Sunday, February 28, 2010

Making Progress

Micah has been doing well. Over the last two days we have worked him up to the feeding level he needs to be at. He's been at this level for 24 hours. Not only have we done this but it's happened without any complications. His body has been able to keep up with the volume and we have not seen any wretching (dry heaving). We are so thankful this progress has been uneventful. Our next plan is to try him off the feeds for 4 hours and on for 20 hours. While he is off the feeds we will feed him by bottle to keep up his skills. Hopefully as time goes we will be able to have him off for 12 hours during the day. Basically, we will have X amount of calories we need to get in him in a day. Whenever we do that is based on his tolerance for the volume needed and balanced with the time he is off the tube feeding.

We have also learned how to vent or burp him through his tube. At first it's weird and kind of gross but really how much easier than waiting for gas to pass. I know there have been countless times with our girls it would of been nice to just "vent" them to eliminate that factor as to why they were fussing and screaming. We have a lot to learn, absorb and apply about the g-tube in a short period of time. As I've said that I'm looking forward to our new normal whatever that may be...this is the first definite new normal item. We can count on always having the g-tube as a part of our lives. There is a chance he will someday be able to eat on his own, we are just a long way from there at this moment.

In the last couple of days several of the minor annoyances have been eliminated as well. A couple of nights ago Micah's sixth IV got kinked and went bad. A nurse worked very hard to save it and then it fell apart. Little did we know this would work in our favor. For Micah to have the IV with nothing going in it continuously they have to flush it every 4 hours to keep it open. This is how we knew it went bad, it would not flush. When the IV would flush it was very uncomfortable for Micah. At this point the only reason he had it was to give him his morphine. So we discussed our options and decided to stop the morphine, keep up on the Tylenol and have his Valium changed to a form that can go though the tube. Once this was in place we were all good. God's perfect timing is also in the IV's going bad. Awesome!

I'm also very excited that the doctor wrote orders for his vitals to be checked by 10pm and then not again until morning! This means there is no reason for him to get woken up in the middle of the night. This also translates into us not getting disturbed as well. What a difference a good nights rest makes.

The best thing of all is that we are getting our happy boy back and he's even happier than before. He is so hilarious! If you have met him you have probably seen his cute smile, his bright eyes and heard his belly laughs and giggles. He has come through this hospitalization even better in so many ways. He loves to play and interact. He's also shown great interest in music. When we have a CD going he will listen closely and sometimes he will start babbling with it as well. It warms my heart to see him thriving. It's amazing what a full tummy can do along with a good nights restand of course great medical care.

We are scheduled to go home early Tuesday morning. We have a 10am appointment with Home Health Care to get his gear set up. Your continued prayers are coveted as we are in the home stretch of our stay here and as we transition home.

Friday, February 26, 2010

Let's get off the "snack plan"

Now that we are post op our goals have shifted and we are working....pushing to do whatever it takes to get out of the hospital. Micah has been doing well overall. He has been resting for good amounts of time and he has been more content while awake. There are still periods of pain and those are being managed as best as possible. We are hoping he can replace more of his mophine and valium with tylenol soon. He has been a real trouper. Tonight he was taken off the Oxygen monitor and the IV food so that is three pumps total. Now he only has one pump and it's the same one he will be coming home with. I think this is going to make a huge difference in the quality of rest he can get. Being on four pumps all doing something different for different amounts of time and with a different alarms can be taxing for all of us. I'm believing for a peaceful night tonight.

Our current focus is his feeding. The length of our stay is completely based on how he tolerates his food. The formula he is on comes straight from a pharmaceutical company, it is as basic as it comes and is basically digested for him. His body is not having to work very hard to digest it. Complications with food tolerance will probably be based on the volume he can handle. He is on a continuous pump of formula 24 hours a day. For most of today we have been asking whoever is assigned to us about increasing his feeds. Micah was on less than half of what his goal is. Several of the doctors and the dietician all were saying "Ya, let's increase his feeds" but no one was actually writing any orders to change anything. We were seeing this pattern and when Randy talked to the next doctor he said,"Let's get off the snack plan. He can handle it, let's get going."  The primary hospitalist doctor then wrote the orders and we began to make progress. As of this moment he is tolerating almost half of what the goal is along with 1 oz. bottles that we can give him at our discretion. They are increasing the feeds slowly every three hours to see how he does. We are also watching to make sure he does not begin to dry heave. This is a sign that he is not tolerating the volume of food. Since he has had a fundoplication surgery this does not allow Micah to spit up or throw up. Dry heaving can also result in damaging the surgery sights and even pulling out the fundoplication surgery. So far so good. Now we believe, pray and wait it out.

