Pictures

Sorry I've been so terrible lately about posting pics of my cuties. There's been lots going on!! Here is M's Baptism and E's (sniff) preschool (sniff) graduation.

Success

Surgery went great - 4 cysts found, treated and hopefully will not return. M was a champ - as always! It was great to see our AFCH "family" again, and especially nice to only spend 1 day there! We got home yesterday and all is well. She's sore, but eating well and not too fussy.

Surgery Number 16

We're really racking them up this year! M will be having throat surgery tomorrow morning at 9:00 CST. Surgery is always risky and always a little scary, but this time, no one is touching her brain and THAT makes Mama happy! Her ENT will be exploring her throat and treating the cysts or granulomas or whatever else he finds that is plaguing her. She had a scope two weeks ago and we could see a couple little intruders high up, but he thinks there may be more further down. Hopefully whatever he finds, he can successfully treat with this one procedure and she will heal up quickly. She has been pretty miserable for about the past month. We should just be spending the night and coming home Friday - a totally novel experience for us! Please say a little prayer tomorrow for M and Dr. McHottie. (Sorry, Honey, I had to throw that in there).

Kyrgyzstan's interim leader is on Facebook. The other day, this was her Wall Post:

Roza Otunbaeva

To the 65 families that are waiting to adopt their children - thank you for your emails of support. We are working on the resolution of your cases to the best of our ability. We understand your concerns, but please be patient, your families will be reunited.

A glimmer of hope? Maybe.............

Happy Shuntaversary Dolly!

Yesterday marked THREE months since M's last shunt revision. She's never gone more than a few weeks. Today we also saw her neurosurgeon who was beaming - literally smiling from ear to ear when he saw her and told me how great her scans looked. He is thrilled, we are thrilled, and hopefully all will continue to go well for our little angel. We have a six month pass from neurosurgery - hope we can make it! :)

Our waiting angel......

I started this blog back in 2008 to follow the adoption of our second child from Kyrgyzstan. In July 2008, we received the referral of our daughter. It was our hope that she would be home with us in just a few months to begin the life-saving medical treatment she desperately needed. Twenty-two months later, she is still waiting. She is waiting and suffering because of selfishness, bureaucracy, ignorance, and the heartlessness of "The Powers That Be." For nearly two years, we have been kept quiet and have been warned to be "politically correct". I am done. I am done protecting the people that are directly responsible for ruining the lives of so many children. We received pictures from the orphanage this past weekend and they were horrifying. We have submitted to every request, every requirement, paid every fee along the way and yet, these children are held hostage. We are constantly reminded that these children are not "OURS". They "belong" to Kyrgyzstan. Those people needs to be reminded that they are not possessions, but innocent human beings. I know there are people that will be angry for my posting this publicly. Get angry - I don't care. Frankly, MY daughter; MY innocent, little girl; is languishing in an orphanage. She is malnourished, neglected and being deprived of the care and love we have been committed to and longing to give her. There is no end in sight - she may never come home. I want to introduce her to the world - she deserves to have a voice and she deserves to be known.

FOUR!

My son....my hero

It's surreal to me to look at this little man and believe that today marks three years that have gone by since we first met. The orphange sights, sounds and smells are so fresh in my mind. I can still feel the butterflies I had in my stomach while walking up to the door and standing in the room waiting for the caregivers to bring him to us. I also vividly remember the fear I felt when I saw him for the first time. He was so pale, so fragile, so absent looking. Mostly, I remember the great sense of peace and relief I felt when we walked out of that orphanage a family of three. Our time in Bishkek was truly magical. Our time in Almaty was....so....not....magical, but a necessary part of the journey. Stepping off the plane in Chicago, we almost fell to our knees with joy that we were ALL home.

Every single day, MY SON (my heart still skips a beat that I get to call him that), amazes me. I'm amazed at his spunk, his spirit, his intelligence, and at times, his sass. More than anything, I am amazed by his resilience. He has been through more in his short life than most of us will go through in all of ours. While we can still see occasional traces of his past, of institutionalized life, most people would see nothing more than a wild, crazy, happy, super smart, normal, 4 year old boy.

I have learned so much from this little person. I have learned to live in the now, to not waste a single moment because each one is so precious. I have learned that despite what society says, it's okay to be different, to be individuals. I've learned that there are no hardfast rules when it comes to raising kids. My son wants to spend his days writing letters and numbers, pretending that everything (and I do mean EVERYTHING) is a railroad crossing gate, and playing with calendars instead of footballs. That's okay! My four year old suddenly wants to sleep in our bed and I don't see anything wrong with that.

I have no idea what the future holds for my little man. I have no idea what he'll decide to be or what kind of wild rides he will take us on. I do know that I will hold his hand the whole way (whether he wants me to or not); I will support him, love him unconditionally, and do whatever I can to make his life as happy and satisfying as it can be.

So, I want to tell my son today:

"Thank you! Thank you for the joy and laughter you bring to me. Thank you for all you have taught me. Thank you for loving me and allowing me to love you. Thank you for being strong and waiting for us to come for you. I love you with all my heart and I am so grateful for you!"

