Friday, January 27, 2012

Sprouting....


Our beautiful seed is starting to sprout....seriously...where did my tiny itty bitty helpless baby go?? She's doing big baby things now like playing in her exersaucer (even though her feet don't reach without a blanket under them) and eating in her high chair and rolling over and over and over, making raspberries, and whining if she gets bored or if we don't feed her fast enough! She's interacting more and smiling a lot! She's no longer content just hanging out....she wants music and lights and action! If you think she looks bigger she IS! She is packing on the chub!
Being cheered on by big sister :)
First time sitting in her big girl high chair!

Blowing raspberries
Ready to eat like a little birdie!
MMMMM squash!
The master teaching her student...fist demonstrate

Then do some hand over hand
And the piano lessons by Zoya paid off....Mila's first concert! Enjoy!
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yum prunes and rice cereal!

I love anything on a spoon!

What do you mean I have something on my face? I thought I got it all....darn it.

so full of expression!

I think I have the hang of this spoon thing!
Check out that Buddha belly! How about those dimples in her thighs??? Oh how she is changing and growing!

Yay for KNEE FAT!!!!!!

smiley girl because she knows she is about to eat!

Eye lashes have sprouted!! They used to be non existant!

Oh one of my favorites....sweet sweet girl!

What are we waiting for mom? Feed me already!

If I smile will you feed me?

Beautiful, stunning, gorgeous!
With love, good food, and medical attention, our seed is sprouting....she's going to blossom into the most beautiful, unique, breath-taking flower! I love watching our flower grow!

Monday, January 23, 2012

Cherished....


Mila bean you are cherished beyond belief. You are a princess, deserving of everything good in this life. You are loved and wanted and needed. You are perfect just the way you are! You are a beautiful child of God, finally being loved the way you were created to be loved!

Friday, January 20, 2012

A Happy Mila Update!

Mila continues to do well. Sorry I didn't want to say that too loud! She seems to be getting into a schedule-ish for sleeping. She typically goes down around 7:15 and occassionally fusses in her sleep, but the past couple of nights she has only woken up once between 3-4 to eat and have her diaper changed, then she goes back to sleep until about 6:30/6:45. That is sooooo much more doable than waking up allllll night long! We are praying it continues!!! Her naps have been okay, she is still catnapping for the most part for her morning and evening naps, but usually gets a good hour nap in the afternoon. She has been taking her bottles well and has really been enjoying stage 1 baby food. So far she has tried green beans, bananas, squash, and pears. She likes them all and sits with her mouth open waiting for the next bite! She is back to rolling over from her back to belly but cannot figure out how to get from her belly to her back. This has scared us several times as she rolls over in her sleep and then is face down, or cries when she can't get herself turned back over! Hopefully she'll get strong enough to do that soon! Any time we lay her on her back on the floor she's instantly on her tummy...she loves being on her tummy, until she get's tired and then can't roll back over! Today she got her monthly synagis shot and she weighed in at 14 pounds, 4 ounces!!! She is definitely looking chubbier to me, but still seems frail. and flimsy..she's got a ways to go but we're getting there! Remember she weighed 7.5 pounds when we met her so she has almost doubled her weight from 3 months ago! The girls at her pediatrician's office today couldn't believe how good she looked! I love hearing that because I can obviously see she looks good, but I'm with her every moment of every day so to hear others gasping at how much she has changed makes me feel like we are really seeing progress! We had her intake meeting for early intervention this morning and they will evaluate her next week and then she'll get physical therapy and occupational therapy started very soon!

I'm working on finishing up her adoption video....sooo close, but finding the time is tough! I can't wait for you all to see it! She has really come a long way in a little time!

And here is our sweet jelly bean


And it must be something about this purple elephant outfit that makes Mila happy because I get the best pictures when she's wearing it! (Thanks Teri!)




Her FAVORITE toy!
And another favorite..she likes watching videos and looking at pictures!
*Working on a Zoya update on the other blog for those of you asking how she's doing! :)

Wednesday, January 18, 2012

Fluid Gone!

