"We can do this...."

So....the drive to the hospital was awful...I just stared out the window for about half the ride, and the second half of the way I cried and cried as the reality of what was happening was just starting to sink in.  Pretty much my life-long dream was to be a mom...I always wanted to be the pregnant, barefoot woman in the kitchen baking bread and having all the kids running to greet their daddy when he got home from work :)  I never cared about having a carreer...I am lucky that I actually really like my job that I have now, and I love taking care of people.  As a nurse you can do that for as little or as many hours each week that you want.   Anyway, as I was sitting there on the way to the hospital, I realized I didn't even really know what our son looked like! I had seen him for such a short time, and mainly on the ventilator.  I ached to hold him...I had never even touched more than the top of his head because anything more than that might have irritated him laying there in his little bed.  I was trying to stay hopeful, but I kept hearing the doctor's voice saying "Those kids don't usually do very well" as he shook his head talking about CDH kids, which Jacob ended up having after all.  When we got to he hospital, someone (my mom? Jeff? I can't remember) wheeled me up to the NICU, we signed in, did the 3-minute hand/arm scrub like they do before surgery (each time you enter the NICU you have to do it), and I was wheeled over to his bed.  I felt so sick to my stomach, and I started to feel awful pressure in my chest from seeing him like that... it was almost hard for me to breathe.  I just stood up from my wheelchair to stand next to his bed.  I couldn't help it, but I had to touch his arm...if I couldn't hold him for who knows how long, I was at least going to feel his arm for a few seconds... when I got there, I could tell he had been agitated, and I looked at the monitor and his heart rate was fast, and O2 sats weren't so hot...I looked at the IV pumps to see what sedation they had him on, and there was NOTHING...I was livid because I knew they weren't trying to wean him off the vent since he was going to need major surgery.  There was absolutely no reason to leave a newborn wide awake on the ventilator while they did tons of tests and put in IV's.  I tried to be polite as I asked the nurse if he was going to be geting anything to sedate him, and she said he had a little bit of morphine before the transfer earlier that morning but that's all he had.  I didn't want to come across as the evil "new baby's mom", but after having a conversation with her (I think I was polite? Maybe?  Don't remember exactly... :)  Anyway whatever I said led her to ask the doctor for some pain meds/sedation, and they might as well have given it to me, because I felt so much better knowing that even though he wasn't doing well, at least he wasn't awake and suffering anymore.  The rest of that whole day was crazy, with what felt like 50 doctors coming and going, each having their thought on what to expect for him before surgery.
           One of the doctors said that the surgery is not actually the most risky part...it's the before and after that's the most life threatening time.  The pressure around his lungs was too high for them to operate right away...they didn't think he would do very well.  Usually, when diaphragmatic hernias are diagnosed before the baby is born, they schedule a c-section and then take the baby to surgery right away.  However, with Jacob, since they didn't know right away, the pressures around his lungs had gotten too high for them to operate.  All that first day, his ABG's (measuring how well the vent is breathing for him/how well he's getting oxygen) were terrible, and as they kept getting worse, they were changing the ventilator settings and put him on nitric oxide (helping to dilate the vessels causing the high pressure).  He kept getting worse and worse, so they ended up putting him on a high-flow oscilator which was giving him tiny breaths about 900 times/minute.  After that, his abg's started to improve, but the pressures around his lungs weren't getting any better. 
           The surgery was originally scheduled for Wednesday the 9th, so we just sat by his bed, and I was still in sort of a dazed state from everything going on, along with not having slept for days.  We had him baptized on Monday, which was difficult becase it reminded me that "He's so sick, lets baptize him 'just in case....'"


Fr. Remek baptizing Jacob, Feb. 7, 2011.


