Wednesday, December 28, 2011

The "soap-on-my-toothbrush" kind of tired

We've had a rough few nights since my last post when all was going well! Mila is waking up many times throughout the night just screaming like she is scared or having a nightmare. I'm sure she's reliving her hospital stay :( Prior to her surgery she was a pretty good sleeper and would sleep a stretch of 6-8 hours overnight. The screaming only happens at night and she is still waking up from her short cat naps (about six 20-30-minute naps a day) happy. She is sometimes still asleep while she is screaming but won't stop until she is snuggled, then it starts all over again after we put her down. The past couple of nights she's been wide awak from 1am until 3 or 4am. She is clearly very tired but just fighting sleep. She has also had horrible gas and reflux since her open heart surgery, which they say is normal for 4-6 weeks. I'm so tired that this morning I put hand soap on my toothbrush. I also found myself answering Mickey Mouse's questions on Mickey Mouse Clubhouse because he and I are best buds now. He is the closest to adult interaction I get in a normal day. How old is Mickey Mouse anyways? Yep. I have completely lost it.

For some good news though, Mila is up to 13 pounds 10 ounces!!! She has almost doubled her weight from just over 2 months ago! After surgery when we left the hospital she was 12 pounds 9 ounces, so she has gained almost a pound in 5 days.  She is eating about 6 ounces more per day plus eating 3 tablespoons of rice cereal on top of that. I'm wondering if that is playing into the horrible sleeping....a growth spurt maybe. Either way I just keep telling myself maybe I can sleep when I'm dead. Seriously though, I am a little worried that she isn't getting the sleep she needs so if you could say a little prayer that her quality and quantity of sleep would be better, I'd love ya for it! Her scar looks so fabulous. I will have to post a picture of it as it continues to heal. I just can't get over how good it looks...especially compared to Zoya's! The glue is starting to peel off and some new pink skin is showing through! She seems to be in a little less pain-related to her surgery anyways. She was really sensitive to having her arms moved at all above her head to dress her, but that seems to be passing as well.

Thankfully, Zoya is being so great and taking the role of big sister very seriously. She wants to help so badly all the time. She now runs to the changing table when she sees me there, grabs a diaper, opens it up and spreads it out...so cute. I won't mention how she took all 300 wipes out of the wipe box though.
She loves Mila and is very concerned every time she cries. She even tells me what I should do, like "Mama ssshhh ssshhhhh" or "Mama baba."

We are still on semi-quarantine until we have our follow up appointment in a couple of weeks. 

I will post some pictures when I can see straight!

Sunday, December 25, 2011

MERRY CHRISTMAS!


So you all know I certainly didn't have time to make this beautiful Christmas card!!! Thanks to JAE for taking the time to put together this fabulous card! The wording is perfect and the pictures are all my favorites from our photo shoot! I love blogging because all of you guys are just so kind...so supportive...so full of joy for our family! Thank you for sharing in all our our miracles this holiday season!

Saturday, December 24, 2011

6 Days After Open Heart Surgery!


So maybe she isn't a drama queen after all! Ever since we got home she has been ALL SMILES! We just keep cracking up because EVERY TIME she looks at us she just gets this HUGE SMILE. Maybe she was being a drama queen before because she didn't feel well before....her little personality is really emerging just in the past couple of days! She slept through the ENTIRE night last night from 9pm until 6:30am and even if it was a fluke I'm okay with that because it was nice to get a little rest (even though during "my shift" I checked on her about a trillion times because her breathing is now so quiet and normal!). She sleeps in a normal position now after this surgery and rarely arches her head back anymore...maybe (in addition to the airway surrgery) 2 days on the vent and laying flat on her back retrained her brain? Her coloring is absolutely gorgeous....

I think she looks like she has a suntan in this picture!

I can't get over how quickly she is healing! Her only restrictions are no tummy time and we can't pick her up under her armpits. Her scar looks absolutely FABULOUS! I can't believe how great of a job the surgeon did minimizing the incision. It looks like someone took a pen and drew a line down her chest, not like someone cut her open! She is back to the weight she was prior to surgery (she lost a little in the hospital) so we're looking forward to fattening her up from here! As long as all continues to go well and we have no concerns, Mila will go back for her follow up appointment in two weeks. Shawn and I just keep saying "Did she really just have open heart surgery?" The memories are fresh in my mind, but at the same time her beautiful smile eases those painful pictures still left in my head.

We are so blessed...what an awesome Christmas this year!

Friday, December 23, 2011

GOING HOME

Homebound with our precious cargo!!!!! We can't thank you enough for your love and prayers!



Thursday, December 22, 2011

TOMORROW!?!?!

