"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....

Our birth story :)

As someone who writes way too slow to have ever really gotten into journaling, I figured this would be my best option for getting my thoughts out now that I have had a little time to start to digest everything that has happened in the last 11 weeks.  I started to write soon after we brought him home, but all of the pain was still too fresh in my mind, so I took a break for a little while to enjoy life with Jake before really trying to organize my thoughts.  This post will probably be really long since it will sum up almost the last 3 months, and I want to preface all of it by saying that I believe that God's will is perfect, and sometimes he allows us to go through unthinkable things so that a greater good can come out of it.  Sometimes the "good" doesn't seem that as it is happening, but he knows our soul better than anyone, and he knows perfectly what we need.  I believe that all of this has happened so I could learn to love God more for who he is and not the good things he gives me.  Throughout all of the pain and devastation knowing we might not ever get to take our baby boy home, after struggling for a year and half to get pregnant, and going through 2 miscarriages, I felt amazing peace and strength throughout the whole ordeal.  I could really feel the presence of the Lord there in a way I can't really put into words.  I knew that however it all ended up, He knew what was best, and I just kind of sat back and trusted Him while I stood by Jacob's little NICU bed hoping for the day he would be stable enough for surgery, then hoping he would come off the ventilator, then hoping he would get to eat from a bottle so they could measure how much he was taking, then hoping he would be able to learn to nurse, then hoping he would be healing properly, then hoping he would get to come home....and now as I am typing this he is taking a nap in his bed, and I am waiting for him to wake up so I can go snuggle with him and kiss his little cheeks :)

THE BIRTH 

This was the first thing we saw when the ultrasound started-
our baby sucking his thumb :)


