Bad news and good news this morning...
Bad news - Sticky's amniotic fluid levels are back down to 5-6 (despite drinking over 2 gallons of water yesterday!)
Good news - I don't have to go back to the hospital yet.
I have another appointment on Monday morning. I will be hydrating and on bedrest over the weekend - praying his amniotic fluid goes up. If it is 5 or below on Monday, then I will most likely be admitted to the hospital again (possibly to be put on bedrest until delivery).
Please keep those prayers coming that Sticky's kidneys stop growing, but keep working. Pee, Sticky, Pee! Thanks for your continued support.
Friday, April 29, 2011
Wednesday, April 27, 2011
We are home!!
We were released from the hospital this afternoon - yay! So glad to be home and play with my pups!
I met with both a neonatologist and perinatologist this morning/afternoon. Our plan is to monitor me very closely. We need me to carry Sticky as long as possible to avoid complications of prematurity. However, we have to keep an eye on his kidneys. If they get too big they could permanently compromise his lung development. The doctors will most likely have to make a decision (hopefully, much later!) on whether Sticky is better off inside or outside.
I'm on modified bedrest. I can go to work, but when I'm home I should be lying on my side. Poor Jon will be stuck with all of the house chores! I'm lucky he is so sweet. I also need to drink at least a gallon of water a day. I'll have another ultrasound on Friday to see how things are going.
Will be continuing to pray that his kidneys stop growing, but keep functioning! Thank you soo much for your continued support. We feel so very blessed!
I met with both a neonatologist and perinatologist this morning/afternoon. Our plan is to monitor me very closely. We need me to carry Sticky as long as possible to avoid complications of prematurity. However, we have to keep an eye on his kidneys. If they get too big they could permanently compromise his lung development. The doctors will most likely have to make a decision (hopefully, much later!) on whether Sticky is better off inside or outside.
I'm on modified bedrest. I can go to work, but when I'm home I should be lying on my side. Poor Jon will be stuck with all of the house chores! I'm lucky he is so sweet. I also need to drink at least a gallon of water a day. I'll have another ultrasound on Friday to see how things are going.
Will be continuing to pray that his kidneys stop growing, but keep functioning! Thank you soo much for your continued support. We feel so very blessed!
Ultrasound Results - Some good news!!
Thank you SOOO much for your prayers, because God answered them this morning! The IV seemed to help. My amniotic fluid level is now 7.8 (I round that up to 8!) The tech said his kidneys are still functioning somewhat, but that she could see mild urine back-up. I like the word mild! She also could see the bladder and it had a little urine in it. She said his bladder wasn't distended, so that is also good news. His kidneys are a whopping 6 cm! (average adult kidneys range from 8-12 cm) Please pray that his kidneys simply STOP growing, but keep functioning.
There was enough fluid to actually see Sticky today. He sure is cute! Sorry no new pics. But he still looks just like his daddy (the tech agreed wholeheartedly!)
Next step is to meet with the doctors about the results and monitor sticky for an hour. Hoping I can leave today, because I'm badly missing three adorable dogs!
Thank you for your continued prayers and/or positive thoughts!!
Jon went home to let the pups out and sent me some cute pictures! I can't wait to see them (hopefully soon!)
There was enough fluid to actually see Sticky today. He sure is cute! Sorry no new pics. But he still looks just like his daddy (the tech agreed wholeheartedly!)
Next step is to meet with the doctors about the results and monitor sticky for an hour. Hoping I can leave today, because I'm badly missing three adorable dogs!
Thank you for your continued prayers and/or positive thoughts!!
Jon went home to let the pups out and sent me some cute pictures! I can't wait to see them (hopefully soon!)
 |
| This is Bolt's "I want a treat face!" |
 |
| I think Coco is finishing off her treat and of course Tank is missing Mommy in the background! |
Breakfast in Bed!
