So an anonymous commenter asked me if I regretted announcing my pregnancy so early.
Short answer: No.
Long answer: Some people don't announce until after the 12th week of pregnancy. The supposed "safety mark" of pregnancy. I'm past that... so if I were to wait, when would you suggest I had waited?
I absolutely positively have zero regrets about announcing as early as we did. Every life is special and valuable and deserves to be celebrated. Some people celebrate for a long 9 months and then a lifetime. Some celebrate for a much shorter time but each life deserves to be celebrated... thoroughly.
We've cried tears of happiness upon the news that we were blessed with another life to love. We gasped in awe at the sweet little heartbeat fluttering on the screen at our first ultrasound. We laughed at our wiggleworm as the ultrasound tech struggled to get the measurements she needed for her reports. We have daydreamed ahead to having another little one toddling around our home.
We've also had a few restless nights here lately. We've uttered prayers for hours on end pleading for our baby to still be there the next time they check for a heartbeat. We've willed its little heart to continue beating.
But our joy isn't gone. I'm refusing to let the joy be snuffed out by the worries. So we celebrate. Each day we celebrate one more day with our sweet, tiny baby. We remain cautiously optimistic.
Tomorrow things can change. My appt is at 9:45am and I could walk out in tears after hearing terrible news.
And the Lord will still be good. He will still be sovereign. And we will still worship Him and praise Him.
But tonight, we thank Him, for one more day with our sweet child. I'm not borrowing trouble. I'm resting in the palm of His hand.
Are you celebrating the today? Or has the worry of tomorrow sucked the joy out of your today? Friends, none of us are promised tomorrow. And not a worry in the world adds a minute of time to our today.
I encourage you to celebrate today.
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." ~Matthew 6:34
~Stephanie
Wednesday, February 29, 2012
Home Sweet Home...
Tuesday morning the peri came and did another ultrasound. They found a subchorionic bleed (which is a bleed between the placenta and the uterine wall.)
Other than that everything looked great. Fluid was fine, cervix was great, baby was active and growing well and baby's heartrate was good.
I was sent home with orders to take it very easy-- basically modified bedrest. No lifting, pulling, cleaning, straining, pushing, walking long distances, etc, etc.
Things are still wait and see. We have another appointment on Thursday morning. In the meantime, we are praying protection for our baby and wisdom for our doctor.
Also, starting Friday I can start getting P17 shots once a week. This is to prevent preterm labor (that I've had with my other children.) These shots are very expensive, but having child born before 37 weeks qualifies me for them. We are also praying that there are no issues with getting the shots approved. I've been told that each shot is about $1500 a WEEK before insurance coverage. EEKS!!!
My aunt is back in Virginia (I'm making my case trying to get her to move here!) and helping with the children. Our friends and church family have been AMAZING as well. We feel very loved and blessed.
~Stephanie
Other than that everything looked great. Fluid was fine, cervix was great, baby was active and growing well and baby's heartrate was good.
I was sent home with orders to take it very easy-- basically modified bedrest. No lifting, pulling, cleaning, straining, pushing, walking long distances, etc, etc.
Things are still wait and see. We have another appointment on Thursday morning. In the meantime, we are praying protection for our baby and wisdom for our doctor.
Also, starting Friday I can start getting P17 shots once a week. This is to prevent preterm labor (that I've had with my other children.) These shots are very expensive, but having child born before 37 weeks qualifies me for them. We are also praying that there are no issues with getting the shots approved. I've been told that each shot is about $1500 a WEEK before insurance coverage. EEKS!!!
My aunt is back in Virginia (I'm making my case trying to get her to move here!) and helping with the children. Our friends and church family have been AMAZING as well. We feel very loved and blessed.
~Stephanie
Monday, February 27, 2012
Hospitalized...
Nope, not Xander.
His mama.
Early Sunday morning, I was sleeping and felt a "pop" and then felt wetness all around me.
I got up and went to the restroom and when I finally pryed my eyes open, there was blood everywhere.
I went back and looked in the bed, and sure enough I had been laying in a large puddle of blood.
I woke Brandon and headed back to the restroom.
He called our doctor's office and our doctor was on call. He said he'd meet me in the emergency room. Brandon and I changed clothes and then Brandon loaded the children in their pajamas into the van.
We rode to the hospital (25 minutes) in silence. I was begging God to please don't make us walk the road of loss again. Later I asked Brandon what he was thinking, and he said he was pleading for the same thing.
When I got the ER they were expecting me and I went straight back. Just a few minutes later my doctor was there.
So far we have no reason for the bleeding. The baby's heartrate was found and I'm not dialating. They did an ultrasound and I didn't have placenta previa or abruption. My amniotic sac was intact and baby had plenty of fluid and was moving. (After we found the heartbeat, my doctor was most concerned the pop I felt was my water breaking.)
My aunt arrived safely last evening and is at our house with the children.
I was admitted for observation for one night but the bleeding never completely stopped. It would lighten and stop shortly only to return later.
Early this morning, I had the worst episode of bleeding since I've been in the hospital. *sigh*
We have heard the baby's heart beat several times a day and so that is reassuring, even when it takes them awhile to find it.
Tomorrow the perinatalogist will be in with an ultrasound tech to do a full scan and check everything out really carefully. I've been told that this will take place around 8-9 am.
*Deep breath* This morning was a bit shocking for Brandon and I. We obviously know that bleeding in pregnancy isn't good and we also know that 14 weeks is too early for baby to survive without being safely tucked in my womb. But to hear the words threatened miscarriage and to be told that I'm basically waiting for the bleeding to stop or miscarry, sucked every breath out of my lungs and I had a long cry after I was told that. My doctor was not harsh with me or uncaring. I still greatly respect him. It was just very hard for us to be told that we are waiting on a miracle and that some pregnancies continue on with great outcomes and some end with bad outcomes. I mean, intellectually I know that, but no one really wants to talk about it, especially with their baby's life on the line.
Brandon has been amazing and so have our friends and church family. This morning Brandon reminded me that we know the One that can provide that miracle for us. We know Him intimately and deeply and He knows us too. He has carefully knit our baby together and loves him or her more than we do. As parents, it is really hard to imagine a love for our children bigger than our own. But God does! God has this ALL planned out. He knows exactly how many days our baby has.
We continue to intercede on our baby's behalf and hope for a long pregnancy, uneventful birth and a lifetime of memories.
~Stephanie
His mama.
Early Sunday morning, I was sleeping and felt a "pop" and then felt wetness all around me.
I got up and went to the restroom and when I finally pryed my eyes open, there was blood everywhere.
I went back and looked in the bed, and sure enough I had been laying in a large puddle of blood.
I woke Brandon and headed back to the restroom.
He called our doctor's office and our doctor was on call. He said he'd meet me in the emergency room. Brandon and I changed clothes and then Brandon loaded the children in their pajamas into the van.
We rode to the hospital (25 minutes) in silence. I was begging God to please don't make us walk the road of loss again. Later I asked Brandon what he was thinking, and he said he was pleading for the same thing.
When I got the ER they were expecting me and I went straight back. Just a few minutes later my doctor was there.
So far we have no reason for the bleeding. The baby's heartrate was found and I'm not dialating. They did an ultrasound and I didn't have placenta previa or abruption. My amniotic sac was intact and baby had plenty of fluid and was moving. (After we found the heartbeat, my doctor was most concerned the pop I felt was my water breaking.)
My aunt arrived safely last evening and is at our house with the children.
I was admitted for observation for one night but the bleeding never completely stopped. It would lighten and stop shortly only to return later.
Early this morning, I had the worst episode of bleeding since I've been in the hospital. *sigh*
We have heard the baby's heart beat several times a day and so that is reassuring, even when it takes them awhile to find it.
Tomorrow the perinatalogist will be in with an ultrasound tech to do a full scan and check everything out really carefully. I've been told that this will take place around 8-9 am.
*Deep breath* This morning was a bit shocking for Brandon and I. We obviously know that bleeding in pregnancy isn't good and we also know that 14 weeks is too early for baby to survive without being safely tucked in my womb. But to hear the words threatened miscarriage and to be told that I'm basically waiting for the bleeding to stop or miscarry, sucked every breath out of my lungs and I had a long cry after I was told that. My doctor was not harsh with me or uncaring. I still greatly respect him. It was just very hard for us to be told that we are waiting on a miracle and that some pregnancies continue on with great outcomes and some end with bad outcomes. I mean, intellectually I know that, but no one really wants to talk about it, especially with their baby's life on the line.
Brandon has been amazing and so have our friends and church family. This morning Brandon reminded me that we know the One that can provide that miracle for us. We know Him intimately and deeply and He knows us too. He has carefully knit our baby together and loves him or her more than we do. As parents, it is really hard to imagine a love for our children bigger than our own. But God does! God has this ALL planned out. He knows exactly how many days our baby has.
We continue to intercede on our baby's behalf and hope for a long pregnancy, uneventful birth and a lifetime of memories.
~Stephanie
Friday, February 24, 2012
Round Two: Ding, ding!
