Giving Thanks For Things Big and Small, Day 20

On this Thanksgiving day, I look around at all those who have supported us and want to give thanks for all of the blessings, both big and small, that have been bestowed on my family.  There are so many things to be thankful for on this Thanksgiving.  Our son, Benton, is alive and is still amazing us each day with his strength and vigor for life.  Our family has come from far and wide to support us during this trying time and despite them having to rush here under tragic circumstances we have forged a stronger bond and our relationship has deepened.  My husband and I have a newfound admiration for each other's strength and fortitude and our love has grown as we watch our son grow little by little each day.

To start off this Thanksgiving weekend we received our first phone call from the NICU.  We had been told that no news was good news so to see those numbers flash on the phone triggered pure terror.  I answered the phone and was greeted by Qi (pronounced "chi" like in Chichi's), our friendly doctor.  She immediately told us she didn't have bad news so we could stop panicking.  They had received the results from yesterday's head ultrasound and they wanted to share the results before the holiday weekend.  Qi shared with us that the brain damage (PVL) they had detected on an earlier ultrasound had showed changes on this most recent scan and had decreased in size.  The doctors no longer believed it was a PVL but rather a hematoma.  This was great news because a PVL can cause long-lasting brain issues but this hematoma was likely only a stage 1 brain bleed which will resolve itself on its own.  We couldn't have been happier to hear such heartwarming news right before Thanksgiving.

On Thanksgiving morning, I baked brownies for the NICU doctors and nurses to show our appreciation for all of their hard work and to thank them for taking such good care of Benton these past 2 1/2 weeks.  As we arrived in the NICU, we saw one of our favorite nurses Kelsey taking care of Benton.  She had Benton all cleaned up and looking super cute with a little beret on his head.  This was the first non-hospital looking item of clothes Benton has gotten to wear!

Benton looking very snazzy with his beret!

Kelsey updated us on Benton's condition and that he had been having a relatively easy night and day.  The surgeon had come by to look at his tummy and they were happy with how it looked.  They also mentioned that they believed the "dusky" color had somewhat diminished, which was great news.  In addition, his oxygen level was at 37% and his pressure was at 23 which was the lowest we had seen in quite some time and his blood gases were coming back great.  All such wonderful news!  She told us that the doctors were happy enough with his gases that they were only going to take them every 12 hours from now on and that they would remove his umbilical arterial catheter which they use for blood transfusions and to take the blood gases.  From now on Benton will have his heel pricked each time they want to take a blood gas.  All of this news was improvements and we couldn't have been happier.

Kelsey also mentioned that Benton had a huge poop.  One that was so big that it actually caused him to fuss and de-sat because he was that uncomfortable.  As she put it "it was a 5 wipe poop".  While I never thought I would ramble endlessly about my son's bowel movements, this was wonderful news.  With each poop it seems more and more likely that Benton does not have NEC and his bowels are functioning properly.  It's funny being a NICU mom because so many conversations revolve around how your son's peeing and pooping is going.  Is it enough?  Is it too much?  Each pee and poop gives the nurses and doctors information into my son's health and therefore it's inevitable that one of my first questions to Benton's nurses is "how was his diaper today?".

Despite being a hospital, the NICU definitely tries to infuse some cheerfulness into the holidays.  Our labor and delivery nurse, Lindsey, who helped me through my delivery and the episode with my prolapsed cord, made Benton the cutest turkey to adorn his isolet.  In addition, the NICU nurses made cards to the parents that were from our babies.  Each card had their latest foot print and a note that said "I'm thankful to be yours.  Love, Your Little Turkey".  These thoughtful gestures mean so much especially in the harshness of the NICU with the constant beeping and alarms.

Our visit with Benton was terrific and to have such overwhelmingly positive news on Thanksgiving was one of the greatest gifts of all.  Today truly was a wonderful Thanksgiving and we couldn't feel more thankful for all of the blessings that God has given us this year.

Stabilizing and Breathing -- Days 18 and 19

Benton relaxing after he got his PICC line inserted.

After the tremendous stress we experienced over the weekend it feels like the last few days have been relatively uneventful, which is a relief.  On Sunday the doctors gave Benton nitrous oxide to help his breathing and despite the warning that it often doesn't work on preemies, Benton took to the nitrous and his oxygen saturation began to climb back to good levels.  Since Monday they have been weening Benton off the nitrous each time he gets good blood gases.  Over the past 3 days they were been able to ween him from 20ppm to 3ppm by this morning.  When we went this afternoon, Benton had a blood gas that the nurses actually called "beautiful"!  This was exciting news since it meant that he could be officially weened off the nitrous which is so important because we don't want him to become dependent on it.

We are so happy to have him off the nitrous because it truly feels like he is making steps forward rather than backward.  However, we are always quick to remember that the NICU doesn't make promises and  this journey will be full of moments with two steps forward and two steps back.  The doctors also sat down with us to discuss the condition of his lungs and indicated that while his blood gases are doing great he still needs a significant amount of oxygen support, around 50%.  His lungs still have the residual inflammation from the PIE, however, they are definitely are doing much better than before and the scans look free of air bubbles/pockets.


As we talked with the doctor, the conversation turned toward the color of his belly and his intestines.  His belly is still concerning us especially because it feels like we still don't truly know what's going on in there.  The doctors have not been able to confirm or deny whether his infection truly is NEC.  From what I understand, in a typical NEC situation, his condition would have deteriorated by now which hasn't happened.  Benton has had several poops (one last night and a couple before on Sunday) which seems to indicate things are functioning relatively normally.  But pooping is not positive proof that the infection doesn't exist.   It could be that the infection is higher in the intestine and that there was something left at the bottom of the intestine that he was still passing.  The doctors like to be prepared for worst case scenarios, therefore, they brought in a surgeon to get briefed on his case.  The surgeon inspected the "dusky"-ness of his belly and called it "symmetrical."  In our case, symmetrical is a positive sign.  Typically, NEC would be isolated to or more concentrated on one side of the belly, however, Benton's belly color and feel was consistent.  Again these signs are not conclusive in saying he doesn't have NEC but it is encouraging.

