I wanted to create an inspiring title for this post but really its kind of hard. Everyone and their brother is posting about New Years resolutions and motivation to make the next year better than the last. Truth is, I ran a mile on New Year's Eve... that's right. 1 mile. Took me 11 minutes. My college running teammates are probably all laughing. We used to run 2 miles about that fast. It's not the amount that I ran that matters today. It's the reason I ran and what my emotions were during the run that even make me want to write about it.
A year ago, the same day, I ran 5 miles. I ran on a local trail with my husband (who was forcing me to run it) in the dark, he was pushing our son while holding a flashlight. I was crying. A LOT of tears, I would have rather been on the couch eating cupcakes... and doing that wallowing thing I do so well. I ran as hard as my legs would take me, mostly to end the madness of my husband forcing me to get outside. The last three months had brought us, what I thought would be some of the roughest months for a long time. Dathan, in September was diagnosed with a rare Anti-Diuretic hormone deficiency. He was drinking 10-15 cups of water a day and not backing down. In fact, if we didn't give him the water he wanted he was using his legos to get water out of the toilet and sipping out of the dogs water bowl. I know, gross huh? We knew something was wrong but we didn't know what? The deficiency is most often caused by a tumor on the brain... or something wrong with the kidneys not being able to process it. We spent the next 3 months ruling out a tumor or anything wrong with his brain or kidneys. He is part of the 1% who genetically does not produce the hormone, he will take the synthetic hormone for the rest of his life. He doesn't retain water unless he takes the hormones, dehydration for him can happen very quickly. We are so thankful that he is healthy otherwise... but imagine the heartbreak 2 runner parents were feeling when we found out our little dude will probably need a little more caution when it comes to running. That was the sweet part of last year.
Then, 2 days before Christmas last year we had a miscarriage, we were going to announce to our family that we were due with baby #2. We were 11 weeks 4 days, so we had almost made what we thought was the "safe" mark to tell people. It would be the perfect announcement, Dathan had a shirt that read "Only child expiring soon..." We didn't totally waste our money I ripped out the "expiring soon" part and he wore that Only Child shirt for the rest of the winter. What can I say we're a frugal family. We didn't announce anything and I tried really hard to enjoy Christmas and be thankful for what I had, a healthy family.
Fast forward a few months when we thought our "hard year" was behind us. I put "hard year" in quotes because even through those times I actually never really thought we had it that hard. I was truly accepting of the plans laid out for us. We got on with life. Dathan on his meds was a new man (you know, not drinking from puddles or toilets anymore) and since we live where we live... access to fresh water is abundant. I kept imagining my little guy in another country. He would have died very young of dehydration living anywhere but here.
September of this year we got the diagnosis of Spina Bifida. Diagnosis day, called D-day among 'Bif mom's, yeah, I'm a mom of a kid with Spina Bifida.The kind who has embraced my fancy new title and can use hashtags like
#embracethebif and #TTSB (take that Spina Bifida). I will write about D-Day later, because it deserves its own post. Finding out your baby has something wrong is pure devastation, what you don't know is your baby is perfect and will bring you more joy than you can even imagine. People came from everywhere to let us know that they were praying for our family and our baby. Sending us letters, emails, notes, anything to let us know that our baby will amaze us and that we were not alone. Meals were made, cupcakes brought, my son was taken care of, my husband was taken care of... our community of friends (and new friends who were strangers) and our family showed us how much they cared. What I thought was the worst news... turned out to be one of the greatest blessings to ever happen to us. You are all a part of Dakota's story. All of you praying for us when we didn't even know what we were praying for. Praying for our miracle. We discovered that the plans we had for our perfect family were not even close to the plans God had to give us the perfect family. Dakota was the perfect ending to this year. She sent us on a roller coaster of a ride but we got to where we were supposed to be this year... a family of 4.
So, this year I ran 1 mile to celebrate the last year. It wasn't an easy year (or, let's be honest, an easy mile) but it was all worth it... I'm being cliche in saying I would do it all over again (not that first mile, that mile was painful). BUT this year, I would do it all over again. I would do it differently. I would have worried less and prayed more. I would have enjoyed being pregnant and eaten cupcakes in celebration of Dakota Grace. I would have been excited for her arrival and less stressed about what would be wrong with her. I would have announced her sooner and bought important things like pink outfits, cute hats, oh... and a car seat. I would have had a cute way to reveal her gender and not her diagnosis... I would, I would, I would. Hindsight is 20/20.
On that note, my other "blessing" is putting his feet in my nose asking me "do my feet smell delicious?" while sucking all the flavor off of honey roasted peanuts and spitting them back in the jar. Based on the smell of his feet, its time I focus on parenting and not this blog for a few days.
I should title this "Smelly Feet" and call it inspiration...
Dakota's Birthday
November 11th-
I spent 4 days at the house on bed rest. I was sitting outside in a chair, it was one of those really warm beautiful days outside... a bee came near me, I swatted. My water broke. I screamed for Drew. We were in the car within minutes on the way to the hospital. We drove to the one nearest our house as fast as Drew could drive. Dathan was convinced we were headed to the hospital because I'm afraid of bees. Almost two months later he is still telling people this. I was having contractions every few minutes and the Dr's at our local hospital were working on getting them under control before they would send me in an ambulance where I would have access to a NICU if I delivered today. It took a few hours but with magnesium (yes more magnesium!) the contractions were stopped and I had not lost all my fluid. I was given antibiotics to avoid infection and the goal was to get me safely to the other hospital. I have always wondered what an ambulance ride would be like... traveling backwards in the ambulance on magnesium. Not for the faint of heart. Anyone ever ride in the rear seat of a station wagon after drinking too much orange soda? And your parents are saving on gas so they won't run the air conditioner. It's comparable. I never thought I would ever admit this but I wish I had taken a selfie or at least asked one of the paramedics to take a picture.
