Well, I've been writing out a menu for the week for about a month now. It's kept me in line and has helped a bunch with grocery shopping since I go in with a definite list rather than "easy dinners" to check off. So to make me even more accountable to keep up with my menu, I'm posting it on here now. Plus, I like seeing what others are having for dinner and after seeing Steph's menus for the past few weeks...I just want to do mine too. :) So here's what we are having at our house if you drop by:
Sunday: O'charley's restaurant with my parents. :)
Monday: one of my creation casseroles of brown rice, broccoli florets, one can cream of broccoli soup, one can cream of cheddar soup, leftover baked chicken (shredded - I just don't like cubed hunks of meat), onion to your liking, garlic powder to your liking, shredded cheese to stir in and use as a topper (I used velveeta...which is crap to shred, but I do it anyway), French's fried onions to top too. Yeast rolls to go with.
Tuesday: Cheese ravioli and salad.
Wednesday: Pot Roast, sauted mixed veggies with balsamic reduction *yum*, and garlic mashed potatoes.
Thrusday: Hamburger helper (cheddar bacon melt) (I need one pre-packaged meal a week!), green and wax beans.
Friday: shrimp, glazed carrots, white cheddar macaroni
Saturday: leftovers
What are you having?
Monday, March 23, 2009
Saturday, March 21, 2009
Special delivery
*OK, so click on the pics to see the full pics, my computers all types of funky today!!*
Two exciting mail adventures in 24 hours. First, the arrival of my pre-ordered Twilight before it was even available in stores...woohoo! Happy surprise! And then, this morning, the arrival of a thank you note. About two weeks ago, I sent a thank you note to Dr Gomez, my Maternal Fetal high risk specialist. It commemorated our anniversary of the first fetal surgery for Matthew. It was at that meeting that I told him to do everything he could do for my son. God would decide if he lived or not, but I wasn't going to make that an easy decision for Him! I loved Dr Gomez, more than any of the other doctors I saw at the practice...and whenever possible we would make sure we were all teamed up together for the procedures that followed the four surgeries he did.
Here is a picture of me with my earthly miracle worker...yes, I'm short...but he really is THAT tall!
In my note to him, I simply said thank you for doing all you could do for me and Matthew and enclosed an updated picture since he hadn't seen Matthew since around Christmas time when we dropped in. They really are a family to me there and I keep in contact via phone and email to many of the people there. It's not often that your doctor actually gives you his personal cell phone number too!
I had been expecting an email from one of the girls or something that they got my letter and "oh how cute Matthew is"...cause secretly (not so secretly) that's what all mom's want to hear. ;) But I know where near expected a letter...let alone from a busy doctor. When we have talked it's always been a quick catch up of Matthew's progress and then he's off to help another mommy to be out. Some of the girls have told me that there is now an unusually high number of PUV babies from all over the state. 6 cases since we have been "discharged" from care. I knew of one of those. Doctor Gomez, with my permission, has given my contact info to those women that wanted to talk about the diagnosis, but I didn't know there were so many more! And I didn't know my small part in there care.
Dr. Gomez told me in his letter that it should be him thanking me. For me pushing him to not give up the fight. Telling him that I am having a baby, a tiny person with a soul that is already loved before he arrives. He said I inspired him when I kept "raising the bar" in patient/doctor relations. He came to realize that his cases were people/families...not numbers and statistics. He already had my permission to write up about all the surgeries (4 in total) and procedures (23 total taps and infusions), but decided against it in order to advocate about patient rights and treatment. Because of our history and relationship, he has been able to save 5 out of the 6 PUV baby cases that have come to him. He took it on as a personal mission of his own to keep the mothers motivated with things got rough and to push for lung development with infusions and steroids.
None of their cases were as severe as Matthew's...and in all respect to "science" Matthew shouldn't be here, but he is. Because of this man that did everything I asked him to do. All this time, when anyone asks about Matthew I naturally give thanks to God, but never fail to mention Dr Gomez as well. It seems he's be doing the same thing. In his words, "without your fighting spirit, infectious laughter and the complete love you had for Matthew, I would have given up on you both. You didn't let me." This is the man that opened his office hours to us at 6am for an infusion when normal hours began at 8:30am, but he wouldn't be in that day and wanted to make sure things were done right! He has used "what I learned from our experience" to fight for those other babies...because of Matthew...those little ones have made it through the hardest part, being born alive.
It just really touched me that Dr Gomez took the time to sit down and hand write a letter, not email...not type it up...handwritten. It shocks me that he thinks so highly of me when I look back and see that I did nothing spectacular...I just fought for my son's chance...what parent doesn't? But it made me realize that maybe I did do something...I crossed the patient/doctor line. I made him get to know me as a person, not a patient. I made him care about Matthew. I shared his name, my feelings and thoughts with him. I told him Matthew's music preference and when we were done with an infusion, Dr Gomez would put on the Rolling Stones just to watch Matthew dance in utero! He visited my child at another hospital to say a prayer for him while he was in the NICU. But with all of that, I was just being me.
