Our situation is pretty unique, not only because of the way my pregnancy has progressed this far, but because we are actually lucky enough to be in the care of Dr. Chamit.  He’s 1 of maybe 5 others west of the Mississippi that even have the skill or knowledge to even help us.

LUTO can be found 1 in every 500 pregnancies … Of those most are still terminated.  Doctors don’t have the information, or tools to treat these pregnancies and most don’t know where to refer the patients that could be treated.  And don’t get me started on the insurance companies.  Fetal surgeries are still so new and the idea of thinking about the fetus as a “people”  is still so controversial  that people like TERRI ( my fetal therapy coordinator ) spend countless hours on the phone trying to educate and explain why these fetal surgeries are so critical.  Most major insurance companies don’t even have the codes to bill for such procedures, should you be lucky enough for them to approve it.  Far as their concerned the pregnancy should be terminated because they basically don’t want to cover all the care required once these little guys are born.  Heaven forbid they actual pay out for medical care.

I think like only 12 or so  surgeries like mine are performed a year, which is why Dr.Chamit asked if we wouldn’t mind participating in a Discovery Health show titled “MIRACLE WORKERS. BABIES 911″.  At first I was really hesitant  … the last thing I want is to lose my baby and have it aired in re-runs for the world to see.  And on the other hand , I feel like it’s our responsibility to try and inform the public about their options, that Dr. Chmait exists and can help. For the doctors that don’t know how to treat patients, for the insurance companies to see how benefical it can be if the surgery is a success, that it can actually be cheaper in the long run if you can prevent illness while the baby is still in utero, and to offer support to other mothers going threw the same thing ~ your not alone.

So Discovery Health called to explain what it would all entail and for now on my doctor visits and any procedures I may have, including the birth of Andrew and all of his post birth care will be documented.  I need to try and remain optomistic and hopefull for a good outcome. What better way to say THANK YOU to Dr. Chamit then to have his brilliance aired on TV for the world to see, and what a great treasure for us to have this entire process professionally filmed.

Oh, Andrew … everytime you cause mama stress through out your lifetime, I will sit you down and make you watch “the video” !

Dr. Chmait called today with our results … All of Andrews chromosomes are great, however his Kidneys are worse than expected.  He was hoping they would be below 6.3 … they came back 8.5.   Kidney function is essential for life … if this little guy can’t regain some function ( all he needs is 1/4 of 1 kidney to have normal renal function ) then I may not have a baby.

My heart hurts in a way I can’t even describe …    I’m canceling the baby shower my mom had begun to plan and the nursery is offically on hold.  I can’t bare to do anything else to it, I can’t even imagine the hurt to have a baby room and no baby to bring home to it.<

We have fetal surgery in 2 days  … Dr. Chmait is going to place a Vesicoamniotic Shunt in Andrew . ( Essentially, a shunt is placed between the baby’s bladder and the amniotic fluid, thus relieving the blockage. This approach is meant to prevent further kidney and lung damage. The final treatment of the obstruction is performed after the birth of the child. In cases that have been determined to be in the favorable prognostic category the approximate perinatal survival using this treatment approach is 66%, of which half will have significant kidney damage and may need dialysis or kidney transplant. Risks of shunt placement include dislodgement/blockage/malfunction (25%) thus requiring multiple shunt placements during the pregnancy, urinary ascites (leakage of urine from the bladder into the baby’s abdomen), and fetal death (4%).

I’ll have to stay overnight in the hospital for this procedure …   UHHH … this is the most helpless feeling ever.  I can’t control any of this and it’s really eating at me.  How do I accept that i can’t do anything to change or fix any of this ? Totally shity, doesn’t even feel like my life.

So later that afternoon …  at 4:45pm exactly, ( I’d been waiting by the phone since 9am ) I received a call from Terri Maitino, the Fetal Therapy Coordinator for my new perinatologist , Dr. Chmait ~the director of Fetal Therapy and Minimally Invasive Fetal Surgery for CHLA-USC. I would meet him Thursday.

After talking to Terri on the phone I immediately googled Dr. Chmait and was completely encouraged by the info I found. This man sounded like and is the GURU of fetal medicine.  A genius ~ I knew that I wasn’t just going to see a specialist, but an EXPERT. Not that any of this changes any of the concerns I have for my little Andrew, but I do feel like if anyone can help us he can.

So Thursday morning my mom, Josh and I made our way to West Hollywood, a 3.5 hour drive one way , my stomach in a huge knot the entire time …    when we arrived at his office we met Terri first and felt instantly welcomed.  They have such a small patient load that they have the ability to get to know each and every one of their patients on such a personl level , it’s amazing. First class care all the way.

Dr. Chmait came out and welcomed us, we followed him back to the exam room and  I had an hour long sonogram.  While he was taking measurements of Andrew he just stopped on the bladder and within minutes we watched him try and pee … the bladder contracted trying to push urine through the urethra before it hit a complete blockage and was sucked back into the bladder which in turn puts stress on the kidneys and it was then that he was diagnosed with a FETAL LOWER URINARY TRACT OBSTRUCTION.

