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.