So once again i want to give a shout out to Dr Gomez and thank God for bringing him in our lives. It takes quite a man to throw credit to a hormonally challenged woman and it speaks that much higher if that man is a nationally published and recognized doctor in fetal surgery. I don't think I deserve his kind words and praise, but those other babies did deserve the right to life. And I'm so thankful he was their doctor too.
Matthew, one week old, 32 weeks gestation. First day starting peritoneal dialysis.
Matthew, 8 months old (6 month corrected)
Two exciting mail adventures in 24 hours. First, the arrival of my pre-ordered Twilight before it was even available in stores...woohoo! Happy surprise! And then, this morning, the arrival of a thank you note. About two weeks ago, I sent a thank you note to Dr Gomez, my Maternal Fetal high risk specialist. It commemorated our anniversary of the first fetal surgery for Matthew. It was at that meeting that I told him to do everything he could do for my son. God would decide if he lived or not, but I wasn't going to make that an easy decision for Him! I loved Dr Gomez, more than any of the other doctors I saw at the practice...and whenever possible we would make sure we were all teamed up together for the procedures that followed the four surgeries he did.
Here is a picture of me with my earthly miracle worker...yes, I'm short...but he really is THAT tall!
In my note to him, I simply said thank you for doing all you could do for me and Matthew and enclosed an updated picture since he hadn't seen Matthew since around Christmas time when we dropped in. They really are a family to me there and I keep in contact via phone and email to many of the people there. It's not often that your doctor actually gives you his personal cell phone number too!
I had been expecting an email from one of the girls or something that they got my letter and "oh how cute Matthew is"...cause secretly (not so secretly) that's what all mom's want to hear. ;) But I know where near expected a letter...let alone from a busy doctor. When we have talked it's always been a quick catch up of Matthew's progress and then he's off to help another mommy to be out. Some of the girls have told me that there is now an unusually high number of PUV babies from all over the state. 6 cases since we have been "discharged" from care. I knew of one of those. Doctor Gomez, with my permission, has given my contact info to those women that wanted to talk about the diagnosis, but I didn't know there were so many more! And I didn't know my small part in there care.
Dr. Gomez told me in his letter that it should be him thanking me. For me pushing him to not give up the fight. Telling him that I am having a baby, a tiny person with a soul that is already loved before he arrives. He said I inspired him when I kept "raising the bar" in patient/doctor relations. He came to realize that his cases were people/families...not numbers and statistics. He already had my permission to write up about all the surgeries (4 in total) and procedures (23 total taps and infusions), but decided against it in order to advocate about patient rights and treatment. Because of our history and relationship, he has been able to save 5 out of the 6 PUV baby cases that have come to him. He took it on as a personal mission of his own to keep the mothers motivated with things got rough and to push for lung development with infusions and steroids.
None of their cases were as severe as Matthew's...and in all respect to "science" Matthew shouldn't be here, but he is. Because of this man that did everything I asked him to do. All this time, when anyone asks about Matthew I naturally give thanks to God, but never fail to mention Dr Gomez as well. It seems he's be doing the same thing. In his words, "without your fighting spirit, infectious laughter and the complete love you had for Matthew, I would have given up on you both. You didn't let me." This is the man that opened his office hours to us at 6am for an infusion when normal hours began at 8:30am, but he wouldn't be in that day and wanted to make sure things were done right! He has used "what I learned from our experience" to fight for those other babies...because of Matthew...those little ones have made it through the hardest part, being born alive.
It just really touched me that Dr Gomez took the time to sit down and hand write a letter, not email...not type it up...handwritten. It shocks me that he thinks so highly of me when I look back and see that I did nothing spectacular...I just fought for my son's chance...what parent doesn't? But it made me realize that maybe I did do something...I crossed the patient/doctor line. I made him get to know me as a person, not a patient. I made him care about Matthew. I shared his name, my feelings and thoughts with him. I told him Matthew's music preference and when we were done with an infusion, Dr Gomez would put on the Rolling Stones just to watch Matthew dance in utero! He visited my child at another hospital to say a prayer for him while he was in the NICU. But with all of that, I was just being me.
So once again i want to give a shout out to Dr Gomez and thank God for bringing him in our lives. It takes quite a man to throw credit to a hormonally challenged woman and it speaks that much higher if that man is a nationally published and recognized doctor in fetal surgery. I don't think I deserve his kind words and praise, but those other babies did deserve the right to life. And I'm so thankful he was their doctor too.
Matthew, one week old, 32 weeks gestation. First day starting peritoneal dialysis.
Matthew, 8 months old (6 month corrected)
Friday, March 13, 2009
Quick prayer request
I just want to put out a prayer request for the Harden family. A beautiful baby boy named Matthew has been born. He has the face of a cherub and the spirit of a warrior, unfortunately his lungs and kidneys were not as strong. He passed a few hours after his birth on Sunday. Keep his mother, Jenn along with her husband and two older children in your thoughts and prayers.