On Monday night, once we got home I cried like never before because now we were HOME, but with no baby... I had the worst headache, my eyes were swollen, and I just prayed the type of prayer where there really are no words.  It's just the kind of prayer where you recognize the presence of God, and that's about it.  I just sat there with Him, didn't say anything, and just was...I didn't have anything to offer, and looking back, I think of "Be still and know that I am God..."  That's about all I could do.  Tuesday was a day of a lot of ventilator changes, blood work, and they did another echo which showed worsening pulmonary hypertension....at least they had his sedation to a point where he would move occasionally but was obviously comfortable....our social worker was great, and she got Jeff and me a spot at the Ronald McDonald house (an amazing place for families of sick children at the hospital to stay for a small donation so they can be close to the hospital).  We stayed there Tuesday night, which was so, so nice to be only a block from Jacob.  Even though I couldn't be with him, at least I was closer than if we were home...
         Since I started changing my diet for the better, exercising more, and taking Juice Plus several years ago, I haven't been sick at all...not even a little cold (I used to get a cold every October/November, without fail, before that...), so when I went to bed on Tuesday night feeling like I had the worst flu ever, I was frustrated at the timing of it all, because I didn't want to go in to see Jacob if I had something contagious.  Well, it wasn't the flu...it ended up being really, really bad mastitis, which I didn't know can present like the flu (since I had never had a reason to get it before).  Starting late Tuesday night, I had awful chills, fever, and absolutely no energy at all. I didn't know if it would get better by Wednesday morning (I was hoping it would, since it was the day they were planning on during surgery).  I ended up going up to the unit to look at him briefly, not knowing if his surgery was going to happen for sure or not.  When I got up to the unit, there were 15 doctors and physicians assistants (not an exaggeration...I counted...) standing around his bedside, one representing each specialty they had called in to take a look at his case...they were all debating about whether he was stable enough to have the surgery, and each was giving his reason why he/she thought Jacob should or should not have it today.  It was difficult, because I understood everything they were saying (I don't know if they knew I was listening and knew what they were talking about), and most of them thought he was not stable enough for surgery, and they especially didn't want to transfer him to the O.R. and risk something happening to him in the hallway on the way there.  One of the Dr.'s was the ECMO doc (you can google it), and they were trying to decide if he should go on ECMO for a few days, or if they should try tweaking the ventilator to get him more stable.  Anyway, they decided to wait on ECMO and the surgery and to do echo's until they decided his pressures had come down enough to operate.  So- I was sitting there, still thinking I had the flu, unable to get out of my wheelchair because my pain was really bad from the c-section (I had been walking wayyyyy to much the last few days) staying far away from his bed but close enough so I could see him from a distance, and was kind of relieved the surgery wasn't that day so I could there at the hospital when he ended up having it.  I had Jeff bring me home because I felt so terrible...I would have chills so bad my teeth would chatter, and it was 75 degrees outside. I laid on the couch all day because I could hardly move.  I don't remember much from that day except that my mom came over and spent the day taking care of me so Jeff could go be at the hospital with Jacob.  She would warm towels in the dryer for me when I had chills, cleaned up our kitchen, made me Miso soup (LoL...we eat weird stuff...), and tons of other things that I'm sure I didn't even see at the time.
         Thursday I laid at home still with fever/chills, and never made it to the hospital.  I did actually get some sleep though, so maybe it was a good thing.  Echo still too bad for surgery....
          As Jeff was talking to his family giving them updates, his parents decided to come down, knowing Jacob would be having surgery in the next few days.  I'm so glad they ended up being able to come.  I felt bad because I was so sick, I didn't have time to even wash sheets/clean the house...and I always like to have the house really clean when people come to stay with us!  I felt bad they had to kind of find their way around because I was feeling SO sick and sleeping most of the time.
           On Friday, I was able to crawl out of bed, and we headed to the hospital.  The surgeons made their rounds, read the echo from that morning, and decided that today is the day!  Yet again, those emotions are pretty much impossible to describe...relief that it's actually happening combined with panic/fear/sick nauseated feeling that they're about to cut open my baby... They said he was still too critically ill to transfer to the operating room, so they shut down the NICU, and brought the O.R. team to him so incase it went bad he would already be in the ICU.  I spent the morning with him and felt totally numb and nervous...I couldn't get enough of just looking at him and loving him...  we were sitting in the waiting room, which has glass windows, and I could see the hallway connecting the O.R. to the NICU...when I started to see them come through the doors wheeling all of the sterile carts towards us, I cried, and I couldn't stop....there was one person after another, all dressed in their scrubs, pushing these huge carts full of surgical equipment, sterile drapes, anesthesia stuff, and everything they would need for the surgery....