Well, I have much to update, so bear with this post!  It's been a busy few days... (Just a note that Reagan's autospy reports are at the bottom of this post...)

Wednesday
Well, we didn't do much new on Wednesday night that was new.  But, here are some photos as we got to hold her during her 9pm feed.  She's growing like a little weed!  She weighed in at 3lb 1.8oz.  We're climbing in the right direction now!!


Do you like my new padding?  Looks like I'm going on a little picnic..







Thursday - HAPPY 2 WEEK BIRTHDAY ADDY!!!

Quick Mommy Update - I had my follow-up with Dr. Turnquest on Thursday.  It went well.  She said my incision was that of 6 week scar already (Thursday was only 2 weeks post c-section).  So, I'm healing well.  She was apologetic for not being there, but all of us knew it wasn't her fault.  Things just happened.  I think she was a bit surprised we had no time for steroid shots and that Addy was such a good weight (and Reagan too) and that Reagan even lived as long as she did..and that Addy was doing so well in the NICU unit.  She had Reagan's autopsy reports and we discussed it briefly.  She didn't seem so surprised about Reagan's missing foot, but she said we were so focused on another issue and with low to no fluid, it's something quite easy to miss.  She asked if she could forward the autopsy reports and records on Reagan to Dr. Weaver at IU Med School.  Of course we said yes.  We want her to be able to help others... We want others to learn from her short, beautiful life.  We wish we could of kept her here on Earth with us, but we know she was meant to be an angel... Addy's special angel.  I told Dr. T I'd get Reagan's photos onto a CD for her to give to Dr. Weaver and to keep with their records.  We're also sending the information to Dr. Quintero's office and probably Vanderbilt as well.  Cincinnati is quesitonable, but I do think they need to know what happened here, yet I hesitate to give them any information for the quality of care we feel we received.  They drug their feet in Cincinnati with no explanation..yet in Tampa.. they were quick to take care of us and quick to reassure us we were doing everything we could possibly do.  Tampa was the first place to make us feel that there was no right or wrong decision..and that whatever we decided was ultimately the right decision...  That was an agonizing few weeks when we were left in limbo on whether we would lose both our girls in order to help save the other.

Addy Update - Another typical night in Level III!  We had sensed from the nurses and the new admissions that Addy is on her way out of Level III very soon!  She has continued to grow, breathe well with her cannula, and do everything she needs to continue forward.  We saw a new admission into Level III, a little girl...and she's VERY tiny.. probably around 1lb.  It's so hard to see these itty bitty babies struggle on ventilators, so although it'll be wonderful to stepdown into the Level II nursery, I am anxious because it means Addy is another step to coming home..and this all becoming real.  She weighed in at 2lb 2.3oz and she is now on Preemie 24 formula.  She was on Preemie 20.  Basically, they are giving her more calories to fatten her up.  She'll need the extra calories to bottle feed in the next few weeks.  She'll likely lose some weight when she starts to eat by bottle as she'll have to work to eat instead of just having a tube stuck down into her belly.

Here's a photo from Thursday!  Snoogling with Mommy during her 9pm feed.  She's so comfy!  I snuck her hat off for her photo, but we usually have to leave her hat on, she gets cold way too easily...




Friday
Just another typical day back in Level III.  The new admission (little girl) that came in the other night is still there.  Whew...that was a sigh of relief!  Those first few days are critical and to see her still there and no changes is a good thing... 

Mommy got to hold Addy during her 9pm feed again! (Boy am I spoiled!!!)  She is now at 3lb 5oz, so the Preemie 24 is doing the trick and we're still gaining!  YEAH!  We were sort of warned that she's next to move out of Level III as it seems Level III got some more patients in and Level II is just around the corner.  They said her level of care would still likely be intensive care and not intermediate, but they try and keep the numbers between the 3 nurseries (Level III - Intensive Care, Level II - Intermediate Care, Level I - Going home soon!) equaled out so they aren't overloaded.  We noticed Level II went down in size and so we figured Addy was moving soon!  Especially since she's doing well. 

