Macy

Macy

Thursday, December 19, 2013

Our First Twin Adventures...

So the boys are 7 weeks old today!!  Yea!  I've noticed that I pretty much never call them 'the twins' or refer to them as twins. I'm not sure why. It's not a conscious decision. Maybe it's just easier to say 'the boys'. I don't know...anywho....

So yea they are 7 weeks old, and are getting sooo big compared to when they were born. Reece was so skinny at birth we could see his intestines through his stomach. Now he's a chubby-cheeks, and it's adorable!  Emmet is still a pound bigger than Reece but he feels so much bigger. He just seems like he's built much more solid, and that's why we call him "Tank"! Hehe.  They both have pretty easy-going temperaments so far. Some may have imagined it would be chaotic with a 3 year old and newborn twins, but it's usually pretty quiet around here. So far I would say it's been pretty easy, and not much different than having a singleton. But I'm sure that'll change once they get a little older. 

These last few weeks we have been just hanging out at home. Macy is doing awesome with her brothers. She picks out their outfits for the day, sticks their binky in their mouth if one starts fussing, gives them lots of hugs and kisses, and helps hold their bottle while their eating. We decided to be hermits this winter via the NICU doctors recommendation. Premies have immature immune systems still. If they were to get sick they would have to be hospitalized; and seriously I am soooo sick of being at the hospital. So we decided to limit their exposure to people for this winter. And also it will help because it's important to keep Macy healthy as well. 

In the midst of everything I almost forgot Macy has her Hemonc bloodwork/labs due...well, right now really. So I think we'll just do it the same day we bring the boys in for their sweat tests in about a week and a half. Honestly, up until today I haven't really though about the cystic fibrosis thing. We will know for sure in a couple weeks. If I think about it too much I'll just drive myself nuts analyzing every cough, sneeze, poop, etc wondering if it's a CF symptom, so I just decided to push it to the back of my brain where luckily it has stayed. 

We did have 1 family outing last weekend. We went out for breakfast down the street (in town which is about 2 miles away). We kept the boys in their car seats snapped into the stroller with the blankets kinda covering them to keep people away. They chilled in there while we ate breakfast, and we were back home before it was time for them to eat so they were none the wiser! :)
The funny part is when we walked in with Macy and the double stroller everyone gave us this crazy look like we were walking in with 50 children or something. Haha. It's only 3, people.....there are lots and lots of families with 3 kids. But maybe it just seems like there are more with twins?  I remember when my cousin Sarah had her twins she mentioned how twin crazy the public is when you go out. She was so right. When Adam brought the boys to their Dr appt he said people mobbed him....and a lady wanted to take pictures of them, etc. The same thing happened to me at the Dr office yesterday for their weight check.  And for some reason they want to stick their face in the baby's face. They can't just look from afar?  When we left NICU the March of Dimes gave us these signs to put on their car seats. They have a big, red stop sign on them and say "STOP, Don't touch the baby!!"  I'm thinking of actually using them next time. Haha. I know people mean well and are just fascinated with twins, but sometimes they don't think about what their doing.  
Me getting them in and out of the van is pretty hilarious. Since I was on bedrest most of the summer, then on hospitalized bedrest till they were born I am weak!!!  It takes all my might to get them loaded and unloaded. I feel like a wus! :)

Not to mention when I got home from their appointment yesterday I got the van stuck in the snow in our driveway so I had to carry Macy too, and I tripped and we both almost went face down in a snow bank. We have new neighbors that just moved in and I could see the silhouette of the guy through the front window watching my craziness. And of course since we were just running down the street to the Doctor I had on a sweeeet outfit of teal sweat pants, green knee-high boots, and a purple fleece. I can imagine it was quite the spectacle. Especially me spinning the tires on the van trying to get it unstuck before I gave up to carry the kids in the house. Atleast I got the van in the driveway this time. There was a time at our old house I got our SUV stuck, but it was teetering on a snow bank between the street and the sidewalk. Haha. 

Well, the boys eat at midnight so I better get going....I hope everyone has a great holiday!!  

Take care,
Jenn

Friday, November 15, 2013

Am I being punked...seriously!

One step forward; and twenty steps back?  First off Emmet and Reece are both doing great in NICU in terms of being premature. They are slowly learning to eat by mouth, and are slowly gaining weight. It shouldn't be too much longer before they can come home, and I can't wait!!!

The bad news. About a week ago we received a phone call from the NICU Dr. Emmet's newborn screening came back 'abnormal' for cystic fibrosis. Before I go any further let me explain a little bit about how it's screened for first. What they test for first is what is called an IRT level. It's basically an enzyme that is secreted by the pancreas. If your child's level is above a certain number it's flagged and they go ahead and do DNA testing for the CF mutations. Emmet's came back high enough to be flagged, and when they tested his DNA they found 1 copy of the Delta F508 mutation. It's the most common CF mutation. There are about 1800 or so mutations that can cause CF, and they only test for the Delta F508 and about 20-30 of the next most common. Even though Reece's IRT came back in the normal range they did a DNA test on him as well bc of Emmet; and they found the same Delta F508 mutation in Reece. Cystic Fibrosis is a genetic disorder that is inherited by both parents carrying the mutated gene (just like Macy's FA). So right now we know at the least Emmet and Reece are both CF carriers, and it is possible that one or both could have the disease. They will need to be tested via sweat test, but since they are premature they cannot be tested for 2 more months. All we can do for now is try to stay positive that they are both just carriers. 