We have a lot of friends who have their children at home, and a few years ago, I would have thought they were crazy!  However, after doing a lot of talking to people and researching, I remember thinking that when I got pregnant I would like to try a home birth.  I brought the idea up to Jeff and he didn't object- he actually thought it sounded like a good idea after I explained everything to him that I had been learning.  SO- we did our prenatal care with Fruitful Vine in Jacksonville (just want to give a big shout out to them...they're awesome!  Google them if you're in the area and want more information on home births :)  We had a full fetal anatomy scan at 20 weeks to "make sure" there were no issues we would be dealing with if we had a home birth.  The ultrasound came back normal, and I had a very uncomplicated pregnancy.  I wanted to give this baby the best start I could before he was even born, so I made sure to eat really well, and also after doing a lot of research, I took Juice Plus (the research on Juice Plus is amazing, including their studies on pregnant women!  I loved the research so much I became a distributor for the company because I think everyone can benefit from taking this!  Check it out at tbishopjuiceplus.com)  Anyway, I had some swelling in my 3rd trimester and a little bit of dizziness, but other than that, everything went smoothly.  
          My due date was January 28th, which came and went with no signs of labor, and on the morning of February 5th (which seemed like forever having to wait that long!), my water broke at 10:30!!!  I can't even describe the feeling...I was nervous and excited, but calm at the same time.  I called our doula (another shout out to Heather Palmer- call me for her contact info if you need someone to help you through labor!) just to let her know that today was, in fact, finally, the day.  I did things around the house, got some laundry done, made our bed made for the birth (if it ended up being there...LoL...we didn't know exactly where it would end up happening at that point).  After a few hours of just some wimpy and irregular contractions, we decided to take a walk around the neighborhood to see if that would get things started and whoa...having contractions in broad daylight walking through your neighborhood is a little awkward.  LoL- needless to say, it did get things started so we made out way back home.  Early labor was painful, but calm and peaceful.  None of the birth team was there at this piont, so it was just Jeff and me hanging out at home, getting ready to have a baby.  I think it was around 4pm when I started to have more painful and frequent contractions.  I had planned on grocery shopping that morning when I got up, but instead my water broke...haha- so we had hardly any food in the house.  My mom brought some dinner over for Jeff at about 6:30, and she ended up staying and helped time contractions and just helped Jeff and me with whatever we needed.  Our original plan was to just have it be the 2 of us (me and Jeff) and the birth team, but it was a really, really good change in plans when she ended up staying (thanks, Mom!).  By about 7:30, the contractions were about 1-2 minutes apart and were lasting for a minute or longer.  I was barely able to have a conversation at this point, so we just dimmed the lights and just kept the house quiet.  It was very peaceful, and I focused on breathing through the contractions, and as they got more painful and frequent, I just remember being SO excited that all the pain meant that the baby was coming soon! I think it was about 8pm when Heather (our doula) got there, and shortly after, Tarah (one of the midwives) came.  Once they got there, I started to have very regular, long, and painful contractions, and I actually ended up throwing up from the pain.  Throughout the night, I walked, sat down, and tried pretty much every position you would read about in a book on natural child birth.  As the night progressed, I got more and more dehydrated since I kept throwing up from the pain, and any smells at all, or even trying to take a small sip of water would make me sick.  At about 3 or 4am, the midwife said I was fully dilated and could start to push if I had the urge during contractions.  Well... contraction after contraction came, and I never had that "if I don't push, I'm going to die" feeling that so many women say that have at that point during their labor.  I started to try to push for a while anyway since I was fully dilated, even though I didn't feel like I needed to, and I remember almost seeing stars...I had to stop pushing and just focus on breathing because I felt like I was going to faint from the pain and from exhaustion.  When Tarah said at 6am that after a few good pushes we might start to see the baby in the birth canal, I knew that I needed some sort of help.  I couldn't believe that after 2-3 hours of pushing until I could hardly breathe, there was still no sign of the baby.  I felt dumb saying "this isn't going to work" because I had never been through labor before, but I think my body knew somehow that Jacob (who wasn't named yet at that point) would need help once he was born.  Looking back, I feel like God allowed me to go through all of that because I'm stubborn and really, really wanted to have our baby at home.  Maybe he allowed me to experience labor because he knew I would have regrets if I "gave up" early in labor.  However, in the end, I think he was holding little Jacob inside me and not letting him come out as we had planned, because He knew this baby needed to be in a hospital.
         We had packed a "just in case, if for some crazy reason we have to go to the hospital" bag with a few changes of clothes, so Jeff got the car loaded up, and I got dressed as quickly as I could in between contractions.  Trying to do anything, much less in a hurry, at this point was excruciating.  Getting into the car, even with help, was almost impossible...  As we were about to pull out of the garage, the midwife told us, before she got into her car to drive to the hospital to be with us, that she talked to the doctor who would be seeing me and she would be doing a c-section.  I cried and said there was no way, and that all I needed was something for pain, maybe some IV fluids since I was so dehydrated, and I would have a baby like we planned.  By this point, I only had the urge to push a few times, so I thought if that kept happening, with something for the pain and IV fluids to give me a little energy, I could do it.
      One of the best things about all of this is the fact that it was Saturday, because we left for the hospital at about 6:15 am, which is rush hour and takes forever to get out of Orange Park into Jacksonville.  So, thank goodness, since it was the weekend, there were few cars on the road, which was good because Jeff was driving 90 and running red lights when there weren't any other cars around :P  The Buckman Bridge nearly killed me (for those of you who aren't from around here, the Buckman is a 3 mile long, very bumpy bridge connecting us to Jacksonville...not a fun place for a girl in labor).
       We got to the hospital at about 6:40am, when nurses usually are thinking "YES...this shift is almost over"... and in I come, in active labor, screaming (LoL...at this point I did not care what anyone thought...I was still so nauseated and dehydrated I'm pretty sure I wasn't in my right mind)...I feel really bad for the nurse who had to get me into the wheelchair and take me up to the L&D suite while Jeff parked the car...anyway, they asked me to sign some papers (REALLY?!?!? SIGN PAPERS??), so I scribbled my name, and they brought me to the room.  I think I passed someone in early labor, walking the halls of the unit, and I probably scared her...and if she was trying natural she probably saw me and said yeah right, give me the epidural. Anyway, they helped me onto the bed, and they asked me to lay on my back...um..."Lay on my back?"  All I could do was lay on my side, clinging on tight to the bedrail, and at this point crying during contractions.  All I wanted was for Jeff to be there, but he was parking the car.  He came quickly after and I just cried and squeezed his hand and was so happy to have him there to love me and support me.  The nurse put in an IV, and the fluids felt like ICE going through my veins.  Go figure, after all we had been through, now I started to have little urges to push.  They were very little, but more than I had previously.  One of the anesthesiologists came in and, in the middle of me having a contraction, explained what they would do during a c-section (even though I could hardly hear him), and he asked me to sign...and at that point I couldn't talk anymore, I just whispered "Yeah right....he has to sign for me."  They let Jeff sign the paper, and Dr. Slade (the surgeon) came in to talk to us, and I told her that I just needed something for pain and I want to try to have a baby.  She said that after almost 24 hours of unmedicated labor, with hardly any urge to push, the only option was a c-section.  At that point, I just surrendered, and was actually glad that this would mean that I could have something to relieve the pain. 