I made it to the other Hospital and was stable. I spent the next two weeks on strict bed rest there. I was so thankful for every single day I was there. I would have gladly spent more time there but the morning of November 24th I wasn't just leaking amniotic fluid. I was bleeding. I called Drew and asked him to leave work. I was pretty sure today was the day. The Dr's asked me what my pain levels were, I told them about a 3-4. They were trying to determine if I had an abrupt placenta. On the ultrasound they could see that no blood was flowing to parts of it, but they were not sure if that was from the surgery. Drew heard 3-4 come from me and he, Thank God, informed them that a 3-4 in my world is about a 8-9 in normal people. I was rushed in then for an emergency C-section. I was prepped and ready within the hour. My C-section had to be done a certain way because of the Fetal surgery, the exact two Doctors that I wanted to deliver Dakota were working that night. One of them was on-call and rushed in. She made it moments before Delivery. Dakota was born on November 24th at 7:48pm 2lbs 15oz... She was kicking and crying. The Dr's told us then that had they waited another hour it could have been a true emergency, my placenta was 2/3 detached. It was an absolute miracle that Drew mentioned my tolerance for pain was inaccurate. Like I said girl has a flair for dramatics...
I spent 4 days at the house on bed rest. I was sitting outside in a chair, it was one of those really warm beautiful days outside... a bee came near me, I swatted. My water broke. I screamed for Drew. We were in the car within minutes on the way to the hospital. We drove to the one nearest our house as fast as Drew could drive. Dathan was convinced we were headed to the hospital because I'm afraid of bees. Almost two months later he is still telling people this. I was having contractions every few minutes and the Dr's at our local hospital were working on getting them under control before they would send me in an ambulance where I would have access to a NICU if I delivered today. It took a few hours but with magnesium (yes more magnesium!) the contractions were stopped and I had not lost all my fluid. I was given antibiotics to avoid infection and the goal was to get me safely to the other hospital. I have always wondered what an ambulance ride would be like... traveling backwards in the ambulance on magnesium. Not for the faint of heart. Anyone ever ride in the rear seat of a station wagon after drinking too much orange soda? And your parents are saving on gas so they won't run the air conditioner. It's comparable. I never thought I would ever admit this but I wish I had taken a selfie or at least asked one of the paramedics to take a picture.
I made it to the other Hospital and was stable. I spent the next two weeks on strict bed rest there. I was so thankful for every single day I was there. I would have gladly spent more time there but the morning of November 24th I wasn't just leaking amniotic fluid. I was bleeding. I called Drew and asked him to leave work. I was pretty sure today was the day. The Dr's asked me what my pain levels were, I told them about a 3-4. They were trying to determine if I had an abrupt placenta. On the ultrasound they could see that no blood was flowing to parts of it, but they were not sure if that was from the surgery. Drew heard 3-4 come from me and he, Thank God, informed them that a 3-4 in my world is about a 8-9 in normal people. I was rushed in then for an emergency C-section. I was prepped and ready within the hour. My C-section had to be done a certain way because of the Fetal surgery, the exact two Doctors that I wanted to deliver Dakota were working that night. One of them was on-call and rushed in. She made it moments before Delivery. Dakota was born on November 24th at 7:48pm 2lbs 15oz... She was kicking and crying. The Dr's told us then that had they waited another hour it could have been a true emergency, my placenta was 2/3 detached. It was an absolute miracle that Drew mentioned my tolerance for pain was inaccurate. Like I said girl has a flair for dramatics...
Dakota and Drew left me in the OR and went to the NICU. I visited her the next day.
To answer those awkward questions that everyone is thinking but no one wants to ask...
To us, Dakota is absolutely perfect. We knew that fetal surgery had its risks and we did not want to look back and say what if. No matter the outcome. She is now 34 weeks adjusted, she spent 6 days on oxygen and 10 days in the NICU before she was brought to the Continuing Care Nursery for babies that just need to feed, rest, and grow. We have no idea when she will come home from the hospital but hopefully soon. Little lady does have a big head, my friend says its for her smarty-pants brains, due to mild hydrocephalus. She is just above the high end of normal, nothing that would cause her brain damage or even be of concern. Previous to the surgery it was much larger! A huge prayer had been answered there! Her bowel and bladder are working normally and she has movement all the way to her individual toes. We are not sure she has much sensation in her feet, but she has some. She has lots and lots of strength in her legs but we won't know if she will ever walk until... well, she walks. If she doesn't we're OK with that. The surgery is not a cure for Spina Bifida, but it was our best effort at reducing the effects from it.
To us, Dakota is absolutely perfect. We knew that fetal surgery had its risks and we did not want to look back and say what if. No matter the outcome. She is now 34 weeks adjusted, she spent 6 days on oxygen and 10 days in the NICU before she was brought to the Continuing Care Nursery for babies that just need to feed, rest, and grow. We have no idea when she will come home from the hospital but hopefully soon. Little lady does have a big head, my friend says its for her smarty-pants brains, due to mild hydrocephalus. She is just above the high end of normal, nothing that would cause her brain damage or even be of concern. Previous to the surgery it was much larger! A huge prayer had been answered there! Her bowel and bladder are working normally and she has movement all the way to her individual toes. We are not sure she has much sensation in her feet, but she has some. She has lots and lots of strength in her legs but we won't know if she will ever walk until... well, she walks. If she doesn't we're OK with that. The surgery is not a cure for Spina Bifida, but it was our best effort at reducing the effects from it.