When the cardiologist first looked at Mila's heart he said he could see a sliver of fluid, just a teeny tiny amount and he was excited that it was obviously even better than the day we were discharged. As he continued to look and take measurements and do all those "echo things," he suddenly couldn't even see the sliver of fluid anymore....not a trace...he checked 3 different views and said "I must have overestimated what I saw, I don't see any fluid at all now." WOW! Maybe he overestimated or maybe the fluid miraculously dissapeared half way through the echo....all things are possible with God! We are able to stop her blood pressure medication! Her pulmonary hypertension is just very mild and he hopes that it will dissapear completely as her little body continues to heal...please pray for that specifically! She will continue on the lasix and the anti-inflammatories until we go back in a few weeks to see him again! Oh I hope this means she's on the mend from all this!!!! Thank you for your love!

Tuesday, January 17, 2012

Echo tomorrow....

Mila has her echo tomorrow at 11:00...they squeezed us in, which meant we had to cancel another appointment, but this is most important. I can't help but worry worry worry that she isn't getting better. She had an awful night last night not sleeping well at all and just very fussy again and crying in her sleep. I'm really really hoping its just teething (she's been chewing on her hands non stop for a few weeks) or a belly ache from the meds she's on, or just still being a little constipated from anesthesia. I am so nervous for the appointment but just praying there is no fluid around the heart. I start second guessing everything....like she has gained 8 ounces since being home, is that good because she's been eating decently or is that bad because it means more fluid? This road has been long and it seems every time we can begin to breathe again the other shoe drops....we're trying to stay positive but can't help but almost expect that something else might go wrong. I'm ready to get out of this rough ocean and enjoy the sand for a while....prayers for a good appointment tomorrow are appreciated.

Sunday, January 15, 2012

On the Mend....TAKE 3?!?!?

3rd time's a charm, RIGHT?! Oh I don't even know where to begin with this whirlwind of a time life has just taken us through. First of all, we so appreciate all of your thoughts, prayers, comments, love, good wishes, and concern for our family! Thank you!!! A friend reminded me that Mila's suffering was not without purpose....that so many around the world have been following and praying and watching God do miracle after miracle in Mila's little life. May all the glory be to him! Just as we felt we couldn't take any more, God swooped in and showed up big time for Mila (and for us)! He loves her so much, even more than we do, and that I just can't imagine.

Through this trying time, we've become closer as a family. Shawn and I have become closer as husband and wife, having no other choice than to lean on one another. Shawn has completely impressed me as a husband and father through these difficult times. He has always been amazing, but through all of Mila's surgeries and hospital stays, and unknown medical situations, he has held us together as a family. He has continually put himself last and made sure that all of his girls' needs were met before he even considered himself. He has spoken words of encouragement to me when I was at my weakest and never once voiced his stresses or frustrations because he knew I needed him to stay strong for both of us. He is an amazing man of God. I am so blessed to have him as my husband and our girls are so blessed to have him as a father.

We think that Mila was in such horrible pain with the chest tube in and that may be part of the reason she wasn't eating...or all of the reason. I had no idea how horrible that pain was for her until after the tube was out. I wish I would have known. One of my readers said a chest tube was more painful than a leg amputation for her....ouch. That put it into perspective for me :( My poor babe. So the final verdict was that this pericarditis was caused by the trauma of the surgery and it's unlikely to come back, but she will be on anti-inflamatories for at least 3 weeks to ensure that it doesn't come back. I think her system was so stressed from trying to fight off the UTI and with all the antibiotics in her system trying to process those that her body was unable to keep everything functioning properly and thus the pericarditis appeared.

Since being home, Mila seems to be doing well. I'm a nervous wreck wondering if she is okay or if the fluid is coming back. We really don't know the "real" Mila and her personality since she has been so sick since we have known her. Today she has been very laid back, napping well, and just all around happy and content. She is acting much like she did for the first day or two after being home from open heart surgery. But then I can't help but wonder if she's so laid back because she's not feeling well. But last time she didn't feel well she was very fussy and clingy and miserable....so I hope this is just her being healthy and happy.

