I survived another surgery …   despite my son’s best efforts to make it as difficult as possible.  The very first thing Dr. Chmait  did was perform a cordocentsis, so that we can compare Andrew’s kidney function to the time before. Last time his function came in at 8.5, which is not good at all, we were hoping they’d been around 6.3 or below which still would have been high.  The Hope is that his kidneys have gained some function since having the shunt placed in his bladder, as long as it comes back lower than 8.5 I’d be very encouraged that all of this is heading in the right direction.

After drawing blood from Andrew’s umbilical cord, Dr. Chmait gave him a shot of morphine and some kind of paralytic ( also threw his umbilical cord ) for pain and so that he would hold still, the idea being that he wouldn’t move about thus making the surgery easier.  However, a few minutes into surgery Dr. Chmait asked me if my husband could “handle his alcohol” … unfortunately the answer to that question is a big fat YES.  Dr. Chmait said ” well, like father like son … Andrew should be knocked out by now but he’s still fighting me ” ! Although I’m not exactly thrilled with this realization, I was happy to hear my little guys a fighter ! With all that lies ahead of him, I prefer he be feisty !

This time I only received one incision … Andrew was in the same position as last time, so he went thew the placenta again.  Dr. Chamit was hoping I wouldn’t need another Amniotic Infusion, but by the time of surgery my amniotic fluid had dropped so much I had one of those as well. I dunno why, but this time I received twice as much fluid as before, approximatley a litter …  

Overall the surgery was much more intense.  I felt a lot more, heard more , Andrew wasn’t behaving so it lasted longer.   Anytime you start messing around with the uterus, specially since I’m 34 weeks a long now the chances of going into labor increase,  add that to the fact that my cervix is short and wah-la , you have yourself an extra night in the hospital hooked up to magnesium sulfate feeling like death.  My saliva tasted like metal,  it burns going threw the IV, it feels like poison in your body not to mention all the nasty side effects of which I felt every single one.  On top of all of that I was threatened with being admitted to the hospital permanently if my contractions didn’t stop or improve by 3:00pm this afternoon.  ( They were every 3-4 minutes, hence the magnesium sulfate ).  THANK GOD, they subsided and Dr. Chmait released me to my Dads in Thousand Oaks on strict bed rest … I’m talking he called me by my middle name and made me swear I’d lay in bed 24-7.  I of course would have agreed to anything at that point if it meant I could get out of the hospital.  I love my nurses, I had a HUGE suite with an extra bed and TV for josh, the food lady ( MALLIA ) likes us so much she stamped our room VIP so that josh was served whatever his heart desired at any time of day, but lets face it … it’s NOTHING like being home.

So anyhow, I’m sore and exhausted and incredably uncomfortable, not to mention incredibly LARGE and swollen, which happens to be a side effect of the procardia, a persription I was sent home with to help ward off contractions. Emma and I are trying to get settled at my dads, Josh and I are trying to figure out what life will be like 2 hrs apart …    My brains on overload trying to remember to make notes of all the many things I take care of around the house, things that need to be done, bills to be paid, for Josh so he can keep the house running smoothly while I’m here.

In the meantime, my only purpose is to be a crock pot for the next 2 weeks …  How fun does that sound ?!?!

I just got done seeing Dr. Chmait for one of my weekly appointments …  turns out Andrew pulled his Shunt out. Either that or it came out all by itself, but I find that hard to believe.   We had a hard time seeing it last week, but as I think I’ve mentioned before  ~ as the baby gets bigger they have less room to move about and depending on their position , can be difficult to see.  But last week, there was evidence that it was still there because my amniotic fluid was maintaining.  

Today, however, his little bladder is dilated once more and my amniotic fluid is below normal.  So we’ve opted to have the surgery again and have yet another shunt placed in his bladder.  In a matter of maybe 2 days my amniotic fluid will be gone again completely in which case I’d have to deliver him via c-section anyways, so if this works and I can keep him in for maybe 2 more weeks it’d be best for his lung development. I’ll be prepped tomorrow just like the times before for an emergency c-section just in case his heart rate should drop or something go wrong. Dr. Chmait also wants to do another cordocentesis while were in there. He wants to compare Andrew’s kidney function to the time before.

Needless to say this all SUCKS  …  I’ll do whatever it takes to give my baby the best possible outcome, but I’m not looking forward to this surgery tomorrow. Again he’ll have to go threw my placenta, because my stubborn child hasn’t moved, my bruise is barley going away from the last time. Hell, my incisions still haven’t completely healed.  My OB mentioned last week that my cervix was soft, so I’m not confident that I won’t go into labor this time which is always a possibility. Andrew was estimated to weigh about 5 lbs today which I’m happy about, and I was given some type of sterroid shot this afternoon to help with lung development, but his kidneys haven’t really changed much and my heart aches right now with concern.