Any prayers or positive vibes would be greatly appreciated. 

Take care
Jenn

Thursday, November 7, 2013

Just call me Scarecrow...literally! (Not for the faint)

So this week has been a doozy...in a way.  I've been slow at updating because we wanted to wait for some test results to come back first, instead of just freaking out. So I'll start at the beginning. 

Some may not know this, but whenever you have multiples the placentas are sent out for testing instead of just being tossed out at birth.  About two days after the boys were born they told us the pathology report came back showing ESBL infection in both of the placentas.  In the placental tissue to be exact.  it's E. Coli, but it's not just one of the run of the mill E. Coli strands, it's a "superbug" which means it is extremely resistant to antibiotics. So they drew the boy's blood to send out to culture which takes 48-72 hours and started them on antibiotics. They were moved into isolation, and I was put in isolation as well. So my nurses had to "gown up" every time they came in my room after that. At first I was a little confused as to why I was in isolation, because I didn't have any signs of infection. The Dr came in the next day and said it was just a precaution bc they didn't know yet if the infection was limited to the placental tissue, or if it was in the blood. 

So we immediately contacted Minnesota and told them what was going on. If it was in the blood that means it's also in the cord blood which may deem it unusable.  Ahhhhhh!!!!

48 hours later the blood cultures came back negative. whew!  We were relieved.  So they discontinued the antibiotics. Still waiting on pathology report from the cord blood though. 

About 3 days later Emmet started having quite a few Brady's episodes (common in premature babies where they forget to breathe (apnea) so their heart rate goes too low). This prompted a CBC. Both Emmet and Reece had CBC's that were alarming and pointed strongly towards infection. So here we go again....they started antibiotics again, and sent out the blood to be cultured again. They said it is possible they had a delayed onset of that ESBL superbug. However they showed no clinical signs of infection (fever, etc) which was a good thing. We contacted Minnesota again to let them know and were still waiting on their results of the cord blood (they have to test for a bunch of things including confirmation they are HLA matched to Macy and this takes a little while). 

48 hours later was yesterday. In the meantime I was 6 days out from my c-section yesterday and was still in A LOT of pain. A part of my incision started oozing yellow. I knew that wasn't normal so i went for an incision check. 

The plan was my mom was going to drive me to my appt (in the same building as the hospital). We would get that done and visit the babies and find out the results of their blood cultures. WRONG! When I laid down at my appt and the dr looked at my c-section site she agreed it didn't look like it should. They had to peel all the steristrips off, and drain the fluid. Then they started opening me up (taking out the stitches and sticking q-tips down into my gut. Anywho, basically I had many pools of infected fluid all over and they said they'd have to open me back up completely. As in all the way across.......and they started doing it right there in the office until I put it to a stop. I couldn't take the pain and told them I needed something if they were going to do that. Meanwhile.....I think my mom was about to pass out...I was a bloody/gooey mess. They decided to admit me in through ER and give me numbing/pain meds before opening the rest up (thank goodness). And lucky for my mom Adam arrived in the nick of time bc learning what was coming next wouldn't have worked out well for her.  

In the midst of it all Adam said the Dr called and the blood cultures came back negative!!!  YES!!!!  They did CBC's again and they looked good! YES!  Must have just been a weird CBC the first time which can be common with premies.  We are still waiting on the results of the cord blood tests. 

So when I say "just call me scarecrow" I mean it literally. I'm stuffed now.....literally. In triage they gave me meds for the pain and numbed my stomach with lidocaine. They took out all of my stitches and opened me up. Took a syringe and doused the whole area with a saline and peroxide mix............and now for the fun part...took these long q-tips to stuff huge pieces of gauze inside my stomach. INSIDE MY BODY......not just down in the incision site, but actually stuffed down inside my abdominal cavity. They leave the gauze in my body, tape an abdominal pad over the area, and that's it. That all that holding me in. So my c-section incision is not being held together anymore. It's an inch or two opening just sitting there, and they said over time the two sides will find each other, and start to heal. So now everyday (morning and night) Adam has to take the pad off my stomach, reach inside my stomach and pull out all the gauze, re-clean it out with saline/peroxide, and use the long q-tips to re-stuff me full of gauze for the day/night. 

The good news is the boys don't have an infection, and they are really doing pretty great!!!!  I can't wait until they come home!

Take care
Jenn

Friday, October 11, 2013

Pre-mature Labor

I thought I'd do a blog post with a bit more detail so I can remember everything later.  But first off, I can't remember if I posted about Macy's bone marrow biopsy results; so incase I didn't I'll talk about that as well.

So Macy had her first bone marrow biopsy Sept 30th. Adam brought her bc I was sick and couldn't go. If you're sick you're not allowed in the Hemonc clinic for the safety of the other children. Adam said she did very well. Her counts came back kinda lower than I would like. Her WBC has always been a 9 or above, and it was a 5. Her platelets were 128,000. Normal is 140,000 and above. After her regular appt was the biopsy. So they put her under, and Adam said the procedure took about 15 minutes. He was back in the room before she woke up, and by the time they got home she was back to her normal self jumping and dancing. Once in a while she would put her hand on the back of her hip and limp a little, but that was gone by the next day.  So the results. The first thing they look for is abnormal looking cells or clones. Having these could indicate the beginning of leukemia. Macy's cells all looked normal. That's great news!  The second thing they look for is cellularity. Another FA mom told me that it should be 100 minus your age (in a normal non-FA person). So the typical kiddo it should be around 97%. Macy's was 50-60%. Which means the amount of blood cells her bone marrow is producing is about the same as a 50 year old. However, this is decent for someone with FA so I'm not going to worry.  They also noted she has very low iron stores in her bone marrow. This is also very normal for FA. Those with FA do not absorb iron correctly so even a supplement will do nothing for her, so she will always have lower iron.  So for now her biopsy will continue to be once per year. 