While investigating Benton's circulatory system, the doctors gave him an echo (echo cardiogram not to be confused with an EKG or electrocardiogram) to see how much pressure he needed to get blood pumping to his lungs properly.  The echo wasn't able to get the pressure but they were able to see that his PDA was shut.  Keep in mind, that the PDA can be functionally closed temporarily but still open up again.  It takes awhile for it to become anatomically closed.  Just seeing it closed in the echo doesn't prove it's permanently closed but it still is encouraging and we are definitely happy to see small hints of progress.


In addition, Benton is starting to show signs of graduating from micro-preemie status to regular preemie.  Not so much in size but in traits.  He has started to develop a bit of apnea which is very common in regular preemies because they are so young that their brain forgets to breath once in a while.  It gives us a bit of a startle when it happens because the ventilator starts beeping (it can tell he's holding his breath) but then he starts back up a few seconds later.  Yesterday, Benton also graduated to his big boy line i.e. PICC line.  This is put in place of his umbilical venus line which feeds his prescriptions and his IV fluid.  On one of our first days in the hospital, one of the nurses said that there only two guarantees in the NICU, you will get a PICC line and you will be under the biliruben lights.  Every time the doctors need to add new tubes and lines to my little boy it scares me, but I have to remember that the doctors know best and that despite his small size he is strong and can tolerate these changes.

Yesterday was a day of firsts.  Not only did he get his PICC line and start experiencing apnea for the first time, but he had his first bath and got a visit from the physical therapist.  For term babies, a bath is a relatively innocuous thing and moms may bathe their babies once a day.  That is not the same in the NICU.  Benton's skin is so fragile and thin that it can absorb water and he can't maintain his body temperature; therefore, despite him being almost 3 weeks old he still had some of his delivery fluid on his body.  It's weird how each thing that many moms may take for granted like bathing their baby, changing a poopy diaper and hearing their baby cry are experiences I yearn for and will never take for granted.

Today the physical therapist came by to consult on Benton's arms.  With the amount of skin breakdown he has experienced his arms have started to form scar tissue in his elbow area.  This is making him not want to fully extend his arms due to tenderness and scarring.  Upon seeing Benton's condition she fastened a small splint using an IV board and a hat to help extend his arms.  They will switch the splint from one arm to the other to give it a chance to breathe and heal.

Benton lying on his right side with his arm in the splint to help his scar tissue.

With tomorrow being Thanksgiving, it feels appropriate to give my heartfelt thanks to God, my family, my friends and everyone who has been sending our family love, thoughts and prayers during this difficult time.  Everyone's support has been so appreciated and we really couldn't make it through this time without the love and support of people like you.  Please continue sending your thoughts and prayers to Benton for a full and safe recovery.

The Terrifying Weekend -- Days 14, 15,16 and morning day 17

This weekend has been going by in what felt like slow motion, but somehow we're already at Monday and we haven't posted the latest news.  I know we said it before, but I am saying it again, yesterday was the scariest day of our lives.

After the bad news on Thursday, Benton's nurse was able to ween him down on his oxygen supplement and pressure overnight to around 26 pressure and 21% oxygen (ambient oxygen).  But when we went back to the hospital on Friday, his oxygen levels were back up to 50% oxygen and they continued to need to increase the pressure and the oxygen.  His edema (swelling) had started to retreat from his arms but the rest of his body was still swollen.  By Saturday his edema was even better and he was starting to look much less puffy; however, the doctors were still concerned that his tummy looked "dusty" and this could be indicative of NEC or another dangerous infection.

With Benton seeming to be pretty stable on Saturday evening we decided to leave around 6pm and enjoy a quiet evening at home watching movies and catching up on rest.  When I called on Saturday evening to check on Benton's condition I was told that his last blood gas (taken right after we left)  had his CO2 levels in his blood at over 100.  This was an emergency situation and they had to take him off the JET ventilator because it wasn't allowing the CO2 to get out of his system.  Once he was back on the conventional ventilator, his CO2 levels dropped but he was requiring between 80% and 100% oxygen.  Hearing such news right before you are trying to go to bed is agonizing.  I constantly waiver between wanting to go back to the hospital after such news and needing to get rest and be more present the following day.  This roller coaster ride never seems to let up and we are definitely starting to show the wear and tear on our minds and bodies.

By the time we came in on Sunday morning, we heard the good news that Benton had taken a big poop that morning.   This was encouraging because it proved that at least part of his intestines were working as this was a site of possible infection.  But as we were talking to the doctors about his condition, his oxygen saturation plummeted.  They pumped up his oxygen support to 100% but they couldn't get his oxygen saturation levels past 70.  Watching your little boy struggle to breathe while the doctors are frantically trying to help him is one of the hardest things you can ever imagine.  It seems like the whole world stops despite the frantic running of multiple doctors and nurses to your son's bedside.  At a certain point the doctors told us it would be best to leave the room while they tried to stabilize him.  This was at the same point that the doctors were saying they needed to "bag him" which is when they put an oxygen tent around him.  Waiting in the waiting room for news on Benton seemed interminable with each second feeling like an hour.  At a certain point  we decided to go down to the chapel and pray for Benton's life and for healing miracles.  When we came back up to talk to the doctors they said they were going to try to do as much as they could, but this might be his way of telling us that this is all his little lungs can do.