This little baby boy took a piece of my heart with him as he entered heaven. His puv diagnosis was SO similar to my Matthew's on timeline of finding out. I've been in contact with Jenn for a couple of months and am just deeply saddened for her, but also rejoicing with her that Matthew is at peace and feels nothing but joy and light. I will see her little son every time I look into my son's eyes. "God's gifts" are found now on earth and in heaven.
Please check out her blog and meet little Matthew.
http://themiracleofmatthew.blogspot.com/
This little baby boy took a piece of my heart with him as he entered heaven. His puv diagnosis was SO similar to my Matthew's on timeline of finding out. I've been in contact with Jenn for a couple of months and am just deeply saddened for her, but also rejoicing with her that Matthew is at peace and feels nothing but joy and light. I will see her little son every time I look into my son's eyes. "God's gifts" are found now on earth and in heaven.
Please check out her blog and meet little Matthew.
http://themiracleofmatthew.blogspot.com/
Tuesday, March 10, 2009
In honor of
All of the babies born with PUVs, some that are walking miracles and others that are guardian angels. These little ones' strength and resilience is awe inspiring. No comic books here...they are your true super heros and role models.
I want to introduce you to an amazing family I have been blessed to share this experience of PUVs with: the Campbells. Kristin and Chris Campbell have a beautiful little boy, baby Nels. Baby Nels however had a bigger purpose in life and now is spreading his sunshine and love in Heaven in the arms of his Heavenly Father. Please watch the attached video via the link I post and say a pray for the Campbell family. For peace, compassion and to keep baby Nel's spirit alive and well on Earth. Keep in mind all of the many many little babies that have passed due to this and others suffering due to the complications.
Jeremiah 29:11
http://www.facebook.com/v/1092634268986
I want to introduce you to an amazing family I have been blessed to share this experience of PUVs with: the Campbells. Kristin and Chris Campbell have a beautiful little boy, baby Nels. Baby Nels however had a bigger purpose in life and now is spreading his sunshine and love in Heaven in the arms of his Heavenly Father. Please watch the attached video via the link I post and say a pray for the Campbell family. For peace, compassion and to keep baby Nel's spirit alive and well on Earth. Keep in mind all of the many many little babies that have passed due to this and others suffering due to the complications.
Jeremiah 29:11
http://www.facebook.com/v/1092634268986
Thursday, March 5, 2009
March
Every March, the National Kidney Foundation sponsors National Kidney Awareness Month, an educational outreach program aimed at raising awareness of kidney diseases. According to their education programs, approximately 8 million Americans suffer from reduced kidney function and up to 400,000 require dialysis or transplants to live.
For the rest of the month, many of the various kidney associations will be holding educational events and handing out kidney awareness bracelets. Early kidney disease has no symptoms and since people with diabetes or high blood pressure are particularly vulnerable, anyone suffering from those conditions are encouraged to test themselves often.
Here is a link to Matthew's hospital where he undergoes hemo and will eventually undergo his life changing transplant surgery. http://www.choa.org/default.aspx?id=694
Please, for the month and every month after, keep all of the patients, both children and adults, in your prayers. This is a rough disease that affects the entire family and not just the individual. Pray for the caretakers, doctors, nurses and extended family. Keep your health in check too. Is it time for you to go pee in a cup? Maybe this is the month to do so.
For the rest of the month, many of the various kidney associations will be holding educational events and handing out kidney awareness bracelets. Early kidney disease has no symptoms and since people with diabetes or high blood pressure are particularly vulnerable, anyone suffering from those conditions are encouraged to test themselves often.
Here is a link to Matthew's hospital where he undergoes hemo and will eventually undergo his life changing transplant surgery. http://www.choa.org/default.aspx?id=694
Please, for the month and every month after, keep all of the patients, both children and adults, in your prayers. This is a rough disease that affects the entire family and not just the individual. Pray for the caretakers, doctors, nurses and extended family. Keep your health in check too. Is it time for you to go pee in a cup? Maybe this is the month to do so.
Friday, February 27, 2009
Three years
Three years ago at this exact time, I was getting in the car heading towards the hospital. Nowadays saying that...it's pretty expected, you could say we've changed our mailing address to Egleston Children's Hospital. But this trip, was different...it was the FIRST. Our first son was on his way and what a ride it has been.
William Ryan greeted the world at 9:37pm, 12 hours after my water broke at home, and 8 days after contractions started. A Mardi Gra party at a fellow coastie's house finally got it started. I had been walking the neighborhood, the mall and the grocery store to no avail, but standing and listening to music and big ol' belly laughs is what finally got my labor into full gear. I actually was hoping he would stay in for one more day, making him born in March. Though neither are very "manly" an aquamarine is much better than an amethyst...sigh. Oh well, beggars can't be choosers I guess. I just wanted to meet my little man.