Today I got the run around from the lab and our doctor's office. It was a giant mess of tangled knots and I was pretty sure at one point I was being "Punk'd" or being taped for Candid Camera. If only people could actually listen to what is being said.
I don't have the energy to rehash the craziness that I went through.
Anyway, it all boils down to the fact that we FINALLY got to speak with our doctor. The lab results are not going to be done until Monday (another long story) but due to Xander's history and the fact that he recently had cdiff and is showing symptoms of it again, we are treating it.
The other possibility is that he has SIBO (Small Intestine Bacterial Overgrowth) but the treatment is the same: Flagyl (an antibiotic) for three weeks this time.
If he shows improvement over the weekend, we know that it is one of those two. If he shows no improvement then it is something else (barring an inappropriately handled sample or the test being performed incorrectly.)
Once he does 16 days of the antibiotic we will add a probiotic to try to get the bacteria in his GI tract in a better balance. He would remain on the probiotic twice a day for at least 4 weeks. The doctor gave me the name of a product he recommended, but after looking it up, it contains lactose and the label says that it possibly contains soy. We will obviously need an alternative to that. *sigh* It just never ends.
If the test results come back on Monday and say that it was cdiff negative, then we are more likely to have SIBO. If symptoms reoccur in the future, with negative cdiff testing, we will have to look into WHY he gets the overgrowth. That would come via endoscopy.
So we are slightly closer to a possibility of an answer, but it will continue to be a slow going thing.
We did ask our doctor (again) about being around other children, since Xander was in the nursery at church this past Sunday and we have three other children. Our gastroenterologist says that cdiff is spread through fecal-oral transmission. Meaning, washing hands after diaper changes are of utmost importance and of course washing your hands before meals is also of importance. I'm a little OCD about washing my hands so although I have no spleen (and therefore am technically considered immune compromised) I have not contracted cdiff and neither have any of our children (who are constantly around Xander.)
But we will keep him away from church until his symptoms improve, just in case. I just didn't want anyone thinking we are out contaminating places or knowingly putting other children at risk. We would never knowingly do that. I mean, we are the same people that stay home from church if one of our children has a runny nose.
Pray we see improvement over the weekend. While it may mean a long road, at least we would KNOW what we are fighting.
~Stephanie
I don't have the energy to rehash the craziness that I went through.
Anyway, it all boils down to the fact that we FINALLY got to speak with our doctor. The lab results are not going to be done until Monday (another long story) but due to Xander's history and the fact that he recently had cdiff and is showing symptoms of it again, we are treating it.
The other possibility is that he has SIBO (Small Intestine Bacterial Overgrowth) but the treatment is the same: Flagyl (an antibiotic) for three weeks this time.
If he shows improvement over the weekend, we know that it is one of those two. If he shows no improvement then it is something else (barring an inappropriately handled sample or the test being performed incorrectly.)
Once he does 16 days of the antibiotic we will add a probiotic to try to get the bacteria in his GI tract in a better balance. He would remain on the probiotic twice a day for at least 4 weeks. The doctor gave me the name of a product he recommended, but after looking it up, it contains lactose and the label says that it possibly contains soy. We will obviously need an alternative to that. *sigh* It just never ends.
If the test results come back on Monday and say that it was cdiff negative, then we are more likely to have SIBO. If symptoms reoccur in the future, with negative cdiff testing, we will have to look into WHY he gets the overgrowth. That would come via endoscopy.
So we are slightly closer to a possibility of an answer, but it will continue to be a slow going thing.
We did ask our doctor (again) about being around other children, since Xander was in the nursery at church this past Sunday and we have three other children. Our gastroenterologist says that cdiff is spread through fecal-oral transmission. Meaning, washing hands after diaper changes are of utmost importance and of course washing your hands before meals is also of importance. I'm a little OCD about washing my hands so although I have no spleen (and therefore am technically considered immune compromised) I have not contracted cdiff and neither have any of our children (who are constantly around Xander.)
But we will keep him away from church until his symptoms improve, just in case. I just didn't want anyone thinking we are out contaminating places or knowingly putting other children at risk. We would never knowingly do that. I mean, we are the same people that stay home from church if one of our children has a runny nose.
Pray we see improvement over the weekend. While it may mean a long road, at least we would KNOW what we are fighting.
~Stephanie
Thursday, February 23, 2012
"Mommy? No More Geaming, okay?"
Today was beautiful and in the upper 60's and lower 70's so we had to get out of the house. (In comparison, it snowed on Sunday and took until Wednesday before we could see our grass again!)
We ran a variety of errands and then ended up at Bass Pro Shop. Xander could happily live in Bass Pro Shop. He loves everything about it. I'm always so amazed as I watch him, how much a... boy.. he really is. I mean, he has two big sisters! But he's always been this way. Anything that goes has always been his favorite: Airplanes, boats, trucks, whatever.
First we stopped at the huge fish tank. And he squealed with delight as each of the fish passed by our stroller. Solomon had a look of quiet fear on his face. He was watching those fish to make sure they weren't coming after him. But Xander? He squealed with delight each time one darted across the large tank.
Lainey had fun trying to match each fish to the poster listing the types of fish in the tank. She taught her sister that there wasn't a swordfish in the tank. That fish was a gar.
Then we walked around a bit and made another stop by the tank. Xander was so upset as we started pushing the stroller towards the door. "F-shhhhhhhhhhhhh!" he yelled as he kicked his feet in the stroller.
And then, we did his favorite thing ever. We let him sit on the 4 wheeler. He loved it. I struggled to stay in the moment because I kept seeing a teenaged Xander ready to go on a ride with me calling out to him to please wear his helmet! My baby is growing up so quickly!
He also sat in a boat. Vroom, vroom he said as he turned the steering wheel. He's never been on the water, but he sure knows what it is supposed to do!
Afterwards, we stopped by a model home. I schlepped all the kids in (after trying to stay in the van) and we took a look around. And then I took the children back to the car while Brandon stood talking to the sales agent.
And it happened. I looked down and there was a BUG on my arm.
Y'all!
I started screaming and waving my arms around. Lainey and Julianne asked what was wrong, Solomon started crying and Xander gave me a hateful "What on earth!?!!" look as he sucked his thumb.
And I finally knocked it off.
But it landed in my purse!
So I grabbed my bright pink Vera Bradley purse and carried it arm extended to Brandon. He saw me through the glass door and came outside asking if everything was okay.
I insisted that he MUST get the bug out of my purse and without skipping a beat, he pulled out my calendar and swiped the bug on the ground and then threw the calendar back into the purse and handed it back to me. He did all this while continuing his conversation with the sales rep.
I marched back to the van and got in. As I was buckling my seatbelt, I heard a tiny voice from the backseat.
"Mommy? No more geaming (screaming), okay?"
Yes, dear.
~Stephanie
PS: We are hoping to hear the results of Xander's cdiff testing tomorrow (Friday). I really don't want to wait through the weekend. Will you pray with us that we get those results back tomorrow? Thanks!
Tuesday, February 21, 2012
Downhill Slide..
Saturday night, I was on top of the world. I was determined that we were going to attend church. I desperately needed to be among God's people, in His house, and soak up His word. I have no idea how we lived here 2+ years before finding a church home.
I had barely made it a month.
So I set clothes out, packed diaper bags and went to bed early. I prayed for all distractions and hindrances to move out of the way.
And then I was woken up at 4 am. Nothing was wrong, but I couldn't sleep. I had the most energy I've had in months. I could barely contain myself.
So I blogged. And then I got up and took a shower. And straightened my hair for the first time in so long I lost count!
We went to church and it felt SO good. We were so touched by how many said they missed us and asked how Xander was doing.
I shared how we figured out the Prevacid and had had the best day in a long time just the day before. So many were so happy for us.
And then when I went to pick him up from the nursery we were told that he had two loose diapers.
Hmmmmmmmmmmmmmm...
He was much fussier than he had been at lunch. Brandon and I exchanged worried looks and we both held our breath but his diapers were fine for the rest of the day.
The next morning, he had diarrhea.
And this evening I've changed several diarrhea diapers. *sigh*
After phoning our doctors, we are doing another Cdiff test tomorrow. *sigh* Another clear test would mean that we are dealing with something else. A clear test would mean that this is time for his endoscopy and sigmoidoscopy.
A positive cdiff test means that we put him back on antibiotics and depending how far it has gotten, we may be readmitted. *eeks*
We'll be waiting for those results with baited breath. Either way, something has to give for our guy. SOMETHING has to change for him.
Please pray for wisdom and strength. I can feel the panic starting to rise up within me again.
It was nice feeling normal for Saturday and part of Sunday, but once again I'm reminded just how much things have changed for us. What a cold slap of reality that was.
~Stephanie
I had barely made it a month.
So I set clothes out, packed diaper bags and went to bed early. I prayed for all distractions and hindrances to move out of the way.
And then I was woken up at 4 am. Nothing was wrong, but I couldn't sleep. I had the most energy I've had in months. I could barely contain myself.
So I blogged. And then I got up and took a shower. And straightened my hair for the first time in so long I lost count!