We met Addy's neighbor today, Josie.  She's a beautiful little girl who was born at 28 weeks on July 30th.  Her mommy had Pre-eclampsia, pregnancy induced high blood pressure.  It was so dangerously high that they took Josie out at 28 weeks via emergency c-section.  Josie is doing well and gaining weight as well.  We figure Addy will move soon and then hopefully Josie will meet her in the Level II.  Her parents are from Jasper, so her mommy asked us if we'd peep over on her every once in a while and tell her that her mommy and daddy love her.  It broke my heart that Josie's mom couldn't be there more and more, but made me feel honored that someone's mommy would ask me to do such a beautiful thing..

Here's a picture from Friday: (Snoozing on mommy yet again!)



And, ONTO SATURDAY!!! A BIG BIG BIG BIG BIG DAY!!!
My mom and I had bowling, so we headed to pick a few things up at a store and then went to the NICU to see Addy.  We walked in and one of the secretary's looked at us and said.. "Guess what!  We just did the paperwork for your little girl.  She's moved from Intensive Care to Intermediate Care and she's in the level II nursery now!!"  YAHOO!!! GO ADDY!!  So, we scrubbed in quickly and off we went to search for her new home.  And, there she was, all the way over by the windows and snoozing in her Giraffe incubator. 

The secretary is a total sweetie!  She said there are certain babies they just never forget in there, and she said when Addy goes home..it's going to be a big celebration!  I had looked online last night to see when St. Mary's had their NICU reunion.  It's in September every year, so she'll likely get released somewhere around the reunion this year, so we'll have to mark our calendars to go to the reunion.  Her nurses will LOVE to see her!  We also researched a little info on Pregnancy & Infant Loss Awareness.  The month for that is October, so we're sure to do some special things for Reagan during that month, including maybe a walk that they have at Deaconess.  Hoping we'll see more on that soon from the March of Dimes. 

She has 2 new neighbors (We sure do miss Josie though!  We hope she's comes to our corner soon!!), a little boy, Aidan born around 32ish weeks and a little girl, Rachel born a few days early (36 1/2 weeks) because of her mommy having high-blood pressure.  Aidan was born I think on July 28th and Rachel was just born August 16th.  Addy of course is just a Preemie still and is the smallest again (she was the biggest back in Level III).  She keeps having a little trouble regulating her oxygen levels, which keeps her nurses on their toes, but she's getting better about fluxations in that now too. 

She also got a new feeding tube while we were there.  The nurses in Level III wouldn't do that when we were around, but her nurse today, Cheryl, did it in front of us..and it wasn't bad at all.  She choked a little bit, they'd let her catch her breathe, and they'd keep slowly sneaking it down into her belly.  Very simple and wasn't so bad to watch!   Daddy couldn't watch it when they had to push it back in the other night.  He just doesn't like to see that stuff!!  Cheryl taped it down a ton better this time too.  She likes to yank on those cords.  Hopefully just a few more weeks of that stuff or less..  She'll likely lose her feeding tube next, but it'll be several days still.  They don't learn to suck, swallow, and breathe at the same time until around 34 to 36 weeks gestation.  Addy is only 32 weeks and 2 days gestation, so they'll continue tube feeds for several days before they even begin to "try" a few bottles. 

 

We also saw Pat today.  This was Reagan's wonderful NICU nurse.  She's a bereavement nurse, so Addy holds a special place in her heart.  On top of that, Pat is just wonderful with all the little bitty babies back there.  She treats them as if they were her own.. most the nurses do.  It's just a beautiful thing to watch the love they have for those little ones.  Cheryl was just back from sick leave and so she wasn't there when Reagan passed, but she told us that the nurses take that grief of losing a child home with them for several weeks.  My heart breaks to know how many nurses grieved over our little angel, Reagan, and probably still grieve.  What a special place the St. Mary's NICU really is... how lucky we are to experience such wonderful care...  We have the best babysitters for Addy. 