April 2007

April 2008

April 2009

April 2010

Newsweek!!

http://www.newsweek.com/id/236778

SPONSORED BY:
A prospective mother with the child she hopes to adopt walk the grounds of an orphanage in Kyrgyzstan in 2008. A Long Way From Home
After two years, prospective parents hoping to adopt children trapped behind bureaucracy and chaos in Kyrgyzstan are running out of hope.

By Laurie Rich Salerno | Newsweek Web Exclusive
Apr 21, 2010

A Long Way From Home
After two years, prospective parents hoping to adopt children trapped behind bureaucracy and chaos in Kyrgyzstan are running out of hope.

When the news broke about Torry Ann Hansen, the Tennessee woman who pinned a note on her adopted son and sent him alone on a plane back to Russia, Pennsylvania pediatric nurse Ann Bates composed a one-word e-mail from her Moscow hotel room. It said: "Seriously?"


That was the most that Bates, who was in Moscow to meet the 18-month-old boy she was in the process of adopting, could muster. Thanks to Hansen, it looked as though Bates's Russian adoption was going to be suspended. But this was frustratingly familiar territory for her. She and 64 other U.S. families are already mired in an endless-seeming battle in Kyrgyzstan to bring home 65 orphans whose adoptions were nearly finalized almost two years ago but have since been held up by obstacle after obstacle. To wit: two days before the Russian announcement that Hansen had sent her son back, Kyrgyzstan toppled its own government in a bloody revolution.


"I was sitting in the hotel room just bawling the first night, worried about Bishkek and my friends there and the little girl I hope to one day call my daughter," said Bates, who started the adoption process for the Russian boy in 2009, after mounting obstacles left her fearing she would never be allowed to complete the Kyrgyz adoption. She still hopes to bring both special-needs children to the U.S. "The second night, I heard about the Russian thing. I just couldn't believe it." That's when she sent her e-mail to the other waiting parents in the Kyrgyz group.

In the days since Russia announced a temporary freeze on American adoptions, these 65 families have watched the flurry of media coverage and rapid U.S. government action that's followed: the State Department will send a delegation to meet with Russian officials on April 29 and 30 to smooth over the crisis. In response, many of them have echoed Bates's sentiment of "Seriously?" For all the attention being given to people who might have their adoptions frozen, lost in the noise is the struggle of the families adopting from Kyrgyzstan who have already spent almost two years stuck in a dark comedy of errors.



"I am absolutely supportive of [the U.S. State Department] doing those things [in Russia]. I feel for all those people," says Lisa Brotherton, a California woman trying to complete the adoption of a 23-month-old Kyrgyz girl with cerebral palsy with whom she and her husband were matched in June 2008. "But where's the white horse for our kids?"

It was right around June 2008 that Kyrgyz adoptions began falling apart. Up to that point, the number of American adoptions of orphans from Kyrgyzstan had been increasing for four years, with 78 in 2008, compared with just one in 2004, soon after adoption from Kyrgyzstan first became available. (In 2003 a Colorado woman working in a Kyrgyz orphanage petitioned the government to bring a toddler with severe facial deformities to the U.S. for reconstructive surgeries. After the successful surgeries, she worked with the government to formally adopt the child, opening the door for U.S. adoptions.) Ironically, many prospective parents who had been seeking to adopt internationally wound up in Kyrgyzstan because of the comparative ease of requirements and speed of the process.

After they were matched with and visited a child in Kyrgyzstan, many of the families were told that their adoptions would be completed within weeks. Then a quiet freeze took hold of the process. Scheduled court dates in late summer and early fall that were necessary to finalize adoptions were postponed again and again, but waiting parents were told that their cases would likely be resolved soon. "We all really believed that at the beginning of the year, things would turn around," says Suzanne Boutilier, a California advertising copywriter hoping to complete her adoption of a toddler.

Weeks pushed into months until Feb. 2, 2009, when Igor Chudinov, Kyrgyzstan's then–prime minister, called a moratorium on all international adoptions. He cited fraud and abuses of the system by orphanages and adoption-agency liaisons, and said his government would investigate these cases, work with UNICEF to start drafting new laws for such adoptions, and consider joining the Hague Adoption Convention, the international treaty designed to set consistent and transparent country protocols for international adoptions.

That's when the 65 prospective parents whose cases were stuck in the pipeline contacted the U.S. State Department for help. "I applaud them," Boutilier said of the Kyrgyz legislators. "I would never want to find out after the fact that I adopted a child that wasn't legally adoptable. Unfortunately, it's caused an incredible delay." Time is vital for many of the pipeline children who have disabilities and other special needs—everything from severe cleft palates to cerebral palsy—and the adoptive parents want to address these issues medically as soon as possible. They also fear that the kids will develop attachment disorders and other emotional and intellectual issues that commonly result from growing up in an institution. A study out of Boston's Children's Hospital, the Bucharest Early Intervention Project, found that children raised in orphanages had on average significantly lower IQs and higher rates of mental illness than those raised in family-type environments. "In my nightmares it's going to be another few years [before the adoptions are processed]," says Brotherton, "and we're going to get her home and we're going to have to deal with all the stuff that happened from the time we met her as a 3-month-old until then."