This last picture is a picture of Dakota on the last day we could have legally chosen abortion, or as the doctors call it... Medical Termination due to Spina Bifida. Let that sink in...
Butt Day (Part 2)
Since the surgery on October 23. A lot has happened, including the
birth of sweet little Dakota. She was born early, we knew that was a
huge risk with the surgery. We still believe that even though she was
born at 29 weeks and 2lbs 15oz, the surgery was successful. In fact, her
being born at 29 weeks was way better than what we thought was going to
happen just a few days after the surgery.
I updated you on the first few days post surgery in an earlier post... So, Sunday.
Saturday ended like I said, sitting up and eating a liquid diet. Sunday I was given the green light to walk 10 feet and take a shower, with lots of help. LOTS. I had my husband holding me up while my mom and the night nurse washed me. If any of you know me personally you know I am a very independent person. For example, I drove myself to the hospital while in labor with Dathan. I only called Drew when I was absolutely sure that I was being admitted. So this shower was an extreme blow to my independence. I would have laughed through the whole thing to cover up how uncomfortable I was but laughing with an incision. I don't recommend it at all. In fact, I don't even recommend breathing heavy. So now that you've got that picture in your head. Sunday I was showered and dressed in regular lounging clothes. I may have even brushed my hair. As seen below. Hoping to be released to bed rest outside the hospital on Monday maybe Tuesday.
I feel like the Monday after surgery should have been my big clue that everything revolving around Dakota was/is going to be DRAMATIC. Monday the ultrasound tech came in to do one last check before we were released. Dakota had been showing that she was recovering from surgery very well on every other ultrasound. Today she had an extremely high heart rate and the Ob's started to get suspicious that something was wrong. Something was... my cervix was beginning to open and Dakota was more than willing to exit. I was given the update from the Dr's that there might be an infection and that they were going to do an amniocentesis (second one this pregnancy) to find out. If there was, they would be delivering her today. If not, then I would go back in for surgery to close my cervix. They came in to do the amnio and I was a mess. Either outcome of the amnio meant surgery. Either for Dakota's birth or to close my cervix. The amnio, ended up taking two times for success. The first time Dakota put her hand up to the needle and they had only filled up the tube 1/3 of the way when they had to pull it out. Girl is like her mom, keeps things dramatic. The second time was successful, painful but successful. The initial results showed that there was no infection and that they would do the cerclage. Dakota would not celebrate her Birthday that day! Hooray! Never thought I'd ever say "oh, I'm so relieved its "just" a cerclage!" Since I had just had surgery I felt like a bit of a pro going in. I was way more alert this time and I was only numbed from the waist down. To keep tradition alive I made sure to give the surgeon a peace sign. They kept tradition alive by giving me more magnesium to calm my uterus. So instead of leaving that day we stayed 3 more days. Had we not stayed though we would not have met another couple who were receiving the surgery that next Thursday on their little boy, they were from North Dakota. Just another little sign that we were meant to stick around and meet them. We will always think of them as a symbol of Dakota's Name.
I updated you on the first few days post surgery in an earlier post... So, Sunday.
Saturday ended like I said, sitting up and eating a liquid diet. Sunday I was given the green light to walk 10 feet and take a shower, with lots of help. LOTS. I had my husband holding me up while my mom and the night nurse washed me. If any of you know me personally you know I am a very independent person. For example, I drove myself to the hospital while in labor with Dathan. I only called Drew when I was absolutely sure that I was being admitted. So this shower was an extreme blow to my independence. I would have laughed through the whole thing to cover up how uncomfortable I was but laughing with an incision. I don't recommend it at all. In fact, I don't even recommend breathing heavy. So now that you've got that picture in your head. Sunday I was showered and dressed in regular lounging clothes. I may have even brushed my hair. As seen below. Hoping to be released to bed rest outside the hospital on Monday maybe Tuesday.
I feel like the Monday after surgery should have been my big clue that everything revolving around Dakota was/is going to be DRAMATIC. Monday the ultrasound tech came in to do one last check before we were released. Dakota had been showing that she was recovering from surgery very well on every other ultrasound. Today she had an extremely high heart rate and the Ob's started to get suspicious that something was wrong. Something was... my cervix was beginning to open and Dakota was more than willing to exit. I was given the update from the Dr's that there might be an infection and that they were going to do an amniocentesis (second one this pregnancy) to find out. If there was, they would be delivering her today. If not, then I would go back in for surgery to close my cervix. They came in to do the amnio and I was a mess. Either outcome of the amnio meant surgery. Either for Dakota's birth or to close my cervix. The amnio, ended up taking two times for success. The first time Dakota put her hand up to the needle and they had only filled up the tube 1/3 of the way when they had to pull it out. Girl is like her mom, keeps things dramatic. The second time was successful, painful but successful. The initial results showed that there was no infection and that they would do the cerclage. Dakota would not celebrate her Birthday that day! Hooray! Never thought I'd ever say "oh, I'm so relieved its "just" a cerclage!" Since I had just had surgery I felt like a bit of a pro going in. I was way more alert this time and I was only numbed from the waist down. To keep tradition alive I made sure to give the surgeon a peace sign. They kept tradition alive by giving me more magnesium to calm my uterus. So instead of leaving that day we stayed 3 more days. Had we not stayed though we would not have met another couple who were receiving the surgery that next Thursday on their little boy, they were from North Dakota. Just another little sign that we were meant to stick around and meet them. We will always think of them as a symbol of Dakota's Name.