I thought I would lighten the mood on here and post a picture of my room service breakfast! All the nurses were raving about the food, so I was excited. Apparently the eggs and grits weren't the best choice - I knew I should have gone for the Belgium waffles! Oh well, I was starving so it didn't matter! Can you spy the sweetest hubby in the background? :-)
Tuesday, April 26, 2011
Update 4/26/11
Sadly, today's update is not as optimistic. We had our regular two week ultrasound and received bad news. Sticky's kidneys are HUGE! The doctor said they should be one-fourth the size that they are now. They are so big that they are starting to put pressure on his lungs. In fact, they saw fluid in his lungs, which is not good. Also, his amniotic fluid is down to 5 (should be between 10 and 20). This means that his kidneys are not functioning well and Sticky is not "peeing" like we all hoped he would continue to do. After my appointment I was admitted to the hospital and am on a hydrating IV for 12 hours. They are hoping this will help to up my amniotic fluid. I will have another ultrasound in the morning to see if it is helping. We will also be meeting with neonatal doctors to discuss various options. I was given a steroid shot to help with his lung development (in case I had to deliver early). I am not currently at risk for pre-term labor, which is VERY good news. We need Sticky to stay in as long as possible to help with lung development and because he will need to be at least six pounds to receive dialysis (he is currently 2 lbs and 4 ounces). We are now playing the major waiting game. We want him to stay in as long as possible, but if his kidneys keep growing like they are now, they may compromise his other organs. Very fine balance. I guess my prayers will now include "Pee, Sticky, Pee" and "Kidney growth level out!"
Also, I talked to the doctor about amnio infusions (where they insert saline into the uterus). The doctors do not think this is a good choice at this point. The risks of infection and rupturing the membranes outweigh any benefit it would provide.
Hoping to get some good news in the morning. I will update again.
Also, no new pictures of Sticky. Unfortunately low amniotic fluid makes picture taking very difficult. However, here are two pictures of me and Jon "enjoying" our hospital stay! The nurse and I are going to try and get Jon in a hospital gown later on for a nice photo op!
Thank you so much for your continued prayers and positive thoughts! We are going to do everything we can to bring this little guy home.
Also, I talked to the doctor about amnio infusions (where they insert saline into the uterus). The doctors do not think this is a good choice at this point. The risks of infection and rupturing the membranes outweigh any benefit it would provide.
Hoping to get some good news in the morning. I will update again.
Also, no new pictures of Sticky. Unfortunately low amniotic fluid makes picture taking very difficult. However, here are two pictures of me and Jon "enjoying" our hospital stay! The nurse and I are going to try and get Jon in a hospital gown later on for a nice photo op!
Thank you so much for your continued prayers and positive thoughts! We are going to do everything we can to bring this little guy home.
 |
Wednesday, April 20, 2011
Sweet Surprise for Sticky
One of my friends sent me the sweetest gift for Sticky today! Isn't it perfect?
Friday, April 15, 2011
Fetal Echocardiogram - 04/15/11
We had our echo today and it went very well! We really like the ultrasound techs and doctors at this practice. They are so nice and comforting!
Anyhow, Sticky's heart is of normal size and function. Also, no thickened heart wall like my other doctor suggested! There is still fluid around the heart but it is remaining trivial. Also, there is a mild pulmonary valve leak, but the doctor did not seem very concerned by it at this point. I go back in three weeks for another echo to keep monitoring everything.
I've been praying hard for no new bad news and it seems those prayers are being answered! Thank you for your continued support, positive thoughts and prayers. Sticky, Jon and I appreciate them very much!
I'm posting two new pictures below. The ultrasound tech (who has 35 years of experience) gave us her professional opinion about who Sticky looks like...she said Jon! We can't wait to meet our Jon Mini-Me :-)
Anyhow, Sticky's heart is of normal size and function. Also, no thickened heart wall like my other doctor suggested! There is still fluid around the heart but it is remaining trivial. Also, there is a mild pulmonary valve leak, but the doctor did not seem very concerned by it at this point. I go back in three weeks for another echo to keep monitoring everything.
I've been praying hard for no new bad news and it seems those prayers are being answered! Thank you for your continued support, positive thoughts and prayers. Sticky, Jon and I appreciate them very much!
I'm posting two new pictures below. The ultrasound tech (who has 35 years of experience) gave us her professional opinion about who Sticky looks like...she said Jon! We can't wait to meet our Jon Mini-Me :-)
 |
| Front Face View |
 |
| Profile |
Tuesday, April 12, 2011
OB Appointment 4/12/11
Sticky had another ultrasound today and it went well! I have been praying that we don't get any additional bad news, and we didn't!