Although the State Department did not send a delegation, as with Russia, it did host a small group of Kyrgyz legislators in Washington and introduced them to some of the waiting families last May. In June it sent a U.S. adoption expert to the country to meet with Kyrgyz lawmakers. And then, after a few more months of inactivity, adoptive parents thought they got their big break.

Prime Minister Chudinov was headed to the U.S. for the U.N. General Assembly in September, so the waiting parents lobbied their respective representatives, asking them to press their cause with him when he was in the country. Both Kansas Sen. Sam Brownback and Pennsylvania Sen. Bob Casey met with the prime minister on behalf of the stranded orphans. According to Brownback's office, Chudinov declared that upon his return he would tell the parliamentary committee in charge of adoption legislation to expedite the 65 waiting cases.


Three weeks later, Kyrgyz President Kurmanbek Bakiyev dissolved his cabinet, forcing Chudinov to resign. The waiting parents were crestfallen.

Proposed deadlines for the Parliament to present and vote on new adoption laws came and went. This February three waiting parents, including Brotherton and Boutilier, went to Kyrgyzstan with an international-adoption advocate to meet with members of the Kyrgyz Parliament, the ministries of health and education, and UNICEF. They also saw almost all the 65 pipeline children in their orphanages in Bishkek and outlying regions, and were able to take pictures and provide updates to the parents waiting stateside. When they left, the four had little hope that their trip had truly changed things.

To their surprise, a month later, on March 19, the English-language news agency 24.kg reported that the Kyrgyz Parliament had passed the bill addressing adoption by foreigners. But two weeks later the rumblings of unrest that would eventually foment the overthrow of President Bakiyev and his administration began. As a result, the Kyrgyz Parliament and the entire administration, which had each spent nearly a year and a half working on the issue, were dissolved, and a new government is now being built, piece by piece.

A U.S. State Department official said that "we are working to determine the provisional government's stance on the pending cases, and the status of the bill and the related draft regulations. We will continue to urge the Kyrgyz government to resolve the 65 cases."

But the families don't know where the bill itself lies, whether it will be enacted by the interim government of former opposition leader Roza Otunbayeva, or whether they'll have to wait for what many are saying will be six months until a new government is elected. Or whether anything will happen at all.



Rich Salerno is a freelance writer in New York specializing in Central Asian affairs.

Please Pray for the People of Kyrgyzstan

Political unrest....yet again. This does not bode well for anyone, especially our waiting children. Click Here to read the story.

As Promised

BAD Blogger

Sorry......I've been neglecting my blog terribly. I know, I still owe pictures and I promise as soon as I am able to take a breath I will get some uploaded. There seems to be a lot going on. M is doing well - tolerating her IV antibiotics (2 more weeks), eating, pooping, doing all the stuff she should do. She continues to have swelling around her posterior shunt, but her neurosurgeon has assured us he's not concerned about that and expects it to resolve on its own. Her MRI last week showed improvement in some of her ventricles, although her temporal horns are still enlarged. it's early, though. Her Echo showed that there is still vegetation on the end of her VA shunt catheter. Neurosurg wants to finish antibiotics, wait three weeks, do blood cultures, another Echo in May and reassess at that time. So, we just keep plugging along. She is still having nystagmus pretty much constantly and doesn't want to focus and track with her eyes. She sees ophthalmology next week and Neurology the following week. It's possible she's having a lot of subclinical seizures. In any case, I hope we get some answers soon.

E is loving life now that the snow is gone. It's crazy - one week there was like 6 inches of snow covering the ground and the next week it was all gone! It's been nice enough to go for a walk the last couple of nights after supper, ride his bike, draw on the driveway. Life is good!!

We have some really difficult decisions to make regarding K. There are new rumors regarding proposed new legislation that could put our completion of her adoption at risk. There is also a huge decision to be made that affects her medically. We are in such a tough spot right now.

I promise to update soon - WITH PICTURES! Happy spring everyone!

Home Sweet Home

Yup - you read it right - we are ALL HOME!!!!! At the risk of jinxing things, I'm going to say just one time - M is doing so great! In an effort to rescue her VA shunt catheter as well as her Hickman, the ID and Neurosurg docs have chosen to extend her IV antibiotic course to six weeks. Because of that decision, the decision was made to allow us to do the remaining five weeks of IV antibiotic infusions at home. Let me tell you after TEN, yes, TEN long weeks in the hospital, there is nothing like having all four of us under one roof again. I promise to catch up on pictures and other stuff soon. Today is Neurology and Pediatric appointments for E.

Septicemia

Three.

More.

Weeks (at least).

