Saturday, February 27, 2010

Bring on Spring

I HATE winter. The snow, the cold, that salt covering my car and the coats,I HATE it all. I long for spring, green grass, bulbs blooming and the beginning of playing outside with the kids but most of all the bloom bulbs. Tulips are my absolute favorite. I love their color, their shape and their simplicity. Much to my surprise each of my peanuts got me a pot of planted tulips for valentines day. I have enjoyed them over the last few weeks and was even more surprised when our dinner guests brought me a bunch of perfectly white tulips. Ahh...a little slice of spring in the dead of winter. Perfect.





Wednesday, February 24, 2010

Our decision, Part 2

Let me bring things back a bit. Josh and I had both always attended the same church, I started going there when I was very young and Josh started going in middle school. I know, speaking for myself, that I never questioned my purpose there or looked for another church. I invested time there, had deep relationships there and I called it my church home. So when Josh and I got married and moved an hour away we tried to continue to attend Sunday service there. It didn't take us to long to realize it was to hard to continue to attend and not be more involved like we had been. So we began to pray and look for a new church home. This was both of ours first time experiencing this process, and it was a process. It took us a good year and a half of trying many churches, before we felt "at home." Even after we had found our new home, it took another year to get truly connected and involved in the body. I remember my first evening worshiping with the 20's group. Josh had to work late and I went alone, knowing not a single person. That night, God began to plant the seeds. In the weeks that followed we began to make friends and open our home to movie nights, cook outs and game nights. Around the same time Josh and I began the process to become foster parents. We were asked to speak at the 20's group about our desire and call to minister to children who had been beaten, neglected and abused. I like to think that our talk resonated in the hearts of all those listening but we will never know who it touched.

There was a couple who helped lead this 20's group, they were a little older than us and had 2 adorable little girls. We would soon learn that their oldest daughter had Down syndrome. We fell in love with her and her sister (their mom and dad were pretty dang cool too!). A few weeks after our foster care talk, they came to us explaining a situation they had been presented with and praying about. It was the heart breaking story of a little boy in the foster care system. He was born 3 months early, weighed only 3 pounds and had a whole host of medical issues including a hole in his heart. He also had Down syndrome. They were torn, they wanted this little infant to come live with them but they didn't feel God was leading them to it. So they asked us to pray and pray we did. A few weeks later they came back to talk to us and what they told us would change our lives forever.

Some of you may know how this part of they story ends, others may still be left hanging on the edge of their seat.

Yes, this sweet little boy Im talking about is our Malachi. Our amazing gift from God. The process of getting Malachi into our arms was not easy, there was paperwork, medical trainings, meetings, home visits, background checks and many weekend visits to snuggle with Malachi while he waited for the state to process our paperwork. He was in a group home for medically complex children, although he was well taken care of, it was nothing compared to home, our home. When I think back now, I can't help but relate it to our time here on earth. We strive to make our life comfortable, seeking for more things. We can't fathom anything better, because this is all we have known. Malachi had no idea that when he came come his life would be better. We also don't know what it will be like when we go home, if we knew what was behind those pearly gates would we try harder to follow Christ? Would we seek less stuff here on earth? Would we cry out for forgiveness more? I know I would.

So why do Josh and I believe adoption is so important? Anyone can say "abortion is wrong." This statement we believe is true, but for us, it's some much more than that. How can we Christians say that we are pro-life while we picket outside of abortion clinics? All the while children are dyeing in their own pee in a country far away. Are we picketing outside the orphanages? What about children with special needs? Are we educating the world about the possibilities and abilities of those with Down syndrome? Are we willing to step up and adopt children whom have been abandoned? It's so much more than a decision to be pro-life, it's more than walking outside of a building, chanting and mocking those working inside. It's all about God. God's desire for us to adopt, just like He has adopted us. It's all about going and doing rather than just pointing a finger.

Not all are called to adopt, but all of us are called to care.

We now have 2 adopted children. Both have Down syndrome. And I couldn't be more proud of them. And I couldn't be more thankful that Josh and I chose to follow God's call.