Hearing this news was heartbreakingly devastating for me and Joe.  I broke down and started weeping in the hospital hallway surrounded by my parents and sister.  At this point the chaplain came up to us and saw the situation and offered to have Father Joe, who had baptized Benton, come up to the NICU and offer a blessing.  Again we were able to have the whole family in the NICU while Father Joe blessed Benton with holy water and said calming words about how Jesus is a healer and the Holy Spirit is associated with the "breath of life" and this means the holy trinity can assist with Benton's recovery.  Father Joe also mentioned that he would dedicate his afternoon mass to Benton's recovery and some of our family was able to attend the lovely service.

We did a lot of prayer in the Hospital's Chapel and stood by Benton's side all afternoon. At around 4:30pm, the nurse needed to change some of Benton's lines and she needed us to leave because it's a sterile procedure.  It should have only taken 20 minutes but we weren't able to get back in until 6pm.  When we got back, the attending doctor explained they were trying a few additional treatments.  They had found out that when his blood pressure was heightened he did better with his oxygen saturation.  The attending theorized that his lungs were working well at converting the oxygen and CO2, but that his circulatory system was inhibiting the oxygenation of his blood because the infection had constricted the arteries to his lungs.  When his blood pressure went up, the blood was able to be forced back into the lungs even with the tiny veins.  Therefore, they decided they should give him medications to increase his blood pressure but didn't want to increase it too much because it would be detrimental on his heart.  The game plan was for the doctors to try and find a middle ground where they could raise his blood pressure up to a safe level to help his oxygen sats rise.

During his afternoon "cares" the  nurse took his temperature and found out that he had a fever.  This was even more indicative that he has a dangerous infection which is hurting his lungs ability to perform.  To help with any possible infection the doctors gave him a couple of new antibiotics that the nurse called "the big guns".  She said they would help fight what ever was going on in there, but that it was also up to Benton to kill it off.  After so much time spent in prayer and basically doing vigil at his bedside, it is disconcerting to know that in the end it truly is up to Benton to decide if he wants to continue fighting.  We know that he is such a feisty fighter and we just keep praying that he continues to surprise us with his will to live. 

By late evening, Benton's skin no longer looked like it had open sores which would have increased his risk for an additional infection looked more healed.  In addition he had two more poops, for a total of three poops in one day! These little milestones give us some comfort in a sea of uncertainty.

Throughout the evening his oxygen saturation sat in the low 80's and we prayed that they would continue to rise to a safe level. However, by 11pm they decided to administer nitrous oxide.  In grown adults and full term babies, the nitrous oxide will relax the veins to the lungs and help circulation.  They theorized that it wouldn't do much for Benton, but to our surprise it helped bring his oxygen sats back into the 90s.

With Benton's condition all over the map and our nerves unbelievably frayed we stayed overnight in the hospital in a room called the nesting place for families who can't or don't want to be far from their baby's side. It was nice to be this close, as we were able to check in on him throughout the night.  At around 6am, he was back down to 24 pressure and his oxygen was lowered to somewhere in the 50s%. He is still on the nitrous oxide.   The nurse reminded us that even though he has improved since his lowest of lows, he is still considered extremely critical and is on a lot of support between the nitrous, high pressure on the conventional ventilator, antibiotics, dopamine, morphine and high oxygen.  Right now a lot of his systems are depending on him to fight this infection as soon as possible.

These past few days have been the hardest of our lives.  While I had heard that the NICU experience is a roller coaster...roller coasters have ups and downs.  Right now it seems like all we are having is the low points and I am very hopeful for a future upswing.  Watching your baby fight for his life is unlike anything ever experienced, especially for a first time mom.  It is so hard to not be able to fix your baby's problems and all you can do is trust that the doctors know what they are doing, have faith in your son's ability to keep fighting, and keep praying for a miracle.  This feeling of helplessness seems to never end and I just keep hoping that Benton knows how much his parents love him and how much we want him to keep fighting so that one day we can take him home and be a happy family of three.

We are definitely praying for all of Benton's systems to recover and for him to continue fighting for a full recovery and a future as a strong and healthy baby boy.  However, today we are focusing our prayers on the health of his lungs and his ability to fight this infection that is brewing in his intestines.  We are hoping that if he can beat this infection that a lot of his other systems will start to stabilize.  Please keep your love, thoughts, prayers and positive energy coming his way. 

The Family Meeting (aka the scariest day), Day 13

Today was likely the one of hardest days of our lives, yet like so many things in the NICU it started off perfectly innocuous.  As you may have read in our post from yesterday, we felt that Benton's lungs were starting the slow road toward improvement.  When we arrived in the NICU this morning Benton's ventilator was at 67% and he was high-sating which was great news in comparison to the 100% oxygen supplement from the previous days.  In addition, this was an indication that he was stabilizing as the numbers hadn't changed much from the night before.  While we sat with him he gradually was able to come down on his oxygen to 44%.  We were ecstatic and couldn't have been happier to be seeing some improvement in his vitals.

The NICU social worker had previously set up a family meeting with the doctors to discuss Benton's overall condition and that meeting was set for today.  We had seen our doctor the last two days we visited and he had been giving us updates on what was going on with his lungs.  So we expected this update to be more of the same.  We expected him to just say that his lung had deflated but that he was making slow progress back to normal.  But our doctor was running late, and the nurses kept saying, we're "all" here but he isn't.  We had thought it was only us and the doctor so we didn't know who the "All" was.  When he showed up, the nurse immediately asked him to look at Benton's stomach, which the nurse described as having a "dusky" color.  This was the first we had heard of this which made us nervous but the nurse said that it had been there for the past few days.  So after the doctor looked at Benton's belly for awhile, he lead us to a small room off the NICU floor and we were followed in by two nurses, a chaplain, the social worker and a senior fellow.  Without wasting much time, Dr. Abubakar dove into a list of extremely gloomy conditions that, most of which,  we were not at all prepared for.  We were really expecting and prepared to talk about his lungs and his level 1 brain bleed.  But instead we got a laundry list of potentially fatal conditions thrown at us:
-- His existing brain bleed didn't change but a new one was detected.  One caveat is that they haven't decided if the new bleed is actually a bleed or if it could be brain tissue that was not getting enough oxygen.  Either way, it didn't seem like a good thing.  They said they would tell us more about that on the next scan on Monday.
-- The "dusky" color in his belly could indicate that his intestines have a disease called NEC which can be extremely fatal (I'm not going to bother putting up a link to this because it's pretty nasty).
 -- His lungs have not been improving as much as they had hoped especially due to his collapsed lung.
-- He has developed edema (i.e. severe swelling and water retention) over most of his body due to all the medications and transfusions he has been given.
-- The edema and his movement is causing skin areas around his elbows and armpits to breakdown and bleed. While we had known his skin was having breakdown they said that in its current state there is a high risk of infection where there is an open wound and this could potentially be fatal.