After visiting, it was late, and I was tired!  (Mom got to hold Addy a while and I held her during her 3pm feed.  I love holding her for her feeds.. she get's locked in my arms for a solid hour..such a blessing!)  So, we grabbed dinner and headed home.  I quickly ate and went to sleep.  Charley tried to wake me up, but I was just so tired that he went onto the hospital by himself today.  I miss her badly now that I didn't go back up, but she had a big night already too!  She got moved into a NEW incubator!  She's no longer in a Giraffe, she's in a regular incubator.  Not sure why she's not in a Giraffe, maybe a new baby needed one.  But, that means she doesn't necessarily need the Giraffe either, so we're getting closer and closer!  She weighed in at 3lb 5.1oz, so still growing bigger!  She's also up to 28ccs of formula and she's still only having around 2ccs of leftover formula in her belly.  Nothing major!  Daddy forgot the camera, but he did get to hold her while they transferred her into a new isolette.  They had to move all her little pictures too.  She's also getting to stay in onsies now, so I guess I may sneak a few onsies up there.  We found some cute little onsies the other day, so I'm excited to get to take them in there.  They could get lost though, so hopefully I don't grow attached to any of her clothing!  Oh well, it's a minor price to pay in the NICU.

Here are a few pictures of Saturday afternoon.  Mommy will have to get some pictures of my new incubator soon!





And, onto Reagan's Autopsy reports...

Okay, so I have no idea how to even explain this one, but everyone swears I explain things very well on this blog... so here it goes!

Reagan's autopsy reports found these major defects:
1) A single, malformed horseshoe shaped kidney (You typically have 2 kidneys, oval shaped.  There are people with a single horseshoe shaped kidney that live to be just fine though, so this wasn't a "huge" issue.  Reagan could of lived like this.)
2) Malformed urinary system with distended bladder (This we knew, but they did not find a urethra, so likely she had atresia of her urethra, which basically means it was not there or it was flattened out and led to nothing.  In her situation, she was missing all exit holes, so she had no urethra.)  Her bladder was quite distended as well (over the size of a football - Her belly measured around 14cm wider than her chest).
3) Severe anorectral (cloacogenic) anomaly with anorectal atresia, colovesical fistula, and absent perineal opening (Ya, that's foreign!  So, it basically means her bowels did not form properly either.  She actually had 2 cystic sacs.  One was her bladder and then she had a fistula (a channel) from her bladder to her bowel where fluid dumped into that one as well.  She was missing her anus as well.  So, it all just built up inside of her.)
4) Absence of uterus and vagina with no external genitalia.  (Yes, that's right her uterus was missing, but they did find her fallopian tubes and her ovaries and she did not have a vagina, as we knew from her having no external openings)
5) Pulmonary Hypoplasia - This was her primary cause of death.  It basically means severely immature lungs.  We were greatly surprised they were even able to ventilate her.  Just to give you an idea of her lung size.  Her spleen weighed 4.8g and her right and left lungs weighed 5.2g and 4.6g, respectively.  That's TINY!  There's just no way her lungs could develop with the amount of pressure that was placed on them.
6) Absent left lower leg below the knee - Truly, she was missing her left ankle and foot.  Dr. Vincent believes that it was likely more of a vascular issue (blood flow).  He said you would be amazed at how easy it is for a baby to grow without a limb.  Any kind of constriction whether it be because of low amniotic fluid or it be because her bladder was so distended that it blocked blood from flowing to her leg to fully form it... It was really just minor and Dr. Vincent wasn't totally surprised with the missing foot, neither was Dr. Turnquest.
7) Malformed right leg with clubfoot.  Again, no surprise here because she had her legs tucked up in a criss cross position the entire time.  When she ran out of fluid she just got stuck in her sac and that is what caused some of her malformations of her hand, foot, and legs.  Nothing that is surprising for a baby that had no fluid from around 22 weeks onward.