Imagine my surprise when we were transferred to the cardiac step down unit early this morning and then hearing Mila may be DISCHARGED TOMORROW!!!!! I can't believe how fast she has turned around. She is a rock star and meeting each obstacle head on and not letting anything get in her way. We were originally told to plan on at least a 7 night stay if all went as planned. Well obviously there were a couple scares with Mila's recovery and unexpected issues that arose....but she is still surpassing expectations! She simply amazes me. Around 10 pm last night she seemed to turn the corner. (I was able to stay because they transferred us to a bigger room and she was extubated so she needed me throughout the night). She stopped requiring oxygen, she was eating very well, and the only struggle she was still having was with the withdrawls. She didn't sleep great, but all her stats were fabulous throughout the night and into the morning! Today she looks absolutely beautiful...her color really perked up and she is a pinkish healthy color that we've never seen before. Looking back at pictures prior to her heart repair, I guess we didn't realize how pale and sick she looked! I know I didn't share pictures publicly of her first few days post op, but those who saw the pictures said they were difficult to look at and simply cannot believe how quickly she has recovered! You'll just have to take my word that miracles are happening around here!

Shawn is staying overnight with Mila tonight and Zoya and I are at the Ronald McDonald House. As I laid down to help Zoya fall asleep, I drifted in and out of delirious sleep and awake states, completely exhausted from my lack of sleep over the past several days. I kept feeling for wires and tubes and looking up trying to find monitors. The stress of a hospital stay in ICU with your child is unbelievable. I feel like I'm already having PTSD.  I keep replaying the hard parts, along with the miracle parts. There is no way we could have gotten this far without prayer from all of you. Even more than handing her over, and waiting to see her again, the hardest thing I've ever had to do was walk into that ICU room and see her swollen little body with all those tubes and wires. Oh it broke my heart to see my baby like that.  I couldn't hold back the tears.  '

And then a burst of emotions came flooding in....I was paralyzed by the thought that Zoya went through all that alone in Ukraine after her heart surgery. It felt like too much to handle. I got light headed and nauseous, not from the medical stuff we were seeing, but from the thought of both my babies going through this. I was blindsided by the thoughts of Zoya and the sandess and pain I felt at that moment even though Zoya's surgery was almost 2 years ago in Ukraine. We never got to love Zoya through her surgery and I'm so grateful, as excrutiatingly difficult as this was, that we got the chance to love Mila through it. I simply can't imagine not being there by Mila's side and it makes me so sad when I think nobody (including me) was by Zoya's side through it all.

I worried that putting Mila through this surgery would hurt the bond and trust we've built, but it's been just the opposite.  I have come to love Mila even deeper than I did before her surgery. I finally let go of my worries of losing her and just full out loved on her and begged God to let us keep her. I realized how much I already loved her and how much a part of our hearts she already was. I can't explain it in words, but going through this experience with her only solidified our love for Mila and her love for us. This experience has glued us together.  God used this terrifying open heart surgery to help us love more deeply. To God be the glory! Mila is one of the strongest little girls I've ever met. So many times as I watched the intense interventions needed so that Mila could successfully recover from this major surgery, I couldn't help but stand in awe wondering how in the world she lived this long with only a fraction of the medical care in her life in Ukraine. Her life is simply a miracle. That's the best way I can put it into words. She makes me really believe and understand that there is nothing impossible or too big for our God.

Celebrating tonight, with continued prayers for another good night and a possible discharge tomorrow. What an amazing Christmas Miracle! I couldn't ask for anything better this Christmas!



This is Mila's "Beads of Courage" Necklace...a cool program the hospital does...the kids get one specific bead for each procedure, ICU stay, discharge, clinic apt, echo, etc. they have done....Mila earned even more beads today that aren't on the necklace yet! It is as long as her! She is a fighter!

Check out her color!!!!!

Cardiac step down unit!

Mila is off oxygen and moving out of cardiac intensive care to the cardiac step down unit sometime today! She is eating on her own and got some sleep last night. She is still a little uncomfortable at times with the withdrawls from her sedative but overall so much better today. She now only has one line left in her neck and is on heart and blood pressure monitors...but otherwise looks like a baby who did NOT just have major heart surgery! Her swelling is all gone, shes wearing clothes again and now we are just waiting for smiles! Daddy and zoya are coming today!!


Wednesday, December 21, 2011

Tough afternoon

Mila had an awful past 3 hours...it was like fighting an angry 200 pound man! She was twitching and shaking and heart rate at 200....she was ripping out her oxygen and ripped the stickers right off her face...she won against the mittens and the swaddle we put her in 478 times. 

They finally think they figured out she is going through precedeux (sedative) withdrawls....poor babe. They gave her some meds to help and had to restart the precedeux...she's still fighting sleep a little but soon hopefully she will feel better. That was an awful 3 hrs. If the meds dont help bring her heart rate down they might need to do an EKG to check for arrhythmia.  Prayers for peace and strength for Mila and me...shawn went home to take care of zoya until tomorrow so I probably wont be able to update much..thanks!

Extubated!

Mila is extubated and breathing on her own!! Praise God! We even got a half smile when they pulled the tube! Prayers for continued progress and peace and comfort for our jelly bean are much appreciated!

Tuesday, December 20, 2011

Legs!

Nothing much new to post. They are hopeful that they can extubate Mila bean tomorrow morning but that all depends on how the night goes. She's sporting a big pink bow and looking a little more like herself. '

Here is a shot of Mila after they temporarily took her off the paralytic this morning....she had everyone laughing, but this is her favorite pose!




