When you have a baby in the Nicu...there is really only so much you can do for them. In my case, there were 2 things....A. love on him every chance I got and B. Becoming a pumping machine so he can have breast milk. I was/am fortunate enough to be able to have a good milk supply, so for 2 months now, I have been, as Gabe says, running a milk factory. Every 4 hours I stop what I doing and pump....and pump...and pump. Ok,ok ...most of the time I stop what I'm doing. Sometimes I sleep right through my pumping, and sometimes I'm a little busy and can't get to it. And trust me, you don't want to miss a pumping session. The out come of missing is pretty painful and not worth it. I have suffered my fair share of mastitis because of missing.... NOT FUN!! Pumping milk is a pretty tough job. And I one hundred 100% believe that it is worth as much as gold... therefore I believe it is "liquid gold". Because Brody was in and out of surgeries, had a feeding tube in his mouth for so long, and was having trouble keeping his food in, they were not giving him very much to eat. Therefore I am WAY WAY WAY ahead of him on milk. My milk storage has resulted to sending about 130 3-6ox bags to San Antonio for storage and I have about 90 bags here, not to mention what the hospital was storing for me.... either way... its A LOT!!! And if pumping wasn't such a chore, I wouldn't cry over spilled milk.. but THIS DAY I DID... Here's the story...
Friday was our first outing as a family, and it was to a doctors appointment....a very early doctor's apt, and it was nothing short of a DISASTER.
Because the cute little mr decided it was play time at 330 am that morning, for 2 hours, I, A. Didn't get much sleep (again) and B. Slept through my alarm. So of course we were running late....a very common thing in this house, something which I'm trying to break, and something that I know is weird because Gabe is in the military. Anyway...back to the story. As I finally got everything ready - which is A LOT. 5 bags to be exact, I realized that it was his feeding time and my pumping time. Which was easy enough (or so i thought) since he is on a feeding pump. I would just set up the pump and he would get his food while we drove there. So, I hook the pump up to his little tummy, and get the food going. I cover him with a blanket, buckle him in his seat, and have Gabe take him to the car. 10 min later as I am on the phone trying to get an address for this Dr office, Gabe yells for my help. I go over and he says that I didn't hook up the connections right and milk has been pouring out all over Brody for the past 10 min... OH SHHHH.... We run back in side, grab new clothes to put on him, and I defrost more milk to feed him... after about 15 min of "redressing" and "refeeding"... we are now officially LATE!!! Spilled milk # 2. I forgot to mention that at 12am that morning, I ran into our bedroom with Brodys milk bag, and spilled it all over our bed... YES.. at 12am... that was the start of a very long day....
We finally make it to the Dr office exactly an hour late, and get things going.... Did I mention that we have to take 5 bags with us?? A bag with his feeding pump, a bag with his suction machine, a bag with emergency supplies, a diaper bag, and my purse. I decided to consolidate as much as I could last min before leaving, and that was a bad idea. I threw diapers, wipes, and pacis in his er bag, to help with the bag load. As we start getting Brody undressed to be weighed... the little stinker has a MAJOR blow out of his diaper... Im talking BIG... of course it goes all over his clothes, and socks, and since I consolidated, I have NO change of clothes for him, or little stinker would remain naked for the remainder of the apt.....so I hand Gabe the box of wipes and a diaper, and he gives me the clothes to start rinsing off... 1 min later, I get the wipe box handed back to me BECAUSE ITS EMPTY.... I forgot to put wipes in in.... OOOOHHHH SSSHHHHH.... by this time the nurse is probable thinking we are a bunch of idiots and our 2 month old is probably smarter than us.... LORD HELP ME...
The Dr and her team of specialist come in (all female) and start the apt. Since they are all female, I feel comfortable enough to do my pumping in there while they are talking. I start putting my stuff together, and realize that I forgot one of the parts to the pump. WHAT THE H!!! Now what? My boobs are throbbing and Im on the verge of jumping off my ledge!! Half way through the apt, I realize that I can pump one side at a time... I AM BRAIN DEAD AT THIS POINT... so I start pumping. 40 min later, 20 min on each side, Im done... RELIEVED... free for another 4 hours..... I put the bottles of milk down, and start getting our things together. Stand up, and BAMM... knock over the bottles of milk... all over the floor...all 6 oz... a big puddle of precious white liquid on the floor... WHAT IS GOING ON WITH ME.... and of course I turn to Gabe and he is giggling like a little school boy. I now have one foot off my ledge... Spilled milk #3 for the day.
Finally, we make it back home. I put B down for a nap, and I lay down with him, but my mind is racing with all the chores I have to do, that I can't sleep. Finally our nurse arrives for her shift (30 min late) and I can run upstairs to pump and lay down. 20 min of pumping and thinking, and trying not to fall asleep, and I am finally done. I can lay down for a quick hour before I have to run errands. I get dressed and BAMMM spill the milk all over the bed AGAIN.... quickly pick it up and place it on the bathroom counter, go to grab a towel and BAMMM knock the bottle off the counter and spill the rest of my precious 6 oz.... Spilled milk #4 and 5 in a matter of minutes....and at this point... IM CRYING OVER SPILLED MILK...