We entered the labor waiting room right around 1:30pm and the fun began. By fun, I mean pain. I don't know why but some stupid part of me wanted to fully "experience" child birth. Yep, I experienced it...I didn't care all that much for the experience. You see, when I'm in pain - I throw up. I started throwing up right we I got up to 6 cm...right at 6pm. Epidural!!! Sweet relief arrived at 6:30pm. At 8pm I kept swearing to my nurse that I was feeling EVERYTHING again and it didn't feel good. I had to go to the potty! She kept informing me that it was too early for a first timer, but she'd get my midwife when she could. Finally at 8:45pm I got another nurse in and she checked me herself. I was READY!
They got me all situated and turned off my epidural, not that it was working anymore anyway!, and got me "into position". I pushed for 40 minutes, which I felt took forever, but was informed that was very good for a first timer. yay! *warning* - TMI coming up about "girlie parts": I was so overzealous in my pushing (contractions are nothing compared to crowning am I right momma's!), but in my mad attempt to get him out...I was torn a new one. My midwife wasn't equipped to stitch me up and had to call on the assistance of a plastic surgeon. So yes, when asked if I've had plastic surgery -yes - where? - wouldn't you like to know. ;)
William was placed in my arms and I started breastfeeding immediately, it just felt natural to me. And then my toes curled in pain and asked for a lactation consultant to help me with latching him properly. He had as much of a gusto for food as he did for life. We took him home March 1st, and our lives have never been the same. In a good way...mostly. ;)
He is the smartest little guy I've ever met, though I'm pretty positive I have mommy bias too. His accomplishments keep stacking up higher and higher from abilities to his personality. His is still a snuggle bug and wants to share cuddles with everyone. He loves to hug and be hugged and wants to meet everyone that passes by him. He is super friendly, extremely funny and down right sensitive. We were watching Toy Story 2 yesterday afternoon after his nap and the part where Jessie (the cowgirl companion to Woody) had her flashback of being a little girl's favorite toy only be discarded as the girl grows up. William rushed up to me, saying we needed to get back to the happy parts, this music made him sad.
William is the light in my eye and the song in my heart. We have SO much fun together and I am sad to say it has been cut by more than half with all the medical issues we have been dealing with in our family. You would never know it looking at him. He still runs up and gives kisses saying "I love you SOOO much mommy" (insert melted heart here) and then gives Matthew a smooch on the top of the head saying "I hope you feeling better Matthew". He gets more than I give him credit of getting. He simply astounds me at times. I am so proud of my big boy, my first baby...that regardless of being three or 70...he will always be my baby.
Happy birthday to my snuggle bug. Mommy loves you! Thank you God for giving me my William. In William's words: "I SO happy"!
William Ryan greeted the world at 9:37pm, 12 hours after my water broke at home, and 8 days after contractions started. A Mardi Gra party at a fellow coastie's house finally got it started. I had been walking the neighborhood, the mall and the grocery store to no avail, but standing and listening to music and big ol' belly laughs is what finally got my labor into full gear. I actually was hoping he would stay in for one more day, making him born in March. Though neither are very "manly" an aquamarine is much better than an amethyst...sigh. Oh well, beggars can't be choosers I guess. I just wanted to meet my little man.
We entered the labor waiting room right around 1:30pm and the fun began. By fun, I mean pain. I don't know why but some stupid part of me wanted to fully "experience" child birth. Yep, I experienced it...I didn't care all that much for the experience. You see, when I'm in pain - I throw up. I started throwing up right we I got up to 6 cm...right at 6pm. Epidural!!! Sweet relief arrived at 6:30pm. At 8pm I kept swearing to my nurse that I was feeling EVERYTHING again and it didn't feel good. I had to go to the potty! She kept informing me that it was too early for a first timer, but she'd get my midwife when she could. Finally at 8:45pm I got another nurse in and she checked me herself. I was READY!
They got me all situated and turned off my epidural, not that it was working anymore anyway!, and got me "into position". I pushed for 40 minutes, which I felt took forever, but was informed that was very good for a first timer. yay! *warning* - TMI coming up about "girlie parts": I was so overzealous in my pushing (contractions are nothing compared to crowning am I right momma's!), but in my mad attempt to get him out...I was torn a new one. My midwife wasn't equipped to stitch me up and had to call on the assistance of a plastic surgeon. So yes, when asked if I've had plastic surgery -yes - where? - wouldn't you like to know. ;)
William was placed in my arms and I started breastfeeding immediately, it just felt natural to me. And then my toes curled in pain and asked for a lactation consultant to help me with latching him properly. He had as much of a gusto for food as he did for life. We took him home March 1st, and our lives have never been the same. In a good way...mostly. ;)
He is the smartest little guy I've ever met, though I'm pretty positive I have mommy bias too. His accomplishments keep stacking up higher and higher from abilities to his personality. His is still a snuggle bug and wants to share cuddles with everyone. He loves to hug and be hugged and wants to meet everyone that passes by him. He is super friendly, extremely funny and down right sensitive. We were watching Toy Story 2 yesterday afternoon after his nap and the part where Jessie (the cowgirl companion to Woody) had her flashback of being a little girl's favorite toy only be discarded as the girl grows up. William rushed up to me, saying we needed to get back to the happy parts, this music made him sad.