So last Friday at 28 weeks 5 days, I started having some back pain and menstrual-like cramps. They started in the afternoon and I tried to rest while Macy was napping. It wouldn't go away so I sent Adam a text at work letting him know when he got home from work I was going to go to the hospital to be checked. He came home a little early and we met my mom at the hospital where she took Macy. They did some monitoring at the hospital and checked my cervix. To my surprise I was dilated to 2cm.  About 10 days previous I was closed and long on the inside at 3.1cm. They immediately gave me a drug called procardia to try and stop my contractions but it didn't work. So they started an IV, and decided to start me on magnesium sulfate. First a really high bolus dose, then a maintanance dose. They warned me it was a nasty drug and that it would make me feel sick, and like my body was on fire. (Fun stuff). The big bolus dose was not fun. It relaxes all the muscles in your body so much that you can't really see or focus on anything (vision is like your really drunk). Your nose gets really stuffy, you feel loopy, and then your body gets hotter and hotter and hotter. The first dose takes 20 min. After that initial shock to your system your body starts to get a little use to it so your not as hot, but the other side effects don't go away. It also gives you really bad jelly legs to where you can't walk. Your legs just buckle beneath you. So after that, they checked my cervix again and it was at 3cm. They gave me the first shot of steroids for the babies lungs. (You get 2 that are 24 hours apart).  And they called an ambulance and had me transported to Spectrum downtown. I was super loopy from the mag but I remember the paramedic was really nice, and we talked about ArtPrize on the way. Adam followed us with the cord blood kits.  I also remember during the ride I felt stickiness up by back, etc. but didn't think much of it at the time. Once I got into labor and delivery I decided to reach back and see what the stickiness was. To my surprise it was blood, and lots of it.

The next 48 hours is kinda a blur.  I was so loopy on the mag I don't remember many details. Also being on mag causes pulmonary edema (fluid in your lungs) so they had to check my vitals every single hour for the first 48 hours. And my blood every 6 hours. The steroid shot makes your blood sugar get really high so I was also being checked for blood sugar levels 4 times a day, and given insulin shots 4 times a day. They took me off the mag (you can only be on it temporarily) and my contractions seems to be at bay. They checked me again and I was still at 3cm 70% effaced so they transferred me upstairs to the floor where the women are "stable".  I was so happy to finally get some sleep (Adam too). Getting up 15 times a night to pee (when you have jelly legs) amd have an IV pole plus monitors all over your belly is not easy. Once your transferred stairs they do monitoring 2x per day which is easier than 24/7. 

Adam and I were excited to get one good nights sleep. I was able to get my IV out, and all was well. Then I started having contractions 5 min apart all day again. I tried to tell them that these were more Braxton Hicks style like I've had my whole preg (even though they were regular) and that it was nothing. But to be on the safe side we were transferred back down to L&D, had a new IV put back in, and was monitored all night. They checked my cervix and it was still at 3cm so we were able to be transferred back up to our room in the morning. Things have been pretty quiet for a couple days so I got my IV out again yesterday. Yeah!!!  I still get BH quite frequently at times, but they are different than the contractions that landed me here so I'm pretty sure I can tell the difference. 

Today has been 1 week since we've been here. I'll be 30 weeks in 2 days!!!  That's very exciting and a lot better than if the twins were born when we got here at 28w5d. My high risk doctor and team comes around every morning to see how things are going.  So far they are very happy with how things are going. They said if I make it to 32 weeks I will be released to go home on strict bedrest. They said if I went into labor at that time it would not be stopped because twins tend to do very well once you are 32 weeks. They would likely spend a few weeks in NICU but would more than likely not suffer any long term medical issues.  

So we are taking baby steps, and our goal first is to hit 30 weeks. But ultimately 32 weeks.  Something kinda on a funny note is I am on a strict diet here. My carbs/sugars are limited and I get 3 meals and 3 snacks a day. Someme comes to my room everyday and does a menu where I pick out my meals and snacks for the following day and their delivered at 8am, noon, 5pm (meals) and snacks 10am, 3pm, 8pm (snacks). Well, for some reason the computer doesn't want to give me my snacks. My nurse or dietician has to call everyday after my missed snack to straighten it out then the next day comes and I don't get my snacks again.  I usually wake up in the middle of the night starvng. Hopefully it's figured out soon because I need my snacks.....preggo with twins remember!  

Lastly, I wanted to thank my parents and Adam's parents for taking Macy this whole time. Adam has been with me the entire time, and went back to work yesterday. But comes back after work and stays the night here with me. My parents have had our dog the whole time too; which is basically like another child to take of.  thank you!!! 

I did earn wheelchair privileges yesterday so Adam got to push me around the hospital for a while to get me out of my room which was nice!!!  That's about all that's going on for now. Hopefully it stays that way. 

Take care
Jenn


Friday, September 27, 2013

Macy bone marrow biopsy, etc.

So it's been a little while since I've updated, so I figured I'd quick do it while Macy is taking a nap. 

