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.