Once Miss Mila is off the vent and looking a bit better I'll post some pictures of her beautiful face :) Keep the prayers coming!! Thanks for all the love!

A piece of good news :)

We finally got our first real good news today! The doctors want to hear a "leak" from around the vent tube (which would mean the swelling is going down) and Mila has her leak! One step forward to taking her off the ventilator (as long as she doesn't throw another kink into that plan). This is the first time I've ever been excited for a leak! LOL! They are slowly weaning the nitric oxide throughout today and tonight and also lowering the vent settings so please pray she tolerates that! They are still keeping her fully sedated and paralyzed.
I also forgot to mention that since surgery, for the first time ever, Mila has pink fingers and toes.....a good healthy pink we've never seen before. And her hands, feet, and legs are the same temperature as the rest of her body...nice and snuggly warm!
Today she has been much more comfortable and they finally figured out how to sedate her best. Apparently kids with down syndrome are sometimes difficult to figure out as far as getting a comfortable sedation going on. I think it's just Mila's fiesty attitude keeping them on their toes :) I keep telling the nurses she is going to be a big drama queen once they take her off the vent! I don't think they fully understand just how much of a drama queen our girl can be....but soon enough she will show them!
Thanks for all the prayers....please keep them coming! Our jelly bean is a fighter!

Rocky road to recovery

Mila will not be extubated today :( She had an episode of bronchiospasms early this morning and they had a hard time recovering her breathing. She calmped down and her body was fighting the ventilator. They gave her albuterol treatment and her breathing finally recovered. The doctors initially said maybe later today they would extubate her if her stats all stayed stable. They took her off the paralytic but kept her sedated. She had all the staff cracking up with her flexible legs pulled straight up in the air just chillin.

Her pulse ox dropped low enough for some nitric oxide and about 11 doctos, nurses, etc to occupy her tiny room. (We asked for an upgrade with a bigger room and a jacuzzi tub but for some reason they just looked at us funny LOL). They decided to reparalyze her and give her even more sedation.

They did an echo trying to figure out what was causing her to desat. There is a small leak from the VSD patch which sometimes happens so we need to pray her body will do its job and close that tiny space on it's own. Between that and her pulmonary hypertension things didn't go as hoped overnight but she is stable now.

They are being extra cautious and not rushing the extubation because she has so many things going for her that can make extubation difficult. The airway surgery last week is the biggest reason they are being so cautious. She still has swelling despite the steroids and will be getting another dose of steroids shortly. 

I'm trying not to be too disapointed because I really just want my jelly bean all better in my arms and instead we had a little setback. They will feed her TPN since she will be intubated at least another day. She aquired another nurse so she's got two sets of eyes on her at all times.

This is the hardest, most emotionally trying time ever. I feel like I laid down for 5 minutes last night even though we slept for 6 hours. We were not able to stay in CICU last night with Mila because there is simply no room with all the equipment.

Mila needs lots of prayers for all the things I mentioned above. We need prayers for strength amd energy. Mila will be in CICU at least another night...we will have to decide on a plan for Zoya as well depending on how much longer Mila has to stay in CICU. Please stop for a moment and pray for Mila and for us!

Monday, December 19, 2011

Day 1 Update

I have never been more exhausted in my life (I'm more tired now than any of our trips to Ukraine!!) Mila is staying pretty stable and she seems to be more comfortable now. She had one episode (when Shawn and I left to grab a bite to eat) where her heart rate and blood pressure shot way up. They had to give her more sedation...they had been increasing her paralytic to keep her from moving so the breathing tube doesn't cause more irritation and swelling and that finally kicked in but she was slowly coming out of sedation (which she wasn't supposed to be) and coming out of sedation completely paralyzed can be pretty scary I imagine, so once they got her better sedated her, her stats returned to normal. Just a bit ago her blood pressure was high again and even after upping her blood pressure medicine it still didn't want to come down. After a bit it slowly started coming down to an acceptable number. Please pray that her heart rate and blood pressure stay down.

Tomorrow between 6-7am the plan is to try to extubate her (as long as she stays stable throughout the night). They've given her steroids to help with her airway swelling and think she'll be ready to be extubated in the morning. When the paralytic started wearing off today she was breathing on her own..so hopefully that's a good sign and she'll be able to be extubated tomorrow with no complications. I have a feeling she is NOT going to be happy when she wakes up tomorrow :( Please pray for her airway swelling to be gone so she can be extubated in the morning. Pray that she would not be too terribly scared when they take her off the paralytic and decrease some of her sedation. Also, please pray that she has a quiet night with no surprises. And a prayer that she would eat after being extubated tomorrow to avoid an NG tube.