Close, but no cigar

Not today anyway. The plan, which I have not really discussed much for superstitious reasons, was to go home today. Beginning Saturday, M started having fussiness and abdominal.......issues (I'll spare you the details). The abdominal issues have resolved, the fussiness has escalated to epic proportions. A shunt tap today yielded results consistent with a shunt infection. An EEG revealed many sub-clinical seizures during the course of the test. Labs revealed a sudden, dramatic elevation of her liver enzymes. That's a lot of crap (for lack of a better word) to find the day you're supposed to be discharged after a two month stay in the hospital.

More tests, more discussion, pediatric hospitalist consult, blah blah blah. I spent the entire day preparing for the worst, but hoping for the best. We got it, the best that is, in the form of a severe bilateral ear infection. I know most people won't understand this, but I nearly jumped for joy when those words were uttered. Okay, yes, I feel terribly sad for M that she has to endure such pain, but seriously, an ear infection - that's so....NOTHING! This girl has had 14 brain surgeries in the past 4 months. She has had 3 brain hemorrhages. She has been in the hospital for 6 of her 7 months of life. An ear infection? We can oh so happily manage that!!

There is still that chance that she could have meningitis brewing again which would lead to the shunts being removed, ventriculostomies placed, antibiotics for two weeks, new shunts placed, etc. etc. Essentially, we would start over - AGAIN. Our neurosurgeon feels quite confident at this point that that's not the case. We sure as hell hope he's right!

As for the subclinical seizures, as many as she had today during her EEG could definitely cause irritability, confusion, and lethargy. The neurologist increased her Keppra and hopefully we will find a nice, stable dose for her.

M will get an abdominal CT tomorrow to rule out any liver problems or infections. As many VP shunts as she had fail and the 2 that were consecutively infected could mean that something is/has been brewing down there.

So, we're close - as Kevin says we're just "perfecting", tweaking things so that when we walk out of these doors we will have absolutely no reason to come back anytime soon.

Yesterday, we took E to the model railroad show in town. It was pretty incredible. What a fun (and expensive) hobby! He is a train junkie and enjoyed it so much. I think he really felt special that he got to have Mommy AND Daddy all to himself for a few hours. Truth be told, Mommy and Daddy enjoyed it quite a lot, too!! I so look forward to the day when we can do something with our entire family.

Last night I was pleasantly surprised to find new pictures of our beautiful, K, courtesy of the traveling Kyrgyz mamas. She's so big and still so bright and happy looking. She is one strong girl, I have no doubt about that.

Hopefully tomorrow brings good news for me to share. Sorry for all the picture-less posts lately. I can't upload here and I haven't been home for more than a few hours at a time this last week. Precious time that is best spent cuddling with a snuggly, silly, little monkey. I promise I'll catch up as soon as I can. :)

I Love My Village

In my last post I talked about villages, communities, other cultures who live to support each other. Even in our face-paced, selfish society, we have villages of our own. They are made up of friends, family members, congregations, coworkers, neighbors, and sometimes even complete strangers. Today I was reminded of that.

For the last 2 1/2 years I have been proud and blessed to be an employee of an incredible health care system. I enjoy my job, I have great respect for my employer, and I love my coworkers. Sure, we all have "those days", but for the most part, I don't have anything to complain about. Today, I was presented with another incredibly generous gift from team members throughout the health care system. Team members that I currently work with, used to work with and some whom I've never even met. I was reminded yet again that there are those in this world who are compassionate and inherintly good, unselfish people. THANK YOU!!

M returned to surgery this afternoon. I cannot tell you how many this is now in the last 2 months. This time she went 6 whole days - a new record! We are in limbo - it has been 2 months that we've been living apart, half of us in this hospital room, half of us at home and working. Yet, the world goes on around us. We've been living on one income since October and that causes a great deal of additional stress. We are at a point where we have to decide between paying the mortgage, buying food and diapers, or paying other bills. Today's gift has taken the burden off for a while longer and for that we are so grateful!

In talking with the Hospital Health Psychologist today(who apparently was sent to make sure I didn't need to go to the rubber room) I came to a conclusion. It's not only the fact that it's hard to be here, hard to watch M suffer over and over again, hard to have our family separated, hard to not know how long my job is going to be there waiting, hard to figure out where the money is going to come from; the lack of control is excruciating! I am, by nature, a control freak. I thrive on schedules and knowing what's going to happen when. I have NO CLUE what each day is going to bring. Will it bring seizures, toxic drug levels, another surgery, more scans, new medications, new nurses, new residents, new medical students. I have to tell M's story over and over and over again. I have to submit to others' ideas and probably the most exhausting, I have to fight every day to get people to listen to me and believe me when I tell them there is something wrong. I have to be my daugter's advocate because she can't do it for herself. I have zero privacy, strangers in and out all day and all night, a bathroom door that doesn't close tightly and definitely doesn't lock. I have to rush through a shower whenever a convenient moment presents (and some days it doesn't), rush down to get a bite to eat not when I'm hungry, but when the schedule allows. I know I could leave her with a nurse or a volunteer, but I choose not to. This is no way for a person to live, yet I feel I can't and shouldn't complain. I have to be grateful that we have such excellent care.