We went to church and it felt SO good. We were so touched by how many said they missed us and asked how Xander was doing.
I shared how we figured out the Prevacid and had had the best day in a long time just the day before. So many were so happy for us.
And then when I went to pick him up from the nursery we were told that he had two loose diapers.
Hmmmmmmmmmmmmmm...
He was much fussier than he had been at lunch. Brandon and I exchanged worried looks and we both held our breath but his diapers were fine for the rest of the day.
The next morning, he had diarrhea.
And this evening I've changed several diarrhea diapers. *sigh*
After phoning our doctors, we are doing another Cdiff test tomorrow. *sigh* Another clear test would mean that we are dealing with something else. A clear test would mean that this is time for his endoscopy and sigmoidoscopy.
A positive cdiff test means that we put him back on antibiotics and depending how far it has gotten, we may be readmitted. *eeks*
We'll be waiting for those results with baited breath. Either way, something has to give for our guy. SOMETHING has to change for him.
Please pray for wisdom and strength. I can feel the panic starting to rise up within me again.
It was nice feeling normal for Saturday and part of Sunday, but once again I'm reminded just how much things have changed for us. What a cold slap of reality that was.
~Stephanie
Sunday, February 19, 2012
The Best Day in a Long Time...
Yesterday (Saturday) was the best day we've had in a long time. I can actually say that it was the first day I haven't cried hot tears of frustration and sadness in weeks. WEEKS.
This has been the most prolonged stressful thing I have ever dealt with, by far. My pregnancy with Julianne was touch and go and we dealt with my miscarriages, but this has been prolonged stress, with zero answers. I don't like to live my life that way. Even walking the infertility road, we knew what the problem was.
I completely relate to Lainey and Julianne when they ask me questions about expectations. Both girls like to know what is going on, what is going to happen next, etc. I'm not sure if they are wired like that, or if me explaining to them (because that is how I'd want to be treated) has taught them to ask those things. But either way, I have no issues explaining to our children what to expect.
No one, no one, has been able to tell us what to expect with Xander. We get a lot of maybe, hopefully, and theoretically. And then he does something unexpected and it all starts again. This whole parenting gig has been an interesting lesson to me. Can anyone predict with certainty what they can expect out of childhood? Yeah, me either. Parenting is humbling that way.
But this whole health issue thing has taken that to another level.
Xander once again lost his speech. I fully believe that he COULD talk and was in such excruciating pain again, that he simply couldn't tolerate it. I asked him to use his words, just tell Mommy, and all I got in return was screeching and screaming and flailing about. So we lost speech and I felt that panicky feeling all over again. I think my deepest fear is that he was going to lose speech and we weren't going to get it back. Sure, he hopefully would. He theoretically should. But I've learned that there are no guarantees.
In a bout of frustration, and searching for something, anything to help him, I discovered that Prevacid contains lactose. We know he has issues with milk, soy and egg, but we aren't sure what part of the milk he has an issue with. Some people have issues with casein. Some have issues with lactose. Some have issues with milk, period. Personally I think that we fall in the milk group and so when I discussed it with Brandon we decided to discontinue the Prevacid. His last dose was Thursday. Friday, the screaming and screeching was still terrible. But Friday night things seemed to even out a bit. Xander was engaged and playful with me for about 20 minutes before supper. He sat in my lap. I tickled him and was even allowed to tickle him on his tummy. Pretty soon, he was going to play with toys and off he went. It was pure bliss. At dinner, he ate the best he's eaten in weeks. He ate REAL vegetables, not babyfood puree. And I started to feel hope rise up within me.
I prayed desperately that night, to please, please let my Xander be the same or better the next day. I tossed and turned, and read his records over and over. I begged God to just please let him be "with us" the next day. Not in a physical sense, but engaged fully. Please God, just let him be WITH me tomorrow. I fell asleep around 3 am.
Saturday, I had a whole new kiddo. Sure, we still had typical two year old meltdowns. For example, I allowed the unthinkable to happen. We ran out of bananas. So breakfast caused a disagreement because Xander was insistent he was going to have a banana that I couldn't produce out of thin air. And I've never been happier to see a typical two year old tantrum in my life!
I watched him as he played with his toys. He sat for probably about 15-20 minutes playing with various vehicles at the dining room table. I sat still, just watching our boy do what 2 year old boys do!
He ate his lunch and was a happy boy. I think I saw more smiles yesterday than what I saw for weeks previously.
Naptime brought typical tears. No two year old wants to go to sleep! "Mo-om-ma" he shouted from his bedroom. But then... he went to sleep! Imagine that!
He woke from his nap and was happy as a clam. Daddy came home shortly after and I was frantically trying to get us all ready to go out. When Brandon asked where I wanted to go, I said "ANYWHERE! I just want to go!!"
Xander heard that we were going bye, bye and his speech picked up. "Go bye bye?" he asked. Yes, Xander. "Go bye, bye with Goggy (Daddy?)" Yes, Xander. "And Mommy?" Yes sir! And Nene? (Lainey) Yes. "Ann?" Yes. "Sowee?" (Soli?) Yes. He ran to get his shoes. I looked at Brandon in disbelief. He hadn't said their names in quite some time. Brandon became energized and suddenly we were ready to go.
Again, in the van, Xander was engaged and alert. He didn't even care that his favorite CD wasn't playing. We were living dangerously, listening to the radio. Usually that is met with sharp disapproval from a certain 2 year old.
He pointed out every truck as we went across town. He was happy in his stroller as we window shopped at an outdoor mall.
He asked for dinner. This is something that has been very spotty in the past few weeks. He has rarely asked to actually eat. Usually, we just tell him it is time. In fact, he asked specifically for french fries. He hasn't had those since December! I've never been so happy to buy him a kid's meal!
On the way home, it was quiet and dark and I started realizing just how much we had lost in just a sense of normalcy. Brandon and I have been known as very spontaneous people. It made us laugh each time we added a child and someone said "Oh that will slow you down!" It wasn't a newborn that had slowed us down. It was a very ill boy. A boy that we are still desperately seeking answers for.
But yesterday showed me just how good, good can be. It has renewed my resolve to continue to not accept this lack of answers for my precious child. I will not accept a poor quality of life for Xander and it has encouraged me to continue to demand answers on his behalf. He can't tell me exactly what hurts, or what is wrong, but he has told me plenty. And I have a big enough mouth to tell the rest of the world for him.
~Stephanie
PS: We were thrilled to find out on Friday that Xander's strep test was negative. This is great news because it means he doesn't need antibiotics that could cause another cdiff flare. I also spoke with the nutritionist at length, and I think through the sobbing on my part and an clear expression of my frustration without backing down even an inch, she finally understands what we are dealing with. Perhaps I had been too polite and accomodating before in an attempt to play by their rules and play nice. Gloves off, folks, I'm fighting for my son!
This has been the most prolonged stressful thing I have ever dealt with, by far. My pregnancy with Julianne was touch and go and we dealt with my miscarriages, but this has been prolonged stress, with zero answers. I don't like to live my life that way. Even walking the infertility road, we knew what the problem was.
I completely relate to Lainey and Julianne when they ask me questions about expectations. Both girls like to know what is going on, what is going to happen next, etc. I'm not sure if they are wired like that, or if me explaining to them (because that is how I'd want to be treated) has taught them to ask those things. But either way, I have no issues explaining to our children what to expect.
No one, no one, has been able to tell us what to expect with Xander. We get a lot of maybe, hopefully, and theoretically. And then he does something unexpected and it all starts again. This whole parenting gig has been an interesting lesson to me. Can anyone predict with certainty what they can expect out of childhood? Yeah, me either. Parenting is humbling that way.
But this whole health issue thing has taken that to another level.
Xander once again lost his speech. I fully believe that he COULD talk and was in such excruciating pain again, that he simply couldn't tolerate it. I asked him to use his words, just tell Mommy, and all I got in return was screeching and screaming and flailing about. So we lost speech and I felt that panicky feeling all over again. I think my deepest fear is that he was going to lose speech and we weren't going to get it back. Sure, he hopefully would. He theoretically should. But I've learned that there are no guarantees.
In a bout of frustration, and searching for something, anything to help him, I discovered that Prevacid contains lactose. We know he has issues with milk, soy and egg, but we aren't sure what part of the milk he has an issue with. Some people have issues with casein. Some have issues with lactose. Some have issues with milk, period. Personally I think that we fall in the milk group and so when I discussed it with Brandon we decided to discontinue the Prevacid. His last dose was Thursday. Friday, the screaming and screeching was still terrible. But Friday night things seemed to even out a bit. Xander was engaged and playful with me for about 20 minutes before supper. He sat in my lap. I tickled him and was even allowed to tickle him on his tummy. Pretty soon, he was going to play with toys and off he went. It was pure bliss. At dinner, he ate the best he's eaten in weeks. He ate REAL vegetables, not babyfood puree. And I started to feel hope rise up within me.
I prayed desperately that night, to please, please let my Xander be the same or better the next day. I tossed and turned, and read his records over and over. I begged God to just please let him be "with us" the next day. Not in a physical sense, but engaged fully. Please God, just let him be WITH me tomorrow. I fell asleep around 3 am.