Any one of these things would have been a lot for a baby to handle and due to the numerous conditions facing Benton, the doctor was telling us that he was extremely concerned at how the next few days would play out for Benton.  He stated again that Benton's condition was extremely critical.  This hit us like a ton of bricks, and when the social worker asked how we felt I described it as feeling like we got sucker punched.  

After what seemed like an eternity the doctors and nurses left Joe and I in the room.  This was the moment where my strength broke and my eyes erupted in tears.  Sitting in that room with my family I broke down and just cried for what felt like forever.  We then pulled ourselves together and went out onto the NICU floor to see our lovely baby boy.  Every time I lay eyes on my beautiful son I feel the biggest swell of love and all I can think about is how much of a miracle he truly is and how God will heal and save our perfect little man.

Because we were still wavering between unbelievable sadness and a determination that we could not give up on our baby boy we headed downstairs to the chapel.  Praying in the chapel felt like we were doing something to help Benton and it helped to calm my negative thoughts.  The combination between prayer in the chapel and some fresh outdoor air did wonders on my nerves and we spent the remainder of the afternoon with our beautiful boy; telling him how proud we are of him, how he can fight these illnesses and how he will be healed with all the positive thoughts and prayers being sent to him.

Later in the evening we headed back to the NICU to continue our visit after a brief break.  As we entered the NICU we saw Jim, one of our favorite nurses and he was on Benton duty for the night.  It's interesting that after only 3 days you can start to feel attached to your son's caregivers especially when they have helped you through rough times like the collapse of Benton's lung.  As we visited Benton we read stories, sang small lullabies and prayed for his continued strength and ultimate recovery.  In addition, Jim told me that I should start "holding him" as this can calm him down.  Holding a preemie is not like holding a regular baby.  You cup their head with your left hand and gently place pressure on their feet.  The idea is that this will feel like they are in the womb with your left hand being a full bladder and your  right hand being the mother's ribs.    As we sat with Benton his breathing stats continued to get better and better.  His oxygen level gradually went down from 40% to 21% which the same percentage as ambient room air.  This was a huge milestone and the first time we had seen Benton hit such a great number.  In addition, his blood gases were improving and they were able to reduce the pressure on his ventilator down from 40 to 36.  These improvements in his breathing definitely gave us hope, but we continue to hold vigil regarding his overall health and the condition of his intestines, skin, brain, lungs, heart and the swelling of his body.

All of the loving prayers and healing energy that everyone has sent over the past week has truly helped to improve Benton's lungs.  Now we need everyone's continued love, thoughts and prayers to help heal Benton's intestines, his skin, his brain, and reduce his edema.  The overall health of our boy is truly all we want in the world and we hope and continue to pray for his full recovery and for his future as a healthy, happy baby boy.

Two Weeks in Pictures

Having a sister who is a professional photographer definitely has its perks.  Over the last two weeks, she has been documenting our hospital stay and our daily visits to Benton.  We thought this would be a good venue to post some pictures from Benton's first 2 weeks.  Enjoy!

Relaxing in the hospital after the birth.

Benton under the bilirubin lights on his one day-a-versary.

The lovely baptism ceremony with Father Joe in the NICU.

Benton in his christening gown on his 3rd day-a-versary..

Watching and participating in the Baptism.

Marika helping change Benton's bandages for his skin condition.

Taking Benton's temperature.

Changing Benton's first diaper.

Moving around on his one-week birthday!

Watching Benton in the glow of the NICU.

First family portrait!

Joe feeding Benton via feeding tube on his one week birthday

Singing the snuggle puppy love song to our beautiful baby boy before nighttime.

Reading the Berenstein Bears and showing Benton the exciting pictures!

Giving Benton a good night kiss.

Waiting for good news in the NICU waiting room after his lung collapsed.

Thank You For All of the Loves, Thoughts and Prayers

Over the last two weeks we have been on the receiving end of an outpouring of support from family, friends, co-workers, long lost friends and even complete strangers.  We feel forever blessed that so many people have reached out to support us during this trying time and we truly feel that all the prayers people are sending to Benton and our family are helping him get stronger every day.  Please keep the healing prayers, positive thoughts and love coming!

Flowers decorated my hospital room.  The doctors and nurses said it was the best smelling room in the place!

The slow climb back up -- Day 12

As we mentioned previously, Benton had a rough night yesterday with his left lung deflating; therefore, we cleared our schedule this afternoon so we could spend a lot of time with him to help encourage his recovery. Early this morning we called the NICU and the nurse had told us that Benton's left lung had re-inflated and he was down to 70% supplemental oxygen.  However, when we arrived for our noon visit we saw that he still needed a substantial amount of oxygen support, around 86%, and his lung had not fully inflated.  That was definitely worrisome but on a positive note, his blood's oxygen saturation was at a healthy 91.  So even though he required a significant amount of oxygen, it was nice to see that he had gotten back to a stable oxygen saturation level.  Over night they also had increased the pressure on Benton's ventilator to around 40 (we still don't fully understand the unit of measurement for this metric).  The way they explained this change in pressure was that his lungs are still extremely immature and inflamed and therefore his lungs want to contract/deflate.  The doctors needed to add additional pressure to his ventilator in order to keep his lungs inflated as well as keep the individual alveoli expanded for proper gas exchange.  It's not an ideal situation because additional pressure stresses his lungs but it is necessary to keep them inflated.  Once the inflammation in his lungs has decreased and his blood gases are at healthier levels the doctors will decrease the pressure on his jet puff ventilator.  Please send prayers to help Benton's lungs heal from the PIE and have the steroids reduce his lung inflammation.