Yesterday she wasn't eating great, but managed to eat about 2/3 of her typical calories. Today she ate almost what she normally would, plus some sweet potatoes that she loves. This girl LOVES anything that comes on a spoon! It is pretty funny...she's like a little bird opening her mouth so wide and if I'm not quick enough she lets me know! Her overnight sleep is so-so, but way better than it had been!! Praise God! She wakes up several times throughout the night but isn't crying in her sleep like she had been. Yesterday, since we had the go ahead, we tried some tummy time. Mila had forgotten, or so I thought, how to roll over from her back to belly. She lost a lot of strength and gross motor skill after the surgery (to be expected). But then last night in her crib she kept turning onto her belly and of course she can't get back to her back...that's enough to make me worry all night long!

Tomorrow we have a ped follow up here in town and a chest xray. We are also going to hear back from the ped cardiologist to see if he can squeeze us into his full schedule for an echo this week. If he can't we will be headed back to Pittsburgh. Mila also has a follow up appointment at Shriners and her first eye exam (that takes months to get into!), and hopefully a reschedule of her early intervention evaluation so we can get the much needed services started! So it's another busy week for us, but we are just hoping and praying that Mila continues to be fluid free and on her way to good health FINALLY! We are keeping a close eye on her weight for any fluid retention as well as having her closely followed by her pediatrician and cardiologist.

Here is a picture of a 60cc syringe next to a 5cc syringe. Mila has 72 ounces of fluid drained from around her heart...that's almost 3 ounces! When you think her little heart is only as big as her little fist, that is just crazy! I wish they could have given us a better idea of how long the fluid had been building...they did say it is possible that it could have happened very quickly, and even likely that happened because of the huge amount that accumulated during the first night in the hospital (in addition to the large amount they had already found the night before in the ER).

Here are a couple pictures of Mila when she was really puffy...3rd day of our stay.



And just 24 hours later.....


I show those pictures only to prove how amazing our God is and to show you that your prayers have played a big role in Mila's recovery. She was still a little puffy when we left the hospital, but looks like herself today! And here are some pictures of our little miracle girl since we've been home!





*God is good, we are blessed*

Friday, January 13, 2012

Free bird!

On our way home again! Thanks for your prayers!!

Friday Morning Update-ish

She has earned a new nickname...."crazy legs"
We're just hanging out waiting to talk to the team about our jelly bean. She slept through most of the night and woke up happy. She is taking her bottles well and even had some rice cereal this morning. Her lungs sound much better today! She had her echo about an hour ago and the tech said it looked great :) But we are waiting for the official word. We do know for sure it is an improvement from yesterday and think that it showed very little to no fluid around her heart! She has been soaking diapers all morning so hopefully that means the fluid is all on its way out! She looks much less puffy today, just about back to her normal look. I will have to post pictures of how puffy she was at it's worst. (I didn't realize how bad it was until I looked back at pictures). This morning the doctor asked Shawn if we felt comfortable going home today IF her echo was clear and she was doing better. I am a little nervous, just because of what happened last time we were discharged, but they did assure us that we would have an echo next week and that once the fluid is gone it is unlikely to come back. I asked them if we could just borrow the echo machine to take home with us ;) She has now had 11 echos done...and I think I get an honorary echo technician certificate LOL.

Here is a video of Mila...check out her focused, determined look when she is concentrating! She is a smart cookie and figuring out cause and effect!
video

P.S. Thank you to "a friend" for our angel of hope (love it!!!) and the flower for the girls!!! The message was so uplifting, thank you!

Thursday, January 12, 2012

Praising God!

video
Look at this happy girl!!!!! Mila drank another 4 ounce bottle!!!! I've never been so happy as I was today to just hold her and watch her gulp down that baba!  She is starting to seem like herself again. I'm almost afraid to type this....but I think we're turning the corner here! About 30 minutes after they took the drain out she really perked up. Maybe it was causing a greater amount of pain than we gave credit to. We knew it was very uncomfortable, but they think maybe it was causing some referred belly pain too. They gave her an extra dose of lasix so hopefully that will help with the extra fluid in her lungs. We are also praying that tomorrow's ECHO shows no signs of fluid around the heart as it did this morning. I seriously cannot believe how she changed so drastically from this morning!! Even her breathing is improving, but not where we want it yet. She is laughing and smiling and just seems so happy! She's also fighting sleep which makes me think she's feeling a bit better too! My heart sooo needed to see her like this after such a rough morning! They still are unsure what caused the fluid build up (other than her recent open heart surgery) and are hoping for a clear chest xray and echo tomorrow morning...that would be another miracle. Please keep praying, your prayers are being heard!

