Plan for Sticky after birth

I had another ultrasound today.  Everything was status quo. Sticky was moving around and practicing breathing!  I'm so happy to be almost finished with 30 weeks. There is something so comforting about the "thirties" vs. the "twenties!" 

I have had a few people ask me what the plan is for Sticky after birth, so I thought I would post about it here.  Obviously, we have no idea exactly what will happen, but after talking with doctors and other moms who have been through similar situations here are some of the basics...

Like all babies, the first issue to be addressed upon birth is breathing.  Many babies with PKD have trouble breathing at birth due to the lack of amniotic fluid and large kidneys not leaving any room for the lungs to expand.  Of course we hope Sticky comes out screaming, but if not then he will get assistance with his breathing immediately.  The next issue will be assessing his kidney function (or lack, thereof).  Most likely Sticky's kidneys will not be functioning at all at birth.  This will cause his blood pressure to be off the charts, so the doctors will need to give him medicine to help with that.  Due to the large size of his kidneys, the doctors will most likely decide to remove one, if not both, of his kidneys to make room for his lungs.  He will then be put on dialysis.  There are two types of dialysis (hemodialysis (HD) and peritoneal dialysis (PD)).  HD has to be done in the hospital and involves removing the blood and cleaning it.  PD flushes out the "bad stuff" through a permanent tube in the abdomen (this can be done every night while the patient sleeps).  Sticky will have to have the tube surgically implanted.  While he heals, he will have to be on HD.  Eventually he'll be put on PD.  The BEST news is that PD can be eventually done at home (once Sticky is stable)!  And since it is done at night, Sticky can be a "fairly normal" baby during the day.  Obviously, PD isn't a piece of cake and there are many complications and issues, but we are happy to have this option!  The next step will be getting Sticky a kidney transplant - he has to be at least 20 lbs for this.  Hopefully I will be a perfect match for him and he can have one of my kidneys. After the transplant, I hear that life drastically changes for the better.  We are so looking forward to this day!  Obviously, the road will be bumpy, but we are just very hopeful to get to travel down this road at all. 

Thanks for the continued prayers and/or positive thoughts!  Have a great holiday weekend!

Fetal ECHO - May 26, 2011

Overall, today's appointment was pretty good.  Sticky's heart is not looking as good as it did two weeks ago.  I'm thinking the "improvement" last time had  more to do with the sonographer than his actual heart.  However, with that said...his heart does not look any worse - very good news!  There are some issues, but the function is great.  Most likely these issues will easily resolve once he's born and gets those kidneys out of there.  Sticky doesn't need to get another ECHO for two weeks, which is a good thing.  Especially since today they collected a $25 co-pay.  This is the first time they've done that, so I'm worried I might be getting a back-bill for all these ECHOs (yikes!) 

Also, I think I've mentioned before about how the children's hospital has a monthly conference where all the specialists discuss unique cases.  Well, the sonographer had attended the last meeting (last Thursday), so she was telling me about it.  She said that Sticky's case was discussed, so everyone is paying close attention to him.  She said that the nephrologist seems very optimistic about what all can be done for him after birth (apparently they are all happy I kept my amniotic fluid so long). She also said that there is going to be a special meeting just about Sticky.  The perinatologists, the nephrologists, the urologists, the cardiologists and the neonatologists will be discussing a delivery plan and they will all be there ready to go once Sticky is born.  This was the BEST news ever.  I'm happy to know that they are planning to do whatever they can to help our little miracle.  He's definitely got a good team behind him 

So thank you for your continued prayers and/or positive thoughts!  We really, really appreciate them!

Here's a picture of our little guy's face.  Hard to see much without any fluid, but I think he looks super cute!

29 weeks, 4 days

Ultrasound - May 24, 2011

Today's appointment was uneventful, which is great!

I gained 4 lbs in the past week, so I'm not so sure about this new glucose-friendly "diet!"  Eating every 2-3 hours makes me hungrier.  Oh well!  The good news is my blood glucose level was well below the cut-off this morning - yay!

Sticky is doing well.  He was moving all around and practicing breathing.  They got an estimate of his weight today - 4 lbs and 16 oz (of course, the measurement isn't super accurate because it is affected by his huge belly).  But we'll take it! 

Praying he keeps growing and moving in there!  Need him to hang on for 7 more weeks or so.  We have an ECHO on Thursday - hoping for good news again.

Thanks for the continued prayers and/or positive thoughts.

Belly shot for mom at 29 weeks

Bolt saying hi this time!

Ultrasound 5/20/11

Happy Birthday to my wonderful brother, Matthew!!  Sticky is excited to have such a great uncle.  :-)

Today's ultrasound was fine.  Sticky still has no measurable fluid, although she could still see a tiny bladder.  The ultrasound technician said she was very impressed by how much Sticky moves without any fluid.  Sticky wouldn't practice breathing, so she brought in this little vibrating tool to give him a small "jolt."  He started practicing right away after that. It was super cute! 

In other news, I failed one part of my glucose screening.  I'm officially glucose intolerant (not full-blown gestational diabetes). This means I will be getting my blood glucose levels checked weekly and will be meeting with a dietitian to plan my diet.  I'm hoping to set the world record for most doctors appointment during one pregnancy!  The diet doesn't seem too different from what I eat now, I just need to make sure to eat every 2-3 hours and especially before bed. 

Thank you for your continued prayers and positive thoughts.  It means so much to us! 

Ultrasound 5/17/11

We knew this day was coming - no measurable pocket of fluid.  This was to be expected though.  Other than that Sticky is doing well.  He's moving all around and practicing breathing.  They even saw his bladder!  Nothing new to report (which is good!)  Just need him to stay put for 8 more weeks or so.  You can do it Sticky!

Thank you for your continued prayers and/or positive thoughts.  We appreciate them so much!

Latest U/S and ECHO

I had an ultrasound and an ECHO.  U/S was fine.  Baby is slowly losing all amniotic fluid (I'm down to 1). His kidneys are now over 8cm!  Poor guy.  Although another ultrasound tech agreed that Sticky looks like Jon! I think it's official :-)

The ECHO was great!  His heart  has improved since last week.  They used words like "mild," "normal," and "trivial!"  As you know, I had been praying for some reassurance and I got it with this ECHO!  Yay! Keep up the good work, Sticky!!!

Also, we decided on a "real" name for Sticky.  One with a great meaning to honor his fight.  Although, we think he'll probably be called "Sticky" forever.