William is the light in my eye and the song in my heart. We have SO much fun together and I am sad to say it has been cut by more than half with all the medical issues we have been dealing with in our family. You would never know it looking at him. He still runs up and gives kisses saying "I love you SOOO much mommy" (insert melted heart here) and then gives Matthew a smooch on the top of the head saying "I hope you feeling better Matthew". He gets more than I give him credit of getting. He simply astounds me at times. I am so proud of my big boy, my first baby...that regardless of being three or 70...he will always be my baby.
Happy birthday to my snuggle bug. Mommy loves you! Thank you God for giving me my William. In William's words: "I SO happy"!
Wednesday, February 25, 2009
Lent
Oh, the Lenten season...the time period when you will hear nearly all Catholic men (or men married to Catholic women) grumbling on Friday that once again, we are having cheese pizza. Last year, my mind wasn't thinking about meat, besides...being pregnant, over 55, under 14 or under health restrictions...the church says not to give up meat. So, I didn't "give up" anything for Lent like I was always have done. I didn't fast on Ash Wednesday or Good Friday. Again...pregnant, but in reality the days just slipped by without a thought. My thoughts were consumed with my son and his well being. Guess I had a small taste of what Mary must have felt like watching her Son march to His death. I was watching my son tackle his own demons and standing by helplessly...letting God's will be done.
Usually I give up the standard of meat along with something else that is harder for me, more of a sacrifice. In the past some of my choices were my standard radio station for a Christian channel, potato chips (that was HARD) and ice cream.
Lent is a time to repent and reflect, to sacrifice something of ourselves for the ultimate sacrifice Jesus did for us and our souls. No, I do not believe God will be mad,sad or even give a second thought if we eat a hamburger. I do think His smile will be a bit broader when He sees we are trying to better ourselves, no matter how little, when He hears our quiet thank you for His sacrifice. Giving up food is often thought of as the easiest way, it just doesn't take much thought. Oh, I can't have chocolate...then I'll just snack on Skittles to get my sugar rush. Yeah...not exactly the true meaning of "giving up" huh?
Thinking back to last year, I realized I DID actually give up something. I gave up my selfish attempts of control. That was the hardest sacrifice I'd ever done. I look back now and see I was completely willing, though you couldn't tell through the fits, tears and all out temper tantrums I was going through. hee hee, pregnancy hormones...gotta love em! This year however, I'm up for another challenge...I'm going to give up my pride. I will swallow it down with a grain of salt and finally ask for help. Not necessarily for me, though it would be me if that makes sense, but for my family. Like I have said in a previous post, things are finally getting to be too much and I am at my breaking point. I yell at William simply for being a little boy, I huff and puff when Matthew spits up, I roll my eyes when Ian vents about his day at work...I'm not where I need to be. And my lack of patience is showing because everything else is all spent. My reserves are at the lowest they have ever been. Last night Ian and I prayed together. He prayed for me, for my strength, my health and my well being. I just cried. It was a good release. It was good to be cared for by my husband that I am supposed to dote over.
So am I asking for prayers for me, something I have never done! I ask for prayers for Matthew ALL the time but I don't like showing weakness...and asking for prayers for oneself...I always thought was a sign of weakness. I now realize it takes a lot of strength to do so. My first small step in overcoming my pride.
Usually I give up the standard of meat along with something else that is harder for me, more of a sacrifice. In the past some of my choices were my standard radio station for a Christian channel, potato chips (that was HARD) and ice cream.
Lent is a time to repent and reflect, to sacrifice something of ourselves for the ultimate sacrifice Jesus did for us and our souls. No, I do not believe God will be mad,sad or even give a second thought if we eat a hamburger. I do think His smile will be a bit broader when He sees we are trying to better ourselves, no matter how little, when He hears our quiet thank you for His sacrifice. Giving up food is often thought of as the easiest way, it just doesn't take much thought. Oh, I can't have chocolate...then I'll just snack on Skittles to get my sugar rush. Yeah...not exactly the true meaning of "giving up" huh?
Thinking back to last year, I realized I DID actually give up something. I gave up my selfish attempts of control. That was the hardest sacrifice I'd ever done. I look back now and see I was completely willing, though you couldn't tell through the fits, tears and all out temper tantrums I was going through. hee hee, pregnancy hormones...gotta love em! This year however, I'm up for another challenge...I'm going to give up my pride. I will swallow it down with a grain of salt and finally ask for help. Not necessarily for me, though it would be me if that makes sense, but for my family. Like I have said in a previous post, things are finally getting to be too much and I am at my breaking point. I yell at William simply for being a little boy, I huff and puff when Matthew spits up, I roll my eyes when Ian vents about his day at work...I'm not where I need to be. And my lack of patience is showing because everything else is all spent. My reserves are at the lowest they have ever been. Last night Ian and I prayed together. He prayed for me, for my strength, my health and my well being. I just cried. It was a good release. It was good to be cared for by my husband that I am supposed to dote over.