Because Fetal surgery is so new and complicated you have to meet all the criteria necessary in order to be a candidate.  My case is a bit A typical because I made it so far a long in my pregnancy  with amniotic fluid … usually people who have fetus’s suffering from LUTO lose amniotic fluid very early on , as early as 13 weeks in some cases, so Dr. Chmait wanted me to have an out patient procedure done the same day called a cordocentesis { Under ultrasound guidance, a needle is placed in the umbilical cord. Fetal blood is drawn and sent for a serum Beta-2-microglobulin level. If the serum Beta-2-microglobulin level is less than 5.6 then fetal therapy may be offered. } He wanted to check Andrew’s chromosomes and kidney function. The results would determine our candidacy.

In a matter of like 2 hours I was downstairs in the ” operating room “  completley  preped  for an emergency c-section.  I was totally freaked.  I was in there all by myself with no type of pain medication because HELLO,  I’m pregnant and it’s not good for the baby !  So I was totally a wake and could feel and hear everything going on.  Terri, stayed with me threw the entire process , admissions, pre-op, did my catheter for me ( SO NOT COOL ) and kept me calm while they strapped me down on the table.  Dr. Chmait, genius that he is got in on the first try and was done in like 3 minutes !! THANK GOD !

Now we just wait for the results. And for Discovery Health to call …

So I’ve given it a lot of thought, probably too much … let’s remember I am  a self proclaimed Type A folks !!  Back to my point ,  I was debating on where I should start with my fetal issues .  I tried writing multiple “posts” in past tense as a way of catching people up on where we stand today with baby Andrew , but it was beginning to feel more like a novel and really depressing, not that our situation isn’t anything less than serious, but it didn’t feel like me, and furthermore I was stumped as to how I was going to merge into whats happening currently.

With all of this said, hold on to your hats ladies and gents because were about to fly thru the past 29 weeks of my pregnancy !!!  ( I may break this into 2 parts , in which case we’ll call this part 1 ).

Let me begin by saying that my pregnancy with Emma was completely BORING, and text book. I got pregnant, had a baby and she’s a brilliant, thriving 3 year old today   I’m only 29 not 39, I’ve never smoked, rarely drink, exercise and eat well, minus the fact I have a MAJOR sweet tooth and love chips and pretty much anything fried … all in moderation of course !  So NEVER did it ocurre to me , that I would ever have a high risk pregnancy, let lone a baby with fetal issues.

At 22 weeks when we went for what was suppose to be the very exciting, routine OB apt to find out the sex of the baby , the ultra sound tech. discovered Andrews bladder was enlarged.  My OB wasn’t sure what this meant because it was also noted that my amniotic fluid was normal and the two generally don’t go hand in hand, so she referred me to our local genetic specialist.

5 weeks later ( 27 weeks pregnant ) we met with him.  After a 45 minute in depth ultra sound he very gently told us that our baby definetly had a blockage in his urethra, that his bladder looked “ok”, but that his left kidney was slightly dialated.  My amniotic fluid was still in the normal range , but he explained to us that if at any time it should decrease it would be an emergency and that I’d either have to have a catheter placed in the babies bladder or deliver him early.  I was to see him once a week for the duration of my pregnancy.   HELLO … that’s a lot of information to try and take in and digest.

Our emergency happened on our 3rd visit with him …  we were in his office less than 10 minutes when he said it was “time to act”.   Andrew’s bladder was dilated, as well as BOTH kidneys, and my amniotic fluid had dropped below normal, which meant it was all trapped inside his bladder causing it to be dilated and putting pressure on his kidneys.   He asked me where I had more family, in San Francisco or LA. We opted for LA because my dad lives in Thousand Oaks … and that was it. He told me to go home, take care of my “affairs” and pack a bag because I was either going to have a baby or fetal surgery that week. I was to go home and wait for his office to call and tell me where and what time …

I can’t even begin to tell you the pain I felt in my heart, not to mention my body.    On top of all of this , i was suppose to rush home and plan for what exactly ???   I had NO idea whether I was going to have a baby, or fetal surgery … how long am I going to be gone for ~ what the heck do I do with my 3 year old ?    All of this adds to my anxiety because I live a VERY planned out life.  I’m NOT a spontaneous person, I hate changing my plans, I don’t go to restaurants unless I already know I like the menu , and all I could do was “give it to god” as the saying goes. I’d never felt more scared or helpless in my entire life.

The beginning is probably a good place, although I’m not sure whether I should introduce you to my life and then talk about my pregnancy or vise versa  ?!?!

We’ll start with my life, it seems a lot less complicated at the moment ! So here goes, my life thus far in a nutshell !!   I met my husband Josh in high school at the ripe young age of 17 !  After graduation he decided college wasn’t for him and joined the Air Force …  6 months later  at the very mature age of 20 ( LOL !! )  we got married and moved to Warner Robins Georgia , his first duty station.  We’re both born and raised Californians by the way … so the south was a complete CULTURE SHOCK for us !    After 5 happy years and 18 months of trying to get pregnant, Josh received orders to Vandenberg AFB, which for us doesn’t get much closer to home !  One month later I was pregnant with our beautiful daughter Emma and fortunate enough to be able to deliver her at home with all of our family within minutes to help!

A few months before Emma’s 3rd birthday we realized we were ready for baby # 2 …  In February , super bowl sunday to be exact, we learned I was pregnant and that my friends pretty much brings us to where we are today … sorta !