Overall, Sticky's condition seems stable. His kidneys are obviously still enlarged and echogenic, but there is some function because he continues to produce amniotic fluid. The tech measured around 10.5 which is within the normal limits (although toward the lower end). She also saw his bladder fill up, which is a good thing! All the "pee, Sticky pee!" prayers are working. :-)
The edema was still present in his abdomen, under his skin around his heart. However, it did not seem to have gotten any worse from last time. The tech said she could barely see any fluid around the heart! Typically, edema can be an indicator of heart failure. However, in our case it is most likely linked to his kidneys not working properly so Sticky is storing excess water in these places. When I asked what this means for after he is born, she mentioned dialysis and eventual transplant (these are options I understand and am prepared to face). Hopefully his heart will not be compromised! We just need his kidneys to keep functioning well enough while in utero so he keeps producing amniotic fluid so his lungs can fully develop.
Other than that, he was being very cute today. I hated that Jon wasn't able to be there. I saw the most adorable yawn. He was moving his hands all around and wiggling his fingers. The tech made a comment about how long his fingers are (Jon will be delighted to know this...better for catching footballs!) However, he was being his camera-shy self, but I got a couple of shots that I'll post below.
Next appointment is Friday - it is our follow-up echo. Luckily Jon will be at that one. Thank you for all of your continued prayers and/or positive thoughts. Sticky feels very loved!
Overall, Sticky's condition seems stable. His kidneys are obviously still enlarged and echogenic, but there is some function because he continues to produce amniotic fluid. The tech measured around 10.5 which is within the normal limits (although toward the lower end). She also saw his bladder fill up, which is a good thing! All the "pee, Sticky pee!" prayers are working. :-)
The edema was still present in his abdomen, under his skin around his heart. However, it did not seem to have gotten any worse from last time. The tech said she could barely see any fluid around the heart! Typically, edema can be an indicator of heart failure. However, in our case it is most likely linked to his kidneys not working properly so Sticky is storing excess water in these places. When I asked what this means for after he is born, she mentioned dialysis and eventual transplant (these are options I understand and am prepared to face). Hopefully his heart will not be compromised! We just need his kidneys to keep functioning well enough while in utero so he keeps producing amniotic fluid so his lungs can fully develop.
Other than that, he was being very cute today. I hated that Jon wasn't able to be there. I saw the most adorable yawn. He was moving his hands all around and wiggling his fingers. The tech made a comment about how long his fingers are (Jon will be delighted to know this...better for catching footballs!) However, he was being his camera-shy self, but I got a couple of shots that I'll post below.
Next appointment is Friday - it is our follow-up echo. Luckily Jon will be at that one. Thank you for all of your continued prayers and/or positive thoughts. Sticky feels very loved!
 |
| Profile - 23 weeks, 2 days |
 |
| Crazy face-on with arm by his head |
 |
| He has five toes! |
Sunday, April 10, 2011
Friday, April 8, 2011
Tuesday, April 5, 2011
Some good news!
My genetic counselor called to tell me that Sticky's microarray tests came back clear. This test looks for more specific chromosomal issues than just the regular amniocentesis. So, that's good news!
Had acupuncture this morning. This always makes me and Sticky feel so much better.
Had acupuncture this morning. This always makes me and Sticky feel so much better.
Friday, April 1, 2011
What I am doing to help?
Unfortunately, there is not much I can do to help sweet Sticky. I do treat myself like I have PKD and steer clear of foods that should be avoided when one has PKD. Basically, I have to avoid animal protein, sodium, and caffeine. The last one means no chocolate!! (This one is especially hard for a pregnant woman). I try to eat lots of fruits and veggies and drink tons of water. I also know that stress and anxiety can only be bad for him, so I try very hard to stay optimistic and relaxed (much easier said than done!) To aid in this, I go to see an acupuncturist every two weeks. She also treats me like I have kidney disease by placing the needles in the corresponding pressure points. I also read that apple cider vinegar can help PKD, so I drink a few tablespoons of that each night. I also take Flax Seed oil because it has been shown to reduce cyst growth in patients with PKD. Not sure if any of this will work, but it can't hurt! Just trying to do everything I can to help our sweet, defenseless little guy!
Pictures of Sticky from the outside
I am going to try and scan some of Sticky's ultrasound pictures, but for now here are some of his growth from the outside! He seems to be making himself comfortable in there!
 |
| 14 weeks |
 |
| Almost 17 weeks |
 |
| 20 weeks |
Sticky's adventures so far...