As we spoke with the doctor, we learned they are hoping to send us home Monday or Tuesday. This news was a little discouraging. We are all very tired of the hospital routine. We miss being together as a family unit. The every other night at the hospital is wearing on Randy and I. The hospital food is lacking and take-out is tiring...both are expensive. We miss cooked vegetables. The girls are well taken care of by Mama, Papa and Aunties but are still missing our routines. We are all craving our new normal whatever that is going to look like. Now we have to believe that God's timing is perfect in all of this. We've seen the blessing of having Micah in a safe stable place during the constrution, next is the water heater I guess, yes...the water heater is going out. Monday morning we have a company coming out to see what's going on. Thank goodness for a home warranty. So, we are continuing to remind ourselves of God's faithfulness when we begin to get weary.

Here are some things we are thankful for:
-A Children's Hospital so close to home.
-Incredible hospital staff who have been wonderful to us.
-Family and friends to help during this time with a variety of things.
-Randy being able to take this time off.
-Ice Tea, Chocolate, Chik-fil-A, In-n-Out
-Wireless Internet and a laptop my brother recently "frankensteined" together for us.
-Sound proofing upgrade to our home.
-Pain medications
-"Almost's" because that means something bad did not actually happen. Such as Micah "almost" pulled out his IV (a few days ago).
-A Home Warranty to fix our water heater.
-Facebook and blogging
-The Olympics and Cable
-Crocheting, Knitting and Knifty Knitting
-Most of all the prayers that span the globe for Micah and our family.

Thursday, February 25, 2010

First Day-Post Op

Last night Micah did as well as he probably could of. Babies are a mystery to begin with and Micah has a few more factors that contribute to the mystery. Most of the fussing he is doing subsides easily with some reassurace. There are the times he is clearly in pain as well. The nurses have been very good about working to keep him comfortable. He is on a regular dose of pain meds that are working pretty well. It also appears that he is having pain from gas in his stomach from surgery and the fussing he has done.

There's also the basic fact that Micah does not like to be messed with. If he wants to sleep then he does not want to be disturbed. Obviously he is adapting to hospital life. Once the doctors and nurses stop touching him he usually calms down goes to sleep. As for all the noises of a hospital.That's another story. The doctor agreed that purple chickens can sing (Thank you Honey...gee I can't even go to the bathroom) to hook him up to the heart monitor sensors but to not plug them in unless he needs monitoring. The heart monitor constantly makes noise that would startle him over and over. So far so good. His oxygen levels have been fine so no need for the heart monitor. This leaves us with only 3 pumps that are fairly predictable as to when they will go off and we have learned how to silence them. Last night, was also the loudest night I have heard in the hospital. They admitted 9 new kids, which means 9 new IV placements and 9 new blood draws and many sets of vitals, etc. We heard A LOT of crying, yelling and screaming. Micah chimed in on occasion and I prayed A LOT for those traumatized kids and their adults. 

Today has been much more calm. Micah is resting better. He has tolerated the Pedialyte so they will begin his formula soon. I'm sure he will feel better having some food in his tummy. We are hanging out waiting to learn whatever we need to and praying we will get out of here by Sunday if not earlier.

As new info comes or things change we will update you.   

