elephants, giraffes, polka dots and blue stripes.  The nurses say with Benton just starting his continuous feeds they don't want him to wear clothes just yet but we can swaddle him in different blankets on a daily basis.  Once he gets to wear his first outfit I will post it here...until then its a surprise.

Cutie looking out with his brand-new gingham sheets and firetruck blanket!

Today, the opthamologist came back to check on Benton's eyes for the first time since surgery.  Ever since the surgery Benton has been opening up his eyes a lot more and it seems like he is tracking movement a bit better, so we were definitely hopeful going into today's checkup.  Well the opthamologist checked out Benton's eyes and gave us a double thumbs up!  She was very happy with Benton's progress even though its only been 5 days since surgery.  The doctor said all of the haziness in his right eye is gone and it must have been associated with the ROP rather than a retinal detachment or cataracts.  In addition, his advanced Stage 3 ROP with plus disease has improved slightly.  As the doctor put it "his eyes are now quiet Stage 3 ROP and the swelling of his vessels has gone down".  This was great news!  The retinal specialist had said it was unlikely we would see any real change for the first checkup so this much improvement was definitely good.  We will continue hoping to see further improvement in the next few checkups and hopefully by next week it will no longer be Stage 3 ROP.  The opthamologist was also happy because now that his eye haziness has disappeared the doctors will have a better view of his eyes in case they need to do further laser surgery to help improve his eyesight.

Eyes wide open

All of this news has definitely been a whirlwind.  With each piece of good news we get more hopeful for a happy ending.  Tomorrow Benton gets another echocardiogram to check on his heart and we will continue to hope for good news.  Please continue to keep our son in your thoughts and prayers. We are praying that his lungs get stronger each day and one day he goes off the ventilator, that his heart gets stronger and loses any remaining pulmonary hypertension, that his ROP goes away and he retains his sight, that his immune system stays strong and keeps away any infection, that his feeds continue to go well, and that Benton poops since he hasn't pooped in a week.

Sushi-themed 9 week birthday sign!

MacGyver-themed 10 week birthday sign!

My Little Wiggle Wort: Day 70

Check out our little cutie wiggling around and getting more active by the day!  He looks like he wants to do pushups. Please excuse my baby talk :)

Request for Donated Annual Leave

To everyone who reads this blog-

Over the past few months I have been blessed with kind words of encouragement, food deliveries, books for Benton and many many offers of help.  While I normally try not to ask for a handout I felt the time was right to reach out to the many people who have followed Benton's journey and ask for assistance.  As many of you know the last few months have been very difficult on my family.  I am writing to you in the hopes of requesting donated leave.  While I know this program only exists in the federal government, I know that so many of you either work in the federal government yourselves or have friends that work in the government.  With everything that has happened over the past few months, almost all of my leave is exhausted and I would so appreciate even an hour of donated leave.  Any and all help would be so appreciated - be it you donating a small amount of leave yourself, or simply sharing this request with someone you know in a federal agency. 

If you or a friend is interested in donating leave please let me know and I can help to guide you through the process and send you the various forms.  Depending on which agency you are in there are different forms for donating leave.

• For those in agencies outside of HUD you need to fill out the OPM Form 630b which allows for donating across agencies.  Once you have filled out that form you need to provide it to your agency's voluntary leave coordinator.  Your agency's voluntary leave coordinator should either email or fax it to Virginia Spence (virginia.a.spence@hud.gov) and cc me (marika.m.bertram@hud.gov).  Virginia Spence's fax number is 202-708-6232. 
• For my HUD friends you need to fill out a HUD form 2060 and email it to Virginia Spence (virginia.a.spence@hud.gov).

The forms ask you for a lot of information so to help streamline the process I have posted it here:
Leave Recipient's Name: Marika Bertram
Agency: Department of Housing and Urban Development
Agency Address: 451 7th Street SW, Room 2168  Washington DC 20410
Organization: Office of Field Policy and Management. 
Work phone number is 202-402-4413.

To all of you considering donating leave I cannot thank you enough and you have my undying gratitude.  I hope that I can have enough leave to stay steadfastly by my son through his upcoming trials and tribulations and be able to be home with him when he finally and triumphantly comes home.  I cannot thank everyone enough for all of the kind words of encouragement over the past few months and all the love and prayers that you have sent to our lovely son.

Thank you! Thank you! Thank you!

Benton is a Bad Ass: Day 69

Yesterday's eye procedure went extremely well and our little man took it like a champ!

Cutie before surgery.

Waking up yesterday morning I felt a pit of fear in my stomach and I knew it was just nervous pent up energy for my son.  It's a weird feeling such nervousness and not being able to do anything about it except breathe.  The retinal specialist was set to arrive at the NICU at 5pm so we arrived early to be able to spend some quality time with our little man before they had to start putting in the painful eye drops and prepping him for the procedure.  We kept asking his nurses and doctors about how this meeting with the retinal specialist would go and they really couldn't give a good indication which only compounded my nerves.

According to the doctors, the retinal specialist would examine his eyes and see if either retina had already detached and see what stage Benton's eyes were in before deciding what route he would go to fix Benton's eyes.  We knew there were three possibilities.  One- a shot called avastin would be injected into his eyeball to stop the growth of the vessels ( this procedure is newer and has only been used for 2 years).  Two- laser surgery to help destroy the blood vessels encroaching onto his retina (most common procedure). Three - full surgery to reattach the retina.  The last would only be used if Benton's retina had already detached which we were praying had not yet happened.  Not knowing what surgery Benton was about to receive was very disconcerting because it just feels like everything is up in the air.