Macy had her 3 year well child last week. Everything looks good. We had planned on her getting her flu shot but two days before she started coming down with a cold which included a fever, so we have to wait now. She also has her HemOnc appointment on Monday. I am hoping her being sick this week doesn't affect her counts. Especially because since she was really sick in the spring, this was her blood draw to see how much (if any) that her counts bounced back. But now that she's sick again it probably won't be an accurate reading. We are all sick now, but the good news is it seems pretty mild. 

Also on Monday is Macy's very first bone marrow biopsy. I have been dreading it for the last two years, but the time has come that she has to start getting them annually. She will be put under so she won't remember anything, but will be sore for a little while. The purpose of this is to check for any cell abnormalities indicating the onset of leukemia or pre-leukemia, and to see how much of her bone marrow is actually producing blood cells. I'll probably find out more at the appt since I'm not completely educated on it yet since this is her first one. Adam is taking the day off work to be there as well, so that will be very nice. Macy is such a daddy's girl; it's very sweet. And we will be allowed to stay with her until she falls asleep. And brought back in hopefully before she wakes up. 

We received our cord blood kits for the twins from Minnesota yesterday. They are huge and heavy. Wow. I told Adam we will probably need to wagon them in with us bc their is no way we can carry them. Haha. I'm having a c-section so they can collect both babies cord blood at the same time (which is important), and we have to get the kits to Minnesota within 24 hours of the collection. We are not comfortable fedex-ing something so important (especially during holiday season) so we will fly it there, or Macy's grandparents have volunteered to drive it there for us (about a 10-11 hour drive one way).  Once they receive them they will test the blood to confirm they are HLA matches for Macy and will freeze them and keep them until it's time for Macy's transplant.......which I really wish was never.....but more than likely will be within the next 2-4 years.   

My OB ultrasound last Wednesday looked really good. No concerns at this time. Both babies are in the 50%tile for weight, and keep switching positions so much it confuses the ultrasound tech sometimes. At my previous u/s Baby A was vertex and B was breech. Now it's the opposite. Before that both were vertex. And before that transverse. They're just super wiggly I guess.  I had my regular OB appt this morning and I'm measuring 37 weeks. I'll be 28 weeks on Sunday.  Things are truckin along that's for sure! 

Take care
Jenn

Thursday, July 18, 2013

Found 2nd Mutation

So, after Macy was diagnosed with Fanconi Anemia we started doing gene sequencing to find out the specific mutation that Macy got from me and from Adam. At the time only one was found. The one she inherited from me. That was all we needed to do PGD for the twins because they do a DNA linkage to test the embryos. They confirm my mutation, and for Adam they figure out what FANC-A gene copy Macy inherited, and detect the linked DNA markers that are associated with the FANC-A gene. Its like DNA fingerprinting.  This is used to determine the gene copy of each embryo (mutated or normal).

However, we still wanted to know what the other mutation was for many reasons. One, incase there are any gene therapy trials in the future or if they ever find a cure it would be important information to know what 2 specific mutations she has. Knowing also allows anyone in Adam's family to be tested if they want to know if they are a carrier or not. There are also certain mutations that make you more prone to certain complications, etc.

So we joined up with the National Cancer Institute out of the National Institute of Health and they sent Adam and Macy's blood samples in for specialized testing. They called today and said they were able to find the 2nd mutation in Macy that matched the one that Adam carries. My mutation is a mutation on the FANC-A gene. Adams mutation is a large deletion of part of the gene itself. This is important to know because in genetics; if they ever find a cure; more than likely it will be from finding a way to fix the gene by adding something to a deletion. We were told that it is much easier to add something to a gene that is missing, than to fix a mutated one.

This is also important to know so when the twins are born we can confirm their FA free status by sending their blood in to be tested for our 2 specific mutations instead of having to do a chromosome breakage test. 

In other news, I know most people know already but incase you missed it; we found out both of our twins are boys!!!  We are excited!!  They are both doing great so far. Twin A measuring 1 day big and Twin B measuring 4 days big!  They have been measuring 3 days apart since I was 8 weeks so they are growing very consistently so far!  Both of my placentas are in front so my Dr said that may pose a challenge for my c-section. I have to have a c-section in order for the cord blood to be collected from both babies for Macy. If they have to cut through the placentas to get to the babies I will lose a ton of blood and there is a good chance I would need a blood transfusion. However, my Dr is going to try and prevent this by upping my iron a lot before delivery. I'm not too worried about it. As long as the babies are safe and they get that cord blood; that's what's most important. 

I hope everyone is having a great summer!  We are off minivan shopping soon!!

Take care

Jenn

Tuesday, July 2, 2013

Macy Hematology/Oncology blood Results

Macy had her HemOnc blood draw yesterday. Adam brought her because he had blood that needed to be drawn as well for the National Institute of Health (National Cancer Institute) for a study we are participating in. He said Macy did great, and they were able to get what they needed on the first poke! That's always a plus. When she came home she was all smiles because she was so excited about the poke toy she picked out. It was this ball with little suction cup-like suckers on the tips, and when you throw it at a window or something it lights up and flashes. She loved it! :)

They called with her results later and they were ok. Not great though. I guess I had always hoped that her counts would stay well within the normal range until she was 5 or 6?  Maybe that's just unrealistic and wishful thinking, but it stinks seeing her numbers go down over time. Like I said they are still ok, especially for someone with FA but I was hopeful they wouldn't be going down yet. 