Saturday, I had a whole new kiddo. Sure, we still had typical two year old meltdowns. For example, I allowed the unthinkable to happen. We ran out of bananas. So breakfast caused a disagreement because Xander was insistent he was going to have a banana that I couldn't produce out of thin air. And I've never been happier to see a typical two year old tantrum in my life!
I watched him as he played with his toys. He sat for probably about 15-20 minutes playing with various vehicles at the dining room table. I sat still, just watching our boy do what 2 year old boys do!
He ate his lunch and was a happy boy. I think I saw more smiles yesterday than what I saw for weeks previously.
Naptime brought typical tears. No two year old wants to go to sleep! "Mo-om-ma" he shouted from his bedroom. But then... he went to sleep! Imagine that!
He woke from his nap and was happy as a clam. Daddy came home shortly after and I was frantically trying to get us all ready to go out. When Brandon asked where I wanted to go, I said "ANYWHERE! I just want to go!!"
Xander heard that we were going bye, bye and his speech picked up. "Go bye bye?" he asked. Yes, Xander. "Go bye, bye with Goggy (Daddy?)" Yes, Xander. "And Mommy?" Yes sir! And Nene? (Lainey) Yes. "Ann?" Yes. "Sowee?" (Soli?) Yes. He ran to get his shoes. I looked at Brandon in disbelief. He hadn't said their names in quite some time. Brandon became energized and suddenly we were ready to go.
Again, in the van, Xander was engaged and alert. He didn't even care that his favorite CD wasn't playing. We were living dangerously, listening to the radio. Usually that is met with sharp disapproval from a certain 2 year old.
He pointed out every truck as we went across town. He was happy in his stroller as we window shopped at an outdoor mall.
He asked for dinner. This is something that has been very spotty in the past few weeks. He has rarely asked to actually eat. Usually, we just tell him it is time. In fact, he asked specifically for french fries. He hasn't had those since December! I've never been so happy to buy him a kid's meal!
On the way home, it was quiet and dark and I started realizing just how much we had lost in just a sense of normalcy. Brandon and I have been known as very spontaneous people. It made us laugh each time we added a child and someone said "Oh that will slow you down!" It wasn't a newborn that had slowed us down. It was a very ill boy. A boy that we are still desperately seeking answers for.
But yesterday showed me just how good, good can be. It has renewed my resolve to continue to not accept this lack of answers for my precious child. I will not accept a poor quality of life for Xander and it has encouraged me to continue to demand answers on his behalf. He can't tell me exactly what hurts, or what is wrong, but he has told me plenty. And I have a big enough mouth to tell the rest of the world for him.
~Stephanie
PS: We were thrilled to find out on Friday that Xander's strep test was negative. This is great news because it means he doesn't need antibiotics that could cause another cdiff flare. I also spoke with the nutritionist at length, and I think through the sobbing on my part and an clear expression of my frustration without backing down even an inch, she finally understands what we are dealing with. Perhaps I had been too polite and accomodating before in an attempt to play by their rules and play nice. Gloves off, folks, I'm fighting for my son!
Thursday, February 16, 2012
Moving Targets, Changing Rules, and a Frustrated Mama
It's 1:30 am, and I'm wide awake. I feel asleep a little after 9 mentally drained and now I can't turn my brain off.
Two days ago, we did a weight check for Xander so I reported it to the nutritionist at DuPont along with the foods we've been able to add back in.
And somehow in less than 10 days our targets moved. See, it is perfectly alright for DuPont to discharge him on only pedialyte, apples, plain white rice, bananas and saltine crackers. At our last appointment we were told we had to get him off of pedialyte and while coconut milk wasn't her first choice (soy was) that she would be happy as long as he is off of pedialyte. She even suggested that we flavor it with syrups.
Insert, the moving target. Coconut milk was frowned upon when I reported it back. Instead I was sung the praises of soy. Nothing else was acknowledged.
Anyone remember why we can't try soy?
Oh that is right! We have an intolerance issue and besides he won't touch the stuff with a 10 foot pole these days. He also won't touch rice milk, or formula or a thousand different foods.
Supposedly this nutritionist also works with the allergy clinic, but she can't seem to understand that Xander has a real problem with soy.
So I responded with a heavily edited return email. Yes, I actually took the time to take out the sarcasm, frustration and emotion from the letter and reminded her that we have issues with soy, that we are confused because at the last appointment she stressed the need to get him off of pedialyte and told her we were frustrated that we aren't getting more encouragement since nothing was addressed other than the coconut milk.
That email was sent on Wednesday afternoon and I've yet to receive one in return.
Sigh... just another letdown from the medical community.
Let's talk changing rules. Xander changes what he will actually eat from day to day, but cannot effectively communicate this to me. He communicates but unfortunately, no matter how long he does it, screeching, screaming, crying and flailing about just is impossible for me to decipher. One day chicken is fine, the next day he won't touch it. One day rice is fine, three days later he won't touch it.
But he has halted on trying new foods as well. So the foods that have been our standby in the hospital and at home are now touch and go. And somehow I'm supposed to watch this, live through it and be okay with it.
Not happening.
So instead we get a frustrated mama. A mama that cries bucketfuls of tears. And yet, STILL, no one will help us.
Tonight in a moment of desperation, Brandon called the on call for our gastro at DuPont. We were told that if he won't eat or drink that we should take him to the ER. Brandon explained that Xander is not dehydrated and he was discharged like this (actually in worse condition.)
And somehow, the gastro on call couldn't get it through her thick head that no matter how many thousands of dollars in medical bills we have, and how many ER's we go to, NOTHING ever seems to change. We NEVER get answers. In fact, every time anyone medical does anything, he ends up WORSE than when we started.
Her advice? If you think he needs seen now, go to the ER.
Nice.. another broken record.
So now, our gastro is supposed to call us in the morning. I don't know what he intends to do or what he will say. Afterall, EVERY expectation or goal or whatever set by these people changes without our knowledge and yet NOTHING continues to be done.
And I can't get anyone to understand that we are NOT okay with that.
NOT, NOT, NOT.
I refuse to believe that we are the only parents out there that are upset that we can't find help for our son.
Two days ago, we did a weight check for Xander so I reported it to the nutritionist at DuPont along with the foods we've been able to add back in.
And somehow in less than 10 days our targets moved. See, it is perfectly alright for DuPont to discharge him on only pedialyte, apples, plain white rice, bananas and saltine crackers. At our last appointment we were told we had to get him off of pedialyte and while coconut milk wasn't her first choice (soy was) that she would be happy as long as he is off of pedialyte. She even suggested that we flavor it with syrups.
Insert, the moving target. Coconut milk was frowned upon when I reported it back. Instead I was sung the praises of soy. Nothing else was acknowledged.
Anyone remember why we can't try soy?
Oh that is right! We have an intolerance issue and besides he won't touch the stuff with a 10 foot pole these days. He also won't touch rice milk, or formula or a thousand different foods.
Supposedly this nutritionist also works with the allergy clinic, but she can't seem to understand that Xander has a real problem with soy.
So I responded with a heavily edited return email. Yes, I actually took the time to take out the sarcasm, frustration and emotion from the letter and reminded her that we have issues with soy, that we are confused because at the last appointment she stressed the need to get him off of pedialyte and told her we were frustrated that we aren't getting more encouragement since nothing was addressed other than the coconut milk.
That email was sent on Wednesday afternoon and I've yet to receive one in return.
Sigh... just another letdown from the medical community.
Let's talk changing rules. Xander changes what he will actually eat from day to day, but cannot effectively communicate this to me. He communicates but unfortunately, no matter how long he does it, screeching, screaming, crying and flailing about just is impossible for me to decipher. One day chicken is fine, the next day he won't touch it. One day rice is fine, three days later he won't touch it.
But he has halted on trying new foods as well. So the foods that have been our standby in the hospital and at home are now touch and go. And somehow I'm supposed to watch this, live through it and be okay with it.
Not happening.
So instead we get a frustrated mama. A mama that cries bucketfuls of tears. And yet, STILL, no one will help us.
Tonight in a moment of desperation, Brandon called the on call for our gastro at DuPont. We were told that if he won't eat or drink that we should take him to the ER. Brandon explained that Xander is not dehydrated and he was discharged like this (actually in worse condition.)
And somehow, the gastro on call couldn't get it through her thick head that no matter how many thousands of dollars in medical bills we have, and how many ER's we go to, NOTHING ever seems to change. We NEVER get answers. In fact, every time anyone medical does anything, he ends up WORSE than when we started.
Her advice? If you think he needs seen now, go to the ER.
Nice.. another broken record.
So now, our gastro is supposed to call us in the morning. I don't know what he intends to do or what he will say. Afterall, EVERY expectation or goal or whatever set by these people changes without our knowledge and yet NOTHING continues to be done.
And I can't get anyone to understand that we are NOT okay with that.
NOT, NOT, NOT.
I refuse to believe that we are the only parents out there that are upset that we can't find help for our son.