Me recovering from my second surgery with Dakota.
Thursday, I was released to stay across the street from the hospital at the hotel. We stayed there because my mom's work had her staying there. The hotel stay was uneventful. The hotel and staff however, were absolutely amazing. They are across from the hospital so they see a bit of heartbreak. Upon entering though you can tell they all love their jobs. They made my two weeks on bedrest there awesome. After the two weeks we had our final fetal MRI at the hospital and the final meeting with the surgical team to determine if I was stable enough to fly home and then have follow up care at our local high-risk hospital.
The fetal MRI showed almost full reversal of her Brain malformation, reduced ventricle size, the brain bleed that had us disqualified was no longer present and a syrinx (spinal pocket of fluid) she had in her upper spine had almost completely dissipated. On the ultrasound she was showing movement all the way to her toes. The fetal surgery, so far, was a complete success. Now, to keep her cooking. I was told I could fly home and I did that Saturday. That brings me to November 8th.
Thursday, I was released to stay across the street from the hospital at the hotel. We stayed there because my mom's work had her staying there. The hotel stay was uneventful. The hotel and staff however, were absolutely amazing. They are across from the hospital so they see a bit of heartbreak. Upon entering though you can tell they all love their jobs. They made my two weeks on bedrest there awesome. After the two weeks we had our final fetal MRI at the hospital and the final meeting with the surgical team to determine if I was stable enough to fly home and then have follow up care at our local high-risk hospital.
The fetal MRI showed almost full reversal of her Brain malformation, reduced ventricle size, the brain bleed that had us disqualified was no longer present and a syrinx (spinal pocket of fluid) she had in her upper spine had almost completely dissipated. On the ultrasound she was showing movement all the way to her toes. The fetal surgery, so far, was a complete success. Now, to keep her cooking. I was told I could fly home and I did that Saturday. That brings me to November 8th.
Happy Butt Day Dakota (part 1)
I'm not sure how you start a post about surgery, I mean how do you gently roll into "today I was cut open and my baby had her back sewn up" oh, just like that I guess?
October 23, 2014.
Thursday morning myself, drew and my mom showed up at 5:30am to get all the pre-surgery stuff done, things like check in, IV's, hospital gown and an Epidural that I would have for the next 3 days. Everyone that would be in the room during the surgery came and introduced themselves, we would have two surgeons, and a pediatric neurosurgeon for Dakota, a bazillion nurses, anesthesiologist... And for some reason I thought it was really important to have a guy standing by in case a machine broke during the surgery. They assured me they had people on staff to fix machines if they broke, I think drugs kicked in before I could really check on "who" would be doing that job. Good news, if anything malfunctioned I had no idea.
I was nervous through all of the pre-op but I think if you're not nervous during something like that you might need to see a mental health specialist. My nurse was Jamie and she was absolutely the best, she asked us about our son and she immediately knew Dathan's name came from a rebel in the bible... It was a tiny sign that morning that we were going to be ok. Later in the week we found out that her husband was an Eagles fan and that her husband grew up ten minutes from where we lived.
Around 7:30am it was time to go, I'd like to say I hugged and kissed Drew and my mom and said my goodbyes but I honestly had had so much "liquid courage" pumped in my veins at that point that all I remember were the following important details:
1. Jamie my nurse wheeled me in the OR, then held my hand through the whole surgery (ok, I fell asleep holding and woke up holding it. I can't account for the time in between).
2. One of the surgeons waved to me on the way in, he was drinking Starbucks. I gave him a peace sign.
3. They made me move myself from my hospital bed to the operating table, and that's when I started to cry.... Jamie told me to "remember who's in control" I knew what she meant and wiped my tears away.
That was it, the next few hours I didn't have to do much except lay there like a stuffed sausage. I have no doubt I accomplished this with ease. I imagine I had the easy job, now it was the surgeons jobs to be on their game. I'm about to get graphic here and I'm sure some of my medical jargon is not up to par, but like I said, my main job was to "be the sausage." The surgeons made an incision horizontal from hip bone to hip bone about 5 inches below my belly button, pulled my skin up, took out my uterus and flipped it around to make an incision on the posterior portion. They used ultrasound to figure out exactly where Dakotas butt was so that only her lesion would enter the world, get fixed, then head back in the womb. Dakota flashed the world with her butt for 22 minutes on October 23rd. I fully intend on celebrating her "happy butt day" well into her teen years... Butt cake. Sounds delightful, I'll be inviting all her boyfriends for said celebration. I tried to get the surgeons to tell me her hair color, turns out they weren't scoping out important details such as eye or hair color. I suppose I can wait. Anyways, she was patched up, then they sewed me up and after 4 hrs I was on my way to recovery. The surgery went very well and to quote my mom "Amanda, it was like a post football victory. If they weren't professional surgeons I think they would have been chest bumping one another." My mom was a very happy mama, both her baby and grandbaby were out of surgery and doing well!
I know what you're thinking, you can totally see why Drew married me.