We spent the afternoon with him, singing, reading, whispering and watching him.  By the time we left around 6:30pm, he had dropped to about 68% oxygen support and his blood oxygen saturation was at around 93+.  We were really happy to watch him slowly march his way to better saturation levels and lower oxygen support.  Keep in mind that the word "better" is really relative to how he was doing last night.  Last Friday, Benton was closer to 35% supplemental oxygen required and if at that time we heard he jumped to 70%, we would have been terrified.  Now that he has come down from 100% last night to 70% today, we are super relieved.  It is strange how the same numbers can elicit completely different reactions based on the context.  And everything with preemies is all about context.

Toward the end of our visit we had one of the most amazing moments.  Benton opened both of his eyes while the nurse was doing his "cares"!  It was amazing to see him open his right eye and then slowly pry his left eye open in order to see who was messing with him and changing his diaper.  In the NICU, these small moments feel enormous because so much of the news you receive in the NICU is negative and having such a positive note to end our visit on was wonderful.

Benton's eyes are both open!!!

All in all, it was a good day.  Benton is taking preemie-sized steps towards a healthy and lasting recovery and we continue to hope and pray for him and his health.  Keep it up Benton, you are wonderful and are making us very proud parents!

Ups and Downs of the Roller Coaster -- Night Day 11/Early Morning Day 12

When we visited Benton last night, his vitals seemed more stable than where he was during lunch.  His blood had an oxygen saturation of above 90 and his supplemental oxygen was down to 70% from 79%.  We were setting up to read him some stories for the first time in a couple of nights (we've been avoiding reading to him so as to not stress him out).  Half way through the story his oxygen saturation plummeted to around 70.  The nurse increased his oxygen supplement to 100% but his saturation climbed closer to 80% but didn't get much higher.  This worried the nurses (and us) so they took a chest x-ray.  It looked like his breathing tube was in a perfect position so that wasn't the issue.  Our nurse, Jim, thought that the tube was in the right position between the clavicle and the lobes of the lungs, but the tube had gotten oriented to be abutting the side of the trachea instead of pointing down into the lungs.  They tried to maneuver Benton to remedy the issue and it helped slightly.  His saturation levels climbed up to about 82%.  Upon further investigation of the chest x-ray, they determined that the left lobe of his lung had deflated and that his oxygen saturation was solely coming from the right side.  On one level, this was a relief to know why he had de-sat'd, but on the other hand it is scary to think that your baby is working on one lung.  The attending doctor came in and explained that babies survive on 40-60 oxygen saturation in the womb and that Benton was not in any danger at 82, but that to grow properly we will really need to get him back up to 90. The attending also explained that they are going to try several treatments to re-inflate the lung but that they were going to take their time to figure out a way that would avoid stressing his body anymore than they had too.  They said it probably would take several hours to get him back to normal and that we could go home and call back if we were worried.

It was calming to hear the explanation and that they had a plan so we took the attending's advice and headed back, said our nightly prayers for Benton's health, especially praying that his lobe would re-inflate, and got to sleep around 12:30AM.  We got up and phoned the NICU at 5AM to check on his progress.  They had been able to increase his JET pressure high enough to re-inflate his left lobe and get him back down to an oxygen mix of 70%, so that was good news.  But his nurse told us that his blood gas levels still aren't that great.  They have been keeping a very close eye on his blood gasses over the last few days since his PIE set in.  So right now, we're re-focusing our prayers towards him having better blood gas levels and healing his PIE.

On the brighter side of things, while we were whispering words of encouragement through the isolet, we managed to see Benton open his right eye for the very first time.  This was one of the best things we had ever witnessed!  In the womb, babies have their eyes fused shut until about 26-28 weeks, so it was normal that Benton's eyes were fused when he was born.  It is such an amazing thing to witness your baby's eye open for the first time and have his first look be that of his loving parents! Even though it's a small thing, it made our night.  He closed his eye back up very fast, probably because there were bright lights around.  But it's nice to know he can finally see us while we are talking to him. 

Momma Marika Looking at Baby Benton

A beautiful photo my sister, Elyse, took of me looking in on Benton.  He is such a miracle!

The Honeymoon is Over: Day 10 & 11

When we first embarked on this journey in the NICU, we were told that a baby can have a "honeymoon period" at the beginning and then have some setbacks.  While we had heard this loud and clear we of course thought our little fighter would be one of the babies whose stats would just keep going up.  Well the last few days have definitely shown us that Benton's honeymoon period is over and the NICU roller coaster has begun.

Last night was another tough one.  We were told that Benton's oxygen saturation was decreasing and they had taken a chest x-ray and saw that his PIE had gotten worse.  Earlier in the morning, they were hoping to wait longer to see if he could heal his PIE himself, but since his oxygen requirement was getting higher and higher, they couldn't wait any longer.  They started him on steroids which should help his lungs heal.  Right now his lungs are inflamed due to the stress from the ventilator and the steroids should decrease the inflammation, however, they do come with side effects like increased blood pressure and higher sugar levels.  So they will be taking many readings and do a very complex balancing act over the next few days.  His first dose was at 8pm last night and from there, they are doing it every 12 hours starting at 6:30AM.