So am I asking for prayers for me, something I have never done! I ask for prayers for Matthew ALL the time but I don't like showing weakness...and asking for prayers for oneself...I always thought was a sign of weakness. I now realize it takes a lot of strength to do so. My first small step in overcoming my pride.
Saturday, February 21, 2009
What a difference
From tears of sadness to tears from laughter...what a difference a year makes. I know I've been blogging a lot about Matthew recently, but since it's been a full year of when the "adventures" started...it's just been on my mind. This was the day I was told Matthew didn't stand a chance, might as well just let him go. I couldn't. As I have written before, it wasn't my decision or the doctor's...it was God's. He created him and if he felt Matthew served a higher purpose with Him than with our family, that was His decision and I would accept it. But I couldn't "play God" myself and just "get rid of the problem". I do remember Ian and I seriously taking this suggestion to heart. Did I want to have my baby go through all the "tortures" they were promising...all the "tortures" he goes through now is what they were promising actually (hemo, doctor visits, medicines)? What kind of life would that be for a baby? A little baby that couldn't tell us where it hurt or how he was feeling? An innocent that didn't have any say in what was happening to his body? A spirit that could easily be crushed by the weight of his disease? We really did pray over it. I'm glad God gave us our answer to open our souls and trust Him.
I look at all that Matthew has gone through. The "war wounds" on his tummy and the "robo-baby" parts that stick out of him (those are our "endearing terms" naturally). I see him smile and love on his big brother. I hear him laugh and squeal out in delight. I see him making new friends and changing lives of others daily it seems. He is our miracle and I am thankful everyday he has graced our lives. If God calls him home this year or 90 years from now, I'll still be grateful for the time we have had. For the obstacles we both have pulled through. For the decision God made to place him in our lives. For the doctors that have helped us in pregnancy and infancy...that Matthew has defied and dared to laugh in their faces. ;) I see a happy, healthy in all of aspects but kidneys, easy going baby...that right now is proving me wrong as he starts to fuss for his bottle. Words just can't express my feelings for him. This baby truly is a part of me, and one day in the future I will truly be a part of him. I will make him as whole as he has made our family. And with that, we will start a new adventure. An adventure of "real" health and the freedom that will come with that. Thank you God again, for helping me during this dark time last year and for giving me my "gift from God", my Matthew.
I look at all that Matthew has gone through. The "war wounds" on his tummy and the "robo-baby" parts that stick out of him (those are our "endearing terms" naturally). I see him smile and love on his big brother. I hear him laugh and squeal out in delight. I see him making new friends and changing lives of others daily it seems. He is our miracle and I am thankful everyday he has graced our lives. If God calls him home this year or 90 years from now, I'll still be grateful for the time we have had. For the obstacles we both have pulled through. For the decision God made to place him in our lives. For the doctors that have helped us in pregnancy and infancy...that Matthew has defied and dared to laugh in their faces. ;) I see a happy, healthy in all of aspects but kidneys, easy going baby...that right now is proving me wrong as he starts to fuss for his bottle. Words just can't express my feelings for him. This baby truly is a part of me, and one day in the future I will truly be a part of him. I will make him as whole as he has made our family. And with that, we will start a new adventure. An adventure of "real" health and the freedom that will come with that. Thank you God again, for helping me during this dark time last year and for giving me my "gift from God", my Matthew.
Tuesday, February 17, 2009
what they don't understand...
*please don't take this as "bitching" - just have to get it out of my system sometimes. Bear with me for a moment.*
I have a GREAT family, both by blood and marriage. They are constantly helping me out with either William or Matthew and even allow Ian and I some much needed alone time every once in awhile. I guess this should really make me happy, but it doesn't. I HATE, loathe really, asking for help. I won't do it, unless I'm sick and can't be near the boys. I'll just drown in a pit of very bad things, getting completely and totally overwhelmed before I pick up the phone. They do enough for me normally, and I don't want to use up my good graces by asking for additional things. But I also know that I can't do it on my own. Ouch - that actually hurts to have in black and white in front of me!
I've handled three weeks of a newborn by myself while Ian was in Oklahoma for the Coast Guard...because when anyone thinks ocean...they think Oklahoma! I've managed stomach viruses, hurricanes, and migraines while tending to William at the same time Ian was tending to the NC coastline. I've moved our entire household (4 times in 5 years): canceling and setting up utilities, arranging for free help (well, help that works for food and beer), packing up, and handling all the paperwork for mortgage loans, insurance and rental agreements. I pay the bills and manage the finances. I grocery shop and meal plan for the week, while cutting coupons nightly. I walk the dog...ugh! And I've always kept my head above water...until recently.
Now add to that - Matthew. I hate to put that like he is a burden...IT'S NOT HIM! It's just the medical stuff. So, now I make appointments for hemodialysis, clinic, WIC, pediatric well checks and various specialists (like urology at the moment). I'm on the phone with insurance companies, (all three - tricare, medicaid and medicare) pharmacies, nurses/doctors, the Sherwood Clinic for his RSV shots, Bartow county health department and any other "problems" that may arise unexpectedly. I'm running to hemo twice a week (which is really a blessing as it could be three times), but it takes me nearly two hours in the morning to get down there and an hour to come back. Not to mention the 3 hours we are there getting dressing changes, vitals and our actual hemo. I'm exhausted on those days, more so when we have a certain nurse! Sometimes I don't leave his bedside the entire time I'm there. I need to start bringing some snacks in my purse so I don't get a head ache...especially since I never know who my nurse is going to be!