Tuesday, February 14, 2012
Another Loop..
Sunday, we were so excited Xander ate about 10 fresh blueberries. Before all of this craziness, Xander would eat blueberries on top of his coconut yogurt. I thought we were getting somewhere!
And then the screaming started. It was so bad, that I met a friend up at Starbucks for a little sanity break. (Don't worry, Brandon held down the fort!)
Monday, I woke up at 5 am with a sinus headache. I was congested and sneezing my head off. I couldn't go back to sleep.
And then the screaming continued when Xander woke up. That afternoon, Xander had a bad diaper with chunks of undigested blueberries in it.
Sooooo, blueberries are now on the No No List.
In the meantime, Solomon spiked a fever.
I was begging time to hurry up, so Brandon would be home. But I managed to hold down the fort until Brandon came home at 9pm.
Sigh...
Then we noticed that Xander had broken out in a rash in his diaper area. We can't recall Xander ever running a fever (in his WHOLE life!), but fever followed by a rash is a symptom of strep. Plus Solomon was refusing to eat. So this morning we called and got the boys appointments with our family doctor.
We went in and our doctor immediately seemed concerned. I mean, we just don't show up for fevers usually. We are more in the camp of letting things run their course while watching carefully for concerning symptoms (dehydration, difficulty breathing, wheezing, etc.) , after all most appointments with a complaint of fever result in you paying a copay to find out your child has a virus/cold, which must run it's course. Our doctor has joked many times that he wished he had more patients like us. LOL!
Needless to say, when we showed up, he knew we had some concerns. We discussed the blueberries, the rash, the fever, and the runny noses. We also found out on the way there that Xander had a productive cough.
Ears and lungs were fine. So we ran a quick strep test that came back negative. The quick test only finds about 75% of strep so we also sent out a 72 hour culture. Some doctors would start antibiotics while we wait, but our doctor isn't quick to jump to antibiotics and the history of cdiff also makes starting antibiotics risky.
So for now we are NOT using antibiotics until we know FOR SURE that we have strep.
In the meantime, there is a chance that Xander's rash is a yeast rash, caused by the antibiotics that he took for the cdiff. So we are going to use an anti-fungal on it and see if that clears it up.
See the circle we can't seem to get out of?
While we were there, we completed a weight check on Xander. He was 2 ounces less than the appointment we had two weeks ago.
Our doctor isn't overly concerned about that. I mean, he is concerned he isn't growing in the big picture, but he isn't panicking about the 2 ounces especially since he is currently sick. Our next weight check will be done in 4 weeks.
While we were there, we also asked about the genetic (blood) test for cystic fibrosis. He said that he would be willing to order it for us, and write a letter of medical necessity. Basically, he has to make a case for our insurance to cover it since the sweat chloride test is the "gold standard." We've tried that,twice, and he just doesn't sweat. He doesn't think it will be an issue to have it approved, but he wanted to wait to have it drawn until Xander felt a little better.
Tonight, I emailed the nutritionist with the 2 week check-in information and I'm eager to see what she thinks. I am nervous that she will be more concerned about the weight loss than our doctor was, but we are trying our hardest to do what we can.
Tomorrow we will have Xander re-tested to make sure the cdiff is gone.
Here are our big prayer requests:
1. That Xander tests NEGATIVE for cdiff and that it is an accurate reading.
2. That Xander does NOT have strep and therefore won't need the antibiotics that could encourage his cdiff to return.
3. That the nutritionist sees the effort we are putting in Xander's diet and is encouraging.
4. That Xander does NOT have cystic fibrosis. This will give us something that we can officially rule out.
Thanks!
Stephanie
And then the screaming started. It was so bad, that I met a friend up at Starbucks for a little sanity break. (Don't worry, Brandon held down the fort!)
Monday, I woke up at 5 am with a sinus headache. I was congested and sneezing my head off. I couldn't go back to sleep.
And then the screaming continued when Xander woke up. That afternoon, Xander had a bad diaper with chunks of undigested blueberries in it.
Sooooo, blueberries are now on the No No List.
In the meantime, Solomon spiked a fever.
I was begging time to hurry up, so Brandon would be home. But I managed to hold down the fort until Brandon came home at 9pm.
Sigh...
Then we noticed that Xander had broken out in a rash in his diaper area. We can't recall Xander ever running a fever (in his WHOLE life!), but fever followed by a rash is a symptom of strep. Plus Solomon was refusing to eat. So this morning we called and got the boys appointments with our family doctor.
We went in and our doctor immediately seemed concerned. I mean, we just don't show up for fevers usually. We are more in the camp of letting things run their course while watching carefully for concerning symptoms (dehydration, difficulty breathing, wheezing, etc.) , after all most appointments with a complaint of fever result in you paying a copay to find out your child has a virus/cold, which must run it's course. Our doctor has joked many times that he wished he had more patients like us. LOL!
Needless to say, when we showed up, he knew we had some concerns. We discussed the blueberries, the rash, the fever, and the runny noses. We also found out on the way there that Xander had a productive cough.
Ears and lungs were fine. So we ran a quick strep test that came back negative. The quick test only finds about 75% of strep so we also sent out a 72 hour culture. Some doctors would start antibiotics while we wait, but our doctor isn't quick to jump to antibiotics and the history of cdiff also makes starting antibiotics risky.
So for now we are NOT using antibiotics until we know FOR SURE that we have strep.
In the meantime, there is a chance that Xander's rash is a yeast rash, caused by the antibiotics that he took for the cdiff. So we are going to use an anti-fungal on it and see if that clears it up.
See the circle we can't seem to get out of?
While we were there, we completed a weight check on Xander. He was 2 ounces less than the appointment we had two weeks ago.
Our doctor isn't overly concerned about that. I mean, he is concerned he isn't growing in the big picture, but he isn't panicking about the 2 ounces especially since he is currently sick. Our next weight check will be done in 4 weeks.
While we were there, we also asked about the genetic (blood) test for cystic fibrosis. He said that he would be willing to order it for us, and write a letter of medical necessity. Basically, he has to make a case for our insurance to cover it since the sweat chloride test is the "gold standard." We've tried that,twice, and he just doesn't sweat. He doesn't think it will be an issue to have it approved, but he wanted to wait to have it drawn until Xander felt a little better.
Tonight, I emailed the nutritionist with the 2 week check-in information and I'm eager to see what she thinks. I am nervous that she will be more concerned about the weight loss than our doctor was, but we are trying our hardest to do what we can.
Tomorrow we will have Xander re-tested to make sure the cdiff is gone.
Here are our big prayer requests:
1. That Xander tests NEGATIVE for cdiff and that it is an accurate reading.
2. That Xander does NOT have strep and therefore won't need the antibiotics that could encourage his cdiff to return.
3. That the nutritionist sees the effort we are putting in Xander's diet and is encouraging.
4. That Xander does NOT have cystic fibrosis. This will give us something that we can officially rule out.
Thanks!
Stephanie
Sunday, February 12, 2012
A Rough Time...
This weekend, the determined me went looking through our medical records and replaying every conversation in my head with the various medical professionals we came in contact with.
I remembered several doctors asking us if Xander had ever been tested for cystic fibrosis.
I remembered trying to complete the sweat chloride test for Xander and twice him not sweating enough.
I remembered the ER doc at DuPont asking us about cystic fibrosis testing.
I remembered two residents asking us about cystic fibrosis testing.
And our family doctor perking up when we mentioned we did cystic fibrosis testing and the letdown on his face when we told him he didn't sweat enough.
And then I went through the screening questions from the gastroenterologist at DuPont and realized a lot of those were searching for... cystic fibrosis symptoms.
So.. I did it. I looked up cystic fibrosis.
And then I broke down into uncontrollable tears and shut myself in our bedroom and cried facedown into a pillow.
I looked up the odds of a biracial child having cystic fibrosis and didn't find much encouragement. I looked up if the fact that he didn't sweat enough would rule it out for us, and unfortunately it does not. I tried to comfort myself with the fact that he doesn't have frequent bronchitis and pneumonia, but then he does frequently have colds. Then I read that respiratory illnesses and/or gastro symptoms are usually common.
Other symptoms that Xander has that are also found in cystic fibrosis patients include:
Vitamin deficiency- Xander is low in Vitamin D.
GI symptoms- Diarrhea, large/frequent stools, mucus in stools, constipation, bloating
Slow/No growth- usually despite eating large amounts... which he was before we put Xander on elemental formula per the allergist.
I also found that while the sweat chloride test is considered the "gold standard" in diagnosis, some doctors will do genetic tests if there are issues with the sweat chloride results (like not sweating enough.)
And then panic set in. I know it was premature, but this is my blog, where I share my innermost thoughts. The day I can't be real on my blog, is the day I shut it down.
I tried to act like I had it altogether when Brandon called home from work. But he knew something was up within seconds of me answering the call. So I spilled the beans.
No mother HOPES for cystic fibrosis. I certainly am not. I *DO* want to know how to best help Xander, but I do not want it to be cystic fibrosis.
