One Month of Life: A Retrospective

Benton has had quite the amazing month since he was born on November 8th 2013.  This post will provide a look back over the last 30 days with pictures.  Enjoy!

First visit to Benton!

Benton a few minutes after he was born

Standing by our little man.  Our love will heal him.

Getting baptized by Father Joe.

A tour under the bilirubin lights.

Changing his bandages for his irritated skin.

First feeding by Daddy.

Decorating his isolette!

Celebrating two weeks!

Reading stories and singing snuggle puppy.

Wearing ear muffs with the jet puff ventilator.

Swollen from the jet puff ventilator

Hoping and praying in the hospital chapel.

First time Benton opened his eyes!

Watching our man.

Sitting vigil by his bedside.

Celebrating three weeks!

First cute outfit as a Christmas cutie.

Waiting for good news after his lung collapsed.

We love this beautiful boy.

Sleeping angel.

Enjoying tummy time!

Love at the bedside.

Celebrating four weeks!

First time holding him!

Kangaroo care with my little man!

Happy One Month Birthday!

Birthday Boy!

Today Benton had his one month birthday and what a milestone!  For a baby that the doctors said had a 5% chance of surviving the birth it's amazing to see him hit his one month birthday.  The past month has had its fair shares of ups and downs and it's safe to say our family definitely understands why the NICU experience is called a roller-coaster.  However, all of these ups and downs are totally worth it if it means our sweet baby is still with us and still fighting to be here and to someday come home.  In the past month, Joe and I have become parents and spent endless hours in the NICU, but that's what parents do, they care for their kids and never stop believing in them.  I guess we just got a crash course early on, but I wouldn't have it any other way.  We believe in our son, Benton, and we keep hoping and praying that he will get stronger each day.

The past two days have been pretty innocuous by NICU standards.  He has continued peeing although at a diminished rate so the doctors have been slightly worried and they are giving him lasix (a dieruetic) again.  He has taken to his feedings like a champ and is now getting 1ml of milk every 4 hours.  My mom was even able to hold the feeding tube during his 4pm feeding.  His respirator settings have stayed pretty consistent although they did need to increase his pressure to 30 since he still has quite a bit of edema.  We just keep praying that the feedings continue to go well and that he starts peeing more so this edema can finally be behind us.

Beautiful sleeping boy

As a one month birthday present we brought cookies for the NICU doctors and nurses for getting him through so much over the course of 30 days.  After visiting with him for awhile I was able to hold him for kangaroo care again and Joe read more stories.  Nothing is more relaxing than holding your baby and feeling his heart beating and little body breathing against your chest.  I almost fell asleep holding Benton, but that would not be a good call with all his tubing and wires.  It is cool to see a window into the future where I will be holding him in a rocking chair at home falling asleep with him on my chest after bedtime story hour.  Gosh I wish those days were here now, but I can be strong and keep waiting.

Having the nurses hook up Benton for kangaroo care.

Sleeping cutie.

Smiling at my son.

And the Boy Pees! Days 27& 28

Happy Four Week Birthday Benton!!

Over the past two days our family has been on pins and needles waiting and hoping for Benton to start peeing again.  I never thought my mind would be consumed with thoughts of my little boy peeing and that all my prayers would be focused on such a tiny organ as the kidney, but that's what happens when your baby is as premature as ours.  Every organ is essential and each thing the doctors do can affect the other parts of his body so as the doctors keep telling us "It's a balancing act".

Benton gripping my hand and showing us he is a fighter!

Well as of Thursday evening Benton had still not peed and the doctors were getting more concerned because his potassium levels were rising and getting close to unsafe levels.  Heightened potassium levels can cause heart issues and ultimately could lead to heart failure so the doctors want to be proactive before those levels get too high.  So, the doctors gave Benton a nebulizer which will cause the potassium in his blood to retreat into the tissues.  This is only a temporary measure, but they were hoping that it would buy them some time before Benton started peeing on his own again and then his potassium levels would drop naturally.  We were definitely scared to know that if Benton didn't start peeing very soon the doctors may not be able to do much more.  That evening there was a lot of prayer for our little man to open up his flood gates and start peeing.