        Keep in mind that we got there almost at the change of shift.  I ended up laying there until 7:50...almost an hour, with no doctors or nurses coming in to get me.  An occasional nurse would come in to do something, but they were "waiting for the OK" to go to the operating room.  I was starting to get really dizzy from the pain of the contractions, my throat was raw, and my arm was SO painful from the cold fluid going in...  I knew I was going to have a c-section and was OK with it, even though it was the farthest thing from our original plan.  In walks another anesthesiologist, with the same consent form Jeff had signed for me, and starts explaining the same thing we just heard.  I was in the middle of one of the worst contractions, and I managed to get out "We already signed that", and he said we had to sign another one, and he had to re-explain everything to us because now he was the one on call and the other guy was on night shift and was leaving to go home.  Again, I was just crying and nauseated (I had nothing left to throw up at this point...), and Jeff signed the second consent.  The nurses came in and wheeled me to the operating room.  In the middle of those contractions, I COULD NOT WAIT for the pain meds, since I knew the pain wasn't going to help me have a baby naturally.  They pulled me over to the operating room table, and for that part, I had to be on my back... and I could have died at that point.  They rolled me onto my side and inserted the needle into my back...and I felt myself go numb from my stomach down....and I told everyone in that room I could kiss them.  RELIEF!!!   *sigh*......I was able to think a little more clearly after that.  I wasn't nauseated any more, and I felt like I had a little more energy since they were running lots of IV's into me.  I laid there while they were prepping me for the surgery, and I was in a place of total surrender, and totally at peace with the fact that this is how it ended up.  Even then, I didn't have any regrets, and I was OK with the fact that our plan didn't exactly go according to how we wanted it.  The actual surgery was more uncomfortable than I had thought it would be (but nothing compared to labor!!).  There was a lot of pressure as they pushed on the top part of my stomach trying to get him to descend lower so they could pull him through the incision.
      Jeff was standing next to me the whole time, and it was surreal to talk to him and to just look at him, knowing that our baby was about to be born.  Jeff got to see the baby first since he was able to stand up and see them pull him out...he kept saying "wow...wow...", and then he said sweetly, "I think his name is Jacob!"  (For anyone who talked to us throughout the pregnancy, you know we had issues with picking out names... LoL at one point we were writing them down on a dry-erase board...at one time there were 13 different names on there...)  Anyway, Jacob means "God will increase", and we had no idea what was about to happen in the next weeks after his birth and how appropriate his name would be for him.
      The nurses were cleaning him up and trying to get him to breathe a little better (his first cries were pretty quiet, and he wasn't getting pink very quickly).  They tried sitting him up and patting him on the back and suctioning him, but his O2 sats weren't coming up very well, and he was grunting a little bit instead of breathing well.  I got to see him for a brief second, and then they brought him right over to the NICU.  They put oxygen on him, and took a chest x-ray.  When the doctor saw the results, he put him on life support right away, because he said at the time it could have been one of 3 things.. little cysts in his lungs, which would be the best case scenario since they would probably clear themselves naturally after a while,.bacterial pneumonia, which would be the next best scenario, since they could give him antibiotics and it should clear, and the worst case scenario, a diaphragmatic hernia (a hole in the diaphragm, which allows the intestines to slip into the chest cavity, crowding the lungs and heart into the opposite side of the chest making it difficult or impossible to breathe).  He said he was pretty sure it wasn't the hernia, which was good because he said those kids "usually don't do very well."  He reassured us that it probably wasn't that, and they would keep doing chest x-rays to see how it was progressing.  Since I had just had surgery, they brought me to my room, and I was anxious for the nurse to wheel him in so I could hold him (I didn't know at this point everything that was going on with him in the NICU).  When the neonatologist came into my room and told us he was now on life support, I called for a wheelchair right away so we could go see him.  I think that was the worst thing I have ever seen, because he was in an open little NICU bed, hooked up to monitors with nurses around him, and he was on the ventilator (a tube going down your throat hooked up to a machine that breathes for you).  The worst thing was that he was trying to cry... his mouth was wide open and his little tongue was quivering, and his face was totally red... but he couldn't cry because the machine was forcing air into his lungs (which was what saved his life....)  All of the emotions at that point were so intense because we went so quickly from getting over our plans and having the c-section, being totally sleep deprived, having not eaten for 24 hours, being so excited our baby is born! to now being in a controlled panic mode that our little guy has some sort of life-threatening "thing" and we don't know what it is yet.  And seeing him cry and not being able to comfort him was awful... and I wasn't supposed to talk to him because "it will stimulate him too much."  I knew that it was best to keep quiet around him so he wouldn't hear our voices and be stimulated by that, but to not even be able to hold him, touch him, or tell him how much his mommy and daddy loved him totally broke my heart.  I almost couldn't cry, because I was in such a fuzzy mental state, and in pain from my surgery (I was up walking right away so I could see him).  We went back to our room and kind of just sat there because it's all we could do.  The doctor came into our room shortly after and told us that it was actually a the diaphragmatic hernia, and he was going to be transfered to Wolfsons Children's Hospital as soon as possible for further testing and surgery.  I remember just kind of staring at him as he was talking and nodding my head because it was all I could do.  I didn't know what time they were going to transfer him until the EMT's rolled him into our room at about 6am in this huge incubator thing with monitors and his ventilator.  It was like something from a horror show... it was huge , and the sound of the machine breathing for him was so, so loud.  The lady asked for his name, and I just looked over at him and said, "Jacob."  They had me sign some consent papers for the transfer, and they rolled him away.
           At this point, Jeff and I both agreed that he should go over to Wolfson's so he could be there with Jacob until I was discharged.  It was so hard to say "bye for now" and not be together as a new little family.  When the doctor came in to see me, I pretty much told her I needed to go (even though it was a little less than 24 hours since the c-section), and could I please have a prescription for some pain meds.  She understood, told me to take it as easy as I could given the circumstances, and gave me an order for some medication.  The nurse wheeled me downstairs while my mom went to get the car.  It was weird getting into the car in the same spot I had gotten out the morning before while I was in labor, only I was leaving the hospital without our baby, and was going to see him at another hospital...