November 30 - February 27
The most beautiful word! After our loss this summer we were so excited to be pregnant again. My first trimester was fairly uneventful. I craved a lot of sweets, so I was 100% sure we were having a girl. I was anxious about our anatomy ultrasound scheduled for February 28th, since that is when we got the devastating news about our last baby. I was feeling optimistic though and even cleaned out the spare bedroom in preparations for the nursery. I just knew we were bringing home this little bean!
February 28th - Anatomy Ultrasound
Unfortunately, the day started with a bad sign. As we were driving to the appointment a black cat ran out in front of us! I usually don't believe in that kind of stuff, but I may start.
I honestly feel like we had the EXACT same anatomy ultrasound experience as last time. We were in the same room with the same people. And we got the same bad news.
The tech started by asking if we wanted to know the gender. I said "Yes, but to wait until after we see if he/she is healthy." Look how optimistic I was! She started in the brain and I immediately knew something was wrong. She was taking lots of pictures and when I asked if everything was OK she said "Oh, the doctor has to tell you everything, that's standard." I knew she was keeping something from me. The doctor soon came in and we were shocked to find out that our sweet baby boy has the same exact issues as our angel. Choroid plexus cysts in the brain and enlarged, echogenic kidneys. The doctor did tell us that compared to last time, the kidneys weren't as big or as bright (also, there are no visible cysts, which there were last time).
The real kicker is that last time they suspected something called ARPKD, which is recessively genetic. Baby, Jon and I were tested and came back normal. So, I was really shocked when the same thing happened! We thought we were off the hook. I felt like there must be a genetic issue happening here. The doctors have NO idea what is going on. The doctor even took lots of pictures to share at his monthly conference on "rare cases!"
With that said, we had a very small GLIMMER of hope. We decided that we would try and get a true diagnosis this time. I had an amnio and scheduled a fetal MRI to have a better look at the kidneys. It was a very sad day.
March 11 - Fetal MRI
It was very LONG! The first session lasted an hour and a half. They sent the pictures to the radiologist to approve, but he still wanted more pictures (the tech called him a perfectionist!) Anyhow, they saw my bladder was full so I got a 30 minute break. Then I went back in for another 45 minutes.
During the first session, when I opened my eyes I could see the word "Angel." The blanket they wrapped me in was made my a company "Angelica," but the way it was folded I just saw "Angel." I had to smile at that!
The tech let me look at some of the pictures. Sticky is so darn cute! There was one picture where he had him arms raised up and it really looked like he was saying "enough of this already!" The tech said that my baby was "cute and moved around a lot, which is good." I love our little fighter!!
March 15th - Jon's Ultrasound
The doctors had advised us to get our kidneys checked for cysts to rule our ADPKD (the dominant form of polycystic kidney disease). They had scanned my kidneys during an ultrasound and they looked clear. We scheduled an ultrasound for Jon. Much to our surprise, his kidneys are enlarged, echogenic and cystic. We were in shock (still are), but it made us hopeful that this could be good news for Sticky. The prognosis for ADPKD is more variable than ARPKD.
March 16th - Sticky's Ultrasound
The appointment was pretty uneventful, because NONE of our results were in (my MRI, Jon's ultrasound, etc.) These practices are all in the same medical complex. You'd think they could be faster! Anyhow, Sticky was looking perfect in every way, except his kidneys. His amniotic fluid levels are normal, his bladder was full and even the choroid plexus cyst is resolving itself. However, his kidneys are bigger than two weeks ago and he now has a visible cyst in the left kidney. This was not too surprising to me though. My hope is at some point the kidney growth levels off. My MFM was not very optimistic with the prognosis at this point.
In my heart, I felt like he will be coming home with us and will just be a little mini-me of Jon! I am hopeful Sticky is our miracle!!
March 22nd - Appointment with Pediatric Nephrologist
Overall, she was nice and helpful. A few of the highlights:
1) She thinks Jon most likely has ADPKD.
2) She thinks the baby most likely has Glomerulocystic kidney disease (GCKD) which is a variant of ADPKD that shows up early. Ah, something new to research ;-)
3) She agrees that the best next step is having Jon tested for ADPKD
4) She also said it is important to have a micro-array to test for deletions (We have this test in progress).