She drank a baba!!!

Mila just drank a full bottle!!!!! (4 oz.) And she seems much happier with the drain out! They gave her an extra dose of lasix to see if that helps all the fluid in lungs. AND I showered! Thanks for the prayers keep them coming....hope we are close to turning the corner....it's a BIG DEAL that she ate!!!!!!

Thursday Morning Update

Last night Mila would have slept through the night if "obviously never been a parent Nurse" hadn't woken her up 400 times to do stupid things like change her diaper when it was unnecessary. If all went well, the mean nurse should have met 4 flat tires on her car upon leaving the hospital (kidding).

Mila has been really lethargic and still not eating well. She has been eating about 6 ounces a day :( She starts drinking and then turns away and looks back at her bottle like, "I really want that but I'm just too exhausted to bother with it." They are still concerned with her breathing, its rapid and labored. The chest xray this morning showed fluid in her lungs and a pocket of fluid in the bottom of one of her lungs....sigh   :( They said the lasix should be taking care of that, but clearly it isn't. I asked about pneumonia and they said they don't think it's pneumonia. Her echo showed she still has a small pocket of fluid on the right side of her heart, although it is a tad smaller than it was yesterday. They tried one more time to pull any fluid out of the drain and got nothing, so they pulled the drain. That was enough pain for her and I to last a lifetime. I can't even begin to describe how terrible that was. But she seemed just a smidgen happier after it was out and she was snuggling in my arms. It'd be great if she'd start eating again and maybe that was the issue, but I doubt it. They tested her hemoglobin and talked about doing a blood transfusion because her levels were low upon arrival in the ER, but decided her levels were okay and they don't need to do the transfusion. They were thinking maybe that was why she's been so lethargic and not eating, but met a dead end there when the levels came back okay. They honestly told me they're not quite sure why her breathing isn't returning to normal and they don't think the fluid that is around her heart and in her lungs is enough to cause this much of an issue. It is so frustrating. So the doctors said they have some "investigating" to do. Please pray that they can figure out what's going on with our sweet little girl.

This morning was rough on me. I'm tired. I'm whiny. I need a shower. I have been wearing the same clothes for, oh my gosh, lets just say for too long...too embarrassed to type that. (Shawn's on his way back thank goodness...and Aunt Stacey came up all the way from VA to help out and just left back today). I'm getting to the end of my rope. I know there is nothing I can do and I'm trying to stay positive, but it is so damn hard to watch my girl go through so much pain and suffering...for what purpose? I'm just done. I just want answers. I just want my girl better and home where she belongs. Mila is to the point that she is terrified of most people coming near her or even touching her. I don't blame her. She is trying to be so brave and even tries to keep herself from crying but ends up just losing it. I'm glad she can at least find comfort in my arms when everyone leaves and it's just her and I. For that I'm thankful.

Please keep Mila in your thoughts and prayers.

Mila this morning
Mila after tube was pulled

Wednesday, January 11, 2012

Happy 10 Month Birthday Jelly Bean!

Mila is teaching us that we need to celebrate every single day. We certainly do not take her life for granted. We have seen how fragile life is through her struggles. Today is Mila's 307th day alive. THAT is something to celebrate. And it will be something to celebrate tomorrow on day 308 and every day after for the rest of her beautiful life.  She has survived by the grace of God for 307 days; only 54 of those days in America. That means she spent 253 days mostly alone, sick, some of those days in intensive care in a hospital in Ukraine, some of those days in isolation in an orphanage. 253 days people! Every single day she woke up, still alive, just holding on, waiting for her miracle. Remember that when you're having a bad day and you don't want to get out of bed in the morning. She is such an inspiration. She is a miracle. Only God can be glorified through her story. I can't wait to understand and watch His plan for her unfold. All I know is that His plan is magnificent. It's like waiting to unwrap the first gift of Christmas when you're 5 years old, but even better. I wish I could peek in and see what beautiful things He has in store for her.

Today I'm reminded that I hope we never forget how fleeting and fragile and beautiful this one and only ife is.

Mila, an hour ago, through the pain and tears she mustered up a smile.
In all she is going through she managed to smile, even if it was only for a second.

