Friday, August 24, 2012

To Pump?.....Or not to Pump???? uuug....

Preston's 7 months old now and on Monday he was 16lbs. 13oz. and doing awesome!  Growing great and status quo at this point and we've been able to keep him healthy and at home for the time being.  He's eating like a champ and loves his butternut squash and cereal, but is not too fond of the sweet stuff.  He must be his mama's kid lovin' the savory foods already!

Now that Preston is 7 months old and working on the solids he's decided that he's done nursing.  Actually, he's been done nearly a month.  Once his teeth cut through he was immediately self weaned.  It was exciting and heartbreaking for me all at the same time.  I had worked SO HARD to be able to have that connection with Preston.

Right when Preston was born, he was not a very strong eater.  For the first 2 months in the hospital, I was not encouraged to breast feed hardly at all.  Everything was all about production in making sure he was taking in the proper amount of mL per kg, which he rarely was able to meet his goals.  Even to this day Tyler and I keep track of everything he eats, the amount of protein he gets, etc.  A little on the obesessive side, yeah probably.  But, we were also told that his trends would be a good indication of his well being and that if we start to see a drastic change that it might be an indication of a potential problem.  While still in the NICU, I was able to nurse him maybe once or twice a day, but it was never comfortable with a crappy rocking chair with wooden arms and no cushion and a curtain pulled around the isolette and the staff poking their heads in every few minutes to make sure everything was okay.  It was hardly private or an nowhere near a neutering feeling.  But for some reason I didn't give up.

Because Preston wasn't consuming enough calories the doctors decided that he would need his bottles fortified.  I had been pumping right from the very beginning, but now this meant that nearly all of his feedings would be by bottle so that he would benefit from the higher calorie content.  It would have been so easy to give up and give him formula from this point forward.  Pumping every three hours is not easy!  It's miserable waking up in the middle of the night and poor Tyler, while I'm pumping he's giving Preston a bottle, so we're both up every few hours.

After the readmission when it was found that Preston had congenital nephrotic syndrome, they then were able to identify that he was not only lacking in calories but also protein because his kidneys were spilling all of the nutrients and immunities.  Knowing this, the Docs then recommended fortifying his milk to 26 calories/oz (normal breast milk and formula is 20cal/oz) and also he was in dire need of an oral protein supplement since he was retaining almost zero protein in his blood.  So now it was an absolute necessity. Weather I liked it or not, my kid was going to have a super fortified bottle and it was going to have a bunch of powdered formula and protein powder as well.  Breast feeding where my milk was absent of the needed protein and calories was almost not an option.  For some reason or another (call me crazy?) I continued to pump and fortify my milk.

I think part of me knew that he could tolerate the fortified breast milk and with his track record in health issues, I was scared to death to rock his little world by going to a 100% formula diet, for fear of "what if".  I know ultimately he would have been fine. I know babies get immunities from breast milk and I guess that I felt that if I could provide him with anything extra that would possibly help keep him healthy, then dammit, I better at least try.

After about 4 months of pumping and only breast feeding maybe once or twice a day, the milk production was extremely lagging, to the point of not being enough.  We were forced to start using more formula.  I tried everything to get the production back up. I pumped every 1-2 hours, drank the nasty licorice flavored mother's milk tea, avoided all of the foods you're supposed to avoid when breast feeding, took fenugreek supplements, which only made me smell like a waffle house and I had the aroma of maple syrup oozing out my pores....which sometimes was appetizing, other times just annoying.

Finally at 6 months I'm kicking myself daily, asking myself, do I keep pumping?  Am I really doing that much good in providing breast milk any longer?  I know Preston is tolerating formula now so switching him would be "fine"....will he be missing out on needed immunities?  I pressed forward for another month and kept telling myself that I'll keep going till 7 months and see where things stand.

7 months this week.....All week I've been tapering down the this isn't easy.  I now know that I probably am having the hardest time weaning myself and not Preston. Preston has self weaned and has made is clear, he's done nursing.  I guess my predicament now is all in my head.  Being that congenital nephrotic syndrome is a genetic trait and that it's very likely (over a 25% likelihood) that any other children that Tyler and I might have could possibly also be affected, I know that the likelihood of us having more children of our own is pretty slim.  It's my head telling me that I may never get the opportunity to nurse another baby again.  I already felt robbed that I didn't really get the "full experience" in bonding with Preston like other moms would with their babies.  That's not to say that I haven't bonded.  Being that we've been home with him all the time, I've been so lucky to spend a ton of time and glad that our careers can (somewhat) afford us the time and flexibility to be here as we need to. So lesson learned, don't take the little things for granted.  Someone else may not be as lucky as you and so you count every single blessing.

I'm sure this post shares a side of me that many of you probably have never expected. I know that this blog is mostly to update everyone on Preston's condition, but couldn't help but think this is something about me that I'd like to share as well.  It's really hard when people ask me "how are you doing??" and my answer is always generic "doing pretty darn good....". It's not that I don't want to go into detail, but it's just tough, and I don't want to make people walk away and think to themselves, "geez, I'm sorry I asked!"  I figure with this post I can somewhat share a bit of what I have experienced more on the personal side.  I truly appreciate everyone's concern for how things are going with us and the well being of our family.  I can't wait to be able to share our experiences with Preston in person with everyone and not through a blog, but in the mean time, Thanks again for the love and support.