Tuesday, February 23, 2010

Our decision

I personally know many of you who follow our blog. Some of you are family, others are close friends. Then there are those of you whom I have never met but have followed your family's often praying for you, trying to encourage you and celebrating with you. I am so blessed to be a part of a community, whether I have seen you in person or just in a picture, where we all genuinely care about each other. This group of people help encourage me, inspire me, challenge me and teach me to be a better friend, wife, daughter and mom. I often wish I could gather you all in one place and thank you, from the bottom of my heart, for everything. I wish I could give you even a fraction of what you have given to me but I know that there is nothing tangible to be given. Nothing here on earth is worthy enough or carries enough wealth. But God has so graciously put you all in my life and I am beyond thankful.

I was recently given a book called Adopted For life written by Russell Moore. Reading this book has made me think about adoption but not in the tangible form, but rather the adoption of me by Christ. I have been a Christian for a long time, and although my family did not raise me that way, they have always been supportive of it. As I was reading chapter 2 last night it got me thinking about my adoption (not in the worldly terms) and the adoption of my sweet boys. So I thought I would share with you Josh and I's call to adoption any why we feel, as Christians, this is something we all must be invested in.

Let me start off by saying adoption was NEVER our second choice. In today's society adoption is usually the result of infertility issues. After trying for some time, with no success, most couples seek adoption. So often people just assume Josh and I can not get pregnant and that we sought out adoption as a second choice. This is simply wrong. Josh and I have always wanted adoption to be our first choice. Let me be perfectly clear that I do not judge others who have adopted due to infertility, adoption is a beautiful thing regardless of how one comes to that decision, it was just simply our first choice.

You all know that our boys both have Down syndrome. Adopting children with special needs was never our desire. God had put me in a new job working with adults with disabilities. I fell in love and began to pray for each person I worked with daily. This was my first one on one experience with disabled people and man were my eyes opened. I saw enormous potential, loving hearts, forgiving minds and a group of people the world expected nothing of. This broke my heart. I began to pray that God would soften my heart. Little did we know that this was the beginning of something so much bigger.


This is going to have to be finished tomorrow. I have 2 little boys who need their mommy!

Monday, February 22, 2010

March it will be

I just got off the phone with Dr. V from Children's Memorial Hospital in Chicago. Dr. V met with all the cardiac surgeons, doctors and nurse practitioners today, they are all in agreement, Eli's corrective heart surgery will need to be done sooner rather than later. We will be trying to get together with Dr. B later this week to go over the plan and get an exact date! Dr. V said that Eli's last echo showed narrowing of the pulmonary arteries, so they want another echo of that so they can get a better look. They didn't seem to concerned about it.

I would be lieing if I said I wasn't nervous. Malachi's recovery was rough and long. Im not sure I can do another 3 1/2 week stay in the hospital, or seeing my child being cardio-verted 5 times or waiting 5 days before I can hold my baby. But I will suck it up and trudge forward know that I don't have to carry this worry so I'm giving it all to God. He got us through last time, He will do it again this time! I am so ready to get this over with!

On a  happier note we got Malachi smo's on sat. Im a little worried about the fit, i think they may be to big. Our physical therapist comes on Wed, she wants to see the before I go back in. Shes the expert, right? Malachi's feeding has gotten much better to. He is now eating stage 3 baby foods like a champ! He also ate a few of those yogurt melts today with no issues! I can't wait till he can eat table food!

I am still amazed at how strong Eli is! He is just 3 months old and can sit in a bumbo seat, Malachi was at least 6 months before he could hold his head up. Eli is only fed through the NG tube at night. We are moving in the right direction!!

Thursday, February 18, 2010

Which way will we go?

I am torn. WE are torn. And we don't know what to do. Here is the situation, as simple as I can possible make it.
  • Eli needs open heart surgery.
  • He needs it sooner rather than later.
  • Eli is not in heart failure but has severe pulmonary hypertension.
  • Eli is 3 months old and just reached the 8lb mark.
Now to where thing get tricky. Originally were were going to have Eli's heart surgery at The Heart Institute in Hope Children's hospital. Dr. Illbawi was going to be the skilled surgeon going into Eli's little heart and repairing it. The date was still unknown and there have been very little talk from our cardiologist about it.