So whoever came up with the phrase "Don't cry over spilled milk" has obviously never has a day like mine....and if you are a pumping mom, and have a day like this... YOU ARE ALLOWED TO CRY... Its MY MILK AND I"LL CRY IF I WANT TOO!!!
http://www.gofundme.com/58c7p4
Monday, November 18, 2013
Thursday, November 14, 2013
Dont say the H word....
The phrase "we are going home" is not something you say until you are in the car driving home....and today 11.12.13, we finally got to say those words. Something I've waited for, for 11 months. I said that to Gabe earlier and he was confused about the 11 months.... ummmm hello...9 months of being pregnant and 2 in the hospital.... gggeezzzz that guy sometimes.... he keeps me.on my toes...
Any who..... we made it home... the 1st of many mile stones. Not to mention, we just closed on our house 4 days ago, moved in over the weekend, and are still in the process of moving in....its been a busy 5 days...But I wouldn't have it any other way.... Brody is home, thats all that matters..... our pfamily life begins now....
OK fast forward to WED 11.13.13... its 11:54 pm and I am finally done for the day. Well almost. I have 9 min left of pumping breast milk. WHAT A FREAKIN DAY.... thats all I can say. Did you ever watch that tv show on mtv "The Real World" ? And they used to say "You think you know, but you have no idea"....well thats what I feel like. Ill be real honest. For 2 months now, I haven't really felt like a real mom. I didn't get to experience what most new moms do. The late night crying, no sleep, up all night trying to feed and keep food down. I got none of that. My days have consisted of sitting in a chair holding my baby, pumping breast milk (saving this topic for another day), learning HOW to take care of my child, and sleep... lots of it...whenever I could....whenever I wanted....thats it. I left the rest up to the nurses. The wonderful wonderful nurses and doctors. BUT LAST NIGHT WAS A DIFFERENT STORY..it was my time to shine.
Because Brody has a trach, I have NEVER heard him cry... nothin, not one peep....its a sound that I have longed for since I found out I was pregnant. The only way I know if he is in distress is by the "gunky" "mucus" sound coming out of his trach. So most of my sleep was really me lying there wondering if I just couldn't hear the gunk and hoping he was ok. I thought I knew about sleepless nights, but I had no idea until last night....
I will be back to finish this blog tomorrow.... MUSt.GET.SLEEP.
http://www.gofundme.com/58c7p4
OK fast forward to WED 11.13.13... its 11:54 pm and I am finally done for the day. Well almost. I have 9 min left of pumping breast milk. WHAT A FREAKIN DAY.... thats all I can say. Did you ever watch that tv show on mtv "The Real World" ? And they used to say "You think you know, but you have no idea"....well thats what I feel like. Ill be real honest. For 2 months now, I haven't really felt like a real mom. I didn't get to experience what most new moms do. The late night crying, no sleep, up all night trying to feed and keep food down. I got none of that. My days have consisted of sitting in a chair holding my baby, pumping breast milk (saving this topic for another day), learning HOW to take care of my child, and sleep... lots of it...whenever I could....whenever I wanted....thats it. I left the rest up to the nurses. The wonderful wonderful nurses and doctors. BUT LAST NIGHT WAS A DIFFERENT STORY..it was my time to shine.
Because Brody has a trach, I have NEVER heard him cry... nothin, not one peep....its a sound that I have longed for since I found out I was pregnant. The only way I know if he is in distress is by the "gunky" "mucus" sound coming out of his trach. So most of my sleep was really me lying there wondering if I just couldn't hear the gunk and hoping he was ok. I thought I knew about sleepless nights, but I had no idea until last night....
I will be back to finish this blog tomorrow.... MUSt.GET.SLEEP.
http://www.gofundme.com/58c7p4
Tuesday, November 12, 2013
The end of the week but beginning of a future
Happy Friday everyone. Welcome to our PFamily blog - "A Pfighting Pfamily". You are probably wondering why I am putting an "P" in front of my "F" words, and I shall get to that in a moment. But first and foremost lets get something straight...this blog is a place for updates, prayers, support, and unconditional love. I will share our pfamily adventure in our pfight for our son Brody - currently 2 months old. So follow us and share our ups and downs, happiness and sorrow, milestones and triumphs, but most importantly PRAY and BELIEVE with us.
Here's is the story of how and why our PFIGHT started......
Ok...wait...
Fast forward to now Tuesday 11-12-13....I had the whole story of my pregnancy and delivery written out, but as I sat in Brodys disaster of a room at 530am pumping, I decided that this first blog needed to be finished TODAY. So I erased all of it.... and I'll tell you why.