Recovery is when I began to play a big part again... Although sleeping through the next 48 hours would have been fabulous. I woke up and Drew and my mom were there, I had never felt that terrible in all my life. They had me on an Epidural and pain meds and magnesium (anti contraction medicine). I did find out that as I was recovering I was very concerned about Dathan, I wanted to know if "Dathan made it to swimming lessons?" I was also making jokes asking if "Dakota was still swimming?" (Humor, if you can't tell is a coping mechanism for me) I was assured many times that both my kids were swimming. I still have no idea why that's what I cared about most?
The next two days I was on an IV of fluids and meds. I was not allowed to have anything to eat or drink because the meds that are used to relax your uterus apparently relax your swallowing and gag reflex making aspirating or choking a very real possibility. The meds also make you feel nauseous with flu-like symptoms. I was hot and unable to open my eyes, I basically just laid for about 48 hours, Drew and the nurses moved me every few hours. I also would not wear a hospital gown, so modesty was out the door. Once I was off the drugs I got my modesty and embarrassment back I no longer flashed the hospital staff. My mom rubbed my feet for hours/days just to help relieve the pain, I had these really awesome compression stockings on with leg compressor sleeves that helped me from getting any blood clots. I vaguely remember most things but at one point I felt really terrible and a bunch of my monitors started going off and the next thing I knew I woke up with about 15 people around me, yelling my name and trying to get me to come back.
The second time it happened I made Drew press the emergency button, and by made it went something like this..."Drew, something's wrong please call the nurse" Drew, my Physical Therapist husband hands me the remote with the call button, as a PT he's always about promoting future independence (which at this point I have a catheter, I'm being given meds and fluids via IV and independence is about 6 full recovery days away) and he says, "press the button Amanda, it's right next to you" I respond in the most polite way I know how moments before I blackout for the second time... "Press the F*%%#!* button" and I hear all the alarms start going off and next thing I know I'm waking up to my entourage of medical staff, I like to keep things dramatic. So, PT Drew stayed away for a bit longer and helpful husband stayed by my bedside for a few more days. In case you're wondering, I apologized to Drew later for cursing at him. Through all of this he was absolutely the best, we laughed later about the whole thing but at the time we were both pretty scared. My mom, who
I was nervous through all of the pre-op but I think if you're not nervous during something like that you might need to see a mental health specialist. My nurse was Jamie and she was absolutely the best, she asked us about our son and she immediately knew Dathan's name came from a rebel in the bible... It was a tiny sign that morning that we were going to be ok. Later in the week we found out that her husband was an Eagles fan and that her husband grew up ten minutes from where we lived.
Around 7:30am it was time to go, I'd like to say I hugged and kissed Drew and my mom and said my goodbyes but I honestly had had so much "liquid courage" pumped in my veins at that point that all I remember were the following important details:
1. Jamie my nurse wheeled me in the OR, then held my hand through the whole surgery (ok, I fell asleep holding and woke up holding it. I can't account for the time in between).
2. One of the surgeons waved to me on the way in, he was drinking Starbucks. I gave him a peace sign.
3. They made me move myself from my hospital bed to the operating table, and that's when I started to cry.... Jamie told me to "remember who's in control" I knew what she meant and wiped my tears away.
That was it, the next few hours I didn't have to do much except lay there like a stuffed sausage. I have no doubt I accomplished this with ease. I imagine I had the easy job, now it was the surgeons jobs to be on their game. I'm about to get graphic here and I'm sure some of my medical jargon is not up to par, but like I said, my main job was to "be the sausage." The surgeons made an incision horizontal from hip bone to hip bone about 5 inches below my belly button, pulled my skin up, took out my uterus and flipped it around to make an incision on the posterior portion. They used ultrasound to figure out exactly where Dakotas butt was so that only her lesion would enter the world, get fixed, then head back in the womb. Dakota flashed the world with her butt for 22 minutes on October 23rd. I fully intend on celebrating her "happy butt day" well into her teen years... Butt cake. Sounds delightful, I'll be inviting all her boyfriends for said celebration. I tried to get the surgeons to tell me her hair color, turns out they weren't scoping out important details such as eye or hair color. I suppose I can wait. Anyways, she was patched up, then they sewed me up and after 4 hrs I was on my way to recovery. The surgery went very well and to quote my mom "Amanda, it was like a post football victory. If they weren't professional surgeons I think they would have been chest bumping one another." My mom was a very happy mama, both her baby and grandbaby were out of surgery and doing well!
Recovery is when I began to play a big part again... Although sleeping through the next 48 hours would have been fabulous. I woke up and Drew and my mom were there, I had never felt that terrible in all my life. They had me on an Epidural and pain meds and magnesium (anti contraction medicine). I did find out that as I was recovering I was very concerned about Dathan, I wanted to know if "Dathan made it to swimming lessons?" I was also making jokes asking if "Dakota was still swimming?" (Humor, if you can't tell is a coping mechanism for me) I was assured many times that both my kids were swimming. I still have no idea why that's what I cared about most?
The next two days I was on an IV of fluids and meds. I was not allowed to have anything to eat or drink because the meds that are used to relax your uterus apparently relax your swallowing and gag reflex making aspirating or choking a very real possibility. The meds also make you feel nauseous with flu-like symptoms. I was hot and unable to open my eyes, I basically just laid for about 48 hours, Drew and the nurses moved me every few hours. I also would not wear a hospital gown, so modesty was out the door. Once I was off the drugs I got my modesty and embarrassment back I no longer flashed the hospital staff. My mom rubbed my feet for hours/days just to help relieve the pain, I had these really awesome compression stockings on with leg compressor sleeves that helped me from getting any blood clots. I vaguely remember most things but at one point I felt really terrible and a bunch of my monitors started going off and the next thing I knew I woke up with about 15 people around me, yelling my name and trying to get me to come back.