So.....before you all start to worry about me too much with all of this seriousness.....

Now that I will no longer be breast feeding/pumping, I have one last thing to say.    Good bye "Double D's"  it's time to make way for the "tube sock twins".


Friday, August 3, 2012

6 months old and 15lbs 14oz!

I know everyone would love an update on progress this far, and this post is really overdue. We are adjusting to our lifestyle at home with Preston and are happy to say we have a "routine". After all a routine means we've been home long enough to enjoy or little man and watch him grow like a normal baby. Preston has been successfully growing. Since he loses all of his protein, one of the primary concerns is that he potentially wouldn't thrive and gain weight at a rate that is needed. I'm glad to say that it appears that he will meet his 10 kilo goal (22lbs) in November if he continues to grow at the same rate that he has been and by his percentile growth chart. So he's doing awesome and has chunky butt dimples in his legs and he looks and acts like a happy baby! 

We have several follow up appointments with all of the specialists including Neuro surgery, neurology ophthalmology, nephrology, hematology, endocrinology, and our local pediatrician. This last month we have traveled to Stanford once and UC Davis 3 times. We've transferred services to Stanford for Nephrology and for the upcoming transplant, but we continue to see the Neuro Surgeon at UC Davis for the time being.  We will likely transfer services just before the transplant so we will be seeing all of the specialists at LPCH eventually, but for now we're comfortable with Dr. Lee, Preston's Neuro Surgeon.Being split between two different hospitals however isn't always easy.  Tyler and I find that we're doing the communicating between the doctors, constantly getting copies of labs, scans, etc and sending them back and forth.  Ultimately it will be much easier to be in one place.

Developmentally, Preston is also doing awesome.  He's vocal and cooing like crazy, sitting up but still needing some support. He's reaching for toys and can hold and play with toys.  We do notice he is a bit sluggish on his right side due to the bleed in his brain from when he was born, but he can still move it and grab things he just prefers to use his left hand.  This kid has no lack of stimulation that's for certain.  We're blessed that one of us can always be home with him, since we're kind of forced to with his immunity conditions. We play with him and keep him busy (or rather he keeps us busy) all day long.  On the day's that he has his infusions, my sister or grandma come over to help. Thank goodness for nurses in the family and it's not a one person job.  Their help also affords me some time to work a little bit during the day when they're here.

Preston is eating like a champ and the nephrologist says that we can start him on cereals now that he's 6mo and has grown so well.  He still is getting his formula super fortified with extra calories and protein since he pees it all out so we have to supplement him in hopes that he will at lease absorb a bit of it.  So now that he's starting of food, guess what??  He has new teeth to try out!  Yep he's had little teeth nubs since he was 3 months old and one finally broke through yesterday and another one today. Tyler says he'll be eating deer meat before we know it.....we'll see about that.

Aside from the new normal, we're also looking forward to what's next.  It's scarey for me to think of the next steps.  We've just gotten comfortable with what we've got going on now.  In October, we have a transplant evaluation appointment.  At that time, we will do some preliminary testing on all three of us.  Tyler and I will be tested to be potential kidney donors, and Preston will have test too to compare with our labs.  I understand from the transplant team that they will really be putting us through the ringer to make sure that we are physically, mentally, emotionally, spiritually, etc. etc. ready to be a donor.  I guess we will end up seeing about 6-10 different services throughout the evaluation.  I'm sure it will be a long and emotional trial, but of course Tyler and I are willing to do anything to give Preston the opportunity to have a "normal" life.

So then next everyone will an adult kidney fit into a baby?  I don't really know the answer other than the doctor states that they actually will NOT take a transplant kidney from anyone under the age of 18. With them removing both of Preston's kidneys and only getting one in return, they assure us there is enough room.  Apparently a kidney is about the size of a small fist, which still seems so big to me.  I guess this is why the babies must be 10 kilos to be able to be transplanted.

Tyler and I have done a lot of internet research.  It puts our minds at ease of what's to come, and scares the crap out of us all at the same time.  We've stumbled across a blog of a family that currently lives in Texas that has twins.  Both of the babies have congenital nephrotic syndrome, aside from other complications.  I can't even imagine.  They are amazing superstar parents in my eyes!  I know what Tyler and I have going on daily, but multiply that by two?!?  Superstars......

So what's next in our journey?  The next big thing will probably be later this year, but we don't know exactly when.  Nephrectomy.  Uuuugggg....  Both kidneys are coming out and P-man will have to go on dialysis.  He will hopefully only need to be on dialysis for a short time and just to rid his bodies of the nephrosis that could harm his new kidney.  They tell us that he could be in the hospital up to a month but possibly only a few weeks.  Sounds like at least 2 weeks will be in the hospital dialing in the dialysis and teaching us the new routine of how to do a daily dialysis treatment.  We will be able to come home before the next big step (transplant).  There are a lot of unknowns for us at this point and we will defiantly be learning as we go.

Again, I want to say a BIG HUGE THANK YOU to everyone that has helped us along the way.  Every bit is so appreciated. The prayers, the meals, The help with work, the help at home by family members, the cards and to all of our friends that have rallied and raised money for our expenses.  You're all amazing, and the three of us are so glad that we don't have to go this journey alone.