Oh and I feel a little selfish asking for prayers for Shawn and I, but we need them. It is unexplainable to see your child so helpless, even when you know this is best for her. I just wish with all my heart I could make it all better. We're both struggling with feeling like we built so much trust with Mila just to put her through all this today.  We adopted her and promised to make her feel safe and loved, and I know she is so scared right now....I feel like I'm not following through on my promise, even knowing with my brain that she NEEDS this!  It's a very conflicting feeling that just plain stinks!  She went into "orphanage mode" today after not being fed for so long and it was just sad to see. She just shut down. I know it will take time to get back to where we were with her bonding wise, but I'm praying that she will seek us for comfort and that our love will be enough to calm her and help her feel safe.

Off to try and get a few winks of sleep, tomorrow's going to be a tough day. We truly appreciate all your comments and prayers....they've helped us to get through a very difficult day. Please please please keep praying for our jelly bean!

Goodnight friends.

We saw Mila

We saw mila....poor babe...rip my heart out :( she will stay on the ventilator tonight due to swelling of her airway...they hope to extubate her tomorrow morning...she is a fighter and they had to give her more paralytic becauae she kept trying to wake up. They said she came out fighting and pulling her lines....thats my girl. Please keep the prayers coming!  Prayers for comfort and peace for her are appreciated!  Will update more later. Thank you for all your prayers!

Update

Mila's heart has been repaired...they are doing an echo and getting ready to take her off the lung/heart bypass machine...another hour to hour and a half to go....keep praying!

Finally....

They took her back at about 1:20....please please pray!!!!

At 9am they told us she was bumped to noon and now the latest update is "its going to be a while." Mila is so hungry and this is very frustrating! Please keep praying.

1 Month Home

A Month ago today Miss Mila entered the United States with a future full of hope. Today she will receive the gift of health as she undergoes open heart surgery to have her heart repaired. She will have a mama and a daddy by her side every moment loving her though her recovery and advocating for her needs. She will have family and friends praying for her and cheering her on. She will have LOVE and HOPE and A CHANCE AT A NEW LIFE.

October 19: Met Mila
November 19: Brought Mila HOME
December 19: Open Heart Surgery

JANUARY 19: Celebrate Mila's life!


I woke up this morning with the song "This is the Day that the Lord Has Made...We Will Rejoice and be Glad in It....." and I've been singing it all morning. Shawn is snuggling Mila as she drifts in and out of sleep. The world continues on ourside our window but today our lifes pause in anticipation as our daughter is made healthy by The Great Healer. Please join us in prayer throughout the day as Mila comes to mind. Thank you friends.


Sunday, December 18, 2011

Open Heart Surgery Tomorrow

In Less than 24 hours, we will be handing our precious Mila over to have open heart surgery. Her surgery is scheduled for 9am tomorrow, with an arrival time of 7:30am. We are trying to get everything together and packed and get Zoya all set for Aunt Jen Jen. I have a whole bag of toys packed for the jelly bean in hopes of keeping her happy through her recovery (along with all the necessities). We are leaving around 6pm tonight and are blessed to have a spot at the Ronald McDonald House which is attached to the hospital!

Scratch that they just pushed her surgey back which has me in tears and I have no idea why. She is no longer the first case of the day so we will arrive at 9am and surgery they say should be around 10 but I don't believe that anymore. UGH! I hate this. And with that this post is over :(

Please remember to say a prayer for Mila (and the rest of us) tomorow morning-ish and all throughout the day!

Saturday, December 17, 2011

Dear Baby Girl

Tonight I came across a word document I wrote on our long train ride to meet Mila. Reading it puts me right back on that train just hours prior to meeting her. How she has changed our lives in so many ways already! Looking in her eyes each day I fully understand SHE was God's plan for us all along, even when we couldn't see the complete picture....even when our hearts were breaking about losing Laina. She is threaded into my heart in an unmistakable way. She was made to be our daughter.

I wish I could tell those of you struggling with a plan that doesn't seem like it's turning out the way you thought it would to just hold on because chances are the end result is more beautiful than you can imagine at this moment in time. Having made it up the mountain and down the other side, I can now stand at the bottom and marvel at the life changing hike and the reward at the end of our crooked path.

Again I am reminded of this saying:

"Some luck lies in not getting
what you thought you wanted
but getting what you have,
which once you have it
you may be smart enough to see
it is what you would have wanted
had you known...."

~ Garrison Keillor
Here is the letter I wrote to Mila just hours before meeting her
October 19, 2011

