"Normal"

         Five weeks ago today Flint was born.  These past five weeks have been the fastest, craziest, scariest, happiest, busiest, most anxious, most relieving, and most frustrating weeks of my life!  I can only imagine how Flint would summarize those same five weeks, if he had words to articulate his experience!  I am SO grateful that things are progressing well and that we are ALMOST out of the NICU and into our home.

         Flint has four issues that have made his start here on earth a challenge: he's a preemie, he was growth restricted, he has Hydrocephalus, and he has Dandy-Walker.  Any one of those issues bring challenges, but put them all together and it is a little daunting.  Thankfully, the fact that he's a preemie and was growth-restricted in the womb will not have any long-term effects on Flint's progress.  The effects of the Hydrocephaly and Dandy-Walker will play a larger role as he continues to develop, but at this point, we really have no idea how severe their impact will be. Granted, it is very minor compared to the challenges that some people live with throughout their life, but it is still hard on Flint and scary for his parents as we try to figure out what it all means for everyday living.  At this point, nothing has come easy for Flint, and I'm not sure that anything ever will.  Only time will be able to answer that question.

        Flint is doing well, and I'm learning to be patient with the process and most importantly, to adjust to a new "normal."  Nothing about this experience has been what is normal for me and the births of my first four children, and I'm learning that that's OK.  I'm adjusting my expectations and trying to not be afraid of the things that I don't know with regards to Flint.  Most days, it is easy to not be afraid and just love my sweet little boy.  There are other days though, that require every amount of mental and spiritual exertion on my part so I don't fall into despair and fear.  It's a blessing that those scary days only happen once in awhile, but I'm learning that they will probably be a fairly constant part of life now that Flint is here.  I think that one of Flint's most important jobs here is to help me remain in a constant state of prayer.  So far, he is fulfilling that mission spectacularly!

          One of those scary times happened a couple of days ago.  Before Flint got his shunt, his progress was very slow.  Things really halted for awhile because the pressure on his brain was affecting so many other things.  Many of the normal reflexes that babies are born being able to do, Flint couldn't do because it was just too early.  The main one of these was sucking.  Before his surgery, his feeds were primarily all done through a tube but right before we left for Dallas, he started getting the hang of eating from a bottle.  He would still get very worn out from the exertion it took, but he was still progressing.  Once he recovered from the shunt surgery, he really put things together and started finishing almost every bottle with ease.  I was so excited because it seemed that soon I'd be able to start breast-feeding, which was really the last little bump we needed to get through at this point in time.  We got back to Amarillo on Monday night, and on Tuesday they had me breastfeed him for the first time.  He figured it out like a champ!  He didn't do it all that long, but he had no problem latching on and still ate for a good 10 minutes.  Considering that it is a lot harder to nurse than it is to drink from a bottle, I was so excited that he had the energy to go that long.  The nurse practitioner on duty said he was about ready to go home and that we should plan on "rooming in" with him Wednesday night and then he could go home Thursday.  We were so excited that they felt like he was good to go, but I was also a little anxious and worried.  I hadn't seen him be consistent with his feedings yet, and I was just worried about how he and I would do once we were home with no one around to help if things got bad.  I didn't sleep well Tuesday night, while I worried about how things would go once he was home. 

          Wednesday morning, I got a phone call from the NICU.  Flint had a bad night and had not eaten well.  They had finally decided to put the tube back in so they could feed him.  When a baby only weighs 5 1/2 pounds, you can't just let them not eat!  I showed up to try to nurse him again, hoping it was just that he decided he LOVED nursing and didn't want the bottle, but he would have nothing to do with me or the bottle.  He wouldn't even suck on a pacifier!  He acted like he had no idea what to do with something when it got in his mouth.  He just cried and cried, and there was very little I could do to help him. The doctors and nurses couldn't figure out what to do but they all assured me that he'd get through it and figure things out.