We saw him today on his 11-day-a-versary.  He is still in a tenuous state due to his PIE.  When we showed up, he was requiring around 65% oxygen, but then they had to increase it to 79% before we left.  Because of his sensitive state, we were advised not to touch or stimulate him until he was able to get back to a more stable condition.  We skipped his normal story readings and we spent about two hours just trying to whisper healing mantras and encouragement to him.  Even though it's a very tough situation, we believe that he can overcome it and we keep praying for him.

Joe's mother, Mary, bought Benton a topaz colored rosary because topaz is November's birth stone.  She also bought him a Ty Beanie Baby Reindeer because we had been seeing deer on the way home and in Native American culture dear have a lot to do with regeneration among other things.

Even though we are worried about the delicate state of his lungs, there are many other encouraging signs.  We got an update that one of his recent weights had him at 560 grams which is way over his birth wight of 470 grams.  This number is slightly skewed because he had just received a blood transfusion and liquids via his IV.  The nurse thought a more realistic number would be probably around 500 grams which is awesome because it seems that he's bounced back above his birth weight.
 His skin tone is really turning a very healthy pink which is also exciting.  This color is worlds away from how he entered this world.  He's also shown signs of trying to open his eyes.  Typically a babies' eyes open around 27 to 28 weeks of gestation, however, due to the added stimulation, they believe that Benton's eyes will open in a week or so.  We are so excited about him finally being able to see us as we are talking to him and reading to him.

We want to thank you all for your support via posts, texts, calls, thoughts and prayers.  We believe that your support is playing a huge factor in Benton's recovery, so please keep the positive energy and prayers coming.

Our Little Fighter, Day 9 & 10

These last few days have definitely been some of the scariest days thus far.  Not only are we now fully comprehending the alarms, beeps and numbers on his monitors, but Benton has been having a rougher time over the past few nights.

Yesterday morning we went to visit Benton and heard he had given the nurses quite a bit of excitement the evening before because Benton had been 'de-sating' which means his blood oxygen concentration levels were going down.  The night nurse had noticed that there seemed to be a bit of extra room around his respirator tube and this may have been causing his tube to come out from its correct position.  The hospital staff made the decision to increase the size of his respirator tube from 2 to 2.5 (this number indicates the internal diameter in mm).  One thing to note is that normally babies are intubated with a 2.5 tube and most hospitals don't even carry the 2mm tube.  On the day Benton was born the 2.5 tube was too large for him and luckily Georgetown carried the smaller tube.  This increase in Benton's tube size was a quick win for us as it showed his airway had either grown or the swelling had decreased.  As Benton's nurse said, "he's on his big kid tube now".

Along with the addition of the bigger size tube, the doctor explained that he believed Benton was suffering from a condition called PIE (Pulmonary Interstitial Emphysema).  Today the doctors confirmed that this was indeed the case.  It means that Benton's premature lungs are a roughed up from all the pressure the vent was putting on them.  The condition results in a decrease in lung efficiency.  Depending on the day, Benton needed an oxygen mix of anywhere between 25% and 45%, but now he needs closer to 70%.  At this point, the doctors want to wait for his lungs to heal himself before taking any other actions.  There is a possibility of treating Benton with steroids to reduce the swelling in the lungs but that is a call they will make later depending on how Benton tolerates his condition.

Further complicating the issue is that Benton is trying to breath on his own which is actually at odds with the specialized JET ventilator.  The standard ventilation will let the infant breath independently, but the JET is designed to do all the work for you.  And as Benton tries to breath by himself, it causes a decrease in efficiency.  They are giving Benton some morphine to relax him and hopefully he will let the machine give his lungs a rest. 

We also talked with his doctors regarding his most recent head ultrasound and they indicated that he did have a small level 1 (out of 4 levels) brain bleed, and they would watch this to see if it grew.  This scared us at first, but on Monday we found out that both a level 1 and level 2 brain bleed does not pose long term complications. Our prayers will be that this bleed remains at the current level or fixes itself.

That same day we read Benton lots of stories and held him while telling him how much his mommy and daddy love him.  Benton has really seemed to love hearing stories read to him as his levels always seem to increase whenever we touch or talk to him. 

Sunday evening we went back to visit him and started reading him the Berenstein Bears and Bear Wants More as well as singing him the Snuggle Puppy Love Song.  While we were reading him stories his blood oxygen levels were drawn and his heartbeat plummeted and he started de-sating.  As we watched on many doctors and nurses came running to his bedside.  It is such a scary thing to watch your son struggle in such an environment even with the best nurses and doctors helping him.  Luckily Benton's vitals stabilized quickly and we were able to finish reading him his story.  It just goes to show how much of a roller-coaster ride his road to recovery will be. 

Right now our biggest prayers are for Benton's lungs to heal, his PDA to close and his brain bleed to stay at it's current level or even go away.  Please continue to send your thoughts and prayers to Benton and bring healing energy to our miracle baby boy.

Our Little Fighter, Day 8

Today has been an emotional day for our little family.  Not only are my hormones swinging all over with me experiencing hot flashes every night, but I have also been trying to fully wean myself off the pain killers so I am fully present when I visit with our little man.

Today we went to visit Benton for this 8th day-a-versary.  Immediately upon entering the NICU and heading to his bedside I noticed that there had been a change in my little boy.  He was wearing yellow ear muffs and new equipment was hooked up to him.  I totally had a small freakout as the nurse explained his blood gases had not been promising the night before and therefore they had taken him off the regular ventilator and put him on the jet puff ventilator.  This machine would help his lungs breathe easier as it provides 400 puffs of air a minute vs 40 on a normal ventilator.  The noise of this machine can be intense so our little man has to wear ear muffs for the foreseeable future while he is on the jet puff machine.  In addition, the jet puff will also help his lungs since they are so prone to collapse.  It was reassuring to know that they made a change that will benefit Benton, but it definitely felt like we had taken a few steps backwards rather than forwards.  The social worker that helps in the NICU had said this could happen... a preemie's progress is not necessarily linear and it can be a few steps forward and then a few steps back for months.  While I understood this in theory, the experience of receiving not as positive news regarding my beautiful baby boy was hard for me to take.  While Benton's progress report was not as we expected it was still absolutely amazing to spend the afternoon with him.  Having my mom and sister there with Joe and I was so reassuring.  Their positive energy and my sister's knack for photography makes these visits so lovely.