Matthew luckily is a very happy baby, but you can only expect so much out of him when he wants to roll over or move around and he has to be completely still because his hemo cath is so freakin positional! He loves the dialysis unit, with the toys, the people, the visitors...he loves it so much...he doens't want to miss a minute. Meaning, he doesn't sleep! Imagine a baby going from 6:30am when I have to wake him up to get in the car (for our 10am appoinment) until 2pm when we are ready to leave...with out a nap. Can you say ornery!! He loves to move! This is also an issue for xrays. Little man gets sand bags put on his legs, needless to say, he DESPISES that. But with all of this, I'm also emotionally drained, trying my hardest to keep him happy. If he is happy, I can handle anything. It's amazing how much of my feelings are dependent on my children's happiness!
So, when I finally get some time to myself or some time alone with my hubby, I'm still a mess afterwards. Two hours just doesn't erase a year of stress. It helps!!! Builds my reserves back up, but they will deplete. When Ian is being a sweetie and getting up at night to do the feeding tube change outs, I still wake up tired. Yes, he gets up and does all the work, but I hear the alarm, I wonder if he remembers all the steps, I hope William didn't get woken up with the loud beeping. So, I still end up being tired in the morning...not to mention...I'm William's cuddle buddy in the morning (which I wouldn't trade for all the sleep in the world).
So even though I do get help and I am eternally grateful, please don't expect a miracle in my mood, exhaustion, worriedness or whatever. It doesn't mean you didn't help me out, because you did more than you'll know. It just means that I have a lot on my plate and the garbage diposal is backed up.
I have a GREAT family, both by blood and marriage. They are constantly helping me out with either William or Matthew and even allow Ian and I some much needed alone time every once in awhile. I guess this should really make me happy, but it doesn't. I HATE, loathe really, asking for help. I won't do it, unless I'm sick and can't be near the boys. I'll just drown in a pit of very bad things, getting completely and totally overwhelmed before I pick up the phone. They do enough for me normally, and I don't want to use up my good graces by asking for additional things. But I also know that I can't do it on my own. Ouch - that actually hurts to have in black and white in front of me!
I've handled three weeks of a newborn by myself while Ian was in Oklahoma for the Coast Guard...because when anyone thinks ocean...they think Oklahoma! I've managed stomach viruses, hurricanes, and migraines while tending to William at the same time Ian was tending to the NC coastline. I've moved our entire household (4 times in 5 years): canceling and setting up utilities, arranging for free help (well, help that works for food and beer), packing up, and handling all the paperwork for mortgage loans, insurance and rental agreements. I pay the bills and manage the finances. I grocery shop and meal plan for the week, while cutting coupons nightly. I walk the dog...ugh! And I've always kept my head above water...until recently.
Now add to that - Matthew. I hate to put that like he is a burden...IT'S NOT HIM! It's just the medical stuff. So, now I make appointments for hemodialysis, clinic, WIC, pediatric well checks and various specialists (like urology at the moment). I'm on the phone with insurance companies, (all three - tricare, medicaid and medicare) pharmacies, nurses/doctors, the Sherwood Clinic for his RSV shots, Bartow county health department and any other "problems" that may arise unexpectedly. I'm running to hemo twice a week (which is really a blessing as it could be three times), but it takes me nearly two hours in the morning to get down there and an hour to come back. Not to mention the 3 hours we are there getting dressing changes, vitals and our actual hemo. I'm exhausted on those days, more so when we have a certain nurse! Sometimes I don't leave his bedside the entire time I'm there. I need to start bringing some snacks in my purse so I don't get a head ache...especially since I never know who my nurse is going to be!
Matthew luckily is a very happy baby, but you can only expect so much out of him when he wants to roll over or move around and he has to be completely still because his hemo cath is so freakin positional! He loves the dialysis unit, with the toys, the people, the visitors...he loves it so much...he doens't want to miss a minute. Meaning, he doesn't sleep! Imagine a baby going from 6:30am when I have to wake him up to get in the car (for our 10am appoinment) until 2pm when we are ready to leave...with out a nap. Can you say ornery!! He loves to move! This is also an issue for xrays. Little man gets sand bags put on his legs, needless to say, he DESPISES that. But with all of this, I'm also emotionally drained, trying my hardest to keep him happy. If he is happy, I can handle anything. It's amazing how much of my feelings are dependent on my children's happiness!