Dear Baby Girl,    

You have no idea yet that your mommy and daddy are just hours away from meeting you. We’ve been on a train headed your way for 13 hours now. In 2 short hours we will arrive in the region where you are living in an orphanage. We will meet with the director of your baby house and learn what little information they know about you.  So far we know your name and the day you were born. I can’t wait to learn more about you. You are a precious miracle who has a life full of hope. You are wanted so badly by your mommy and daddy and big sister, Zoya. In your picture you look so sad. Soon enough you will have thousands of reasons to smile. I can’t even imagine what the moment will feel like when I get to hold your sweet little self and show you the love you never had. You don’t know this, but our path to you seemed very crooked to us, but in God’s eyes, the path couldn’t have been any straighter. He has known forever that you would be our daughter.  I can’t wait to look into your eyes and speak the words in my heart. Today your life will change forever. Today my life will change forever. Your daddy’s life will change forever, and your big sister’s life will change forever.  I know that we need you as much as you need us, and that’s the beauty of this miracle that is about to unfold. I love you already. Soon baby girl you will never have to be sad again without a mommy and daddy to comfort you. Soon you will not have to be lonely because you will have, among others, a big sister who already loves you too. Soon you will feel better because you will get to see doctors who will help you. And soon your mommy and daddy’s lives will be so much better because of you.  As we get closer and closer to you, I have butterflies in my tummy wondering what our first meeting will be like. Wondering if I can hold you for the first time without breaking down into a puddle of tears. Wondering what your daddy’s face will look like when he meets his baby girl for the first time.  Wondering how tiny your little fingers and toes and nose will be. But never wondering how we ended up 5,000 miles away from out home to meet YOU and only YOU, because I know beyond a shadow of a doubt, we ended up here because it is exactly where we were meant to be at this moment in time, right there with you.

With so much more love to come,

Mama

Thursday, December 15, 2011

Hospital Pictures and Happy Girl

As promised here are some pictures of our jelly bean from her hospital stay.

Waiting before surgery:






After surgery (and after all the bad stuff):
Mila LOVES to look at her LEFT hand...it calms and comforts her...maybe an orphanage behavior, but we just love it...well she was not too happy to have her left hand all boarded up!

This Stinks!

Loving her present from the Pittsburgh Penguins!

We got a couple smiles out of her during the whole ordeal!

Lovin' Daddy!

Sweet Jelly Bean!

Resting up....her leg warmers were quite the hit! Poor girl's torso was on fire but her legs were so cold! This worked perfect!

"Seriously this is soooo cruel."

"Okay I'll TRY looking at my right hand but it's just not the same!"

Free at last! Getting ready to bust out of there battle wounds and all (her poor cheekies did NOT like that tape!)


And to say thanks for all your love and support, here are some bonus cute Mila pictures :)



Zoya likes to put her hair in Mila's hand so Mila pulls it.....

And then tell her "NO NO NO MILA!!" and laugh!

too cute for words!

Girl loves her hands!

Her crazy face...

And an even crazier face ;)

Sooooo loveable!

Check out the double chin!!! Woooot!

"Thanks for my booties Christina...they're fabulous!"

This is the good life!

Love this picture! Proud Grandpa and Daddy lovin' on their girls!

Wednesday, December 14, 2011

HOME! (for 3.5 days) Medical Update

Sorry for the lack of updates but my Mila girl was my number one priority and she needed me :)

So I think I briefly mentioned in my last post that Mila had a minor complication after her surgery. When Mila came out of surgery she was very upset, which we hoped was just from anesthesia but it seemed like she was uncomfortable or hurting. They assured us she wasn't in any pain but they could give her tylenol if we wished...yes please. She was crying very hard (because she was probably upset AND they later told us probably in pain! ugh), which caused her blood pressure to sky rocket. Her pulse ox dropped very low (hypoxia) and her respiration's were very high.  She was struggling a bit. They put her on oxygen to help.  They ordered a chest xray and saw her lungs were "wet" even though when they listened to her she sounded clear. This was likely due in part to her missed med dose (I asked and asked and asked if there was any way we could give it to her and they assured us it would be okay to give it to her when she woke up from surgery) as well as all the extra fluids given to her during surgery, and her congestive heart failure all working together to cause the fluid build up in her lungs. So they gave her a dose of lasix to help flush the fluid build up from her lungs and she was much more comfortable after that.  She did NOT like the oxygen cannula in her nose AT ALL and pulled it out repeatedly and then screamed when we put it back in. She's a fighter ;)

Tuesday morning we went for a "swallow scope" (I made that term up). They scoped her and watched on the camera to see if she was aspirating (different from a swallow study). The doctor was just as excited as we were when he saw she was not aspirating!!!! We knew her aspiration could be caused by the laryngeal cleft, but we also knew it was very possible that even after having this fixed she could still be aspirating from neurological causes/low muscle tone (common in babies with DS). We were thrilled to learn she is no longer aspirating!! We will keep her on thickened liquids until after open heart surgery just so we don't throw any huge changes her way prior to surgery. She will have a swallow study after open heart surgery just to triple check and then we'll be cleared for thin liquids again! As a result of the airway surgery her breathing is also a lot less noisy and she isn't having stridor anymore. She is still contorting herself into her sleeping position, but not nearly as much. The doctor thinks it has just become habit for her and she just automatically goes to that position. He said it was okay to reposition her (PTs will be happy to hear that!) as we find her in that position to help her retrain her brain that it is okay to sleep without having her head cranked back! Her coughing has not completely resolved and they think the coughing that she is having is due to her congestive heart failure and extra fluid in her lungs.

They did discovery that her airway is narrower than what they hoped to see (can't be fixed) and they put a note in her record for her open heart surgery. That means she might have to stay on the breathing tube a little longer than normal and wait for the swelling to go down. I'm glad they know to possibly expect a difficult extubation though. The ENT even sent a note to the cardiothoracic surgeon telling him what size tube will work best for her.