So, that's where I stand today - I'm frustrated, sad for my girl, but overwhelmed with gratitude for the generosity and compassion of others. I truly do love my village!!

Sorry for the delay

Thank you, Ann, for the gentle reminder that I've been too quiet these last few days. So, what's been going on?

We're still hanging in there. We're still a family separated; two of us 60 miles away and 1 of us 6000 miles away. We're getting by and maintaining a shred of sanity.

For the last almost eight weeks we've been blessed to have more prayers sent up and good wishes passed on than we could ever imagine. We've been blessed to have excellent doctors and supportive family and friends to see us through this. About a week ago, however, we were given an incredible gift. It's not often in our country that we see true compassion and unselfishness at work. In other countries we see it all the time. In the face of tragedy whole nations, communities, villages drop everything to come to the aid of their fellow man. It's not often in our society that people sacrifice for others with no expectations of receiving something in return. Sure, we talk about it a lot, but how many of us actually do it. That is exactly what has happened for our family. We have been touched by an angel - an individual with true unselfish compassion, an individual who dug deep and realized that when someone in your "village" needs help, you drop everything and come to their aid. We have received not only an amazing gift from this person (you know you are), but renewed faith and spirit at a time when both have been waning. "Thank You" seems insignificant, but I guess that's part of our "we must return the favor" mentality. Truth is, we can't possibly return this favor, we can only accept this amazing gift and say simply, publicly "THANK YOU FROM THE BOTTOM OF OUR HEARTS!"

M is doing well. We are out of the PICU and truth be told, I want to go back. I'm not comfortable on a regular floor. I miss our nurses, I miss having residents and doctors around all the time, I miss being able to get something done immediately instead of having to wait all day! I digress......It's been four days since her last surgery - a current record. She had an MRI, and dye study yesterday and her shunts appear to be functioning well at this time, with the exception of one trapped temporal horn. I won't go into detail, but my hydro parent readers get it. Not sure yet if there's going to be any intervention for that. Our neurosurgeon feels best at this time to let it go as long as it is not causing her problems. I think it IS causing problems, but that's a battle I will have to fight. He plans to possibly do a repeat dye study today through her other shunt just to ensure we get the whole picture before possibly starting to talk about going......H-O-M-E. She has had an extremely difficult time adjusting to the anti seizure medications. She's been pretty much sleeping nonstop. M still does not have use of her left arm/hand and her left leg is weak. She still needs a lot of "support" with eating as her sucking is poor. It's impossible to tell how things will pan out long term. She has been through so much this past 2 months.

E is continuing to be a trooper through all of this. He is definitely having some significant (new) insecurities. He cannot be left alone at all. You can't leave the room, go to the bathroom, take a shower, nothing. It has carried over into school where he launches into a complete meltdown if his teacher is out of sight. I feel so guilty and it breaks my heart that he feels like he's going to be left by any of his loved ones. I know he's resilient and in five years he won't even remember this, but right now, it's so hard to watch him struggle. Other than that, he is doing incredible with school and is learning more each day. He has starting pitting Mom and Dad against each other. Since we are all never home at the same time he will do something inappropriate, be reprimanded and chime in with "Oh, Daddy lets me do it." Yeah right! He had his neuropsych evaluations in January. He definitely has Sensory Processing Disorder and possibly ADHD, although I'm not a fan of the ADHD diagnosis - I think it's WAY overused (go ahead and flame me if you wish). I definitely see the SPD, and have since he came home almost 3 years ago, but he is also an almost 4 year old LITTLE BOY - they are supposed to be hyper and a little crazy! We have tools and resources available to work with him on his sensory issues, but as for medicating my 4 year old - ABSOLUTELY NOT - NO WAY,NO HOW!!

K is still hanging out at the BBH waiting for her family to come and rescue her. She received a very special visit this past week from 3 beautiful, talented waiting Kyrgyz mamas who travelled with the president of JCICS to Bishkek on Feb 5th. Their goal was to meet with as many government officials as possible to get our plight heard. They have been extremely successful! They have worked so hard for the children and waiting families and we are so grateful to them. February 15th was the "magic" day that Parliament was supposed to hear and vote on adoption legislation. It was the day we've been waiting for since oh, last fall. It came....it went....nothing happened - BIG shock there (insert sarcasm). While I do have renewed faith that these adoptions will be completed....eventually, I am still frustrated to no end that "my" little girl has to sit and suffer.

So, that's it in a nutshell. We're hanging in there, waiting to all be healthy and home together again.

Membranes, Adhesions and Shunts oh my

So, after a day of extreme fussiness, lethargy, seizures, EEG, CT scan, more fussiness, even more lethargy and a helping of bradycardia M's neurosurgeon decided to take her to surgery tonight instead of waiting until tomorrow morning.