WBC (white blood count) <--- this was the most surprising. Her WBC is always between 9-11. Nicely in the normal range. But this time it was 6.19. Which is BARELY in the normal range. Normal is 6-18. 

ANC (absolute neutrophil count) was 1070. Hers has always run a little on the low side so it wasn't too surprising. Normal is 1500 to 6000. 

Platelets-this is where we have seen the biggest drop. A year ago they were steady at 250,000. After she got sick last October her new normal was 180,000. Then she got sick back to back this spring, and now they were at 140,000. Normal is 140,000-400,000 so she is barely in the normal range now. 

Other than that Macy is doing very well. Hips are doing good, kidney is doing good, and her reflux seems to be getting better as she gets older. She drinking more water and eating more food so we have only been tubing her once a day. She's still pretty little weighing in at 22 pounds, but she will always be petite. 

As for me, it's kinda funny because you can tell when my morning sickness kicked into full swing because its July now, and our calendar on the fridge is still at May. Haha. I've been totally useless for the past 6 weeks it seems.  Poor Adam works all day, comes home and makes dinner, cleans the house, grocery shops and takes care of all of us. I'm sure he's pretty exhausted himself, but hopefully I will be feeling better soon. The weather has been soooooo nice this spring/summer. Not too hot, not too cold. In the 70's a lot, and I'm missing it!!  I'm puking the summer away, but really---I'm not complaining. It's totally worth it. 

We have decided to buy a minivan in September. It's the best way to fit 3 car seats in the vehicle and still be comfy. I never thought I'd be excited to buy a van, but I am, and they sure seem to have come a long way. The new ones don't look nearly as vanny as they use to, so that's a plus. And they actually have towing power so I think that won Adam over. 

One week from my ultrasound!!'  Should find out genders then!!!!! Can't wait. I'm still putting my money on 2 boys. 

Take care
Jenn

Thursday, June 13, 2013

Macy and Babies Update 6/13/13

Just wanted to update how everything was going. Macy is doing well. We have been busy in the yard a lot lately ( when I say we, I mean Adam). We (Adam) brought in a bunch of black top soil and leveled out a portion of our backyard, seeded, and put Macy's playhouse together. She loves her playhouse. We call it her Doc McStuffins house. Haha. It has a sink, etc and her favorite thing is to pour a bottle of water in the sink and pretend to wash her hands. :)

Macy is due for her hem/onc labs in about 2 weeks. This will be the first draw since she was sick with back to back illness in March and April. Her counts were low then so I am anxious to see what they are now. Hopefully good. 

She also has her annual genetics appt in a few weeks. Most people have never been to these (why would you unless you have a genetic issue), but they are kinda strange. They basically inspect your entire body and make notes. There are certain criteria for every body part in terms of how big, long, etc. that it should be and they give everything ratings. From the size of your eyes, to the angle your ears sit on your head, and the distance between your nose and upper lip. They even rate the shape and positioning of your toes. Yeah strange. I always find myself defensive as they are going through and rating Macy. I don't know why...maybe motherly instinct or something.  During the appointment I always find myself wondering how NOT fun this guy would be at a party or social gathering. Is he constantly looking at people thinking "her frenulum is 1cm too long", or "his eyes are a half inch too far apart"  haha. 

As for me, my morning sickness has been horrendous. I feel like its slightly starting to let up (please). The babies are doing great!  I had my most recent ultrasound on Tuesday. They are both measuring great and heartbeats were nice and strong at 168 and 172. After the ultrasound tech did all the measurements (said all looked good!) we just sat and watched the babies for a while. They were pretty funny bopping all over. Doing yoga and headstands. Just for fun the tech wanted to see if we could get a hint of the genders at all. I was only 12weeks 2days so still very early to really tell. But it was fun to look and guess. She thinks they are both boys. Then she flip flopped back and forth on Twin A. Girl then boy. It'll be interesting to see what they turn out to be. My next ultrasound is in 4 weeks. I'll be 16 weeks and we should find out then. So excited!!!!


Take care
Jenn

Monday, May 13, 2013

Yeah!!! Go Twinsies!

I had my 8 week ultrasound today, and both baby's are looking great!  Baby A measured 15.5 mm with a heartbeat of 170, and Baby B measured 17.5 mm with a heartbeat of 174! Everything is on track and looking perfect!  I have been officially released to my OB/GYN, and we are thrilled!


In recent Macy news; she has been staying home and getting healthy. She had her nephrology appt. last week and her horseshoe kidney is doing great!  No concerns. The bloodwork checking her kidney and liver were also great. Since she has been sick her platelets have dropped quite a bit. They were 178,000 before getting sick, and a month ago when she was sick they dropped to 116,000, and last week they dropped further to 113,000. Normal is over 140,000. We have been trying hard to keep her away from people lately so she can stay healthy enough for her platelets to go back up (since we are in a never-ending cold and flu season). Her next draw is at the end of June, and hopefully they will be back over 140,000 again.

As for me. I've been feeling decent. Tired, and some mild nausea that comes and goes. Lots of food aversions. Pretty much all food sounds gross except fruit. At this point in my pregnancy with Macy I had severe morning sickness; so so far the twins are letting me off easy!  Although that could change! :)

Take care
Jenn


Saturday, May 4, 2013

2 long years

I couldn't let today go by without posting something. Exactly 2 years ago was when Macy was diagnosed with Fanconi Anemia. The phone call that forever changed our lives.  I honestly can't think of anything worse than someone telling you your child is going to die much too early.