Josh and I have both been paying out ideal situations in our minds as far as when surgery would be and how we could make it work. We would love for it to be done while Josh is off for spring break at the end of March. Then we could stay as a family at the Ronald McDonald house and take turns spending time at the hospital with Eli. Malachi would be with us as the house, we would be together and Eli would have equal time with his mom and dad. Ah, this would be the perfect situation. Realistic? Probably not. 

However, I got a phone call from the Cardiologist at Children's Memorial Hospital wanting to discuss Eli and our options as far as where to have the surgery. After talking to her for over an hour on the phone, I was even ore confused than ever. They seem willing to work with us on getting a date (most likely over spring break) and agreed with me that it needed to be done sooner rather than later. They arranged to have a messenger drive out to our cardiologist (about 2 hours away) to get Eli's records. This way they can discuss him at their meeting on Monday and make their decision on what should be done. Dr. V told me she would call me late Monday night and let me know what they thought. She then gave me her personal cell number and told me to call with ANY questions. I  have, twice. After they meet we get to set up a time to go in and speak with the cardiac surgeon and a nurse, go on a tour and ask any and all of our questions. Did I mention Children's Memorial is ranked 12th in the nation for Cardiac surgery? 

What do we do? Where do we go? Which man do we want to do the repair? How do we decide? I don't like this one bit and wish someone would just give me an answer!

Tuesday, February 16, 2010

Some may say...

One of Malachi's many nicknames is Peewee. Born a 3lbs, its a fitting name. Fast forward 19 months later. Malachi may still have stubby arms and legs but he is thick with a trunk of a tree!! My favorite thing is when he wraps those stubby arms around my neck and gives me a squeeze and plants a kiss of my cheek. It's that personality that I LOVE.

Some may say Malachi is small but he has a BIG personality.

We went in for his follow up ENT/Audiology appointment today. It went wonderful and we finally got a good hearing test. He can hear within the normal limits!!! We are so very thankful for this, the last thing he needed was a hearing impairment! While at the appointment, he wooed every nurse. Thankfully Malachi has a sweet smile to hide the devilish behaviors. While "talking" to a nurse, he riped Josh's glasses off and snapped them in half.Ugh.

Some may say Malachi is sweet but he is as stubborn as they come!

Right now Malachi is resting his sweet little (and I mean little) head on his new big boy pillow in his bed sleeping. Reverberating throat sounds are coming through the monitor alone with his African dreamland music.  Eli just finished his bottle and is sleeping, quietly (this is a change for us as Malachi has always snored like a 300lbs man). I am eating ritz crackers, drinking tea and watching the Olympics. Josh is working late at school and I am enjoying the quiet that has settled over our house. This is the life...

Some may say that I am blessed and I could not agree more!!

Sunday, February 14, 2010

Say cheese

 
My sweet little big boy looks lovely in purple.

But he also looks handsome in navy.


But I think i prefer him in purple, with a tie, sweater vest and argyle socks!

My little peanut, so pale and fair. 
What about Navy? I think it's my favorite! (sorry it sideways cant figure out how to switch it)
My stylish boys are to cute for words!

Friday, February 12, 2010

Poundage

8lbs, 8lbs, lets say it again, 8lbs, 8lbs!! All you other heart moms out there understand the significance of this beloved number. 8lbs is the goal and Eli reached it. Eli's cardiac surgeon wants all of his sweet little fighters to weigh at least 8lbs before he will enter and work is magic. I've made a call to Dr. F and shared the good news, now we wait and continue to try and increase the poundage on our 8 pounder.

Thursday, February 11, 2010

At it again

Houdini has done it again!! Eli has pulled his NG tube out 3 times in the past 24 hours. I (yes me) have re-inserted it each time successfully but I am getting tired of it. So, Houdini, please hear my cry leave the tube in OR drink you milk from bottle. I would prefer the latter of the two, and just think, no tube means no mitts. Your little hands could be free to explore all the wondrous textures around you, and they could even sneak into the sweet little mouth of yours. A tape free face, mitt free hands and the joys of fulfilling your hunger by sipping sweet nectar from a bottle...it's almost to good to be true....