         This was a huge low point for me.  The fact that he had been doing so well in this regard, and then suddenly slipped backwards so much, made me wonder if this was Flint's normal.  I didn't know why he was doing it and wondered if this was a normal preemie thing, or if this regression had something to do with Dandy-Walker.  I became quite fearful as the realization hit me that Flint may struggle with EVERYTHING he ever does, and there could be a whole lifetime of him taking 2 steps forward and 1 step back.  I realized I had kind of been living in a state of denial since he was born, with regards to the issues that Flint will have to deal with for the rest of his life.  The neurosurgeon in Dallas gave us a lot of hope when we met with him back in August, but I also don't know how realistic he was being.  He explained that Dandy Walker kids can be very functional, and even told us that he's got one kid who was the class valedictorian and another who plays college sports.  That's wonderful, but this is also the same doctor who told us Flint would be recovered from his surgery and home one day later!  He's also the same guy who told us that he puts one shunt in that lasts them their lifetime and you hardly ever need to do any revisions or mess with the shunt again.  Well, the more research we've done and the more doctors we've talked to, the more we know that it is HIGHLY unusual to NOT need more surgeries on shunts as time goes on.  They are highly susceptible to breaking, infection, getting knotted, or just not working right, and people with Hydrocephalus almost ALWAYS have multiple surgeries. The more I've interacted with Dr. Weprin, the more I've learned he is the eternal optimist.  This is good for many reasons, but I have come to the place where I also need to know REALITIES.  In my mind, what Dr. Weprin told us as "best case scenario" became the norm, and I put all my eggs into the "Flint's going to be just fine and not have any problems" basket. The problem with this, is that when anything doesn't go right or according to my experience with "normal," it is horribly discouraging and causes me great worry for his future.  This was definitely the case for me when I left the hospital that afternoon. 
           I called home in tears, and had a good talk and cry with my dad.  I shared all these fears and worries with him and asked "Is this ever going to feel normal?  I'm so tired of being worried and anxious about him.  Will there ever be a time when I don't have to worry about Flint and his progress?"  My dad cried with me as he said, "Unfortunately Jessica, it probably won't be easy for a really long time.  I'm so sorry it is this way, but it is very likely that Flint is going to have to fight really hard with everything he has to do." 
           While this all has been hard for me to process, I am also grateful that I am at this point now.  I definitely still have high hopes for Flint, but I am also coming to terms with the hard stuff that MIGHT be a part of his life.  I am accepting more and more each day the fact that Flint has a birth defect that may very well limit him in life. I am researching more some of the specifics that he may struggle with, something I haven't wanted to do before because of how much it scared me.  I guess what I'm saying, is that I am becoming more comfortable with who FLINT is.  I am realizing that his "normal" path very well may be different than I wanted it to be.  It may be different than mine, or my other kids', or any other person I've ever met in this life.  However, it is exactly the path that it is supposed to be, and Flint is going to be the best one to show me what that path is.  I have also noticed a change in what I pray for.  Instead of just asking for blessings for Flint, I am now asking for help for ME.  I need blessings like more courage, more faith, more hope, more wisdom, and more strength to handle whatever challenges this little boy brings to me.  Gratefully, those prayers are definitely being answered!
         Coming to terms with Flint's disability doesn't change the fact that I am still very hopeful about his future.  He has defied the odds so many times in the past 5 weeks and I am still confident that he can continue to do so.  I'm just in a better place now to accept things if he doesn't.     
         The good news is that Flint eventually sorted things out and after the one bad day on Tuesday, he has done great again.  The occupational therapist came to work with him and see what the problem was, and she really feels like he was just worn out from breast feeding and the other things he's been through.  She reminded me that he is still recovering from a major surgery and is going through a lot of changes as he prepares to go home.  The last two days he's really been able to stabilize again, and has taken his bottles great when I'm not there and has nursed well when I am.  I decided that until he is ready to come home, we are now at the point where I need to be with him as often as I can so he has lots of opportunities to master nursing.  My good friend Julie is watching the kids all day for the next few school days so I can just camp out here at the hospital and nurse him when he needs it.  This is a good thing, because today he started to slip backwards again.  This time, everyone was more prepared for it, so when he started fighting me during his feeding, I immediately called the nurse practitioner in to help.  I didn't want him to get so frustrated and worn out that he regressed as badly as he did the last time.  She was wonderful and sat with me to help calm him down and help him get better organized. She pinpointed a few things to do to help him, and Flint was able to finish the feeding from his bottle.  I asked her if this was a preemie thing or if it was more of a Dandy-Walker or shunt thing.  She assured me it was a very normal preemie thing and it's just part of him sorting things out.  I feel very confident that he will get it all figured out soon and can come home.  I'm not make any promises, but I'm pretty hopeful that we'll all be under the same roof sometime in the next week!  When that happens, I promise you all will be the first ones to know!