We have come a long way in 2 years. Our knowledge of FA and our hopes and dreams for Macy. It is really then, 2 years ago that our journey began to get pregnant with a sibling donor for her. When we found out this technology existed we kept saying "how can we NOT do this". It took a year of genetic testing, and almost a full year of back to back IVF cycles and finally this last FET. We are finally pregnant with twins, and even though its still early and there have been a couple bumps along the way so far with this pregnancy; I am still optimistic that it can work out.

If it is successful, and we end up with 1 or 2 babies which in themselves are a miracle, it means Macy will not have to have radiation with her bone marrow transplant, and that her chances of surviving, and surviving without complications is much higher. If everything goes well she will be cured of the blood disease part of FA; not FA Itself. But it is a big hurdle to overcome. We are hoping it will buy enough time to when Macy is in her late teens and early 20's (ages she is most likely to get cancer) that hopefully by then they will find a cure, or atleast have better ways of treating FA cancer patients.

I finally have hope, real hope that Macy will be okay.

Wednesday, April 24, 2013

First Ultrasound/Macy sick

It seems like its been pretty crazy since we found out I was pregnant. Macy has been sick on and off for the last month; more than she has been in her entire life up to now. She will get better for 3 days or so then get sick again. The newest is pink eye in both eyes, a sinus infection, and a double ear infection. She has never had any of these before, and I can only assume its because she s going to school now. She started a month ago. I called her teacher this morning and told her she will be out for the next 2 weeks. We want to keep her at home and away from people until she is completely healthy again. And even then I am not sure if we are going to pull her from school, or not. It's hard because its so good for her socially, and she really likes going. But it's definitely not worth her life. I was also thinking of just pulling her until summer time; when this extended cold and flu season seems for be over. They have a lot less kids in the summer too so I don't know; we will see. Adam is also sick right now, he started a Z pak on Monday so hopefully will feel better soon. It's been hard because I've been trying to stay away from both of them so I don't get what they have since I am in the early first trimester.

With that said I had my first ultrasound yesterday. It was originally scheduled for today, but I woke up in the morning with a little bit of red blood on the TP and freaked out. If you've ever had a miscarriage before you know what I am talking about. Red blood=scary and bad things usually. So I emailed my nurse from Chicago, and called our local IVF clinic to move up my ultrasound. I thought for sure it was over and was really upset. My nurse called and doubled up my progesterone. So I am doing 2 shots in the backside a day now. Somehow we got really lucky...whew! Everything looked great in the ultrasound for 5w2d. They expect to see a nice sized gestational sac, and most of the time at this stage a yolk sac. Well, we found out we are having Twins!!!! They saw 2 nice gestational sacs and 2 clearly visible yolk sacs. They also did not see any bleeding in the uterus at all or around the g. sacs. He said it can be common to see some bleeding with twins because your uterus is expanding quicker than with a typical pregnancy and some blood vessels can burst. It can also come from the cervix as well. So everything looked great and he said there is nothing to worry about at this time. My next ultrasound is next Wed. and we should hear heartbeats then!!!! I'm so excited! My due date is December 22. But with twins will be more like beginning of December or even very end of November!

Take care,
Jenn

Thursday, April 18, 2013

Preg test results

I don't know why I've been putting off this post for the last few days. I guess it's because it's been kinda a crazy week. A day or so after we got home from Chicago Macy had a really high fever that wouldn't break with Tylenol (she's not allowed to have Motrin due to her FA). Her temp ranged from 102.5-103.8. So when Adam got home from work he brought her into the hospital. We decided it'd be best if I didn't go. We didn't want to risk me getting sick or catching anything in the hospital. One thing we didn't foresee was that he would be gone when it was time for my progesterone shot. 

This is a 1.5 inch needle that has to be injected directly into the muscle. And soon I realized I'd have to do it myself. Adam does a great job when he gives them in my backside. I can barely feel it. But giving it to yourself is a completely different story. I had to do it in the thigh. It hurt like a %#*$@ and I told him I'm never doing that again. 

Blood everywhere and I almost fainted. Fun times!  Luckily our couch is already red. 

The next morning Macy woke up around 4am, and Adam got her and was rocking her in the rocking chair in her room. I decided to sneak off and do a home pregnancy test. At this point I was 5 days after the transfer and even though it was still really early it is possible to get a positive for the first time that day. I did the test, and a very faint second line appeared. I freaked out, busted in Macy's room where Adam was reading her a book and said "oh my god, I think I'm pregnant!"  We both went in the bathroom and stared at the little pee stick for about 10 minutes. Definitely a line there. 

So over the course of the next 4 days, I did about 12 pregnancy tests just to be sure. The line got darker and darker!!!!  Excited but nervous for my first blood test on the 15th. 

After a long wait I got the call around 4pm last Monday!  I heard the best words imagineable. "Congratulations, you're very pregnant!  HCG level is 321, and they want it be atleast over 100. I went back for my second test Wednesday (yesterday) and my HCG is 609. They like it to double every 48-72 hours so it is looking good!  My first ultrasound is next Wednesday. I'll be 5w3d.  It'll be too early for a heartbeat, but they are looking to make sure the pregnancy is in the uterus(not ectopic, when it implants in the fallopian tube or somewhere else----which would be bad), and how many. Since we transferred 2, and my levels are decently high, it is possible it could be twins!!!