Wednesday Morning Update

Mila slept very well last night. She still isn't eating great, but definitely eating more than she was before we got here. She is pretty fussy when awak, mixed with a few smiles. Her breathing still hasn't returned to normal so I had worries prior to the echo. They just did the echo and were hoping to see no re-accumulation of fluid but there was a small amount of fluid on the right side of the heart that wasn't there after the procedure yesterday :( They tried to drain it through the tube they left in, but only got 2cc's. The fluid seems to be in a pocket that the drain can't reach. They're hoping the anti-inflamatories they're giving her will take care of the fluid by reducing the inflamation. She looks a little puffy around the face and neck so they are going to restart her lasix. This all means the drain will have to stay in until at least tomorrow when they do the next echo. It is pretty uncomfortable for Mila and it hurts her when we pick her up, so we requested a better bed that she'll be a little more comfortable in since she isn't tolerating being held much. I would request morphine but that seems to make her itch so bad it isn't even worth it. It's going to be a long day ahead I have a feeling. We just want to see our girl healthy and happy.

Shawn and Zoya are going home today. Through this all, Zoya has developed an aversion to her carseat (I don't blame her) so that might make the ride home a little rough for Shawn. Please pray for our family.

Tuesday, January 10, 2012

Sleeping Like an Angel

Mila drank 4 ounces of pedialyte and 2 ounces of formula right after surgery! She was having some belly discomfort so she was a little fussy but once that was relieved she fell asleep and has been sleeping soundly for a couple of hours. She has to be exhausted. She slept 3 hours last night and maybe an hour today between naps. We are really really hoping we start seeing the happy girl we know is inside there very soon! The cardiology team just came in and gave the run down of the "plan" as long as Mila doesn't have her own plan! They're going to check the drain in the morning and decide if they want to pull it or not based on the amount of fluid draining. They will do another echo and keep a very close eye to make sure no more fluid is building up. They want to keep her at least a couple more days if all goes well. They sent fluid samples away for testing to make sure there is no infection present. Whenever she is discharged they will keep a very close eye on her and we're already making arrangements with our local pediatric cardiologist to be seen there to save the many trips back here. (Our local guy is really good for follow up and he is Zoya's cardiologist).

I've been thinking a lot about Mila's life through all this, but especially these last two days. I've been reflecting on how we lost Laina and how the path seemed so crooked and how hurt we were. We trusted through the hurt and were led to Mila. I know God did not make a mistake here. I have absolutely no doubt that if God did not lead us to Mila at that exact moment she would have died without ever knowing love, family, and belonging. He knew all along she would be ours. He knew all along each and every struggle she would go through. He made her a fighter and he gave her a family. Knowing her now, I can hardly look her in the eye when I think about almost not continuing our journey past Laina. The sad truth is SO MANY orphans are dying. So many are sick like Mila and wasting away in an orphanage without family and without medical care. Maybe one of those orphans is YOUR CHILD!? Mila's life is a miracle. God has big plans for her, of that I'm sure. But holding her through all this pain, I know in my heart her future is bright and hopeful but I can't help but be so sad for all those other orphans who are recovering from surgery alone, or who are DYING waiting.

Through these struggles our thread to Mila is being woven into a rope. We have a fierce love for her and would fight to the ends of the earth for her life. Her big blue trusting eyes stare deeply into ours and she knows she belongs. She knows she can trust us to comfort her through the pain. She is not alone. She is a beloved daughter, sister, grandaughter, niece, and cousin. She has a place in this world. She is making her mark. She is wanted and she is worthy of everything wonderful in this life.

Let your light shine, Mila....I know you're ready and we're all here anxiously waiting to watch you blossom!

Out of surgery!

Mila is out and extubated. They drained 72 cc's of fluid! Praise God. They're keeping the drain in until tomorrow.

Surgery :(

Mila will be having surgery this afternoon to drain all the fluid around her heart. It continues to build despite the meds and it isn't safe to wait any longer to see if it will drain on it's own. I'm at a loss for any words to describe our emotions at this point. I just wish Mila could catch a break. Thanks for your love and prayers.