The second time it happened I made Drew press the emergency button, and by made it went something like this..."Drew, something's wrong please call the nurse" Drew, my Physical Therapist husband hands me the remote with the call button, as a PT he's always about promoting future independence (which at this point I have a catheter, I'm being given meds and fluids via IV and independence is about 6 full recovery days away) and he says, "press the button Amanda, it's right next to you" I respond in the most polite way I know how moments before I blackout for the second time... "Press the F*%%#!* button" and I hear all the alarms start going off and next thing I know I'm waking up to my entourage of medical staff, I like to keep things dramatic. So, PT Drew stayed away for a bit longer and helpful husband stayed by my bedside for a few more days. In case you're wondering, I apologized to Drew later for cursing at him. Through all of this he was absolutely the best, we laughed later about the whole thing but at the time we were both pretty scared. My mom, who
rarely left my side, got coffee at that exact moment... Let's just say, she didn't leave for anything after that. We were all a little nervous. The doctors did figure out my body was reacting poorly to one of the anti contraction meds and it wasn't just relaxing my uterus, it was relaxing all my other important organs too. Since those were important (you know for living) they lowered my dose and things started to even out. Saturday afternoon they took me off the epidural and the magnesium and I started to feel much better, and by better I actually mean I opened my eyes and sat up. I was finally able to eat a liquid diet, I went big. I ordered chicken AND beef broth, Dathan's not the only rebel in this family. I was able to take meds in pill form and slowly worked to get off my IV's.
This is going to have to be a two part post, stay tuned for awkward intimate details on how my husband, my mom and the night nurse helped me take a shower...if that doesn't bring you back I don't know what will? Also, if you're still reading, impressive.
This is going to have to be a two part post, stay tuned for awkward intimate details on how my husband, my mom and the night nurse helped me take a shower...if that doesn't bring you back I don't know what will? Also, if you're still reading, impressive.
Introducing our little girl- seems fitting that it's Spina Bifida awareness month
It's time to introduce our little girl. Her name is Dakota Grace and her introduction to the world is going to be so different from her big brother. Dakota was discovered at our 19 week ultra-sound to have Spina bifida, she has myelomeningocele with chiari II malformation, swelling of her ventricles, the lemon head sign and her defect of the spine is at the L4-L5 (the Dr's suspect it goes down further but with imaging, are unsure about that). A lesion means her spinal cord and nerves are exposed to spinal and amniotic fluid causing damage as she grows bigger in the womb mostly resulting in paralysis from that lesion level down. The last month has been an absolute whirlwind, we are now one month later at 24 weeks 2 days...
We have gotten past the initial stage of shock and grief, which I will definitely write about later. It was not actually a graceful or pretty journey, it mostly involved laying on the couch wallowing in my own self pity while eating cupcakes and a LOT of crying. The kind of crying that makes you feel hungover for days. Drews grief was WAY more productive, he finished like every project in our house that he possibly could over those 2 weeks that I was laying on the couch. He mowed the lawn like a Boss, shortest lawn on the block. #boom. Anyways, more about those two weeks later, because 24 cupcakes in one sitting is soooo worth writing about. 
Our local maternal fetal medicine Dr said she thought we were candidates based on passing all the criteria to qualify for Fetal Surgery, it would close up her back and possibly protect her nerves from further damage along with a very high chance the Chiari II would reverse and swelling of the ventricles would decrease. There are only a few hospitals in the country that do the surgery and the one closest to our house seemed the obvious choice. It was an hour and a half away, perfect! We knew the risks, we went through all the testing from an MRI on her brain, a 3 hour ultrasound, psychological, financial... Numerous meetings. It was a rough 2 days but we were so assured that we were "great candidates" we didn't even stress about the surgery. It all seemed perfect... The last day 15 minutes before our last meeting (you know, after we told our family we were a go for the surgery that next Monday) one of the surgeons came out to tell us that we were no longer candidates and it was too risky. Rug pulled out from under us... It felt worse than the first day of diagnoses. We had so prepared ourselves, family, cancelled vacations, my mom cancelled her wedding vow renewal... It was devastating. The hospital gave us the information on states that we could abort at a later date (because our little girl was going to have "many complications") or come back and deliver c-section in January. We got up and walked out and cried (well I cried, Drew was busy owning the Philly roads at top speed, because like I said Drew owns his machines during times of crisis) the whole way home, and I forced him to stop for more cupcakes.
About 48 hrs later I picked up my broken self and decided that if one neurosurgeon said no, would another neurosurgeon see our case slightly differently? We decided it was worth a try and it had to be fast we were at 22 weeks and the surgery has to be performed before 25 or 26 weeks depending on the surgeon. Just in case we were told no, we scheduled our delivery at the hospital by our house, tons of babies are born without fetal intervention and are perfect in their own way. We also knew we didn't want to give up just yet, we sent our imaging and records to a couple of other hospitals a few said no, because they were on the fence and didn't want us to fly out and be disappointed. We started to get back on track with our normal days of working and schedules and just when we thought that was it. Friday the 17th, Denver called and asked if we would fly out for an appointment on Monday. We figured it couldn't hurt, we knew we still wanted to take the risk for the surgery since Dakota has been moving her legs all the way to her feet and the swelling on her brain had become slightly larger, only to get worse over the rest if the pregnancy.