Wednesday, February 10, 2010

just some facts

Rahm Emanual

*48 years old, Married with 3 children

*Studied Ballet in High School and was offered a scholarship to the Joffrey Ballet, he declined. 
*Has a masters degree from Northwestern University in speech.

*As a teenager, he severed his right middle finger slicing meat at Arby's and went swimming in Lake Michigan before getting stitches. After the wound became severly infected, Emanuel had the top of his finger amputated and spent six weeks recovering.

*Has served in the White House before, as a senior advisor to Bill Clinton. On Emanuel's 38th birthday, Clinton gave him a photo with the following tongue-in-cheek inscription: "Now Mr. President, how many times do I have to tell you, say it this way?" Clinton wrote. "And, by the way, wish me a happy birthday. Always gently, Rahm. 11/29/97."

*Before working in the Clinton White House, Emanuel worked for Chicago Mayor Richard M. Daley. He was first elected to Congress in 2002, and is the fourth-highest ranking House Democrat.

*In between his stints in Washington, Emanuel got rich working as an investment banker. He once sat on the board of Freddie Mac and recuses himself from any Congressional votes on the mortgage giant.

* Orchestrated the Democratic takeover of the House in 2006 and is known among colleagues as "Rahmbo."

* A devout Jew, Emanuel was so intent on negotiating the passage of Congress's $700 billion-bailout bill that he got a special waiver from his rabbi to work through Rosh Hashanah.

* Has been known to send out cheesecakes from Eli's Bakery in Chicago to campaign donors and the many Democratic candidates he has recruited over the years. Once, when a pollster made him angry, Emanuel sent him a dead fish.


 "Chicago politician and chairman of the House Democratic Caucus has been described as a profane, hyperactive attack dog — and his supporters argue that this steamrolling personality would make him an effective, formidable gatekeeper to the Oval Office."


It seems to me, with a masters degree in speech, he should be able to come up with more intelligent ways to express his displeasure with his staff than "F***ing Retard." Just a though. His words hurt thousands of people who have, are or know a person with a mental disability. But he apologized, right? And that makes everything better. If you ask me, he should have his Masters degree in speech taken away, obviously he is not capable of communicating effectively and still relies on his 6th grade put downs.  I am embarrassed to say that he comes from my state and I am even more embarrassed that someone like this is in the White house. 

Sunday, February 7, 2010

Our little worm

Wiggle, Wiggle Wiggle. That is all Eli likes to do and I think he learned that from his brother.
Malachi is a VERY curious big brother and is still trying to figure out why Eli can look at books with him.
Eli is showing more and more personality. He is going to be a shy little boy, who is perfectly happy entertaining himself.
And who can resist a tube free face? Speaking of tubes, Eli is doing much better at taking the bottle and usually only needs the tube a night!!We are still working on it, but its coming along!

Now I will leave you to enjoy the super bowl. I will be updating my calander and delegating Josh a few jobs to handle from here on out.

Wednesday, February 3, 2010

Eli's trip to the Cardiologist

     Today was Eli's first trip to visit Dr. F. We were very anxious about this appointment, as we knew very little about Eli's heart condition. I love Dr. F, he is a firm believer in getting children on the minimal amount of heart meds possible, first thing he did was lower his lasix from .5ml's to .35mls. Eli has been having issues with low sodium and his pediatrician wanted to put him on sodium, Dr. F said "lets just lower his lasix's and see how that works before we put him on another med. That is why I LOVE Dr. F, he doesn't fix side effects of other meds with more meds. He also said our little Eli has no signs of heart failure, but he does have pulmonary hypertension which means surgery will happen at 4 months rather than 6 months. We go back in a month for another echo, ekg and office visit with Dr. F, we will chat about surgery and where we want to have it done at.

      Malachi woke up with a NASTY rash all over his torso. I took him to the doc today thinking it was chicken pox, much to my surprise, it was an allergic reaction to something. I thought about what had changed in one night and realized Malachi had pasta primivera for dinner. He has never had it, so something in that little jar of food caused thousands of tiny bumps all over my baby's skin. He is now on benedryl. Thank God it was not chicken pox!

     Now I am heading to bed, I have seriously been going all day. Good night all!