So, the official diagnosis?  Well, the pathologist said it was characteristic of sirenomelia syndrom ("Mermaid syndrome"), which occurs in 1 in every 60,000-100,000 live births, with only 300 reported cases with only 2 survivors into childhood worldwide.  I actually saw a documentary on a girl who survived Mermaid syndrome.  NOW, that is what the pathologist said.. and she implied "characteristic."  Dr. Vincent, Reagan's Neonatologist (Preemie baby doctor), and Dr. Turnquest fully believe that her problem was a Cloacal anomaly and NOT sirenomelia (Mermaid syndrome).  The features are similar, but the difference is Reagan had 2 formed legs, one just didn't finish.  Mermaid syndrome would of been ONE lower extremity merged together.  She did not have this important feature.  I think the reasoning for her sort of "off" diagnosis was merely because of lack of experience in something this severe.  For one, not many people request autospies on babies, especially newborns, and 2) Reagan was a first for St. Mary's.  Dr. Vincent says he has not seen another baby like Reagan.  Her anomalies were severe and he has seen a lot of things, but nothing like Reagan's.  So, it seems Reagan may of been the first Cloaca baby at St. Mary's. 

Okay, so now you are wondering.. "What is Cloaca?"  Right?  Well, don't worry, I've had to educate Dr. Vincent on a few things and I also have had to educate a few of the NICU nurses (well, most of them actually).  Cloaca is so rare as well that it's just not something you learn about in school when you are going into the medical field.  It is something Maternal Fetal Medicine specialists know about because they see all the bad stuff.. and it is something fetal surgeons know about.  So, if this doesn't make any sense to you, you are not alone!  And, you can "try" and Google the meaning of Cloaca, but it's likely to give you more information on animals and Cloaca than Cloaca in a baby. 

So, what did I educate the doctor on?  Something simple that Dr. Quintero told me.  Birds have Cloaca (Dr. V knew this).  You know the fun bird poop you see all the time?  Well, Birds have one opening.  Their bowel and bladder dump into one unit and then it digests out of their bodies.  What Dr. V didn't know is that Dr. Q told us that the word "cloaca" actually comes from back in roman times when ALL waste was dumped into a single sewage system..the old time channels that took waste away.  Amazing huh?  Dr. Vincent was awesome explaining everything to me and he was very impressed with my knowledge and that I had educated myself as well as I did.  He actually pulled out a notepad and took notes on my little lesson about the meaning of "cloaca."  Surprised me, but yet made me feel a part of a "team" in figuring out what went wrong.  Dr. V told me that doctors tend to get as excited about the problem as does the patient, so by me being such an advocate for Reagan's diagnosis, care, etc.. is why we were able to find out so much and is why the doctors and nurses were so willing to try and help her.  That made me feel good.  It reminded me that I did so very much for her and that my concern about just "letting her go so easily" was never a concern because of the care, concern, and perseverance we had to save our daughter's life.  What an amazing experience we were given and how great it was that our biggest fears were our least concerns...

Cloaca is basically what I described above.  Before 6 weeks gestation, babies have one urorectal track where the bladder and bowel flow into.  At around 6 weeks, this system splits off.  In Reagan, the system never split off correctly.  It stayed as one sac.  The split never officially happened leaving a fistula between the bowel and the bladder.  In fact, the end of her colon (distal) actually lead straight to her bladder and they found traces of meconium in her bladder along with her stent (I got a chuckle out of this - little girl never followed the rules...wish I could of seen the stent and what it looked like, but I'm glad to know she wasn't buried with a piece of plastic in her tummy!).  Nothing in her digestive track formed correctly and because the reproductive system is the next to form after the bladder and rectal tissues take shape, it did not develop correctly either.  She did get her ovaries and her fallopian tubes, but her uterus was not able to form because of the constriction.  I hope that all makes sense.  It really is simple, yet complex.  The pathologist did list on her autopsy report that she was "imcompatiable for life."  A tough phrase that we refused to listen to while pregnant, but yet it made us feel at peace knowing she would of not lived regardless of what we did... it left us with no regrets on what we did to try and save her.

As Dr. Vincent put it.. this was purely "bad luck" and the chances of this happening are "negligable," or so impossible rare that there is no reason to even think that it "could" happen again.