We were discharged Tuesday and Mila and I stayed at Shawn's brother's house, while Shawn drove home to take care of our other favorite girl, Zoya. I took Mila to her pre op appointments today and am feeling a little more peace about things. It's no secret we did NOT dig the cardiologist we initially met with. There was a huge lack of communication, unreturned phone calls, lack of information given to us, etc. A bad first impression. I was NOT happy today when we met with the nurse practitioner to go over her surgery and she casually mentioned Mila will also be having an ASD repair in addition to the VSD repair! What huh? Nobody ever told us she had an ASD as well! She looked at me like umm you didn't know that? The cardiologist certainly NEVER mentioned that in our 10 minute appointment with him!

When I met with the cardiothoricic surgeon who will be doing Mila's surgery, I felt much better about things. I asked if he could explain why they didn't want any additional tests and exactly how worried they were about her pulmonary hypertension. This doctor is the chief surgeon and he is very confident that all will go well on Monday. He said in 14 years he has repaired 500-700 VSDs and every single one has gone well, with all babies going hom with their parents in the end and only a few needing pacemakers (a possibility for any child going through this OHS). He said her pulmonary hypertension is exactly what he would expect to see in a 9 month old with an unrepaired VSD and ASD and that he can't promise, but really thinks her pulmonary hypertension will eventually be gone and is being caused by her heart defects!!! Why couldn't someone have told us that to begin with?? Because I certainly asked and asked and asked! On a side note, Mila has the same exact heart defects that Zoya had repaired in Ukraine!

We will have an exact surgery time on Friday, but we know Mila is the first case of the day so pretty early. If all goes as planned she will spend 1-2 nights in the Cardiac Intensive Care Unit with a one-on-one nurse and then approximately 5 more days in the cardiac step down unit. I got to tour both areas today and it's going to be tough seeing her in the CICU.

So there's the medical update, I'll post the "emotional" update with some pictures later ;)

Monday, December 12, 2011

Out of surgery

Mila is out of surgery and resting. She was not a happy camper when she came out. She was just so upset. They did find a laryngeal cleft and fixed that as well as completed a supralottaplasty....both should help her breathe better, stop aspirating, stop coughing, choking, and fix her apnea. Her pulse ox was low when she came out and her respirations high so they put her on oxygen and did a chest xray that was cloudy. They gave her some lasix to clear that up and we are hoping it helps soon.

We just had a visit from some of the players from the Penguins and they gave Mila a Christmas present.

It sounds like they might let both of us spend the night with her in the PICU which would be great!

I will update more later. Thank you for your prayers this far and please continue praying for peace and comfort for Mila.


Sunday, December 11, 2011

Prayers for Mila

Please remember to say a prayer for our sweet girl. We will leave here around 5:45am tomorrow for Pittsburgh. Her surgery will probably be around 9:45am if all goes well. Prayers for a successful airway surgery and speedy recovery with no complications! I feel like I should be praying but I can't calm my thoughts long enough to form any prayers just yet....but I know you all are praying for Mila and God knows our hearts, our weaknesses and our needs.  I thanked God so many times today for giving us our Mila bean. She is so special. He has big plans for her. How could He not with a story like hers?

There is one part of tomorrow that I'm dreading the most and that is handing her over to the team who will perform her surgery. So if you could pray especially for me during that moment I need it. I have barely left her side since Gotcha day and I certainly wouldn't dream of leaving her with someone who doesn't even know her, but tomorrow that is what we will have to do. I know the surgeon is capable. But that doesn't make it any easier. In the grand scheme of things, tomorrow's surgery should be a lot less stressful for her and for us than her upcoming open heart surgery, but right now it feels like I'm not even strong enough to get through tomorrow, let alone going through all these emotions times ten in another week. I just keep reminding myself to take it one day at a time. I'm trying to keep the focus on my girl and not on my emotions. She is so brave and so strong....such a fighter....she has endured so much in her 9 months of life (she turned 9 months old today). In 3 more months we can celebrate her first year of life and all the struggles she has overcome. What a celebration that will be! I still can't fathom that God knew she was OURS the day she was born (and long before she was ever born).

Thank you all for your love, friendship, prayers, and support. We are blessed. If you think of us tomorrow morning please say a little prayer. I will post when Mila is out of surgery and stable.

Friday, December 9, 2011

Airway Surgery on Monday

We have to be at the hospital at 8:15 am for surgery which will be "about an hour and a half later." That sure made me feel good. What made me feel even better was the fact that the majority of our conversation regarded free parking....and I wasn't the one who initiated that! Here was just part of our conversation over the phone that has me a little worried:

Nurse: She can't have any thickening agents after midnight.
Me: So she can't eat after midnight because she needs rice cereal to thicken her feeds so she doesn't aspirate?
Nurse: Yes, but she could have clear liquids like apple juice with no rice cereal or she could have plain formula with no rice cereal.
Me: (Wondering how this lady became a nurse) Sure if you want her to aspirate right before surgery that would work great.

