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 pumping....man 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".

Vici

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 asks......how 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.

An airplane ride and 5 days in the hospital for bronchitis??

So, I know it sounds silly and everyone has been asking what's up with Preston and what led to his hospitalization this last week. When I tell them he had bronchitis I see this look and a raised eyebrow nearly in disbelief. It's even hard for me to believe how something that is a "routine illness" that so many people can do easily overcome, could possibly be so devastating to cause nearly a weeks long stay in the hospital. It was a combination of the bronchitis and the congenital nephrotic syndrome that was the problem.

As I mentioned previously, CNS is when your kidneys have porous gaps that allow the spilling of all of the protein in the body. Virtually no protein remains in Preston's body and he literally pees it all out. Included in the protein are antibodies that would help to fight off sicknesses and gain immunities to bacteria. This is one reason that Preston is so at risk for infection and illness. In addition, Preston is also on a medication that suppresses his immune system further. This specific drug is given to transplant patients to help the body avoid rejection if the new organ. While Preston has not yet had a transplant, the drug is being used in combination with some other drugs int he attempt to to reduce his kidney function so that he will hopefully lose less protein. We learned this is called a "medical nephrectomy".

So because he has CNS and has a SUPER compromised immune system, he got some kind of cootie that caused the bronchitis. He was really congested over the memorial day weekend so we kept an eye on him through the weekend.

On top of the congestion, weekends are Preston's "days off" from his IV infusion of albumin (a protein blood derivative) and generally over the weekend he gets a little swollen with excess fluid that his body can't shed on his own and so it was a combination of the bronchitis and retained fluid that then led him to....respiratory distress....dammit.

Tuesday morning we could tell he was overall just generally uncomfortable and struggling to breath. So to the doc we went. Our Ped was still out for the holiday weekend but the Dr on call had some general knowledge of CNS to know that it's not something that could be treated locally in Red Bluff because things could go from bad to worse real fast. He ordered up an x ray to rule out pneumonia but still recommended a transfer to Stanford where Preston's nephrologist is located so he could be monitored.

Of course they wouldn't let me fly with him so Tyler and I drove down to Palo Alto with an empty coarsest in the back seat. It was a LONG ride down. Preston had beat us there and his flight was only about 2 hours and we were walking down the hall and could hear our baby screaming. We followed the cry to his room to find one starving kiddo. Struggling to breath and with all of his congestion, he hadn't been eating well so it was music to my ears to hear the hungry cry.

While we were there he was tested for all kinds of infections and blood work ups and tab swabs. All if which were mostly inconclusive so it was determined to likely be a virus. I never thought I'd be happy to hear it was just a virus. Dreading an infection, we were told that Preston will only have 2 or maybe 3 strikes (illness). If he has multiple strikes against him, he will need a nephrectomy and will have to go on peritoneal dialysis. With one strike already against P when he had sepsis, I was in fear that this would be the final straw, and that we would be back in the hospital another month for the kidney removal.

Luckily we escaped and the doc said that he'll let it slide because it's normal kid stuff and not a more serious infection. After three days in a row of his infusions, Preston was back to baseline (in that he wasn't super swollen with excess fluid) so he was able to breath better and the cough and crud was finally dissipating.

So after 5 days were home again. While down there we certainly got a taste of reality of what it will be like when the time comes for him to have the surgery to go on dialysis and then again for the transplant. We learned just how serious this is, not that we didn't already know. We saw many transplant patients at the hospital and they have to wear masks and respirators to prevent them from breathing in germs that would cause illness and rejection. If I didn't think I was a germ freak already, now I know I'll be an even bigger germaphobe.

I've never seen so many BEAUTIFUL children as I saw this last week. It was obvious many were undergoing cancer treatments and probably other treatments that I cannot even fathom. It was like watching a St. Judes children's hospital commercial and feeling the reality and the seriousness of having a sick child and then realizing...my baby is one of those sick kids.

So while I'm happy and VERY THANKFUL to be home, I'm also very thankful to have had such an awesome facility and some great Doctors at out service. I felt like if we had to be there, it was a good practice round to get our toe in the water and feel out how life will be at that hospital for when the time comes for the next step. I'm just hoping that next step is when he's 22 lbs and over 1 year old, which is the target that he must reach to receive the transplant.

We had a fabulous time documenting Preston's homecoming with We Shoot Ya Photography.  Thanks Danny and Dianne for everything! You do amazing work and are two of the most fun, kind and talented people I know! You're a true asset to this little town.  Thank you!

Here is the link for our pictures:

Preston Miranda Proof Set

Preston Miranda Slideshow

Our new found routine

There wasn't a single day that Preston was hospitalized that we didn't spend 12 or more hours a day at his bedside. Our typical routine started at 7am we would break for lunch and then come back and stay until 10-11ish nightly. So as you can see we pretty much took up residency at the bedside. We would take shifts and one of us would spend a few hours back at the Ronald McDonald house to work and catch up on phone calls. We had a full office setup back at "camp" so that we could try to work and have some sense of normality to our lives. Thank goodness we are both in real estate and have so much flexibility in our careers. We couldn't have done it though without the HUGE support and understanding of Ken and Melina, Stephanie (I still owe you some cocktails and a lot of them!!!), Max, Jen, and Joseph. If I didn't feel it before, I certainly do now feel like you all are a true extension of my family!