Tomorrow, I will contact the geneticist at DuPont to see if Xander is already being tested for cystic fibrosis. She only seemed interested in Xander's "atypical birthmarks" and admitted she may not ever find us an answer for that. In fact, she told us that she wasn't even going to touch his gastro issues.
If she isn't running it, I will phone our family doc and see what he thinks.
At least if he tests negative, we can officially rule it out. Right now we have two tests that were run that have no results! Two question marks.
I've been reminded by a sweet friend, that *we* are Xander's best advocate. Sometimes that seems overwhelming. It is an awesome amount of responsibility. But if we won't do it who will?
Today, I felt overwhelmed. I wanted to pull the covers over my head. This evening, I had the opportunity to chat with a friend. She reminded me that God already knows what Xander has or doesn't have. NOTHING changed with God when I read the information about cystic fibrosis last night. He is still my rock. When a day at a time seems to be too much, I'll break it into hours, minutes, seconds and that God will help me. He hasn't left me! He loves me and Xander.
And another day comes to a close. Tonight I'll lie in bed and count my blessings, taking slow, deep breaths hoping for the best. But no matter what, we ARE going to make it through all of this...with God's help!
~Stephanie
I remembered several doctors asking us if Xander had ever been tested for cystic fibrosis.
I remembered trying to complete the sweat chloride test for Xander and twice him not sweating enough.
I remembered the ER doc at DuPont asking us about cystic fibrosis testing.
I remembered two residents asking us about cystic fibrosis testing.
And our family doctor perking up when we mentioned we did cystic fibrosis testing and the letdown on his face when we told him he didn't sweat enough.
And then I went through the screening questions from the gastroenterologist at DuPont and realized a lot of those were searching for... cystic fibrosis symptoms.
So.. I did it. I looked up cystic fibrosis.
And then I broke down into uncontrollable tears and shut myself in our bedroom and cried facedown into a pillow.
I looked up the odds of a biracial child having cystic fibrosis and didn't find much encouragement. I looked up if the fact that he didn't sweat enough would rule it out for us, and unfortunately it does not. I tried to comfort myself with the fact that he doesn't have frequent bronchitis and pneumonia, but then he does frequently have colds. Then I read that respiratory illnesses and/or gastro symptoms are usually common.
Other symptoms that Xander has that are also found in cystic fibrosis patients include:
Vitamin deficiency- Xander is low in Vitamin D.
GI symptoms- Diarrhea, large/frequent stools, mucus in stools, constipation, bloating
Slow/No growth- usually despite eating large amounts... which he was before we put Xander on elemental formula per the allergist.
I also found that while the sweat chloride test is considered the "gold standard" in diagnosis, some doctors will do genetic tests if there are issues with the sweat chloride results (like not sweating enough.)
And then panic set in. I know it was premature, but this is my blog, where I share my innermost thoughts. The day I can't be real on my blog, is the day I shut it down.
I tried to act like I had it altogether when Brandon called home from work. But he knew something was up within seconds of me answering the call. So I spilled the beans.
No mother HOPES for cystic fibrosis. I certainly am not. I *DO* want to know how to best help Xander, but I do not want it to be cystic fibrosis.
Tomorrow, I will contact the geneticist at DuPont to see if Xander is already being tested for cystic fibrosis. She only seemed interested in Xander's "atypical birthmarks" and admitted she may not ever find us an answer for that. In fact, she told us that she wasn't even going to touch his gastro issues.
If she isn't running it, I will phone our family doc and see what he thinks.
At least if he tests negative, we can officially rule it out. Right now we have two tests that were run that have no results! Two question marks.
I've been reminded by a sweet friend, that *we* are Xander's best advocate. Sometimes that seems overwhelming. It is an awesome amount of responsibility. But if we won't do it who will?
Today, I felt overwhelmed. I wanted to pull the covers over my head. This evening, I had the opportunity to chat with a friend. She reminded me that God already knows what Xander has or doesn't have. NOTHING changed with God when I read the information about cystic fibrosis last night. He is still my rock. When a day at a time seems to be too much, I'll break it into hours, minutes, seconds and that God will help me. He hasn't left me! He loves me and Xander.
And another day comes to a close. Tonight I'll lie in bed and count my blessings, taking slow, deep breaths hoping for the best. But no matter what, we ARE going to make it through all of this...with God's help!
~Stephanie
Friday, February 10, 2012
More Fingerprints...
Brandon and I are just in awe as we watch our family. The task of raising four (soon to be five!) little blessings really feels like too much for two people to do alone-- but we have God's help and He is so good to us!
His provision is great and it always has been. The more we trust and walk this road, the more He shows Himself to us in little and BIG things.
Here are just a few of the ways that He has shown Himself through our most recent trials.
1. Our family doctor was just speechless when we went in for our last weight check. He said he was embarrassed by the way that various medical professionals have treated us. When I left, I left with his business card in tucked away in my wallet, with his cell phone number written on the back. Now, we've been through a lot of doctors with insurance changes and moving and I have never received a doctor's cell phone number, ever. He trusts us to use it responsibly and we will. But if we are ever in a pinch again... we have it. Our doctor has also told us if we call to get an appointment for Xander and we are told he is booked, to call his voicemail and leave a message. He wants Xander to have continuity of care and prefers that he is the one to see him all the time, rather than his partners. (Not that there is anything wrong with his partners, but Xander's case is a bit complicated.)
2. Our church has been amazing to us. I do not find it a coincidence that we floundered searching for a church home for so long after moving here, yet all this unfolded as soon as we were settled in our church. Cool Spring's people are amazing. They have really stepped up and gone above and beyond anything we could have imagined. Prayers, dinners, hospital visits, phone calls, surprises, really... we are so blessed. I'm often moved to tears when I think about it, and ask God to let them reap far more than they have sown into us.
3. Due to the way things played out, my Auntie Karon was here for Lainey's birthday this year. Last year, she was able to either meet up with us or be here for Julianne's and Xander's birthdays. And she was here shortly after Solomon was born. But this year, Lainey had her Auntie Karon in attendance and she was so excited!
4. Due to Xander's medicines all needing compounded, we have met the most amazing pharmacist. We had to go to the little pharmacy in our little town to have Xander's prescriptions compounded, but the pharmacist read the prescriptions and stopped to ask me "What is going on with little Xander?" I explained the saga, and he was very encouraging and helpful. As I waited for the prescriptions, I got to see him interact with other customers and he was just as kind to each of them. Now, I'll drive out of my way to get to that pharmacy.
5. Xander is coming around. Slow but steady wins the race! It is exciting to watch his personality come back along with his willingness to eat a wider variety of foods. We still aren't at the goal, but we are making progress. His diapers are much better than they have ever been before, even though he has lots (!!!) of dirty diapers each day. Still, I'm clinging to the progress. We've come so far, Baby!
6. Our adoption worker from Xander's adoption agency has really stood by our side. She is always so amazed at the lengths we are willing to go to care for our children. Anyway, we were approached about an adoption situation and before anyone has a heart attack, we let her know that right now the timing just isn't right. We also let her know what was going on with Xander, and she was very compassionate and looked back through the file to see if she had any kind of medical clues for us to help. She also said that if we ever really, really needed to have some additional questions answered by his birthmom that she would be willing to facilitate that for us. She is a Believer and is praying very hard for our son. Xander captured her heart when he was born and he still has a grip on it. She literally dances in the lobby when I stop by with pictures of Xander but her favorite times for us to stop by are when we walk in with him. She just adores him. She isn't in the adoption field for the money, it is truly her calling. <3 her!
We do have a new prayer request though. We have to call around to various labs and attempt to find a lab that does a certain test for Cdiff. It is more sensitive than the test that was done at St. Mary's. If we can have this one test done, it will be so much more accurate for us. If we cannot find someone that does this test (closer than driving back to DuPont to drop off a dirty diaper!) then we have to do the other test, which requires three samples and still is not as sensitive.
Please pray we find someone to do the sensitive test. I have orders for both, just in case, but it would really set me at ease to see the results from the sensitive test. This will be my task on Monday so we have a few days to pray! (He can be tested from Tuesday to Friday next week.)
Father, You still amaze me! The way that You take care of the details, before we even know what we need continues to amaze us. We love You and are so blessed to have the opportunity to raise FIVE children to know and love You. Your fingerprints are so evident in our lives. Continue to keep our eyes open, especially when things get tough, so that we can see Your presence! Love You and praise You, Amen!
~Stephanie
His provision is great and it always has been. The more we trust and walk this road, the more He shows Himself to us in little and BIG things.
Here are just a few of the ways that He has shown Himself through our most recent trials.
1. Our family doctor was just speechless when we went in for our last weight check. He said he was embarrassed by the way that various medical professionals have treated us. When I left, I left with his business card in tucked away in my wallet, with his cell phone number written on the back. Now, we've been through a lot of doctors with insurance changes and moving and I have never received a doctor's cell phone number, ever. He trusts us to use it responsibly and we will. But if we are ever in a pinch again... we have it. Our doctor has also told us if we call to get an appointment for Xander and we are told he is booked, to call his voicemail and leave a message. He wants Xander to have continuity of care and prefers that he is the one to see him all the time, rather than his partners. (Not that there is anything wrong with his partners, but Xander's case is a bit complicated.)