So, when I finally get some time to myself or some time alone with my hubby, I'm still a mess afterwards. Two hours just doesn't erase a year of stress. It helps!!! Builds my reserves back up, but they will deplete. When Ian is being a sweetie and getting up at night to do the feeding tube change outs, I still wake up tired. Yes, he gets up and does all the work, but I hear the alarm, I wonder if he remembers all the steps, I hope William didn't get woken up with the loud beeping. So, I still end up being tired in the morning...not to mention...I'm William's cuddle buddy in the morning (which I wouldn't trade for all the sleep in the world).
So even though I do get help and I am eternally grateful, please don't expect a miracle in my mood, exhaustion, worriedness or whatever. It doesn't mean you didn't help me out, because you did more than you'll know. It just means that I have a lot on my plate and the garbage diposal is backed up.
Thursday, February 12, 2009
Time
Oh, a mother is never happy with time are we? From February 08 thru February 09 (and most likely beyond), I've battled with time! Time to hurry up and get prelimary testing down on Matthew to see if he had any genetic disorders or other abnormalities...nope just a broken weeny...let's start fetal surgeries. Time to stretch and keep going. Gotta stay pregnant for as long as possible, at least I made it past two set goals...weeks 28 and 30. Unfortunately I didn't make it to my third goal of week 32, but Matthew's preemie issues just aren't even issues thankfully.
Once Matthew got here, it was a constant battle of me wanting him to stay tiny and small and wanting him to grow big quick to get to transplant. This has been a hard part. Matthew is our last baby (if I have any say and God agrees). I wanted to enjoy my last pregnancy, but was in a constant state of alertness and concern. Every movement was monitored by my brain...oh. he's just rolling...fluid is low...gotta contact Dr Gomez to work me in sooner. I wish I had been able to go full term. I see pregnant ladies waddling around Walmart and wish that could have been me. I hear pregnant ladies griping about being big and uncomfortable, wishing the baby would hurry and come. I wished mine had stayed in. I was uncomfortable from week 18 out, from that week...I never went longer than 7 days without at least one needle in my stomach/uterus and many times their were instruments much bigger than needles in there...without pain meds! But I didn't mind, and would gladly do it all again. Matthew has helped me take stock of what is important in life and my physical comfort takes a back seat to his. He has made me count my blessing and realize how truly grateful I am to have him in my life. What a role model he is...and he is only 8 months old.
But now I can't take the pain for him. He's going to have several surgeries before his transplant. If they don't work, then we don't get to transplant. And once again, time is not on my side. I will wait a week (that in retrospect will seem small, but now seems daunting) to hear how we will proceed. Which surgery will be first? How many total? How much off of our original timeline of a summer transplant are we going to be?
I have many wonderful friends that often say they don't know if they could do all of this, go through all of this...but I don't doubt it for a second. We are moms, we would do anything for our children. Yes, it breaks my heart, but my spirit is strong. My faith is strong. And I am human. I break down at night in my husband's arm and have my own "why us" moments. But I get back up, dry my eyes and go into both boy's rooms...and then I know. One look of my sleeping angels is enough for me.
Matthew is teaching me to be a better person, something I prayed to be. Thank you Matthew for giving me this gift of insight. I love you so much my little man. And for that, I will always be there for every surgery, every needle stick, every test, and every milestone...through out time.
Once Matthew got here, it was a constant battle of me wanting him to stay tiny and small and wanting him to grow big quick to get to transplant. This has been a hard part. Matthew is our last baby (if I have any say and God agrees). I wanted to enjoy my last pregnancy, but was in a constant state of alertness and concern. Every movement was monitored by my brain...oh. he's just rolling...fluid is low...gotta contact Dr Gomez to work me in sooner. I wish I had been able to go full term. I see pregnant ladies waddling around Walmart and wish that could have been me. I hear pregnant ladies griping about being big and uncomfortable, wishing the baby would hurry and come. I wished mine had stayed in. I was uncomfortable from week 18 out, from that week...I never went longer than 7 days without at least one needle in my stomach/uterus and many times their were instruments much bigger than needles in there...without pain meds! But I didn't mind, and would gladly do it all again. Matthew has helped me take stock of what is important in life and my physical comfort takes a back seat to his. He has made me count my blessing and realize how truly grateful I am to have him in my life. What a role model he is...and he is only 8 months old.
But now I can't take the pain for him. He's going to have several surgeries before his transplant. If they don't work, then we don't get to transplant. And once again, time is not on my side. I will wait a week (that in retrospect will seem small, but now seems daunting) to hear how we will proceed. Which surgery will be first? How many total? How much off of our original timeline of a summer transplant are we going to be?
I have many wonderful friends that often say they don't know if they could do all of this, go through all of this...but I don't doubt it for a second. We are moms, we would do anything for our children. Yes, it breaks my heart, but my spirit is strong. My faith is strong. And I am human. I break down at night in my husband's arm and have my own "why us" moments. But I get back up, dry my eyes and go into both boy's rooms...and then I know. One look of my sleeping angels is enough for me.
Matthew is teaching me to be a better person, something I prayed to be. Thank you Matthew for giving me this gift of insight. I love you so much my little man. And for that, I will always be there for every surgery, every needle stick, every test, and every milestone...through out time.
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