The trip to Denver has been nothing short of signs that this is the right path. I found a direct flight for $107, my mom who works around the country and her work sends her anywhere from Hawaii to Alabama just happened to start a 3 week stay in Denver the same day as our first appointment. Her work has graciously moved her hotel across the street from the hospital. I can see her hotel room from where my recovery room will be and after 3-5 days in recovery I'm allowed to stay on bed rest at her hotel since it's so close! If all goes well I will be sent back home on bed rest about 2 weeks after discharge. We did all of our appointments and they have deemed us candidates if we would like to go ahead with the surgery, we sign consent forms this afternoon. I will receive my second steroid shot, in case she is born during the surgery she has a better chance of surviving. Prematurity is a big risk (we have prayed about heavily) but we are praying that she stays put. We have decided the benefits outweigh the risks and have decided this is the right decision for our family, no matter the outcome. We are not going to play the what-if game, decision made.
If the surgery happens (you see I say IF, because the rug was pulled right before this meeting last time) it is tomorrow at 7:30am. Please pray for our little Dakota and the strength for me in recovery. I hear the first few days are rough and to be honest, I'm nervous. Every week she stays put is another milestone of growth. 37 weeks Jan 19th is our goal. Pray for that, pray for her.
And because no runner family can come to Colorado and not do some sight seeing... We took Dakota on her first altitude walk on Magnolia road. Got to build those lungs!
No caption needed
This guy thinks he's hilarious. So much for a five minute shower while he hangs out in this thing.
(can we just say mom of the year? I win!)
Amanda
(can we just say mom of the year? I win!)
Amanda
Time zone
It's 2am...
This guy still thinks he's in Hawaii. Oh, time zone change you are kicking this mama's behind!
If you are wondering. Yes, I did work today less than 12 hours after landing. Tired is an understatement:-p
Amanda
This guy still thinks he's in Hawaii. Oh, time zone change you are kicking this mama's behind!
If you are wondering. Yes, I did work today less than 12 hours after landing. Tired is an understatement:-p
Amanda
after all this stuff
After Watching dad jump into the falls...
Hanging out at the beach...
Some more hiking...
Eating the most gigantic shave ice...
Hanging out with cousin kenz...
Baby gymnastics while waiting for kenz...
This little guy can't even hold his own bottle! Exhausted!
Amanda
Hanging out at the beach...
Some more hiking...
Eating the most gigantic shave ice...
Hanging out with cousin kenz...
Baby gymnastics while waiting for kenz...
This little guy can't even hold his own bottle! Exhausted!
Amanda
Nature and some other random things
Due to the nature of my job... I am going to miss many milestones of my favorite little man. Sadly, I've already missed a few things and it only gets worse before it gets better. Only for a little while or maybe a long while, not sure. Anyways... A guy that I work with gave me some good advice. He said you can't beat yourself up over missing milestones, it's the job. He suggested I make a list of things, crazy firsts that can be controlled by circumstance and not developmental things.
Such as:
1. Dathans first roller-coaster
2. Dipping his toes in the pacific ocean (check that one)
3. First plane ride (again check!)
4. First hike to waterfalls.
I know the roller-coaster thing is a long ways off but in the next few weeks I am going to make a list of "firsts" that I can be sure him and I get to experience together...
Maybe some of you might come up with some good ones? Make your own list?
Here's my little guy who thinks that crawling on your knees is lame.
Did I mention we are in Hawaii! Since the time change we have been waking up at 4am, not much to do around here at that time! My niece Makenzie and my sister live out here... So beyond jealous! At least we have a free place to stay.
We hiked our first day here.
We did some island hopping and we hung out in the first class lounge.
Then we hung out at the beach a little...
Met up with some friends...
And no vacation is complete without a race? Right? Our friend Emily... Winning the women's race no big deal!
Go Dad!
He is always making friends at the post race festivities.
Vacation. So. Relaxing.
Amanda
Such as:
1. Dathans first roller-coaster
2. Dipping his toes in the pacific ocean (check that one)
3. First plane ride (again check!)
4. First hike to waterfalls.
I know the roller-coaster thing is a long ways off but in the next few weeks I am going to make a list of "firsts" that I can be sure him and I get to experience together...
Maybe some of you might come up with some good ones? Make your own list?
Here's my little guy who thinks that crawling on your knees is lame.
Did I mention we are in Hawaii! Since the time change we have been waking up at 4am, not much to do around here at that time! My niece Makenzie and my sister live out here... So beyond jealous! At least we have a free place to stay.
We hiked our first day here.
We did some island hopping and we hung out in the first class lounge.
Then we hung out at the beach a little...
Met up with some friends...
And no vacation is complete without a race? Right? Our friend Emily... Winning the women's race no big deal!
Go Dad!
He is always making friends at the post race festivities.
Vacation. So. Relaxing.
Amanda
Fire Fighting
Uncle mike is a firefighter in the Air Force....
Dathan got to tour the firehouse and try out some of the gear they use! Mike works at the firehouse where the Presidents plane is parked. I hope the President knows he is in good hands!
This little guy has some very cool aunts and uncles...
Amanda
Dathan got to tour the firehouse and try out some of the gear they use! Mike works at the firehouse where the Presidents plane is parked. I hope the President knows he is in good hands!
This little guy has some very cool aunts and uncles...