My brain is dead, and I need to rest and eat and process what’s happened today , but soon as I can I’ll write an update and let everyone know how everything goes.  In the  meantime, all of your prayers and well wishes mean the world to us …

Hannah

That’s exactly what I think of Dr. Chmait and Terri Maitino.   These two have moved heaven and earth to make sure Andrew and I receive the BEST care. They’re basically running something similar to a “mom and pop shop”, in comparison to other medical fields that are fully funded. And yet their overall statistics are much higher on average. Their not about getting “paid”, their about learning and helping EVERYONE. My god, if you even suspect your pregnancy my be tainted with some sort of dreaded fetal illness, they’ll personally take your call. Dr. Chmait  doesn’t have any fancy plaques or awards on the office walls, just a HUGE bulletin with pictures of all the many babies they’ve saved to date. I feel truly blessed to be in their care.

So get this : The OB who Dr. Chmait originally wanted my care transferred too apparently made a decision based on convenience for herself and not what was in the best interest of his patient ( not me, but another of his patients that he had care transferred for ) and this irritated him immensely so he cut ties with this Dr. completely, is writing her up and took back full ownership of said patients care as well as my own.

So there’s only one other Dr. that will do, however she doesn’t accept my insurance.   And of course after many failed attempts at trying to get a referral from my insurance and a HUGE STRESS headache , Terri in all her glory gets on the phone and calls the Director of my insurance and she and Dr. Chmait explain to this person how critical it is that this particular OB take over my care.  That she’s part of the fetal team, that my case requires excellence , blah blah blah   and what do you know …  THEY FREAK’N GOT ME A REFERAL TO A DOCTOR WHOSE NOT IN MY NETWORK !!!  How in the hell they managed that is beyond me … and to my friends who have the same LAME insurance we do , you especially know how crazy that is !

I was so worried that I was going to have to have my baby here at home with doctors and nurses who have no clue what’s going on with me and Andrew , or the skill to help us and that critical time would be lost if they had to send him via ambulance on a 3.5 hour ride to the Los Angeles Children’s Hospital.

BTW , Hollywood Presbyterian , where I’ll be delivering Andrew is connected to the children’s hospital, so we’ll literally be within walking distance of each other !! And all of our medical staff is right there in the same building, I’m SO relieved.  It was one of the many things in my very unpredictable life right now, that was just looming over me.  It feels so good to have some idea as to what’s going to happen in the next few weeks.  AHHHHHHHH …. a sigh of relief

Before I give an update I wanted to share a scripture I’ve recently come across, it’s one that when I read it, felt like it had been written just for us at this particular moment in our life :

HEBREWS 11:1  …  Now faith is the substance of things hoped for, the evidence of things not seen.

Let me start by telling you how VERY UNCOMFORTABLE I am.  Being filled with amniotic fluid  instantly made me 2 lbs heavier, and has totally filled out my baby bump. Similar to taking a deflated basket ball and filling it with air. My skin, especially along my sides feels SO FREAK’N TIGHT.  And holy cow am I bloated … I’m hoping that feeling goes away as my body gets used to having a normal amniotic fluid level. It’s like I grew 3 pregnancy weeks overnight. OUCH.

I saw Dr. Chmait today … all looks good !  The shunt is still in place, he believes Andrew has some kidney function because my amniotic fluid levels are maintaining ~ apparently if he had none, my sac of waters would be dry again. He reminded us again that we won’t know how bad off the kidneys are until after he’s born. And even then it could take up to a month to get an accurate reading.  My incisions are healing nicely and so far I’ve managed not to go into labor ! YAY !

So I must continue with bed rest for the duration of my pregnancy,  he wants me to move in with my dad in a couple weeks so that I can be closer to the hospital ( thousand oaks is only an hour drive, versus the 3.5 it takes us from home ). And he and Terri are going to work on having all of my care transferred to LA, which means a new OB.  My next big hurdle is to make it to 36 weeks.   I’m currently 33 weeks … I can do this for 3 more weeks …    Meghans lap top, wireless web connection and some Ben and Jerry’s “peanut butter cup”! I think I’m set  … except what to do with the 3 yr old ? Hmmm…

Let me start by saying that the overwhelming response to our situation has been truly amazing and totally appreciative 

But when people hear about what’s going on with my pregnancy their first response is always the same , they either 1) tell me about a friend who had her baby at like 25 weeks and it was just fine or 2) how they themselves had a preemie and he/she was fine.  Don’t get me wrong, I love to hear about these stories they’re wonderful and I’m always very excited for whose ever baby it was that came early and is now thriving, but it’s NOT AT ALL the same thing.

This was never a matter of my body not being able to carry this baby for whatever reason , if that were the case I wouldn’t be on bed rest because I’d have a healthy baby who more than likely would be fine to be delivered at any time now.  I , however, have a sick baby whose suffered some pretty severe organ damage. It’s crucial he make it to 36 weeks , mainly to ensure strong lung development but also that he can be big enough to endure anesthesia and surgery and all the many other medical procedures he may have to go through. It’s apples and oranges people.