So we are very happy, almost still in disbelief. I like to say I am cautiously optimistic because its so early still. I will feel much more confident when we see a heartbeat. Which should be at the ultrasound the following week. This ultrasound we want to see a gestational sac, and a yolk sac.

Trying to stay relaxed, and just being happy and thankful that things are going well right now!



Here's a picture of my progesterone shot; this is what happens when you don't have the band-aid ready!



My HPT's---the digital one only says pregnant for 24 hours before the battery dies.




Take care
Jenn

Sunday, April 7, 2013

...and we wait

Macy had her very first day of preschool a couple weeks ago. She is going 2 days a week for 3 hours, and she absolutely loves it.  Just in the couple times she has gone we can already tell a difference in her talking. She is definitely talking more.  Here are a few pics of her first day. 





We also went to the Grand Traverse Resort and Spa for Easter weekend! Macy had fun making cookies, playing in the candy shop, swimming, watching a magic show, and she even went to the resorts kitchen and made her own pizza with the head Chef! It was a nice little get-a-way!



























Adam and I went to Chicago last weekend for our embryo transfer. We transferred 2 healthy matches, and still have 1 frozen. Thank you to Macy's grandparents for trading off and watching her for the 3 days we were gone! We really appreciate it! My blood test is the 15th so hoping atleast one will stick!

Take care
Jenn

Monday, March 25, 2013

Macy Hematology Appt 3/25/13

Okay, so for some reason whenever I bring Macy to her HemOnc appointment I always act like a weirdo. I don't know why, maybe it's nerves from waiting to find out her counts so I say a bunch of stupid stuff that doesn't even make sense. I'm not sure. And it's one of those things where you can tell you're coming off as weird, so the more you try to not act weird---the more weird you are. I don't do this at any of her other appointments so I don't know what my problem is. Oh well. So her Dr. probably thinks I'm a kook...I guess that's fine.

Anyways, Macy had a rough visit. She wouldn't let them get a blood pressure or anything. The actual blood draw went well. They were able to get what they needed the first try. But she screamed bloody murder the whole time, and wouldn't even look them in the face. Her poke prize was a Minnie Mouse notepad and markers which she really liked, so that helped while we waited for the results. She was sure glad to get out of there! On a side note, there was a commercial on the other day for the children's hospital and Macy pointed at the TV, shook her head and said "No" and ran out of the room. So guess that's how she feels about it. Haha.

Macy's Stats
Hemoglobin
12.4

Platelets
176,000

White Blood Count
11,600

Absolute Neutrophil Count
1,770

So her numbers look good right now, so that's a relief.

Hopefully I will be pregnant before her next appointment! I will know by April 15!

Take care
Jenn

Wednesday, March 20, 2013

PGD and HLA results in...

So I just received the call and it is such good news!  We have 3 embryos that are healthy and an HLA (bone marrow) match for Macy!   So happy and excited!!!!

We would like to transfer 2 and save the 1 for if the first 2 do not take. I am not sure if my Doctor will let us transfer 2. I think he is pretty big on eSET's (elective single embryo transfer), but we will see! We've never had more than 1 before so this is so awesome!  

I don't know how many healthy non-matches we have yet, because she called me right after the results came in. She also said something about a couple maybe needing to be re-tested. I am not sure if that means we could end up with more than 3, or not. I will get more details later on what she meant, but I am just really happy we have the 3 now!

Whew!  One more step...

Take care
Jenn

Friday, March 8, 2013

Wowza embryos!

So today was the big day! The next big step towards having a healthy, FA-free baby ( or babies) and securing Macy's donor for her bone marrow transplant. We found out the best news ever! We had 25 embryos make it to the blastocyst stage that were biopsied and frozen....25!!!!!! That is so wonderful I can't even explain how great it is. We will find out in 1-2 weeks the PGD testing results. Statistically we should have 4 healthy matches from 25 embryos but I'm not getting that crazily optimistic. I'll shoot for 2!!!' That would be awesome. Anything more would be exceptional! I also received a surprise for me to start my Lupron tonight for our FET (frozen embryo transfer) which is scheduled for the beginning of April!!!! Eek!

Only good news allowed from here on out! Has to be...

Take care
Jenn

Saturday, March 2, 2013

Fertilization Results-IVF #3

So we went to Chicago and had our egg retrieval yesterday morning. I was super nervous because they were running behind in the OR, so we didn't get in there until 1 hour after the scheduled retrieval. I was so anxious about ovulating on my own before the retrieval. Because that can happen. If that happens your cycle is scrapped and you have to start over. I don't know why I was so paranoid about it; but I was. Luckily, that didn't happen and everything went great! I got awesome drugs and was out like a light for the whole thing, and felt fine after I woke up.

Adam said as I was coming to the first thing I said in a very slurred voiced was "how many they get". Always have my eye on the prize. Hehehe. I was over the moon when he said "39". 39 eggs.....woweeee!! I was cautiously excited since usually there are some that are not mature, and not all will fertilize. I think the Dr. told Adam usually 50%-80% fertilize. (that would be 19.5-31.2 eggs in our case).

Last night I took my antibiotic before bed (to prevent infection) and woke up this morning itching like crazy. I looked in the mirror and I have a full body rash. I must have an allergic reaction to doxycycline. So I decided to wait until Mary (my IVF coordinator) called with the fertilization results and tell her then.