Me: So what about her heart medications? She usually takes those at 9pm and 9am and we thicken those with rice cereal as well?
Nurse: IF YOU GIVE HER RICE CEREAL THEY WILL CANCEL THE SURGERY!
Me: I wasn't saying I was going to, I just wanted to know from you that it's okay to skip her HEART MEDICATIONS! (getting increasingly frustrated)
Nurse: Well you could give them to her at midnight
Me: Umm we would have just given them to her at 9pm.
Nurse: Okay well I guess if you can't give them to her without rice cereal she can't have them then.

And then she went back to the free parking spiel. And then asked me "anything else?" Oh I had some other topics I wanted to discuss like how long her surgery would be (minor detail)....an hour and a half was the answer.

Let's just hope she won't be Mila's nurse...maybe that's why they have her on the phones ;)

I'm a little on edge, but I bet you couldn't tell.

Thanks for the prayers. Love to you all!

Thursday, December 8, 2011

Still Running....

I feel like this marathon should have been finished weeks ago when we returned home safely with Mila. With Zoya's adoption, after being home for 2 weeks, I had been able to begin letting my guard down and adjusting to our new life. The big mountains had been moved, the huge goals were accomplished, there was no longer any immediate worry of losing her (to the system or due to health issues)....we could finally exhale.

With Mila, I feel like I'm still holding my breath. I feel like I can't celebrate without reservation just yet. I know there is already so much to celebrate, truly, I do....but I still have reservations about having a full-blown happy party because I know how serious the upcoming surgeries are. I'm waiting to exhale.  I've been holding my breath so long, trying to rest and trust in Him, but it is hard. I long for the day that I can breathe easier and look back on this scary time from the other side of the timeline. I almost cried several times today just looking at her knowing what lies ahead for her in the upcoming weeks.

How in the world am I going to do this? I mean, lets face it, I cried when I passed Zoya over to have TUBES put in her ears! I'm going to be a wreck. I have to put my trust completely in God....I just wish it was easier. Nobody ever promised it would be easy, but I never imagined it could be this hard!  Come Monday I'm going to feel like a fool because I'm going to be an emotional mess, I just can't imagine having peace about this or not breaking down. I think because we've already gone through so much just to bring her home it takes things to a whole new level....since I haven't let my guard down yet but I haven't really allowed myself to "go there" completely either.....I think Monday is going to be difficult to say the least. I have so many fears that I refuse to even type because then they become "real" fears instead of just fears in my head....if I type out my worries I'll be giving fear the upper hand and I can't go there. Every time one of "those" thoughts pops into my head I dismiss it as soon as it enters because I simply can't go there.

We're raising our hearts to heaven and praying hard.

Tomorrow they will let us know what time Mila's airway surgery is scheduled for on Monday. We are hoping it is very early in the morning. One parent is allowed to spend the night in ICU at her bedside which was a pleasant surprise to find out! So I will stay overnight with her (Shawn drew the short stick...haha). (Grandma B. will be staying with Zoya) We are praying that her recovery goes well and she won't need to be there longer than one night. If we are discharged on Tuesday as planned, we will have to return Wednesday for her open heart surgery pre-op appointment for the surgery date of Monday, December 19th. They only do the pre-op appointments on Wednesdays so there is no way of combining things. Our plan is to celebrate Christmas on the 17th and head back to Pittsburgh on the 18th.

And to end this post on a good note....just because it's my blog and I want to ;).....Mila had an appointment for her flat head at Shriner's today (another post another time since this is really the least of our worries) and she weighed in at just under 13 pounds and 25.5 inches!!!!!! Remember we started at 7.5 pounds and 21 inches just 7 weeks ago!!  She is starting to get chub on her thighs....I just love seeing her grow. She is a fighter. She is already a drama queen, I can't imagine how much more of a drama queen she will be once she is feeling 100%!!! I love my Sassy Diva (Zoya) and my Drama Queen (Mila). Wouldn't want them any other way...they are perfect!

Wednesday, December 7, 2011

A Christmas Miracle

Okay so I realize if I count the number of times I've used the word "miracle" in the last 6 weeks on this blog the number would probably be pretty high....but seriously, THIS IS A MIRACLE.

This is the best Christmas gift Shawn and I could have ever received.

LAINA (the baby we lost and the one who led us to Mila) was TAKEN HOME BY HER BIRTH PARENTS!

For so many reasons that I can't write on this blog, this is truly a miracle. I can't believe it happened....for so so so many reasons that I wish I could write, but won't to protect the family's privacy...but just believe me when I say...God worked a miracle here.

Please be in prayer for her birth family as it is very difficult to raise a child with special needs in her country without much support.

Even with the blessing of Mila, we obviously still had broken hearts for Laina's situation....but God has proven to us beyond a shadow of a doubt that He knew best and that Mila was the one who was always meant to be ours :) He has shown us that numerous times this week!

And can you even believe we got this news the DAY AFTER Mila's bad news that had us doubting God's plan? Just amazing. In awe I stand again.

