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.