In the evening, we went back to visit Benton and saw him get his 2nd dose of the ibuprofen for his PDA duct.  I also got to change his poopy diaper - a big plus in my book.  During our evening visit the nurse also discussed how Benton was having more difficulty regulating his temperature, but that was likely due to him focusing his energy on other aspects of his recovery.  The NICU will keep his isolet warm and humid just the way he likes it for as long as he needs.  Spending the evening with my beautiful boy is now my favorite activity and seeing my little miracle each day makes that day the best of my life.

Please send prayers for Benton to help his PDA duct close and his blood oxygen levels to improve so he can go back on the regular ventilator.

Happy Week - A - Versary!

Today was Benton's 1 week birthday!  Making it to the one week mark is such a milestone in a micro-preemie and we couldn't be prouder of our little fighter.  We visited at 11:41am on the anniversary of his birth and sang him a birthday song.  We then talked to Benton and I changed another poopy diaper.  It's such a funny thing...with preemies every small milestone feels like the biggest in the world.  Most parents probably are disgusted at the thought of changing a poopy diaper or at least aren't seriously excited; however, with our little man the fact that he has good diapers with poop is a huge accomplishment as it shows his bowels are moving and the food he is digesting is working its way through the system.  Joe was able to feed him by injecting the syringe of milk into his feeding tube and then holding up the tube to let gravity do its work.  We are so proud of our little guy as he was starting to get feedings every 4 hours of 1ml milk.  Benton is such a feisty guy, he kept putting his hand up to his feeding tube, which is a highly developed move for a guy his age.

Later in the evening, we went back to visit Benton with Joe's parents and heard that his PDA duct had not fully closed and was starting to cause him some problems and they wanted to start another course of the ibuprofen.  This is why the NICU is so hard on parents...one second he seems to be exceeding all expectations and in the next it seems that he has taken a step backward.  With the reintroduction of the ibuprofen he can no longer be fed milk and has to go back to relying on IV fluids.  We read him a bedtime story which he enjoyed and wished him a good night. 

It's amazing the love you feel for your little baby and how protective you are right off the bat.  It feels as if I am praying for him and thinking about him constantly.  Being a parent is already our life's biggest accomplishment and watching him grow is both a privilege and an honor.

Please send your prayers and love to Benton and pray for his PDA duct to fully close.

Our Little Fighter, Day 6

It's now been six days since Benton was born and to say that these days have been a roller coaster both emotionally and physically would be the understatement of the century.  Here are the latest updates to catch everyone up on Benton's progress and sharing the story of how Joe and I became parents...

On the day Benton was born, Joe had the honor of seeing him within the first 15 minutes of his life after they stabilized him.  When Joe first saw him, Benton had a heartbeat but his breathing was extremely labored and he wasn't moving.  The NICU doctor reminded Joe that he was extremely premature and they would do what they could.  They sent Joe back out to wait for Benton to stabilize and 10 minutes later the doctors came back to the waiting room and told Joe "he's breathing a little better now and he's starting to move".  Benton looked world's better and was breathing normally with a ventilator and stretching his little arms and legs.  This was the start of our little fighter making his momma and daddy very proud.  Once Marika was out of surgery and coming off the anesthesia she got to visit the baby and see his little tiny footprint.  Later that night, we went back to see Benton a second time because the first time Marika felt that the pain killers were interfering with her interaction with Benton.  This second visit, Marika went out of her way to avoid the prescription painkillers so she was less loopy.  He was small but he was our miracle.

Saturday November 9th was Benton's 1st day-a-versary.  Joe and I made sure we were present at Benton's bedside to sing him happy birthday on the one day anniversary of his birth.  Seeing him struggle and be at the mercy of a multitude of machines was one of the hardest moments in my life.  Every few seconds another alarm or bell beeps signaling either a new medicine needs to be administered or the heart rate monitor, blood pressure monitor, breathing tube monitor or heat monitor had registered an unhealthy level.  Without understanding all of the numbers on the monitors it can be utterly terrifying to sit in the NICU beside your baby.  With every sound your heart jumps and you pray that the alarms are not for your little boy.  It's obvious that this NICU experience will be one of the more trying moments in our lives.

Sunday November 10th was Benton's 2nd day-a-versary.  During our visit to the NICU we had the opportunity to discuss Benton's progress with the senior NICU doctors and hear about the issues we were about to start dealing with on a daily basis as parents of a micro-preemie.  Listening to the doctor's concerns for our baby and how they would handle each possible complication was both terrifying and reassuring.  It was obvious that our baby was in the best possible care but everything with a tiny preemie is extremely tenuous.  One of the main issues they raised was the PDA duct of our boy.  The PDA duct is a valve between the heart and lungs that naturally is open while the baby is in the womb but closes before birth.  With that duct still open Benton was having a harder time breathing and he was getting a small amount of blood in his lungs.  To help fix the duct the doctors prescribed him a course of 3 doses of ibuprofen which should help to reduce the size of the duct.  That evening Benton had his first dose of the ibuprofen drip which should help him but has also caused his blood pressure to rise.