Tuesday, December 6, 2011

Airway Evaluation....Surgery Monday (*Info Added)

Well today sure threw us onto a new path we weren't expecting to venture down. We had Mila's airway evaluation today at CHP. The doctor is FABULOUS in every way possible and I am so thanking God right now for this doctor/surgeon and that our ENT here at home spent enough time with Mila to know she needed further evaluation. We have one, possibly two new diagnoses after today's scope.

She definitely has LARYNGOMALACIA, which is somewhat common in babies, but hers is pretty severe and the doctor said by this age it should not be this bad. It is causing her to have retracted breathing in her neck and chest when breathing in and it is causing her airway to be partially blocked, thus the horrible sleeping position to keep it open.

The other likely diagnosis is LARYNGEAL CLEFT Type I. It is a very rare congential abnormality that can allow food/drink to pass from the esophogus to the airway causing severe aspiration. So rare in fact it occurs in 0.1% of the population. Can my girl catch a break here? The good part is that Type I is the best case scenario for Laryngeal Cleft (hey I'm grasping for good today). To fix this, they would use a gel to fill in the space that should be closed already. The doctor told me he is not 100% certain this diagnosis is correct, but he feels that it is likely. He will get a better look when he does the surgery on Monday.

Yes...this Monday Mila will be undergoing surgery to fix the laryngomalacia and possibly the laryngeal cleft as well as to take a further look to make sure there is no narrowing or her airway further down. Mila was in ICU in Ukraine for 2-3 months with a severe case of pneumonia. The ENT we saw today said it is likely that she was intubated during part/all of that time in ICU and that could have caused some narrowing of her airway further down. If this is the case it could complicate her recovery from open heart surgery even further. The cardio team said this airway "stuff" needs to be addressed before her open heart surgery on December 19th....so if all goes well we will still keep the 12/19 open heart surgery date as well. They will be keeping Mila in the PICU for at least a night after the procedure on Monday to monitor her breathing.

*I'm adding this part in because I forgot to mention it. There is a silver lining....the airway specialist said that these issues COULD be making her pulmonary hypertension and heart worse.....so we are praying that once the airway is fixed we will see an improvement with the pulmonary hypertension...that would be just amazing!!
I am so thankful for our ENT here in town who noticed the red flags (that the cardiologist did NOT) and sent us back to Pittsburgh. I can't even let myself think about what would have happened had they not discovered these issues prior to her open heart surgery. God is revealing to us why Mila did not have surgery in Ukraine....why Laina's adoption fell through.....why He led us to Mila so quickly...

And we stand in awe of God's miracles thus far in Mila's life. I had no idea how fitting the name "Mila" (meaning 'miracle') would be, but we just felt led to that name. The fact that she has fought through this laundry list of conditions as an orphan is beyond my comprehension. There is no worldy explanation for her survival thus far. According to all statistics and human calculations she should not be living and breathing at this moment. God has given her a fighting spirit and we pray that He continues to hold her and protect her though both of the huge upcoming surgeries.

Please PRAY for Mila and for strength for us. If you have a prayer list at church please add her name. Please ask all your friends and family to pray for our sweet girl too.

And if you are thinking to yourself, as I've heard recently, "Wow they must be so strong to deal with all of this." You're dead wrong. You'd do the same thing if it were your child. God would give you the courage and strength to fight just as hard....to fight through the tears and worries, the sleepless nights and frustrations. We can't take credit for acting like superstars here because we're soooo not! Without God we are nothing. So don't tell me you think I'm strong because inside I'm quivering while I turn to God to carry us through this.

We are so appreciative of all your love, support, and prayers. We may have chosen this path, but just remember that doesn't make what we're going through with Mila any easier. It doesn't make us any stronger than the next set of parents who are unexpectedly dealing with unexpected health issues in their children. We need you and your support and prayers.

Sunday, December 4, 2011

Growth Spurt, Surgery

I swear every time I look at Mila she looks different than the second before. It's unbelievable to see how fast she is growing and changing. At her last doctor's appointment two weeks ago, she weighed 11 pounds, 5 ounces. Today, just 13 days later, she weighs 12 pounds, 10 ounces......another gain of one pound and five ounces in the past two weeks and just over 5 pounds since meeting her! With her weight gain she is actually on the Down Syndrome growth charts!! She isn't on the typical charts, but the fact that she falls on the DS charts is amazing when you look at where she started.

Mila's surgery is *tentatively* scheduled for Monday, December 19th, just two weeks away. I say tentatively, because we are waiting on her records to be sent to a pulmonary hypertension specialist in Philadelphia. Depending on his opinion, we may or may not proceed with the surgery as planned in Pittsburgh on the 19th. If we proceed with the surgery, we will be spending Christmas in the hospital. Perfect timing for Mila's new beginning. Please keep praying that Mila would continue to stay healthy, that we, along with the medical team, would make the best decisions for Mila, and that peace would surround us through this difficult time.

Shawn took these pictures with his cell phone last week, and then today.