Ok, I feel totally better now that I got that off my chest …    Now I must lay in bed and dream of the day I can enjoy a nice cold Margarita !!!  Oh, how I miss my Jose Cuervo.

It was hard not to laugh on surgery day …  we had a camera crew following us around for goodness sake. Not that I don’t hope this will help others, but if given the choice as to how I’d become famous it  A) wouldn’t be from having a sick baby and B) I’d chose something that allowed me to wear, oh I dunno make-up, contacts and definitely NOT that blue hair net thingy they put on your head for surgery ! I can only imagine how AWESOME I must have looked !

Anyways, I was freakishly calm for the entire process.  I had my husband with me, my parents and my brother …   they were all so worried ( my mom was about to puke , poor thing ) I think they took all that nervous energy from me and I was able to just breath …

It also helped that the “crew” was the same.  I had just seen all of their friendly faces less than a week ago and amazingly enough they all still remembered my name , so I knew I was in good hands.  Again they prepped me as if I was about to have an emergency c-section. This surgery is so delicate, that one wrong move and that’d be it.

Again I was  A WAKE for this surgery … they put something in my IV to help me relax, but I was aware of conversations going on around me , I ABSOLUTLEY heard Dr. chamit say the dreaded word SCALPLE YUCK …    Other than that I mainly felt pressure as different needles and what not were inserted threw my stomach.

The first thing Dr. Chmait did was give me the amniotic infusion …   All of the sudden I heard everyone giggle and then Dr. Chmait said ” Hannah, Andrew has just grabbed the shaft of the needle with his hands” !!!   How freak’n cool is that !  I immediately felt my little guy  start moving around … all I could think was how happy he must have felt to finally be able to stretch out.

After filling me up with about 4cc’s of fluid , Dr. Chmait began massaging my stomach trying to get Andrew to roll over and into a better position , so that he could place the shunt.  This went on for a while … finally I felt the first incision , but my stubborn child moved .  So on to the other side of my stomach …

After more massaging, I heard Dr. Chamit praise Andrew for finally cooperating ! First they gave Andrew a shot in his thigh for pain and something to help him hold still , then  the second incision was made, and about 7 minutes later it was all over !!!

The staff applauded, I smiled and breathed a sign of relief …

After I was settled in the recovery room , Terri brought my parents in and Dr. Chmait came in to talk to us.   As a last resort he was forced to go threw the placenta …  It bled a bit, so now he’ll keep an eye on it to make sure it clots, and is reabsorbed by my body.   The shunt is in however  ( it’s aluminum, was screwed threw Andrew’s abdomen into his bladder.  The part that’s on the outside of his body makes a 90 degree angle and lays flat on his tummy ).

When I return next  week we hope to see more amniotic fluid , that his bladder is now collapsed around the shunt and hopefully that his kidneys aren’t as dilated.

For the meantime, I’m on strict bed rest …  No driving, cleaning, cooking or chores of any kind.    I have a very active 3 yr old … tell me, how in the heck is this suppose to happen ?

Today I had a sonogram with Dr. Chamit  (I’ll be seeing him weekly until I deliver) , he wanted to check on Andrew before surgery tomorrow.  A week ago when he checked, my amniotic fluid was around 4.3 … today it was at 1.  Which now makes sense as to why I haven’t felt Andrew move or kick for a few days.  Normal amniotic levels are at 10cc’s … the further along you are in pregnancy and the bigger baby gets, normal can be between 5 and 7. Where is it you wonder ?  Inside my poor son’s body. Trapped in his bladder and kidneys.  With no amniotic fluid he feels like he’s been zipped up in a really tight sleeping bag … worse his lungs can’t take their “practice breaths” without amniotic fluid.  Not that he isn’t breathing necessarily, but his lungs can’t develop normally and his chest can’t expand or contract , all of these things vital post-natal. So I’ll be receiving an amniotic-infusion tomorrow as well, which is basically warm saline solution.

The other part of my sonogram was for Dr. Chmait to map his point of entry … and why would that be easy, nothing else has been thus far.  Apparently the placenta grows either or the ceiling or floor of the uterus, mine of course is on the ceiling ( which means pretty much any part of my stomach that you can touch has placenta underneath ).  It’s never a good idea to puncture the placenta ( although I’m told the FRENCH do this all the time ), so he literally has the size of a quarter on the left side of my stomach to make the incision.  I’ve been tagged with a sharpie … apparently “X” really does mark the spot.

And to top it all off Andrew’s back is against the exact spot Dr. Chmait is to enter my stomach.  The Shunt has to go threw his abdomen in order to be placed in his bladder … how the hell is this gonna happen ?!?

Well friends, we pretty much have all the makings of a “PERFECT STORM” if you will …  As if I wasn’t already scared and nervous.

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.