His response to surgery is usually "it went great", "things look good", etc. Tonight his response was a tentative "it went....okay." Not good enough, but it's what we get this time. It seems my girl likes to quickly build up membranes and adhesions and close all of her little pathways off so her CSF cannot drain properly.

Ultimately, the surgeon felt his and her best option at this time was two shunts. Again, not ideal - 2 shunts means 2 more sources of potential complications. Hopefully this will be the answer for her, though.

For now, we wait, as always, to see if she develops problems or if....dare I say it....we actually get to go home soon.

Seriously....

...why can't she get a break? Back to surgery tomorrow..............

Surgery Number......

.....ugh - I can't count them anymore!

Anyway, M should be heading down to surgery within the next hour. I'm hoping with every part of my soul this is the last one for a very long time. I have to admit, I am N-E-R-V-O-U-S this time. After everything that has happened (i.e., gone wrong) over the last two months, fear is getting the best of me this morning.

There, I got that off my chest, now back to sending positive energy into the universe.

What a difference a day makes!

Thursday & Friday
Saturday

Leap forward, baby steps back

Good news is that M was extubated last night and handled it like a champ! She had a very brief period of difficulty, but then settled in and rested fairly comfortably. The bad news is that this incident has left her with some neurologic damage. She has lost a lot of function in her left arm/hand as well as her ability to suck. She is being tube fed and we are "practicing" a lot with the bottle. She is definitely interested, she just can't quite make it happen....yet. There is a possibility this is all transient and function could return. Only time will tell. She is not as interactive as she was before and I haven't been able to coax a smile out of her yet, but it is still early. The important thing is that she came back to us - that is all we have ever asked. We're really good at facing challenges and she is one tough, stubborn girl. We're hopeful that with intervention, therapies and a lot of hard work we'll make great strides.

Ghana Court Day

Shout out to blog buddy Michelle and super-husband Keith as they head to court today for the adoption of their beautiful daughters, B & V. Sending positive vibes to Ghana for the issuance of a full adoption decree today!

In a (pea)nut shell....

So, our little peanut is holding her own. She spent 6 hours in the OR last night where her neurosurgeon successfully removed all of the blood and clots from her hemorrhage. She returned to the PICU intubated and on a ventillator. Today her lungs are "wet", so because of that and the fact that she underwent 2 rounds of anesthesia, throat surgery, 2 brain surgeries and had neurologic complications - all within the last 4 days, they opted to leave her on the vent for a day or two. M's neurosurgeon plans to replace the VA shunt as soon as she is stable enough for a return trip to the OR. God PLEASE let this be a successful, long-term placement!

Success short lived

I wish I was posting pictures of my happy, healthy girl, but she is in surgery right now. M suffered a significant hemorrhage in the left side of her brain. Her neurosurgeon is removing the blood, flushing her ventricles and placing another ventriculostomy (external shunt). Yes, we are starting over.

I'm tired and sad.

Surgical Success!

M's surgery went well. They were able to put in the VA shunt like we had hoped and her neurosurgeon is extremely pleased with how things went. Hopefully we can start celebrating weeks and possibly even months of shunt success.

The ENT found a very large cyst below M's vocal cords. He "de-roofed" it and hopefully it will heal down flat. Chances are she may need another procedure to take care of it for good, but this is a start. He expects she will have a marked improvement with her breathing as a result. Right now she has a horribly sore throat that is prohibiting her from eating much, but with rest and some steroids, it should heal relatively quickly.

We feel so blessed to have made it to this point. It has been a loooong, challenging couple of months. Hopefully we are one day closer to having our whole family home together again!

This entire experience has definitely changed us - for the better, I think. We have a renewed appreciation for life, our kids, our health, our jobs, everything we have. I have been overly sensitive (and pretty annoyed) lately about people who claim to be "sooo busy" all the time. I hate hearing people complain about working, not having enough money, and my pet peeve - people who complain about their kids! It's summed up well by something that my darling husband forwarded me this morning. It really touched me and reinforced what we've learned about the truly important things in life. Please read carefully and try to take it to heart:

Too many people put off something that brings them joy just because they haven't thought about it, don't have it on their schedule, didn't know it was coming or are too rigid to depart from their routine.

I got to thinking one day about all those people on the Titanic who passed up dessert at dinner that fateful night in an effort to cut back. From then on, I've tried to be a little more flexible.

How many women out there will eat at home because their husband didn't suggest going out to dinner until after something had been thawed? Does the word 'refrigeration' mean nothing to you?

How often have your kids dropped in to talk and sat in silence while you watched 'Jeopardy' on television?

I cannot count the times I called my sister and said, 'How about going to lunch in a half hour?' She would gas up and stammer, 'I can't. I have clothes on the line. My hair is dirty. I wish I had known yesterday, I had a late breakfast, It looks like rain'. And my personal favorite: 'It's Monday.' She died a few years ago. We never did have lunch together.

Because Americans cram so much into their lives, we tend to schedule our headaches. We live on a sparse diet of promises we make to ourselves when all the conditions are perfect!