Tyler and I have always been a little on the workaholic side. We knew once Preston arrived it would be different, but not to this extent! We thought that we would be able to have him at work a day or two a week while he was tiny and throw him on the Moby wrap and wear him while at the office....I guess you just can make plans too far in advanced!

Boy has life changed! We're now not only working full time in real estate and Property Management, one of us is always at home with Preston due to his immunity so we're stay at home mom/dad trading off work days, and on top of that we feel like we're full time care providers having to do more than a "normal parent" would do. I know there are two of us but feeling like we now have three full time positions is really tricky.  Thank goodness for everyone that has helped us tremendously with the cooking, cleaning, housework and for our business too.

Managing daily medicines in itself is quite a job with 16 different doses throughout the day of oral medications, shots a few days a week, IV infusions 3 days a week. The phone calls ........holy smokes...... 4 different pharmacies for medications and supplies, nurse case managers for insurance companies, the home health nursing agency, and several doctors to report to throughout the week. If I didn't feel like I was going crazy before, I sure do now!

I just thought I would kind of share a little bit of our new found home/work life so that everyone knows what our new routine entails.  I promise this blog will soon be less about us and more about Preston.  I just thought this would help to answer everyone's question of "How are you doing?" aside from my normal response of "things are going okay".

A LONG Overdue Thank You

Being in the hospital for as long as we were, we really didn't get the proper opportunity to thank the staff at UC Davis for their kindness since we were SOOOO anxious to go home. For several days before going home we knew it was likely that we may get to come home, but we didn't want to jinx ourselves by saying our goodbyes too soon....after all they scheduled our discharge date for a Friday the 13th. When we finally were discharged we were so hot to be out of there, looking back I wish that we would have taken the time to appreciate one final time all of those that helped Preston along the way. I hope to now express my thanks publicly so that they all know how much we really care.

First- our primary nurse and long time Red Bluff friend, Tracy. It was YOU that made us feel like we were not in a foreign land. Your compassion for Preston and willingness to be his primary nurse was awesome! We looked forward to the nights that we knew you would be on and knew that we could sleep easy while he was in your care! You went above and beyond in helping us schedule Preston's medications so that we weren't lost when we got home and that was such a huge, huge help since his daily schedule is almost a full time job in itself!

A few other members of the nursing staff that I'd like to thank and I'm sorry if I missed you I wish I would have written down the names if each and every one of you. I will however always remember the faces of everyone!
Marin- Thanks for always having a smile and being so kind. I always looked forward to seeing you and for doing Preston's hearing screening (a half dozen times, lol).  I'll always remember you, after all I wanted Preston's name to be Marin!

Lori- Thanks for being Preston's daytime primary nurse, and thank you so much for teaching us the ins and outs of giving the infusion.  Your teaching helped us feel more comfortable when we got home

Carrie- Thanks for your knowledge and expertise!  Many times you were the go to for the tough questions and we appreciate your support.

Jim- You were with us during some of the TOUGHEST days and you saw a side of me and my emotions that not even many of  my closest friend have ever seen.   You're an awesome nurse and glad that you were with Preston one-on-one.  It's clear you love your job and your great at it.  P.S.....I have a sister that's a nurse and she's single.....I'm not sure she'll be thrilled with me posting that, but what the hell I just thought I'd throw it out there.

Angie-  Thanks for being an excellent IV starter.  I always dreaded IV starts because I knew they would be tough, but you  nailed them every time. I also love your bedside tidyness!

Jill- so easy to remember, you share my sisters name. Always compassionate

Ebony- Thanks for landing the PICC line.  After four previous attempts by others you were finally able to nail it so that he would have less IV pokes!

Katerina- Thanks for being patient with all of our 500 questions and always finding the answers to them.

Sharon- Thanks for always bringing a smile in the room and thanks for the pictures too.  ps...I love your son's name :o)

Christian- Thanks for helping to lighten the mood.  Even if you were just breaking someone for a few minutes we knew you would always give us a chuckle about something.

Krista- Thanks for always making me feel better.  I don't think I'd be able to burp or swaddle a baby without your guidance. I loved hearing about all of your culinary delights too.

Val- You're an awesome lady!  I'm thinking an honorary Grandma :o)  I hope I see you again!!!

I know there are soooo many others on the nursing staff, and if I forgot you it's not because your work went unnoticed, it's simply due to my lack of sleep and energy during those 3 months.  I tried to write down names, but failed to catch many!  So if I didn't name you specifically, THANK YOU!!!

Ward Clerks- I'm not sure what that department would do without you!  Mike, thanks for being so kind in showing us the ropes of the NICU at 2am on the first night that we arrived.  Ramey, you run circles around that place and it's apparent that everyone knows they can count on you for EVERYTHING! Anita, you are one sweet lady! 

The Attending Doctors, Residents and Fellows, there are so many of you but thank you for being so patient with us through all of our questions and again the second time we asked those same questions. We know you aren't used to having needy parents at the bedside for 12 hours a day, and we appreciate that you have not only cared for our son in treating his symptoms, helping to determine a diagnosis as well as educating us on what Preston's needs are and will be in the near and distant future. THANK YOU!

Just pictures

I have tons of requests for pictures. Enough of the medical garbage for now, here are some of my faves. Our one and only outing so far (aside from doctors offices) was to Weshoot ya's studio to see Danny and Dianne. I hope to post a link to their photos as soon as its up :)