Tuesday Morning Update

Mila had another echo at 7 this morning and the news is not what we were hoping. The effusion looks worse...she has more fluid around her heart now than she did last night despite the meds. She just got another dose and the doctors will be rounding soon. She is pretty uncomfortable. They may decide to take her into surgery and drain it today since the meds aren't working :( As much as we don't want this, at this point Mila is so uncomfortable that we just want them to fix it and make it all better. Everyone here seems pretty surprised Mila has this pericarditis. They are calling it Dressler's syndrome because the onset was not right after her surgery. When we left here she looked perfect. Maybe that is why when I called cardiology three times to tell them my concerns they dismissed them saying she looked too good when we left to have anything wrong cardiac wise :(

I tell ya....my friend Shelly says to her kid's doctors, "you might have M.D. after your name but I have M.O.M. after mine." I am a pretty patient and non confrontational person for the most part but the doctor last night (who might have even been younger than Doogie Howser) kept telling me how good Mila looked and how he was sure it wasn't cardiac related and he'd have to ask the supervising doctor if they even wanted to check hear heart out or not and it's probably just a virus. Thanks to the supervising doctor who clearly saw Mila was having breathing issues and listened to me that something was wrong.  She ordered the chest xray, EKG and echo. Doogie apologized by the way but I'm still annoyed by him. This is my baby's life. We didn't drive 2 hours (after already having been in the car for 3 hours that day) because we thought our baby just had a virus. UGH! Okay I think I'm done with that rant. I'm trying to stay positive but everyone has a breaking point I guess.

Trying to rest in God's promise. He is so good. Yesterday on my way home from the ped appointment when I knew we were headed back to the hospital I just lost it. Big tears. Feeling so overwhelmed and helpless. Feeling like I couldn't even put one foot in front of the other one second more. Exhausted. Frustrated. Stressed.  Wondering if all this would ever end. When I got home and walked in the door with Mila I saw a necklace laying on the ottoman. I picked it up because I hadn't seen it before. It was a oldish silver chain with a charm that said "hope." I asked my husband where it came from and he said he found it in the couch cushion. I just smiled. I needed that sign.

Please keep the prayers coming for Mila.

Monday, January 9, 2012

Admitted

Mila has been admitted to the cardiac unit. She has a ton of fluid build up around her heart...i already forgot the name of the condition....it sometimes occurs after open heart surgery amd its caused by inflamation of her heart sac. This can make kids feel really crummy like a bad flu bug. She has a partially collapsed lung due to the fluid which explains the breathing issues. The urine culture was clear meaning the meds she is on are working! We are still waiting on blood work to rule out other infections anf make sure the ecoli hasnt travelled to other parts of her body. They will increase her lasix and start her on toritol in hopes of decreasing the inflamation and draining the fluid. Please pray she will be responsive to the meds. They will do a repeat echo in the morning and if the fluid isn't decreasing they will have to do a surgical procedure to manually drain it and we want to avoid that at all costs. Thank you for your continued prayers. Oh how we love this little girl. She is such a fighter and after all the crying tonite she gave me a half smile. I can't wait to see her feeling better.....any day now!!!!!!


Prayers Needed for Mila!

Mila is doing worse again. She had a bad evening and night, and we just knew once again something wasn't right. We went to our down syndrome clinic appointment today and the doctor suggested having her admitted to the hospital tomorrow after her echo cardiogram if she continues to do worse and does not start eating. She is not eating more than 1 ounce every 4 hours or so. She's sleeping a lot. He was concerned she might be having cardiac issues because her liver was palpable and down. This is certainly what we were fearing but really hoping not to hear. He thought we'd wait and see through tonight and hope one more dose of antibiotics will help the UTI and then tomorrow we'd get her all checked out cardio-wise as planned.

So on the way home we came up with a plan of action for tomorrow. Then we went for a follow up with her ped about her UTI, etc. She has a multi-drug resistant ecoli urinary tract infection that is only found in hospitals. She said she has never seen it in this area before. Way to be unique Mila. The drug she is on should be working, but she continues to have a fever and seem to be in a lot of pain. They cannot give her an antibiotic injection because anything that comes as an injectible does not work on this strain. There are some IV forms that they may be able to use. The ped this afternoon was more concerned with her rapid breathing, which had started since coming home from the DS clinic just an hour before, paired with her liver not quite feeling right...she said those are not good signs in cardiac kids and we should probably just drive to Pittsburgh tonight and have her admitted :( We are hoping and praying big time her heart is okay. I just don't think we can go there again!