We'll go back and visit the grandparents when we get Steve toilet-trained. We'll entertain when we replace the living-room carpet. We'll go on a second honeymoon when we get two more kids out of college.

Life has a way of accelerating as we get older. The days get shorter, and the list of promises to ourselves gets longer. One morning, we awaken, and all we have to show for our lives is a litany of 'I'm going to,' 'I plan on,' and 'Someday, when things are settled down a bit.'

When anyone calls my 'seize the moment' friend, she is open to adventure and available for trips. She keeps an open mind on new ideas. Her enthusiasm for life is contagious. You talk with her for five minutes, and you're ready to trade your bad feet for a pair of Rollerblades and skip an elevator for a bungee cord.

My lips have not touched ice cream in 10 years. I love ice cream. It's just that I might as well apply it directly to my stomach with a spatula and eliminate the digestive process. The other day, I stopped the car and bought a triple-decker. If my car had hit an iceberg on the way home, I would have died happy.

Now...go on and have a nice day. Do something you WANT to... not something on your SHOULD DO list. If you were going to die soon and had only one phone call you could make, who would you call and what would you say? And why are you waiting?

Have you ever watched kids playing on a merry go round or listened to the rain lapping on the ground? Ever followed a butterfly's erratic flight or gazed at the sun into the fading night? Do you run through each day on the fly? When you ask someone 'How are you?' Do you actually hear the reply?

When the day is done, do you lie in your bed with the next hundred chores running through your head? Ever told your child, 'We'll do it tomorrow.' And in your haste, not see his sorrow? Ever lost touch? Let a good friendship die? Just call to say 'Hi'?

When you worry and hurry through your day, it is like an unopened gift.... Thrown away.... Life is not a race. Take it slower. Hear the music before the song is over.

Surgery Day

M just went down for her hopefully uncomplicated VA Shunt placement. She's had 3 failures in 3 months so we're praying this is her last surgery for a long, long time. There is concern that due to her left-sided Hickman placement, she may not be able to get the VA.


He will then have no choice but to place another VP shunt. We really don't want that because chances are it will fail as the other 3 have. Her abdomen and liver just cannot handle the volume of drainage. Putting a VP back in feels like taking ten huge steps backward. I'm afraid we're going to end up back in this same spot in a week or so.

While she's in the OR today, she'll also be having a scope performed by ENT. Hopefully they can get to the bottom of her floppy airway and noisy breathing. Chances are it is all a result of her being on a ventilator for a month after she was born, being intubated so many times for surgery and it'll be something she will eventually grow out of. It'll be nice, though, to finally have an actual answer or at very least a theory.

Please lift up some prayers for our little fighter and her surgeons today.

140

That's how many days of her 190 day life M has spend in either the NICU or PICU. There is currently no end in sight. Her numbers, you know the famous "numbers", are all over the board and she is in no state to head to the OR Tuesday for a new shunt. Our theory is that she will still head to the OR, but for another ventricle flush. We're probably looking at another couple weeks. If we could get a decent, consistent nurse, things would be A-okay, but we've had some real winners (insert sarcasm here) lately! Thankfully our neurosurgeon is due back from his week long conference (which happened to be in the Caymans) tomorrow. I have no doubt he'll have some answers and a fabulous plan in place. :)

Hospital Life

A quick update

You'd think I'd have tons of spare time to blog sitting around a hospital every other day, but it seems we are busier than ever.

M's surgery last Tuesday went well. She had a ventriculostomy and an external ventricular drain placed. Her CSF is draining well and her infection appears to be under control. There were concerns after her surgery that her ventricles were loculated (walled off) again, so she had a dye study on Thursday. It showed, thankfully, that all of her ventricles are communicating at this time. That means when her new shunt is placed it "should" be relatively uncomplicated. She is tolerating hospitalization as well as ever. She is the most happy, content baby I have ever met!

We have made the decision to hold off on having her new shunt placed until our neurosurgeon returns from the conference he is attending. We had the option of having the other neurosurgeon do it later next week, but my mommy gut says to wait. Tentatively her surgery (number 8) is scheduled for Feb 2nd. She will receive a VA shunt this time with the distal part of the tubing running to her heart instead of her abdomen. Hopefully it will provide better results and we can actually start counting weeks and perhaps even months of shunt success instead of days.

E, my tough, sweet, boy is doing okay with all of this. It has worn on him for sure. Not having both of us at home every day/night has been difficult. He has regressed a bit to being very insecure and needing to have us in constant sight. He is also sleeping with us - something he has never done. As long as we keep him informed of what's happening and who's going to be where each day, he seems to be comfortable.