She said that the prognosis for the baby depends a lot on how big his kidneys grow and if he stops producing urine. She did say it can be variable. She has treated one 14 year old boy who had cystic kidneys in utero and he is still asymptomatic. But, she has treated babies who die shortly after birth. All we can do is wait and hope for the best. She did admit that it isn't good that our baby's symptoms are showing up so early. She suspects his kidneys to be "huge" when he is born. However, I talked to her about options after birth and was happy with what she said. I feel comfortable with her and her team and that they will do everything they can (within reason) to help Sticky. For now waiting, praying, hoping, waiting, and praying some more!
March 30th - Sticky's Ultrasound
Well there was good news and bad news today.
Good news:
1) Sticky is still peeing!! Yay! The fluid is normal.
2) While his kidneys are big the doctor said at this point his lungs are not compromised!
3) His growth is on track.
Bad news:
1) His neck is really thick and this was unsettling. I have been cleared for Down Sydnrome, but apparently there are other chromosomal issues. Fortunately I'm getting a microarray, so hopefully that will give us some answers.
2) There was something concerning about his heart. Not sure what. He had a 168 bpm, but I was scheduled for a fetal echo that afternoon.
3) He appeared to have edema? Water between his skin and skull?? Not quite sure. The doctor said that they see these resolve themselves, but in conjunction with the other issues they want more information.
March 30th - Unexpected ECHO
The echo went well. His heart is working beautifully! Right now there is a trivial amount of fluid around the heart. He also has fluid in his abdomen and under his skin (hence the thick neck). The cardiologist assumes this is related to the kidney issue (i.e. not a chromosomal issue on top of the ADPKD). This is was very comforting to me! Obviously, it is still unsettling that he has the fluid where he should not, but hopefully it will not increase. I'm going back in two weeks for another echo to monitor. So I guess I'll be adding "no more fluid around the heart" to our "pee baby pee" prayers!
One good thing about these zillion appointments is that I have SO many pictures of Sticky! He sure is cute. Today he gave us a thumbs up! I took that to mean "Don't worry mom...I'll be OK!"
 |
| Sticky Bean at 12 weeks |
February 28th - Anatomy Ultrasound
Unfortunately, the day started with a bad sign. As we were driving to the appointment a black cat ran out in front of us! I usually don't believe in that kind of stuff, but I may start.
I honestly feel like we had the EXACT same anatomy ultrasound experience as last time. We were in the same room with the same people. And we got the same bad news.
The tech started by asking if we wanted to know the gender. I said "Yes, but to wait until after we see if he/she is healthy." Look how optimistic I was! She started in the brain and I immediately knew something was wrong. She was taking lots of pictures and when I asked if everything was OK she said "Oh, the doctor has to tell you everything, that's standard." I knew she was keeping something from me. The doctor soon came in and we were shocked to find out that our sweet baby boy has the same exact issues as our angel. Choroid plexus cysts in the brain and enlarged, echogenic kidneys. The doctor did tell us that compared to last time, the kidneys weren't as big or as bright (also, there are no visible cysts, which there were last time).
The real kicker is that last time they suspected something called ARPKD, which is recessively genetic. Baby, Jon and I were tested and came back normal. So, I was really shocked when the same thing happened! We thought we were off the hook. I felt like there must be a genetic issue happening here. The doctors have NO idea what is going on. The doctor even took lots of pictures to share at his monthly conference on "rare cases!"
With that said, we had a very small GLIMMER of hope. We decided that we would try and get a true diagnosis this time. I had an amnio and scheduled a fetal MRI to have a better look at the kidneys. It was a very sad day.
March 11 - Fetal MRI
It was very LONG! The first session lasted an hour and a half. They sent the pictures to the radiologist to approve, but he still wanted more pictures (the tech called him a perfectionist!) Anyhow, they saw my bladder was full so I got a 30 minute break. Then I went back in for another 45 minutes.
During the first session, when I opened my eyes I could see the word "Angel." The blanket they wrapped me in was made my a company "Angelica," but the way it was folded I just saw "Angel." I had to smile at that!
The tech let me look at some of the pictures. Sticky is so darn cute! There was one picture where he had him arms raised up and it really looked like he was saying "enough of this already!" The tech said that my baby was "cute and moved around a lot, which is good." I love our little fighter!!