2. Our church has been amazing to us. I do not find it a coincidence that we floundered searching for a church home for so long after moving here, yet all this unfolded as soon as we were settled in our church. Cool Spring's people are amazing. They have really stepped up and gone above and beyond anything we could have imagined. Prayers, dinners, hospital visits, phone calls, surprises, really... we are so blessed. I'm often moved to tears when I think about it, and ask God to let them reap far more than they have sown into us.
3. Due to the way things played out, my Auntie Karon was here for Lainey's birthday this year. Last year, she was able to either meet up with us or be here for Julianne's and Xander's birthdays. And she was here shortly after Solomon was born. But this year, Lainey had her Auntie Karon in attendance and she was so excited!
4. Due to Xander's medicines all needing compounded, we have met the most amazing pharmacist. We had to go to the little pharmacy in our little town to have Xander's prescriptions compounded, but the pharmacist read the prescriptions and stopped to ask me "What is going on with little Xander?" I explained the saga, and he was very encouraging and helpful. As I waited for the prescriptions, I got to see him interact with other customers and he was just as kind to each of them. Now, I'll drive out of my way to get to that pharmacy.
5. Xander is coming around. Slow but steady wins the race! It is exciting to watch his personality come back along with his willingness to eat a wider variety of foods. We still aren't at the goal, but we are making progress. His diapers are much better than they have ever been before, even though he has lots (!!!) of dirty diapers each day. Still, I'm clinging to the progress. We've come so far, Baby!
6. Our adoption worker from Xander's adoption agency has really stood by our side. She is always so amazed at the lengths we are willing to go to care for our children. Anyway, we were approached about an adoption situation and before anyone has a heart attack, we let her know that right now the timing just isn't right. We also let her know what was going on with Xander, and she was very compassionate and looked back through the file to see if she had any kind of medical clues for us to help. She also said that if we ever really, really needed to have some additional questions answered by his birthmom that she would be willing to facilitate that for us. She is a Believer and is praying very hard for our son. Xander captured her heart when he was born and he still has a grip on it. She literally dances in the lobby when I stop by with pictures of Xander but her favorite times for us to stop by are when we walk in with him. She just adores him. She isn't in the adoption field for the money, it is truly her calling. <3 her!
We do have a new prayer request though. We have to call around to various labs and attempt to find a lab that does a certain test for Cdiff. It is more sensitive than the test that was done at St. Mary's. If we can have this one test done, it will be so much more accurate for us. If we cannot find someone that does this test (closer than driving back to DuPont to drop off a dirty diaper!) then we have to do the other test, which requires three samples and still is not as sensitive.
Please pray we find someone to do the sensitive test. I have orders for both, just in case, but it would really set me at ease to see the results from the sensitive test. This will be my task on Monday so we have a few days to pray! (He can be tested from Tuesday to Friday next week.)
Father, You still amaze me! The way that You take care of the details, before we even know what we need continues to amaze us. We love You and are so blessed to have the opportunity to raise FIVE children to know and love You. Your fingerprints are so evident in our lives. Continue to keep our eyes open, especially when things get tough, so that we can see Your presence! Love You and praise You, Amen!
~Stephanie
Tuesday, February 7, 2012
Some Theories but not Any Real Answers... Yet!
Sorry I'm just getting around to posting this! Last night, we came home and turned into ooze as soon as we sat on the couch.
So we saw a new to us gastroenterologist at DuPont yesterday. Some things he told us contradicted what we were previously told by the attending doctors on the floor.
He thinks that there are three major issues we could be fighting. And since Xander's diapers actually look normal (!!!!!) right now, we have to wait to see if we fixed the problem(s) or if his limited diet has helped control the diarrhea. (Most of the foods he is willing to eat are known to actually be constipating.)
First, Dr. S says that there is a possibility that Xander has had a Cdiff infection for quite some time. We were told that this would have been impossible, but according to Dr. S it is much more possible than we were originally told.
The second possibility is that Xander has suffered from an overgrowth of bacteria in his small bowel since he was 6 months old and then he also got Cdiff. Flagyl is used to treat overgrowths of bacteria so we could be fixing two things at once, unknowingly.
The third possibility is that Xander has something else going on and we would need to do further procedures to investigate that.
I know this seems rather broad but we are THRILLED to actually have someone discussing possibilities with us and making a plan.
So what's the plan?
First, Xander completes his medication for cdiff today. In 7-10 days we are going to have him retested to see if the cdiff is completely cleared. We are also going to keep a food diary and see what his diapers look like. If the cdiff is still there, we will have to retreat it with another round of antibiotics. If the diarrhea comes back, but the cdiff test is negative, we are going to arrange to do an endoscopy and a flexible sigmoidoscopy. They will also take samples to test enzymes. Dr. S prefers a flexible sigmoidoscopy over a colonoscopy because the extensive laxative prep isn't needed before a flexible sigmoidoscopy.
If Xander tests negative for cdiff and the diarrhea doesn't come back as he expands his diet then we are done even though we will never know for sure if it was a chronic infection of cdiff or an acute case of cdiff along with an overgrowth of bacteria. We would be thrilled even if we never find out "what" caused the issue.
With all that said, I cracked open our adoption file the night before we drove to Delaware to see what Xander's bowel habits were when he was in the hospital. According to those records, he had 5-8 bowel movements a day starting at birth. When we mentioned this to Dr. S, he said that information leads him to believe that we have something else going on that has been there since before the diarrhea started at 6 months old. If he had to guess, we ultimately will end up doing the endoscopy and the flexible sigmoidoscopy.
We are okay with this. We know it isn't a for sure, A then B then C kind of plan, but this is the closest thing we have ever gotten to a plan. We left that appointment encouraged.
Next we had an appointment with a dietitian. ALL of our prayers were met about this appointment and we quickly relaxed. The last nutritionist just sighed at the end of our conversation and said "Well, I guess we will have to use an NG tube." I was very upset about that because I felt that all the possibilities hadn't been exhausted. I wanted to know that we had done everything possible before we discussed an NG tube. Afterall, it had only been a week between hospital discharge and our appointment in Delaware.
Our new dietitian has the same thoughts. She said her timeline is more like 2 months. She believes that in 2 months we can see what Xander is willing to take. We will have the opportunity to exhaust our options and try everything we can to get him eating better.
She gave us some ideas to try and we are going to be in contact with her often to see if we can tweak things over the phone and via email. We are going to continue doing the weight checks with our local doctor and will report those back to her as well. This is exactly what we were praying for.
All in all, we felt like these two appointments were worth the drive and our time. We were pleased with our interactions with the gastroenterologist and the dietitian. So now we work on his nutrition and wait to do our lab tests for cdiff.
Thank you for your prayers. They were definitely felt yesterday as we drove and during our appointments.
~Stephanie
So we saw a new to us gastroenterologist at DuPont yesterday. Some things he told us contradicted what we were previously told by the attending doctors on the floor.
He thinks that there are three major issues we could be fighting. And since Xander's diapers actually look normal (!!!!!) right now, we have to wait to see if we fixed the problem(s) or if his limited diet has helped control the diarrhea. (Most of the foods he is willing to eat are known to actually be constipating.)
First, Dr. S says that there is a possibility that Xander has had a Cdiff infection for quite some time. We were told that this would have been impossible, but according to Dr. S it is much more possible than we were originally told.
The second possibility is that Xander has suffered from an overgrowth of bacteria in his small bowel since he was 6 months old and then he also got Cdiff. Flagyl is used to treat overgrowths of bacteria so we could be fixing two things at once, unknowingly.
The third possibility is that Xander has something else going on and we would need to do further procedures to investigate that.
I know this seems rather broad but we are THRILLED to actually have someone discussing possibilities with us and making a plan.
So what's the plan?
First, Xander completes his medication for cdiff today. In 7-10 days we are going to have him retested to see if the cdiff is completely cleared. We are also going to keep a food diary and see what his diapers look like. If the cdiff is still there, we will have to retreat it with another round of antibiotics. If the diarrhea comes back, but the cdiff test is negative, we are going to arrange to do an endoscopy and a flexible sigmoidoscopy. They will also take samples to test enzymes. Dr. S prefers a flexible sigmoidoscopy over a colonoscopy because the extensive laxative prep isn't needed before a flexible sigmoidoscopy.
If Xander tests negative for cdiff and the diarrhea doesn't come back as he expands his diet then we are done even though we will never know for sure if it was a chronic infection of cdiff or an acute case of cdiff along with an overgrowth of bacteria. We would be thrilled even if we never find out "what" caused the issue.
With all that said, I cracked open our adoption file the night before we drove to Delaware to see what Xander's bowel habits were when he was in the hospital. According to those records, he had 5-8 bowel movements a day starting at birth. When we mentioned this to Dr. S, he said that information leads him to believe that we have something else going on that has been there since before the diarrhea started at 6 months old. If he had to guess, we ultimately will end up doing the endoscopy and the flexible sigmoidoscopy.