So she called and did call in a new antibiotic for me at the pharmacy. We got wonderful news today because out of the 39 eggs, 36 fertilized!!!' Yes, 36! That is better than I could have hoped for!!!!' Still being cautiously excited because out of what fertilize maybe 50% (if that) will make it to the blastocyst stage on day 5 or 6. Those are the only ones that will be biopsied and frozen. So we will get news again in about a week to find out how many were biopsied and frozen. I hope it's a lot, because if it is we could have a real chance this time!!! Maybe even have more than 1 that is a healthy match!!! Eek! A week after they are biopsied we will get the results. Please pray for us that we have a lot this time!!!! I feel like we are so close to making this happen!

Take care
Jenn

Wednesday, February 6, 2013

Chugging Along

So February is here and we are still chugging along. Macy is on antibiotics for a "maybe" ear infection. At 2.5 she's never had one before. She started pulling at her ear a lot last Thursday and had a slight temp. I didn't want to take any chances so we went to the Dr. She said her inner ear was slightly red, and could be the sign of the very beginning of something. But Macy didn't meet the other qualifications of being treated for an ear infection (no fluid or puss, temp wasn't over 100, etc.). She also said it could just be irritation from the chlorine from the pool (from her swim lessons). However, since it was Macy she would give me antibiotics if I wanted them just in case it was the start of something. So I took them. One thing I LOVE about Macy's Pediatrician is that she has known Macy since she was 1 day old. She has been there through the hospitalizations, surgeries, and the life-altering Fanconi Anemia diagnosis. She even read the entire FA treatment book that the Fanconi Anemia Research Fund gave us, so she would know more about the disease. She is awesome, and that's why we drive 45 min to see her. 

Macy has a blood draw coming up next month. Hopefully her numbers will remain stable. That's always a nerve-wracking appointment. She will need to start getting her bone marrow biopsies soon too.....not looking forward to that at all. She also had her first dental appointment yesterday. She did soooo good!  The dentist said her teeth and mouth all looked great. Hopefully it stays that way because oral cancer is one of the most common and deadly cancers with FA. 


















Macy has been enjoying the winter weather going for snowmobile rides and sled rides. She has this Tinkerbell and Fairies playhut that she absolutely loves playing in lately. Tinkerbell is her favorite right now with Ariel a close second!  Her swim lessons have been going great. I am going to go and take pictures at the next lesson (Adam takes her usually). Adam said she is doing really good at kicking and being on her back in the water.  When lessons end we will probably take her for open swim because she likes it so much. It helps that it is at the high school and we live about 1 minute away!  

As for our IVF, I will be starting stims in about a week and a half. I have my appt with my bloodwork, etc. tomorrow so we are definitely on our way.  Hoping the third time works. 

take care, Jenn

Sunday, February 3, 2013

New web address

I just wanted to quick let everyone know that I changed Macy's blogs web address. I didn't like having her last name in the web address so I changed it to www.stewbug.blogspot.com.
Hopefully this won't mess up anything for those that are followers via email. Thanks!!

Also I will be posting some Macy updates soon with some adorable pictures of her!

Take care, Jenn

Thursday, January 3, 2013

2013! New plan & Macy pics

So, we have a new IVF plan now, but I will get to that later.   Here are some cute pictures from the last couple months of Macy!

Halloween!  This is the best picture I could get...she was too busy watching something on her ipod so she wouldn't look at me.  The right is trick or treating at the high school!

 

Making caramel apples!!


Great Wolf Lodge . She has the same hand in mouth look for meeting both Violet and Santa.  She was really excited, but her molars are coming in and her mouth was bothering her so that's why her hands are in her mouth.  Regardless, she had a great time!


Macy loved the wolf statue and kept giving it hugs.  I think it reminded her of Bela (Bayla) our dog.  She had a blast in the arcade, and thanks to her cousins sharing their tickets she was able to get a pink wolf and twisty lollipop!


Christmas!!!!  Even with our not so great news earlier this month we still had a great Christmas.  And more importantly Macy did.


Collage of silly faces...

Fun in space!  She LOVES the balloon ride!


So, Macy has been doing well.  She had her hip xray a few weeks ago and it looked perfect!  That is a nice worry to take off our plate.  She also had her hematology/Oncology bloodwork.  Her platelets dropped a lot, but are still stable.  I'm trying not to worry too much yet.  We will see what her next one looks like.  Hopefully a fluke.

I had my follow up appt. with my Re.  We decided to do something different for our next cycle.  We are going to do both IVF and the PGD through Chicago.  He thinks we may get better results that  way.  So we have a consult with that Dr. next Thursday.  My current/local IVF place will still do the monitoring part so I don' t have to drive to Chicago every other day for 2 weeks during that part.(6 hour round trip)  But we will go to Chicago for the egg retrieval and transfer, and they will be in charge of my protocol.  We are hoping if the retrieval, fertilization, biopsies, testing, and transfer are all done under one roof there is less chance of contamination with the samples, and less embryos will come back as inconclusive.  I have no idea what the price difference will be, but hopefully it won't be too much more.  So that's the plan for now.  Hopefully there is a hotel really close to them, because big cities freak me out...I think it is the traffic and one lane streets that bother me the most.

Until then we are going to try and enjoy winter!!!!  And Adam and Macy start swimming lessons next Saturday!!!  It is for 7 weeks, and I know she is going to love it!    Not to mention the invaluable daddy/ daughter time!

take care,
Jenn