Luckily our prayers were answered!  By 4am that evening we called the NICU and found out that Benton had peed about 3ml.  It wasn't much, but we hoped that this was just the start of things to come.  We were right, our little man started peeing at each "cares" yesterday and by the time we visited that evening he had peed over 32ml which was amazing.  The doctors actually said he was doing so well that they were willing to start feeding him milk.  Now our little guy gets 1ml of his mommy's milk every 8 hours.  It's not a lot of milk but the fact that he is getting fed for the first time in 3 weeks is an unbelievable accomplishment. 

To top off that amazing day we visited Benton that evening and were able to do kangaroo care for a second time.  I held our little man for over an hour as Joe read him 5 bedtime stories.  Benton did amazing and kept his sats up again and even was able to keep his temperature up with the help of his mommy's warmth and a couple of warm blankets.  Hopefully this is the start of many wonderful days holding our boy and getting to read him bedtime stories like a normal family.

Up close and personal with our cutie.

Please keep Benton in your prayers and hope that every day he gets stronger and healthier.  As he begins his new journey feeding for the first time we prayer for his intestines to tolerate the new addition of milk to his body.  We are afraid that he could get NEC again and are praying for an easy start to his second time feeding. 

Another Dip In the Road, Day 25 & 26

Our cutie lying on his tummy in his snuggle-up.

After such a wonderful high point holding my baby for the first time we had yet another dip in the road.  While I knew it was inevitable that there would be further dips before we brought our baby home, I had thought we might have a longer period of calm before the next storm.  But that's the NICU experience...you can't guess what each day will bring you.

Yesterday we woke up full of excitement thinking that Benton was having yet another good day; however, when I called the NICU for our morning update we found out that Benton's edema was getting worse and he still hadn't peed very much and the small amount of pee that he did have had been blood tinged.  The doctors had already been planning to do a head ultrasound to check on his brain and a intestinal ultrasound to check on his intestines and see if his infection had spread.  With the new development of the blood tinged urine the doctors decided to add in another ultrasound for his kidneys.  So yesterday was filled with tests for Benton and us pensively waiting for the results. 

After waiting for the results we sat down for a long chat with the doctor.  Doctor Scalia let us know that the ultrasound of the kidneys had shown calcification in the kidneys (i.e. kidney stones) and this explained the blood-tinged urine.  While it was good to know there was a reason for the blood and that the kidney stones would get gradually reabsorped over time, it is still disconcerting to hear that your premature baby has what I would consider an "old man disease".  Furthermore, the kidney stones don't explain the lack of pee which has been plaguing Benton the past few days.  The doctors wanted to test a sample of Benton's urine, but without much in his diapers that was a tough proposition.  During his evening "cares" I was changing his diaper and noticed that while the diaper itself was dry there was a small amount of pee on his penis.  So there I was with the nurse siphoning pee off my son's penis so the doctors could test it.  It was quite the sight and definitely not something that I ever thought I would do!

The other test results came back with pretty good news.  His intestinal ultrasound showed no perforations in his bowel and no dead areas of his intestines which are common side effects of NEC.  The ultrasound did show that there was a thickening of his intestinal walls which is indicative that Benton did indeed have NEC but was able to stop it from destroying his intestines with the help of the antibiotics.  The doctor's said this was really good news because he wouldn't need surgery and they might start giving him milk as early as Friday.  The head ultrasound results also came back with good news.  The ultrasound showed that the Level 1 bleed had been reabsorbed and the hematoma (formerly thought to be a PVL) had shrunk in size.  These test results were reassuring to hear yet at the same time it's always hard to hear the doctors formally conclude that your son did have a potentially fatal infection.  At least it's heartwarming to know that Benton seems to have fought the good fight against this infection.

Our little man fighting off his edema!

Today started like any other day.  We called to find out how Benton had fared over night and we were told that he still hadn't peed and now it had been over 12 hours since he had urinated and due to the lack of pee his edema was getting worse.  With his worsened edema his lung function has decreased and the pressure on his ventilator slowly creeped up from 24 to 26 to 28 to 30 over the course of the day.  The doctors made some changes to his treatment plan and gave him a double dose of lasix (a hard core dieuretic) and more albumin to help his capillaries suck in some of his edema.  We knew it was a problem that he wasn't peeing, yet it seemed to pale in comparison to everything we had been through thus far.  However, as the day wore on it became more and more apparent that his kidneys were not functioning and this would be yet another hurdle in our journey.