Amanda
I thought I had more time
One night he's sleeping peacefully in his crib...
The next night I catch him up to no good...
I was expecting D's next milestone to be sitting unsupported, like all those baby charts say. He skipped right over that and went straight to crawling and almost standing? What?!?!? When I say "skipped" he can't sit by himself, I see all the other six month old babies in the church nursery hanging out, sitting around looking at each other. And where is my kid? Crawling/scooting wherever he can. Someday we'll get the sitting phase. Today is not that day. If he is like his dad... Never;-)
If you count the bumbo as sitting, then I guess he does.
He would much rather his friends be in the chair and he can be free.
I thought I had more time before he became mobile:-/
Not the most flowing post. I know.
Amanda
The next night I catch him up to no good...
I was expecting D's next milestone to be sitting unsupported, like all those baby charts say. He skipped right over that and went straight to crawling and almost standing? What?!?!? When I say "skipped" he can't sit by himself, I see all the other six month old babies in the church nursery hanging out, sitting around looking at each other. And where is my kid? Crawling/scooting wherever he can. Someday we'll get the sitting phase. Today is not that day. If he is like his dad... Never;-)
If you count the bumbo as sitting, then I guess he does.
He would much rather his friends be in the chair and he can be free.
I thought I had more time before he became mobile:-/
Not the most flowing post. I know.
Amanda
Neglecting you
Blog, thanks for your patience. I've been neglecting you.
I am not sure how full time working moms do it. And by do it I'm talking about work, keep up with the house, husband and devote your time to your little ones. Somewhere things have to lack? Or am I just not capable? I'm leaving the house at 4:30am and coming home exhausted:-/ I end up in bed by 7:30, then Drews home around 8:30. I say hello and fall back to sleep.
Mom, with 5 children... How did you do it? I'm officially putting you in my Super Hero book, you know, right there with Superman.
The good news is that this "full time" stuff is a season! It's been 7 weeks and I have 1 week left! Then I go back to my preferred 1 day a week. This has been a real eye opener to how blessed I am to have a husband who is on board with me not working a 40 hour work week. Also, where I was lacking in housework he was picking up most of the slack. I think he will be happy to have his wife back. Did I mention I'm grumpier than usual?
Here are some pics from the last couple of weeks...
First time in the highchair, no food yet... But we are practicing!
Just being the little stud that he is!
Opening his first party invitation... From a girl!?!
Running with daddy... Always happy to do that:-)
Hanging with dad... Watching The Tour de France.
Hanging out with Opa and Aunt Marcy at Dads Triathlon.
I promise blog... I'll catch up. One day.
Amanda
I am not sure how full time working moms do it. And by do it I'm talking about work, keep up with the house, husband and devote your time to your little ones. Somewhere things have to lack? Or am I just not capable? I'm leaving the house at 4:30am and coming home exhausted:-/ I end up in bed by 7:30, then Drews home around 8:30. I say hello and fall back to sleep.
Mom, with 5 children... How did you do it? I'm officially putting you in my Super Hero book, you know, right there with Superman.
The good news is that this "full time" stuff is a season! It's been 7 weeks and I have 1 week left! Then I go back to my preferred 1 day a week. This has been a real eye opener to how blessed I am to have a husband who is on board with me not working a 40 hour work week. Also, where I was lacking in housework he was picking up most of the slack. I think he will be happy to have his wife back. Did I mention I'm grumpier than usual?
Here are some pics from the last couple of weeks...
First time in the highchair, no food yet... But we are practicing!
Just being the little stud that he is!
Opening his first party invitation... From a girl!?!
Running with daddy... Always happy to do that:-)
Hanging with dad... Watching The Tour de France.
Hanging out with Opa and Aunt Marcy at Dads Triathlon.
I promise blog... I'll catch up. One day.
Amanda
4 months?
This little guy is 4 months... Where did time go? I realize I have been Mia for a few weeks, started working and life is just passing by!
Stats: 12.5 lbs (10%), 26 inches (95%) and his head I can't remember but it's in the 95%! Long and lean just like his dad.
Little buddy you're rolling front to back and back to belly. You love smiling and giggling. You love your toes and anything you can get your hands on to put in in your mouth.
You sleep like a champion in your crib, sleeping 8:30pm-9am if we let you!
You're into lights, fans, and pockets.
You rarely cry, thank God, because it breaks my heart when you do. Bath-time is not calming for you, like everyone tells us it should be. Bath-time is like giving you an expresso before bed.
When daddy sings or plays airplane you make daddy so happy with your screams of delight! You have some amazing little "friends" and I hope you grow to love them as we love their parents.
You are amazing little buddy, our little snuggle muffin:-)
Love
Mama
Stats: 12.5 lbs (10%), 26 inches (95%) and his head I can't remember but it's in the 95%! Long and lean just like his dad.
Little buddy you're rolling front to back and back to belly. You love smiling and giggling. You love your toes and anything you can get your hands on to put in in your mouth.
You sleep like a champion in your crib, sleeping 8:30pm-9am if we let you!
You're into lights, fans, and pockets.
You rarely cry, thank God, because it breaks my heart when you do. Bath-time is not calming for you, like everyone tells us it should be. Bath-time is like giving you an expresso before bed.
When daddy sings or plays airplane you make daddy so happy with your screams of delight! You have some amazing little "friends" and I hope you grow to love them as we love their parents.
You are amazing little buddy, our little snuggle muffin:-)
Love
Mama