You see 2 months and 3 days ago, our son Brody was born with a very, very,very rare syndrome called Pfeiffer syndrome. He has the second stage of it called Type 2. He also has one more difficult aspect of it called a "trachea sleeve", which is SO rare, there are only 12, I repeat 12, documented cases in the world. To this day...my son is number 13 in the world. Pfeiffer syndrome is already a difficult syndrome, but throw the trachea sleeve in the mix and you now have a life limiting - as in most haven't made it past infancy syndrome. The road so far has been filled with 2 surgeries, many test,mri's,ct scans and God only knows what else. BUT the one thing that hasn't happened is us losing our Faith. We know that we were given this opportunity to learn, grow, and love by God and we are trying and will try everything in our power to do it, and give Brody the best life possible. Whether its 3 months, 4 years, or 35 years, this challenge is ours as a family and we will PFIGHT it. With all our heart and soul, we as a PFAMILY will make it.
Brody has been a resident in the NICU at Dell Childrens Hospital since day 4 of life, (something I will save for another blog) and since he can't breath through his nose, he has a trach that he breaths through. ..also known as an artificial nose. He also had a feeding tube - called a gtube placed in his stomach so he can eat. How long he will have to have these devices, no one knows, but its the only way of life he knows, so thats what we know...2 other aspects of Pfeiffer that Brody has, is a clover leaf" shaped skull and a receded or pushed back mid face, which will also be saved for and explained in another blog. That's our Brody...our world, our life, and our pfight. The beginning of a whole new chapter in our lives.
So.... the reason I deleted the first draft of my blog is because in the past 2 months, if there is any thing that I have learned, its this.... Don't look back on the past, you can't do a single thing to change it, don't look ahead at the future because you will never know or control how much time you have, BUT LIVE AND ENJOY EVERY SINGLE SECOND OF YOUR PRESENT.....MAKE MEMORIES....SMILE....AND LOVE FIERCELY.....and that my friends is exactly what we plan on doing. You didn't need to know about my pregnancy or my delivery....this blog is about our present....and the journey we are on as a pfamily....
So, as I sit here in Brodys disaster of a room, trying to set it up for his anticipated arrival, I say to you, Thank you for following along with us and watching us grow, love, and Pfight for Brody..... it's bound to be an adventure. And please keep us in your prayers. That is all we can ask from you.
http://www.gofundme.com/58c7p4
Love,
Steph
P.S. please excuse any and all spelling and grammatical errors...since we just moved our internet and computer are not set up yet, so I am writing this on my phone. And I promise as soon as I get set up, you will get a blog full of pictures.
Here's is the story of how and why our PFIGHT started......
Ok...wait...
Fast forward to now Tuesday 11-12-13....I had the whole story of my pregnancy and delivery written out, but as I sat in Brodys disaster of a room at 530am pumping, I decided that this first blog needed to be finished TODAY. So I erased all of it.... and I'll tell you why.
You see 2 months and 3 days ago, our son Brody was born with a very, very,very rare syndrome called Pfeiffer syndrome. He has the second stage of it called Type 2. He also has one more difficult aspect of it called a "trachea sleeve", which is SO rare, there are only 12, I repeat 12, documented cases in the world. To this day...my son is number 13 in the world. Pfeiffer syndrome is already a difficult syndrome, but throw the trachea sleeve in the mix and you now have a life limiting - as in most haven't made it past infancy syndrome. The road so far has been filled with 2 surgeries, many test,mri's,ct scans and God only knows what else. BUT the one thing that hasn't happened is us losing our Faith. We know that we were given this opportunity to learn, grow, and love by God and we are trying and will try everything in our power to do it, and give Brody the best life possible. Whether its 3 months, 4 years, or 35 years, this challenge is ours as a family and we will PFIGHT it. With all our heart and soul, we as a PFAMILY will make it.
Brody has been a resident in the NICU at Dell Childrens Hospital since day 4 of life, (something I will save for another blog) and since he can't breath through his nose, he has a trach that he breaths through. ..also known as an artificial nose. He also had a feeding tube - called a gtube placed in his stomach so he can eat. How long he will have to have these devices, no one knows, but its the only way of life he knows, so thats what we know...2 other aspects of Pfeiffer that Brody has, is a clover leaf" shaped skull and a receded or pushed back mid face, which will also be saved for and explained in another blog. That's our Brody...our world, our life, and our pfight. The beginning of a whole new chapter in our lives.
So.... the reason I deleted the first draft of my blog is because in the past 2 months, if there is any thing that I have learned, its this.... Don't look back on the past, you can't do a single thing to change it, don't look ahead at the future because you will never know or control how much time you have, BUT LIVE AND ENJOY EVERY SINGLE SECOND OF YOUR PRESENT.....MAKE MEMORIES....SMILE....AND LOVE FIERCELY.....and that my friends is exactly what we plan on doing. You didn't need to know about my pregnancy or my delivery....this blog is about our present....and the journey we are on as a pfamily....
So, as I sit here in Brodys disaster of a room, trying to set it up for his anticipated arrival, I say to you, Thank you for following along with us and watching us grow, love, and Pfight for Brody..... it's bound to be an adventure. And please keep us in your prayers. That is all we can ask from you.
http://www.gofundme.com/58c7p4
Love,
Steph
P.S. please excuse any and all spelling and grammatical errors...since we just moved our internet and computer are not set up yet, so I am writing this on my phone. And I promise as soon as I get set up, you will get a blog full of pictures.
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