March 15th - Jon's Ultrasound
The doctors had advised us to get our kidneys checked for cysts to rule our ADPKD (the dominant form of polycystic kidney disease). They had scanned my kidneys during an ultrasound and they looked clear. We scheduled an ultrasound for Jon. Much to our surprise, his kidneys are enlarged, echogenic and cystic. We were in shock (still are), but it made us hopeful that this could be good news for Sticky. The prognosis for ADPKD is more variable than ARPKD.
March 16th - Sticky's Ultrasound
The appointment was pretty uneventful, because NONE of our results were in (my MRI, Jon's ultrasound, etc.) These practices are all in the same medical complex. You'd think they could be faster! Anyhow, Sticky was looking perfect in every way, except his kidneys. His amniotic fluid levels are normal, his bladder was full and even the choroid plexus cyst is resolving itself. However, his kidneys are bigger than two weeks ago and he now has a visible cyst in the left kidney. This was not too surprising to me though. My hope is at some point the kidney growth levels off. My MFM was not very optimistic with the prognosis at this point.
In my heart, I felt like he will be coming home with us and will just be a little mini-me of Jon! I am hopeful Sticky is our miracle!!
March 22nd - Appointment with Pediatric Nephrologist
Overall, she was nice and helpful. A few of the highlights:
1) She thinks Jon most likely has ADPKD.
2) She thinks the baby most likely has Glomerulocystic kidney disease (GCKD) which is a variant of ADPKD that shows up early. Ah, something new to research ;-)
3) She agrees that the best next step is having Jon tested for ADPKD
4) She also said it is important to have a micro-array to test for deletions (We have this test in progress).
She said that the prognosis for the baby depends a lot on how big his kidneys grow and if he stops producing urine. She did say it can be variable. She has treated one 14 year old boy who had cystic kidneys in utero and he is still asymptomatic. But, she has treated babies who die shortly after birth. All we can do is wait and hope for the best. She did admit that it isn't good that our baby's symptoms are showing up so early. She suspects his kidneys to be "huge" when he is born. However, I talked to her about options after birth and was happy with what she said. I feel comfortable with her and her team and that they will do everything they can (within reason) to help Sticky. For now waiting, praying, hoping, waiting, and praying some more!
March 30th - Sticky's Ultrasound
Well there was good news and bad news today.
Good news:
1) Sticky is still peeing!! Yay! The fluid is normal.
2) While his kidneys are big the doctor said at this point his lungs are not compromised!
3) His growth is on track.
Bad news:
1) His neck is really thick and this was unsettling. I have been cleared for Down Sydnrome, but apparently there are other chromosomal issues. Fortunately I'm getting a microarray, so hopefully that will give us some answers.
2) There was something concerning about his heart. Not sure what. He had a 168 bpm, but I was scheduled for a fetal echo that afternoon.
3) He appeared to have edema? Water between his skin and skull?? Not quite sure. The doctor said that they see these resolve themselves, but in conjunction with the other issues they want more information.
March 30th - Unexpected ECHO
The echo went well. His heart is working beautifully! Right now there is a trivial amount of fluid around the heart. He also has fluid in his abdomen and under his skin (hence the thick neck). The cardiologist assumes this is related to the kidney issue (i.e. not a chromosomal issue on top of the ADPKD). This is was very comforting to me! Obviously, it is still unsettling that he has the fluid where he should not, but hopefully it will not increase. I'm going back in two weeks for another echo to monitor. So I guess I'll be adding "no more fluid around the heart" to our "pee baby pee" prayers!
One good thing about these zillion appointments is that I have SO many pictures of Sticky! He sure is cute. Today he gave us a thumbs up! I took that to mean "Don't worry mom...I'll be OK!"
Why blog?
I have never written a blog before, but I thought it would be nice to start one for a number of reasons. First, it would allow me to update friends and family with any new information all at once (no longer having to send out separate emails). Second, I hope that being "public" about our struggles may help another mother out there going through something similar. I have found that the most comforting thing for me is to talk to other mothers who really understand what I am going through. And finally, I hope writing about everything will be therapeutic for me.
Introduction of Sticky Bean
Subscribe to:
Posts (Atom)