Please Please Please pray for us! We are frustrated for Mila and worried sick. Hoping she will find relief soon. It's just not fair for her! Trying to hold back the tears :(

We are packing to head out for our 2 hour drive and waiting on a call from the doctor to see if we need to go through the ER or if we will just be admitted.

Too tired for a title...

Mila seems to have taken a turn for the worse again yesterday evening and last night. Hoping for some answers today. Please pray for our jelly bean! This is one heck of a path we've been walking and our legs are growing tired!

Saturday, January 7, 2012

On the Mend....Take 2



We're hoping Mila is on the road to recovery!! The evening after her first antibiotic dose she slept 7 hours straight, then woke up around 3 to party with Daddy for a bit. Last night she didn't sleep so well though....fooey! She's still crying a little in her sleep and waking up a bit. But we've started seeing signs of that happy girl...you know the one we met for A DAY after returning home? Shawn and I were talking and realized we've really only seen Mila healthy and painfree ONE DAY of the entire time we've known her (and we don't even think she was completely painfree either)!!! We can't wait to see her feeling 100%...Thanks for all your sweet and encouraging comments! They mean the world to us! Please keep praying...specifically that Mila would start eating better again (not sure if the UTI is still causing her decrease in appetite or if the antibiotic is giving her a belly ache), and prayers that she would get the rest she needs! This week we have Down Syndrome Clinic appointments for both girls on Monday and then cardiology follow up in Pittsburgh on Tuesday, Early Intervention Evaluation on Wednesday, and a kidney ultrasound on Thursday....are you as tired as me just reading that?

Here's a taste of what we're in for....girl is feeling a little better! (She is so happy and smiley like this when she wakes up from a nap and is well rested....the rest of the day....mehhhh....well maybe not this happy, or even a little happy....but hoping she's on the mend!

Thursday, January 5, 2012

Poor Mila :(

So Mila hasn't been herself since the first couple days home from the hospital. She was like a new baby for a few days but was sleeping terribly from night 2 and just fussy and upset a lot. It has been a LONG two weeks my friends. If you saw me you might run for your life....1. because I look awful and 2. because I'm an emotional basket case without sleep! Anyways, I took her to the doctor on Monday because she just didn't seem right but they didn't find anything. They decided to add another medication for reflux (she was already on one) since her reflux has been so terrible since surgery. Nobody could tell me why it has gotten so much worse since surgery, just that "it sometimes happens."

Yesterday she came down with a 101 fever and last night she cried the entire night....asleep or awake it didn't matter. I took her back to the doctor today and asked if they could do a UTI test (I had asked on Monday if it was a possibility but the PA said no because she had no fever...we had been medicating her with tylenol for her surgery pain so that was hiding the fever but it didn't occur to us...oh and I had also asked in the cardiac step down unit if there was a possibility of her having a UTI because her urine smelled so bad...but I was told it was from the antibiotics). So while waiting for the doctor I was changing Mila's diaper and she started arching her back and screaming like she's been doing a lot (we assumed acid reflux or gas all along) but at the time of this happening I happened to notice she was peeing since I was changing her diaper. I knew it was a UTI. Once the doctor came in she agreed with some of her symptoms that she should be tested and sure enough she has a rockin' UTI...a pretty nasty one :( She will need a kidney ultrasound to see if her kidneys are infected as well since it is so bad. She is on a pretty high dose of medication to try and get rid of this infection. The doctor said it's likely she has had it since leaving the hospital from the catheter (I guess she is assuming based on how bad of an infection it is and her bad reflux along with the fact that she's not been herself since then). The doctor said the worsening reflux is a symptom of a UTI. She said some kids vomit and some reflux really bad when they have a UTI...I never knew and never would have connected the two.

So if you could spare a prayer....Mila has been through so very much in the last couple of months and it's about time for her to catch a break and start lovin' life like she was meant to! We're pretty exhausted too and suffering from parent guilt from this going on so long and us not figuring it out until 2 weeks later :( Here's hoping that's why she's been sleeping so poorly and maybe in a few days we can sleep again!