When the retinal specialist finally arrived he got right to work and examined Benton and then came out to speak with us in the waiting room.  He explained that he wanted to go with the shot method even though it is rarely used.  The reason for this is that one of Benton's eyes is so hazy he believes if he tried to laser that eye Benton would still have a 50-70% chance of becoming blind just because he wouldn't be able to be as accurate.  With the shots he could reduce Benton's chance for blindness down to 10-15%.  The doctor also explained that he could do laser in Benton's other eye but since that eye had severe Stage Three ROP in zone 1 (the worst place to have it) that the shot would be a better method for that eye as well.  After the explanation we immediately signed the consent form and the doctor went back in to do the procedure.

Benton did extremely well during the procedure and the retinal specialist seemed happy with everything.  We won't know how well Benton's eyes reacted to the surgery for at least two weeks.  At that point they will hope to see improvement in his ROP.  It is still possible that he might need more surgery or that this won't stop him from becoming blind, but his chances are so much better now than they were even a day ago.  

It's weird to think that today my little boy had a shot injected into his eyeball.  It made me remember that scene in the movie Love Actually where the widower is concerned his son is acting so withdrawn and staying in his room and says "god I hope he's not shooting heroin into his eyeballs".  Well after Benton's surgery he can always tell people he is a bad ass and had shots injected into his eyeballs when he was only a baby.  We are obviously blessed with one amazing baby that has so much courage against all the adversity and we couldn't be prouder of him.

Please continue to keep our son in your thoughts and prayers.  We are praying his ROP goes away and he retains his sight, that his lungs get stronger each day and one day he can get off the ventilator, that his immune system stays strong and keeps away any infection and that his feeds continue to go well.

Our sweet little fighter!

The Eye Exam: Day 67

Benton swaddled in his new blankets!

Yesterday was Benton's first eye exam and to say I was nervous is the understatement of the century.  While an eye exam may seem innocuous, in a premature infant it is decidedly not.  Starting at 32 weeks gestation each preemie needs to get their eyes examined each week to ensure that they are not getting retinopathy of prematurity, otherwise know as ROP.  While Benton is already over two months old he just hit the 32 week threshold so now the eye exams start.  On Tuesdays the optometrist comes in and checks the baby's eyes....but in order to check their eyes they have to pry each baby's eyes open with something that looks like a paperclip and shine a bright light in their eye while moving their eyeball around with something that looks like a spoon.  God even just writing that makes it sound like some sort of medieval torture.

Looking at mom while holding my finger

 In order to get Benton ready for this uncomfortable event the nurses had to dilate his eyes with drops which can cause them to desat, lower their heart rate and even start vomiting.  Once Benton's eye drops were in he needed to stay under his blanket so his eyes wouldn't be hurt with any bright lights.  While Benton did not enjoy having his eyes dilated he only desated a bit and was able to recover quite quickly afterwards.  In addition, he didn't experience any of the nausea that normally comes with the eye exam.  Once his eyes were dilated the doctor came in and wrenched his eyes open for a good peek.  I had been told that watching this procedure could scar you for life, so I stayed away only to come back in once everything was done.  I was told that Benton survived the eye exam just fine and had the regular reaction of desating and lowering his heart rate but nothing out of the ordinary.  During the exam he had to go back up to 100% oxygen but by the time I came back in he was already back to 89% oxygen, which for him was a miracle.  I was sure that when I came back in he would be at 100% oxygen and still having a rough go of it, but my little fighter surprises me every time and he took the eye exam like a little champ!

First ever swaddle!

With the exam itself over and Benton recovering nicely, now my attention turned to the results of said exam.  I had worked myself into such a frenzy worrying that Benton wouldn't tolerate the exam that I had barely had time to worry what the exam results might say.  Well the optometrist came over and told us that Benton has Stage 3 ROP in his left eye and that his right eye was so hazy that she couldn't tell what stage that eye was in.  This was not good news.

ROP is when the blood vessels in the eye grow too quickly as a result of a high oxygen environment and can cause the retina to detach and lead to blindness.  The stages of ROP go from stage zero to stage five with five being complete retinal detachment.  The diagnosis of Stage 3 ROP means that Benton's eye vessels have created vascularized tissue and the scar tissue is pulling on the retina and it is close to detaching.  Stage three also means that Benton is going to need eye surgery very soon.  In addition, Benton's right eye was difficult to view because it was so hazy.  According to the doctor it is unclear whether this haziness is because his retina has already detached in that eye or if he might have cataracts.  If the retina has already detached, Benton will be blind in that eye. 

As the doctor discussed Benton's condition she explained that a retinal specialist will come to examine Benton's eyes on Thursday and decide how to proceed with surgery.  Once we talk with the retinal specialist we will have a better idea of surgical outcomes and how likely it is that our little boy may be blind or have severe visual impairment.  According to the doctor due to Benton's stage of ROP it's very likely that Benton will have surgery before the end of the week.

 

 

Little cutie's eyes wide open.

Hearing all this news was such a whirlwind.  I am so scared for my little boy to have surgery yet I know its the best chance he has of keeping his vision.  At the same time there is a small part of me that is unafraid because compared to his other life threatening conditions this one could still have a positive outcome where he can live a normal albeit disabled existence.  The emotions coursing through my veins have my nerves all over the place.  I just keep praying that tomorrow's meeting with the retinal specialist goes well and that Benton's eyesight can be saved.

Please keep my little man in your thoughts and prayers.  Keep praying for him to get stronger with each passing day and for his eye exam and surgery to go well.

Benton's new bed all-decked out with firetruck sheets and a car themed swaddle.

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