Kevin and I are holding up okay. We're exhausted but managing. We both have had "those days" although we try to have them opposite each other. It would definitely not be good for anyone to have both of us melt down on the same day! :)

My main struggle right now is internal - I feel so guilty and at times sad and overwhelmed. Guilty when I'm not with my daughter in the PICU, guilty when I'm not with my son at home, sad that I only see my husband for a few minutes every few days, guilty that I'm not giving 110% at work every day, guilty that my house is not in tip-top shape, and definitely overwhelmed at the thought of trying to figure out how we're going to pay our bills this month. I pride myself on being a great mom, a great wife, a great friend and a great employee. Right now I don't feel like any of those and that frustrates me to no end. I know this is merely a blip in our life. I know that years from now we'll look back and it won't seem so significant. Truth is, we're getting by and I know we will come out okay - it's just a matter of time.

Lucky Number 7

7th surgery scheduled for 7:30 this morning. I guess it's not lucky that M is having her seventh surgery today, but hopefully after this one we are one away from being done for a long, long time! Just trying to find the sunshine in all of this............

Things That Don't Suck

Alright, thank you to all who indulged me in my pity party last night. I'm over it and ready to move on. It sucks that M has had to go through so much in her short life and that our family is once again separated. So, to lift my spirits, I thought I'd start out our 2-3 week hospital stretch with a little game of "Things That Don't Suck". Here's how it works: Take into account your current life situation, ignore all the things you might be inclined to complain about and list ten things in your life right now that DON'T suck. If you're reading, consider yourself tagged and post your answers to your blog. I'll start:

1. My Husband - my wonderful, amazing, strong and supportive husband who lets me have my freak outs, understands my insanity (or at least pretends to) and loves me no matter what.

2. My Kiddos - my silly, crazy son who can always make me laugh and shows me the beauty and excitement in everything around us; and my beautiful, resilient daughter who faces each obstacle with grace and shows me every day what tough really is.

3. Support - we have had such an outpouring of support from our family and friends. It's so comforting to know that there are so many people poised and ready to help us out.

4. My job - so far, they have been extremely supportive and understanding of my need to have time off.

5. Our doctors - we have some of the finest doctors in the nation. I have complete faith in the care M is receiving and at a time like this, that is a huge weight off my shoulders.

6. American Family Children's Hospital - I've said it before, this is a phenomenal facility with incredible staff that we are blessed to have access to.

7. Our Insurance - we all complain about it, we all hate to pay for it, but without it, we would be financially devastated. We have some excellent coverage and for that, I am so grateful.

8. The Internet - may sound shallow, but without it I would not have access to the virtual family and friends I've come to depend on these last few years.

9. Living in the US - if there's something you want to complain about, watch 2 minutes of Haiti coverage, then get over it and be thankful for what we have here!

10. Diet Coke and Hospital Potatoes - need I say more?

Speechless..........

We're back in the PICU, where we will remain for ANOTHER 2-3 weeks. We had five whole days at home. I have absolutely nothing to say right now.

Surgery, Diet Coke and yes.....more potatoes

M went to surgery at about 8:30 this morning. I went down to the cafeteria to get the super giant soda - nothing beats fountain Diet Coke! I decided I should grab some food and you guessed it - I ended up with Cheesy potatoes. There has to be some sort of potato addiction support group out there.

I digress.

M's surgeon called shortly after she went down and said that after reviewing her scans he did not feel the planned left sided shunt placement would be best for her. He didn't want to put it back on the right because that's where the infection and bulk of the inflammation was and she's had 5 other surgeries on that side. By putting on the left we risked one or more of the ventricles not draining well and ending up right back in surgery. By putting it on the right, we have a little higher risk of a repeat infection or blockage from the remaining inflammation. Ultimately, long term, having on the right is the best option, so that's the plan.

It appears she will probably come back to the PICU after surgery to finish out her IV antibiotics. If all goes well we should go home Saturday night. Apparently, the other floors of the hospital are filling up fast.

So, we wait and pray that our little fighter continues to fight and that we'll all be home together again this weekend.

Step away from the potatoes

If I have to be stuck in a hospital, this is a pretty darn good one to be stuck in. They have a killer cafeteria, which is really more like a food court. It's crazy expensive, but after 10 days here I'm pretty sure I've tried everything. There's only one problem......they have the best potatoes and desserts! I'm not really sure how many times I've had mashed potatoes and gravy or cheesy potatoes and I know I've had at least one gormet dessert each day. We have to go home soon or I'm going to weigh 300 pounds!

M is slated for surgery tomorrow morning. If all goes perfectly, she'll be discharged after her antibiotic course is completed on Saturday. Keep your fingers crossed for us.

Pictures

I'm home today for a couple more hours. E is napping so I thought instead of yet another picture-less post, I'd give you a little sampling of our holiday. M continues to maintain. She's happy and comfortable, eating well, tolerating her medications. We're hoping for surgery next week if things continue to go well.

Happy New Year Everyone!

Best buddies (until Cash demolished the gingerbread train).

The gingerbread train about 30 minutes before it was demolished by Cash.

M wasn't having any part of Santa. E asked for.....letters and numbers!

Yes, she always looks this surprised!

Christmas Eve 2009.

Day 1 - before the Hickman.

That's my girl - always making the best of a difficult situation.

Have you ever seen such an angelic face?
My crazy kiddos!