Tuesday, January 3, 2012

Finding a New Normal

Each one of us has had to find our new normal as well as finding our new normal as a family of four now! The hardest part has been the lack of sleep! The whole open heart surgery thing really screwed up Mila's sleep! Part of it I'm sure is/was just waking up scared, and the other part I'm pretty sure is that she got used to being picked up every single time she even whimpered while in the hospital and when first home because we were afraid she was scared or in pain and we wanted to comfort her. While in the process she forgot how to get herself back to sleep without us and was waking every single hour. We'd rock her, put her down, only for her to wake up right away. When we finally got her down she'd wake up another hour later. So we've been working on teaching her how to get herself back to sleep little by little by little, while at the same time trying to give her the comfort she needs. We're making progress! She only woke up once last night where she needed help getting back to sleep. She woke up a couple other times and whimpered/cried for a minute or two and got herself back to sleep. The best part is that she was soooo happy this morning because she was finally well rested! We're hoping the progress continues.

If there is one thing I NEED in life, it is sleep! I'm a typical 8-9 hour a night sleeper and we got way spoiled with Zoya who sleeps 12 hours overnight and has pretty much since week 2 home! I could probably function on 5-6 hours, but certainly not on 3 hours added up by 20 minutes here and there. Let's just say you might have found me crying in my cold car in the garage at 2am one morning. Shawn has been so fabulous and has been strong when I couldn't be. He has taken a big hit on his sleep, all while working full time and I soooo appreciate it! We're working together trying to muck through this transitional time and trying to find some sort of a schedule-ish type day that works for Mila (and us).

When you consider all Mila has been through in the last 3 months, she is doing great. I mean the poor girl was taken out of the only home she's ever known, traveled half way across the world, saw lots of doctors, had airway surgery only 3 weeks after being home, and open heart surgery one week later! Whew! How did we make it through all that???? What a whirlwind! God surely carried us through and continues to do so. If someone would have told me this would be our path and we'd adopt a baby who would have so many medical needs, I would have said NOPE! We trusted God and followed him on the crooked, twisty-turvy path he laid ahead of us piece by piece. I never thought we'd be strong enough to make it down that path, but here we stand....rising with God by our side.

I can finally, just now, start to think about Mila's future a bit more. Seriously during that time we had to literally take life one moment at a time and simply could not see past the stepping stone we were currently walking on. Looking back I picture Shawn and I standing in the middle of an empty land with stepping stones only behind us, trying to see ahead but not being able to because of the heavy fog. Moment by moment, the Lord reached out and took our hands leading us to the next stone. The night I was alone in CICU with Mila I was soooo tired and stressed after a long rough day. She woke up for the 78th time and I just stood by her bed praying for God to lay His hand on her and comfort her because I was too weary to keep at it by myself. At that moment I so vividly felt God's hand on my shoulder comforting me. I prayed for Him to comfort her not me. But there He was beside me when I felt I couldn't carry on another minute alone. I surely felt His presence at that time more than any other time I can remember. Peace washed over me and I could feel so many prayers being said for Mila and for us. I treasure that memory because it comes to mind each time I am weary and feel like I can't make it to the next moment and it reminds me He is our strength and with Him we can get through anything even when the moment seems absolutely impossible. Mila-bean is teaching me so much already and helping me find a strength I never knew I could tap into.

Mila's last night in the cardiac step down unit! Zoya was soooo happy to see her sister again! And I'm pretty sure she was just as happy NOT to be the patient for once and be able to run through the halls and ride the elevators up and down just for fun!
They let us put a portable monitor on Mila and take her around the hospital. It was so nice to do something as a family of 4, even if it was eating dinner in the cafeteria together! (Mobile was a Christmas present)
Safe at home, right where she belongs!

Needing some PT to work on her pill bug (potato bug) pose...she curves to the right. My PT friends if you have suggestions until PT starts (soon) that'd be great! Yes her spine was xrayed and they said it looks okay, slight curve but they think it's all positional and related to her poor sleeping pose due to the airway issues.
My Mila-bean

She looks like a red head in so many pictures but not so much in real life...can't wait to see what color her hair turns out to be!
Girl loves her beads just like her sister!