Around 6pm we got the dreaded phone call from the NICU.  The attending doctor was calling to let us know that Benton had coughed up his ET tube (which is connected to his ventilator) and his heart rate had plummeted as he had stopped breathing.  The doctors had to perform CPR and resuscitate our little man and it seems like his heart had stopped before they were able to bring him back.  Hearing this news was like someone had punched me in the stomach and knocked all the wind out of me.  It was terrifying to know that while I wasn't there my son could have died.  That feeling was one of pure terror and I felt numb as if I was just making the motions of listening to the doctor instead of actually reacting. 

After hearing this news the doctor went on to explain how she viewed Benton's situation.  She said that while the extubation event (coughing up his ET tube) had been very exciting, Benton had recovered well and was giving the doctor a look that said "Why are you looking at me?  I'm fine!".  After he had been reintubated the doctors took x-rays to ensure that the tube was in the right place and they saw that one of his lungs had suffered a small collapse.  So they increased his pressure on his ventilator to help him as he recovered. 

They also discussed their new plan for his kidneys.  Since he had not peed for over 12 hours they officially diagnosed his condition as renal failure.  This of course made us tremendously upset as it seems like our little man just can't catch a break.  The doctors explained that they believe that the antibiotics he was on for NEC actually ended up hurting his kidney function; however, those same antibiotics saved him from a deadly outcome from NEC.  Since the antibiotics had been in his system for over 10 days they were able to stop the antibiotics without it hurting his chances of beating NEC.  By stopping the antibiotics the doctors hope that his kidneys will fix themselves and he will start peeing again.  Once he is peeing again it should reduce his edema and help him breathe easier.  They told us that we should hopefully see improvement in his kidneys in a few days so please send your prayers and love to help heal Benton's kidneys.

After hearing all this news we were overwhelmed, but knew we wanted to spend time that evening with our little miracle man.  Joe and I both held him within his isolette since he is now too sick for kangaroo care and we read him stories and sang him christmas carols.  Benton is such a little fighter and we know that with God's miracles and love Benton will beat this new challenge and heal his kidneys.

Please send your thoughts, love and healing prayers to Benton to help heal his kidneys and get rid of his edema.

Our beautiful boy being held by his daddy!

The bond between father and son.

Day 24: The Day I Held My Baby for the First Time

Today started like any other day, but it will now be forever known as the first day I held my beautiful baby boy.  Waiting 24 days to hold your baby for the first time feels like torture for a new mom, but I knew that Benton was in the best possible care and that he wasn't strong enough to be held...that is until today! 

Benton peeking out of Mommy's shirt.

This morning I called the NICU to see how Benton was doing and Meghan, our nurse, said he was having a good day and I should wear a low cut shirt to the hospital.  I was hoping this meant I might get to hold him but I didn't want to get my hopes up.  But, when I arrived at the hospital Meghan immediately told me I was going to get to do kangaroo care with Benton for the first time!  Kangaroo care is where you hold your baby on your chest to keep them warm and it is all about skin to skin contact with your baby; hence, the instruction to wear a low cut shirt.  After they told me I was truly going to be holding my baby in just a few minutes I could barely contain my excitement, yet I kept having waves of nerves.  Would he be okay out of the isolette?  Would his stats stay high or would he start de-sating?  I was a bundle of nervous energy and excitement.

Within minutes the nurses had directed me to sit down in a chair that lies back and they had propped me up with pillows and opened my shirt so that Benton could be placed directly on my chest.  Then they opened his isolette and starting maneuvering all his wires so he could be placed on my chest.  Once the wires were disentangled from the isolette the nurses picked up my boy and flew him through the air towards me.  It is both exciting and nerve-wracking to see your little one flying towards you because you hope the nurses know what they are doing.

Nurses hooking up the wires during kangaroo care.