We are okay with this. We know it isn't a for sure, A then B then C kind of plan, but this is the closest thing we have ever gotten to a plan. We left that appointment encouraged.
Next we had an appointment with a dietitian. ALL of our prayers were met about this appointment and we quickly relaxed. The last nutritionist just sighed at the end of our conversation and said "Well, I guess we will have to use an NG tube." I was very upset about that because I felt that all the possibilities hadn't been exhausted. I wanted to know that we had done everything possible before we discussed an NG tube. Afterall, it had only been a week between hospital discharge and our appointment in Delaware.
Our new dietitian has the same thoughts. She said her timeline is more like 2 months. She believes that in 2 months we can see what Xander is willing to take. We will have the opportunity to exhaust our options and try everything we can to get him eating better.
She gave us some ideas to try and we are going to be in contact with her often to see if we can tweak things over the phone and via email. We are going to continue doing the weight checks with our local doctor and will report those back to her as well. This is exactly what we were praying for.
All in all, we felt like these two appointments were worth the drive and our time. We were pleased with our interactions with the gastroenterologist and the dietitian. So now we work on his nutrition and wait to do our lab tests for cdiff.
Thank you for your prayers. They were definitely felt yesterday as we drove and during our appointments.
~Stephanie
Sunday, February 5, 2012
Bee #5
All was well at my appointment on Friday! Baby was very active and measuring larger than my dates. This is normal for me. My babies seem to grow ahead in the beginning, then slow down a bit at the end right before they come early. God knits babies perfectly.
My blood pressure was a bit elevated compared to my normal. It was still within normal range. I usually run a bit low and correct that with increased salt intake so I don't feel so weak. My OB is aware of the issues we are going through and will monitor my care.
I was excited to make plans with our doctor for the pregnancy. We are planning another VBAC and I went ahead and signed the papers acknowledging the "risks." My doctor laughed as I told him that a csection came with risks and so did walking in the parking lot to get to my van.
We will be doing one thing a little differently this pregnancy. I will be skipping the 1 hour gestational diabetes test this pregnancy. I always barely fail it and end up taking the 3 hour test. But I really despise drinking the nasty syrup so my doctor will allow me to skip the 1 hour (that I always fail anyway) and go straight to the 3 hour.
We were so relieved!
~Stephanie
My blood pressure was a bit elevated compared to my normal. It was still within normal range. I usually run a bit low and correct that with increased salt intake so I don't feel so weak. My OB is aware of the issues we are going through and will monitor my care.
I was excited to make plans with our doctor for the pregnancy. We are planning another VBAC and I went ahead and signed the papers acknowledging the "risks." My doctor laughed as I told him that a csection came with risks and so did walking in the parking lot to get to my van.
We will be doing one thing a little differently this pregnancy. I will be skipping the 1 hour gestational diabetes test this pregnancy. I always barely fail it and end up taking the 3 hour test. But I really despise drinking the nasty syrup so my doctor will allow me to skip the 1 hour (that I always fail anyway) and go straight to the 3 hour.
We were so relieved!
~Stephanie
Thursday, February 2, 2012
Always, Forever and No Matter What
Today has been tedious.
We finally got our records from our local gastroenterologist (the one that did the endoscopy.) I fumed as I read the records because it is so far from what happened. Things are so misconstrued I had to double check to see if we got the right chart!
Then we headed to our Primary Care Provider for a weight check. He was just speechless as we laid out the whole story. He said he was embarrassed we had been let down by so many medical professionals.
We brainstormed a few foods to try to get Xander to eat in a last ditch effort to prevent an NG tube from being placed on Monday. He told us he doesn't care what Xander eats. That now calories matter more than basic nutrition. So we'll attempt those things.
Our little Xander is terrified of medical settings now. Even putting a thermometer under his arm is met with hysteria. It is heartbreaking to watch our outgoing guy turn into a fearful, withdrawn child. He all out refused to sit on the examination table today.
Our doctor thinks that Xander limiting his intake is a combination of Xander trying to control the situation due to the pain and trauma and that perhaps he is now psychologically averse to eating.
He explained it like this: If you had severe food poisoning from say, tuna salad, after you recovered would you want tuna salad? Or if you happened to catch a stomach flu and vomited your mexican takeout, would you be in a hurry to eat mexican again?
It was hard to hear and to think that the one thing that every human must do to live (eat) is the one thing he may be truly terrified to do. My heart just shattered in bits as I wondered what is going on in his little head.
I'm so worn down. Brandon is concerned so he called my OB and let them know what was going on. Tomorrow, I have an appointment. Knowing the baby is doing okay, would relieve a burden for me. Would you pray for my appointment tomorrow? I am having an ultrasound and will discuss with the doctor the stress that we are currently under.
The children are returning Saturday! I'm so happy about this. I was meant to be a mama to many. The house here is so quiet and lonely. I am NOT one to look forward to an empty nest.
I can't wait to smother them in kisses and have them smother me too! I think seeing all their little faces will help my spirits.
Sunday, we will be celebrating DeLainey's 9th birthday even though her true birthday is Monday. It is hard to believe I've been a mama for 9 years! We have a big surprise up our sleeves for this birthday and I can't wait to see her face!
Monday, Brandon and I will be waking up bright and early to beat DC traffic on our way to Wilmington. We have two appointments there and hopefully will be able to return home that afternoon. If we end up going the NG tube route, Xander will have to stay for observation to make sure he can tolerate it. My aunt will be here with the other three children.
While I expressed frustration and annoyance with going the NG route in my last post, I don't want to be misunderstood. I want Xander better and I'm willing to do whatever it takes. Part of me just feels like this will be a band aid and no one will look any deeper. I've lost a lot of trust for the medical community and I'm just a little gunshy. I had a little chat with a medical professional friend and she gently reminded me that NG tubes aren't the end of the world and that they are temporary. She said that this could possibly relieve some of our daily worry about his intake. I get that. But as his mama, I also want a long term solution. I'm willing to do whatever it takes to see that my children reach their full potential.
I love each of them and I tell them several times a day. I love them, always, forever and no matter what.
~Stephanie
We finally got our records from our local gastroenterologist (the one that did the endoscopy.) I fumed as I read the records because it is so far from what happened. Things are so misconstrued I had to double check to see if we got the right chart!
Then we headed to our Primary Care Provider for a weight check. He was just speechless as we laid out the whole story. He said he was embarrassed we had been let down by so many medical professionals.
We brainstormed a few foods to try to get Xander to eat in a last ditch effort to prevent an NG tube from being placed on Monday. He told us he doesn't care what Xander eats. That now calories matter more than basic nutrition. So we'll attempt those things.
Our little Xander is terrified of medical settings now. Even putting a thermometer under his arm is met with hysteria. It is heartbreaking to watch our outgoing guy turn into a fearful, withdrawn child. He all out refused to sit on the examination table today.
Our doctor thinks that Xander limiting his intake is a combination of Xander trying to control the situation due to the pain and trauma and that perhaps he is now psychologically averse to eating.
He explained it like this: If you had severe food poisoning from say, tuna salad, after you recovered would you want tuna salad? Or if you happened to catch a stomach flu and vomited your mexican takeout, would you be in a hurry to eat mexican again?
It was hard to hear and to think that the one thing that every human must do to live (eat) is the one thing he may be truly terrified to do. My heart just shattered in bits as I wondered what is going on in his little head.
I'm so worn down. Brandon is concerned so he called my OB and let them know what was going on. Tomorrow, I have an appointment. Knowing the baby is doing okay, would relieve a burden for me. Would you pray for my appointment tomorrow? I am having an ultrasound and will discuss with the doctor the stress that we are currently under.
The children are returning Saturday! I'm so happy about this. I was meant to be a mama to many. The house here is so quiet and lonely. I am NOT one to look forward to an empty nest.
I can't wait to smother them in kisses and have them smother me too! I think seeing all their little faces will help my spirits.
Sunday, we will be celebrating DeLainey's 9th birthday even though her true birthday is Monday. It is hard to believe I've been a mama for 9 years! We have a big surprise up our sleeves for this birthday and I can't wait to see her face!
Monday, Brandon and I will be waking up bright and early to beat DC traffic on our way to Wilmington. We have two appointments there and hopefully will be able to return home that afternoon. If we end up going the NG tube route, Xander will have to stay for observation to make sure he can tolerate it. My aunt will be here with the other three children.
While I expressed frustration and annoyance with going the NG route in my last post, I don't want to be misunderstood. I want Xander better and I'm willing to do whatever it takes. Part of me just feels like this will be a band aid and no one will look any deeper. I've lost a lot of trust for the medical community and I'm just a little gunshy. I had a little chat with a medical professional friend and she gently reminded me that NG tubes aren't the end of the world and that they are temporary. She said that this could possibly relieve some of our daily worry about his intake. I get that. But as his mama, I also want a long term solution. I'm willing to do whatever it takes to see that my children reach their full potential.
I love each of them and I tell them several times a day. I love them, always, forever and no matter what.
~Stephanie
Subscribe to:
Posts (Atom)