Monday November 11th was Benton's 3rd day-a-versary and the day he was baptized.  Visiting Benton in the NICU  was extremely special because I was able to finally touch my son's hand and place light pressure on him (which is the equivalent of holding a preemie).  The nurse on duty, Laura, was such a sweet heart and she truly wanted to make sure we got some great photos of Benton with me and Joe holding hands in his crib, laying a pen down next to him so we could compare his size, and placing my wedding ring on his arm.  It truly is unbelievable how small he is, but it becomes truly obvious when you see my size 4 wedding band hanging off his arm like a bangle.  While visiting Benton, Laura let us know that they could easily arrange a baptism for our little guy.  Since we had a lot of family in town we decided to hold the baptism that very day.  Father Joe from the chaplain's office performed the baptism and we had a little white biblical christening gown laid on top of Benton.  The ceremony was beautiful and the NICU allowed us to have the entire family present at his bedside to participate.  Seeing my beautiful baby boy baptized before God left me feeling peaceful and serene.  It was so nice to know that God would be watching over my miracle baby and that everyone's thoughts and prayers could be channeled toward our precious boy.

Tuesday November 12th was Benton's 4th day-a-versary and the day I was discharged from the hospital.  While still in the hospital we visited Benton multiple times especially since his blood pressure had been getting very high due to the ibuprofen drip that had been given to him to help his PDA duct.  The discharge process from the hospital was highly emotional since I couldn't bring my precious baby home and would no longer be just steps away from his room on a 24/7 basis.  It's hard to comprehend how to deal with everything having to do with your own personal recovery while constantly thinking about being near your baby during his time of need in the NICU.  Even with all the emotions its important to remember that the NICU is the absolute best place for Benton to be right now and we will just have to be strong.  Once we were fully discharged and relaxing at home I called the NICU to check on my beautiful boy.  The nurse let us know that things were going fine, but that he had developed a skin infection since his skin is so thin and can't hold up well to moisture.

Yesterday was Benton's 5th day-a-versary.  My dad, Joe and I all went to visit Benton for his birthday but they were performing a lot of procedures on him.  First he needed a chest x-ray because his breathing tube was too shallow and then they needed a second chest x-ray to confirm they had moved the tube into the correct position.  Then he needed a renal ultrasound to check his kidneys, a echocardiogram to check his PDA duct and the addition of caffeine to help his breathing.  While we were at the NICU for a large chunk of the afternoon we really felt like had barely gotten to see him.  Luckily we decided to go back that evening for a second visit.  Not only did he look so much better and more relaxed during the evening, but his nurse was able to give us the results for the multitude of tests he had endured during the day.  The echocardiogram showed that the PDA duct had gotten smaller and the renal ultrasound came back with no issues.  Both nuggets of news made us smile the biggest I had all week.  To cap off the night we started a new tradition with Benton where we read him a little golden book before bed time.

Today is Benton's 6th day-a-versary.  We went to visit our resident cutie and sang him happy birthday right at 11:41am.  Visiting him on the anniversary of his birth has become my favorite activity and the happiest part of my day.  When we arrived today, Katie, Benton's nurse, was setting up a morphine drip for Benton because they were about to redo his skin bandages and that always gets him riled up and the morphine calms his blood pressure down during these traumatic experiences.  Once the morphine had been administered Katie helped me to take his temperature, change Benton's diaper for the first time and also help change his bandages.  Changing a diaper on a micro-preemie is daunting to say the least, but the feeling I felt by helping participate in his "cares" was one of the best ever.  Today we also received the amazing news that the potential brain bleed they saw on his head ultrasound wasn't worrisome and Benton was ready for food for the first time ever.  They added a feeding tube and gave him his first vial of milk today.   Hopefully with his mother's milk he will be able to grow big and strong very soon.

Sleeping Cutie, Day 6

Tiny Benton

This is a picture my sister shot of me holding Benton with a few props to show his tiny size. The gold bangle on his arm is actually a wedding band, size 4 finger, and the pen illustrates his length at 11.5 inches.

Benton's Birth Story

We are new parents to our beautiful son Benton Robert Bertram. He surprised us by coming much earlier than we expected at just 23 weeks old weighing only 1 pound .5 ounce on November 8th. It's been a life changing experience for us and we feel blessed that Benton has already made it to his 5 day anniversary. Our little man is a fighter and we will share the story of our miracle baby here.

I had a high-risk pregnancy and was diagnosed with a condition called placenta previa so the doctors were watching me very closely since the beginning. When I went in for a routine checkup, my doctor noticed that I had lost my amniotic fluid and was in preterm labor. I was rushed to the hospital and monitored closely, hoping to keep Benton in my womb as long as possible.  As soon as I was admitted to the hospital we started calling our families and they came running with people coming from Hawaii, Los Angeles, Michigan and the depths of the Kauai jungle.  Having our family here with us has been such a blessing and we wouldn't have been able to survive without their help.  On the second day of my hospital stay, I started to have contractions and was put on a magnesium drip to help prevent any brain bleeds, which immediately made me feel absolutely awful, with horrible flu symptoms. I was told not to eat in case we had to have an emergency C section. The next morning I was feeling better, things were looking good until I got up to use the restroom, felt something, and my cord had prolapsed. My nurse, Lindsey, caught my cord and held baby Benton inside of me. The alarms rang and up to 15 doctors/nurses/surgeons ran into my room and rushed me to surgery. Joe had to nervously wait outside. They didn't even have time to scrub up or count all of the instruments before they began my emergency classical C section. I was terrified but focused on saving my baby. The anesthesiologist was running late, the nurses were yelling for him and before he even made it to the OR, I told them - 'I know i'm still awake, but you can start.' My nurse Lindsey was my guardian angel throughout the ordeal telling me  'i'm right here with you' as she held Benton in place in my womb on the operating table. The anesthesiologist came, I was put under general anesthesia and went to sleep. A minute later at 11:41am Benton was born and rushed to the NICU. The doctors came to find Joe and he met our sweet son 15 minutes later. When I awoke an hour and a half later, I was feeling loopy on morphine but couldn't wait to meet our son. It felt incredible and surreal to see our little miracle. He was just so tiny.  Please send prayers, positive thoughts, and healing energy to a healthy, long life for our little man.