Once they placed Benton on my chest and tucked his feet into my bra, they placed about 5 blankets on him to keep him warm and they rearranged his breathing tubes and IV lines.  Then the nurses left us in peace and I had one whole hour of uninterrupted time with my little man.  The feeling of this small being lying on my chest and breathing calmly was the best feeling in the entire world.  Benton was wide awake as he first snuggled into my chest but then he fell asleep and looked so relaxed and at peace.  The bond I felt with my son was incredible and it truly felt like waves of motherhood were washing over me as I sat there with my beautiful tiny boy.  I have never felt anything like it in the world.  It was ultimate bliss and I truly couldn't have been happier.  I alternated between tears of joy and not being able to stop smiling.  The hour seemed to fly by and I wish I could have held him forever.

View of kangaroo care next to isolette.

Up close and personal with my little man.

Benton did very well during the kangaroo care, not only did he seem to enjoy his time with his mommy, but his stats were amazing throughout the whole hour.  His oxygen levels went from 48% before kangaroo care to 35% while I was holding him and he stayed at those levels even when he went back to the isolette.  The fact that his stats were great during our bonding moment was such a great feeling for me since it means we can do kangaroo care again, as long as he remains stable.  Yay! 

Please keep our wonderful little fighter in your prayers and hope he remains stable and continues to grow healthy and strong. 

Enjoying this once in a lifetime moment!

Enjoying Our Little Man, Days 21, 22 and 23

This past weekend we were honored to celebrate the three week anniversary of our little man coming into this world.  Happy Three Week Birthday Benton!  To kick off this very special day and the advent of the Christmas season, our nurse Kelsey surprised us by giving Benton his very first "outfit" (i.e. adorable hat and diaper cover).  Benton was dressed as an adorable Christmas elf and this just made my day.  Check out the adorable pictures below!

Benton enjoying tummy time while dressed as an elf

Three week birthday boy!

All dressed up and no where to go...

With the long holiday weekend we spent a lot of time at the hospital enjoying time with our son and getting to know him a little better now that he has somewhat stabilized.  We've settled into a routine of getting up throughout the night to pump milk for the little guy, sleep in, get up and go to the hospital and be there for "cares" so I can change his diaper, then head home for a relaxing evening eating turkey leftovers.  Getting to be there each day and spend quality time reading to him, changing his diaper and taking his temperature makes me almost feel like a normal mom....not quite...but almost, and I am relishing every second I get to spend with him.

These past few days have been relatively uneventful for Benton and the news from the NICU has been that he is maintaining.  Each day we watch his oxygen levels and they have been shifting between mid 30s to low 50s depending on if he has to have medication or is being bothered during his "cares".  Other than that his blood gases have been good and they have only been taking them every 24 hours.  This is a big improvement over the scary day last weekend when they were taking his blood gases every 30 minutes.

His edema (swelling) is still very apparent in his trunk (stomach and chest) and they have classified it as pitting edema.  This means that when he lies on his sheets or has anything touching his skin, his skin actually takes on the imprint of that object.  For example, when I took his temperature on Friday you could see the outline of the thermometer on his torso.  The doctors have continued to give him lasix and albumin which should help him shed some of this liquid.  With Benton being on the new ventilator, he has been able to sleep on his tummy, sides and back.  This new movement will not only help his edema but has also shed some light on what may be causing the "dusky" color in his abdomen.  As the nurses  have moved Benton into new positions, they have noticed that the "dusky" color moves to different areas of his body and pools.  This has occurred on his back, in his flanks and even in his upper arms.  While the doctors have not formally ruled out NEC, it does seem that this discoloration could have more to do with his edema than an infection of his intestines.  We will just keep hoping and praying that Benton doesn't have NEC and that once this edema is gone the "dusky" color will be gone as well.

It's wonderful to have such little news to report regarding Benton's condition.  Each day that he maintains a stable condition is another day that he grows stronger. There is a country song with a lyric that has really hit home with our family over the past 3 weeks and the line is "Even on my weakest day, I get a little bit stronger".  Well I think those words perfectly fit our little fighter.  Just one week ago, the doctors were saying his lungs were giving up and that it might be his time.  But with the grace of god, today he is still here with us and looking stronger than ever.  Each day is a miracle and these stabler days have warmed my heart.  I know there are more dips and low points ahead because the NICU experience is a roller coaster ride, but I will enjoy these high points with my little man and continue to pray for his healthy recovery.  Please continue to send healing thoughts and prayers to our little fighter.

Keep growing Benton we couldn't be prouder!

Another day, another cute hat!

Christmas cutie!