Wednesday, February 24, 2010

Surgery and Recovery Update

Today at 12:30pm we were escorted to the surgery prep room. Micah got to ride in a clear bassinet buggy and thoroughly enjoyed the ride. We were met by our friend Melanie who works in the surgery department doing the intake and she was able to be our nurse. It's so comforting to be surrounded by friends. We've also had regular visits from our friend, Sean, who is the hospital teacher. It's truly been a blessing. So once we signed paperwork and met with the nurse and anesthesiologist Micah was good to go. At 1:00pm we parted ways and left him in the hands of the surgery team. The surgery team that you all, from around the world, had and were praying for. We were really relaxed about what was ahead and confident in the seasoned team working on Micah.

Randy and I took advantage of the time to go grab lunch. We were told the surgery should take 1-1/2 hours so we had plenty of time. Regardless, we ate and went right to the waiting room. At 2:15pm Randy said, "They will be finishing up soon, hopefully." and as we looked up the doctor walked in the room and was standing in front of us. It was actually pretty surprising and startled me from my crocheting. He proceeded to tell us that everything went well without any complications. They were also able to take the breathing tube out! Yay! There would be NO need for him to go to the NICU for a short recovery. Now he was just in the regular recovery and we had to wait for him to wake up.

We hung out, chatted with the people near us and got another visit from a dear friend. Our friend does not work here although she could...she was here to have her son's arm set in a cast. It was nice to see another friendly face. After just a few minutes a nurse came out and called for the family of Sidamo (Legal name). He then asked, "How do you say it." and we said, "Micah" which really confused him until we explained. We were very excited that it was only 1-1/2 hours in recovery. When we got to Micah he was on an adult sized gurney waiting by an elevator very calm. When he heard our voices it's like he immediately had to tell us what had just happened to him. He began fussing and I could only imagine what he was saying to us. He quickly calmed down and enjoyed the ride to his room.

Once we were settled he pretty much slept in my arms for an 1-1/2 hours. When the doctor came in to check on us he was showing clear signs of being in pain. She checked his chart and we were able to begin morphine. Once this hit his system he was least for a little bit. We layed him in his bed hoping he could settle in and rest. He then began to startle every 2-4 minutes. Micah is a VERY sensitive little guy, mostly when he is trying to fall to sleep. He is startled by his own snorting along with any other noise that is not ocean waves. This does not mix well with hospital life. 

At this moment, he is resting a little better. We are in the middle of shift change and soon he will get his next dose of morphine. They are also going to secure his IV, hook him up to a heart monitor (just in case) and swaddle him up. Hopefully this will help him relax and get some good sleep. Maybe I will get some too.

Later tonight, he will be started on a pump of Pedialyte to see how he does. If all goes well, he will begin formula tomorrow sometime.

Prayer Requests:
-For pain management. Micah needs some good rest and he needs to stay as calm as possible. Staying calm will help him burn less calories (he needs every one of them) and keep him from injuring his surgery site or IV in his hand.

-That Micah will be able to handle the Pedialyte and not go into wrenching pain. The surgery makes it impossible for him to throw up so there is not much we can do for him if this happens.

-For Randy and I to remain calm if Micah starts to panic in pain. That's the best thing we can do for him and it will be the hardest. Our nurse's son had this same surgery and she was giving us this advice. With this surgery this kind of pain is common and something we need to be prepared for.

-For a peaceful night of sleep for him and for the rest of us. That he will sleep deep and not startle as much or as severe.

-For a quick recovery and for us to absorb all the info on how to care for him at home. We would like to go home by Sunday.

We are so grateful for everyone of you! The prayers, encouragement and support has been so needed and appreciated. Thank you for sharing this journey with us! 


Tuesday, February 23, 2010

Multitude of updates

The last couple of days have been productive and quieter at the same time. Overall, Micah has mellowed. It's amazing what happens when you feed a hungry baby. Here are the updates on the different tests and issues.

Upper GI-He and Randy were whisked away early Monday morning with little notice. We are thankful for this since this means he will be able to eat earlier in the day again. Micah did well, they put the barium through his nose tube so he didn't have to drink it, which is great, and they also removed most of it from his stomach the same way. The results showed that the anatomy of his esophagus is normal. There is some reflux and he is a candidate for a fundoplication surgery. This test was also the key to getting a surgery date for the G-tube placement as well.

MRI-We learned that in general the results were pretty similar to those of the CT scan we had from Ethiopia. No big surprises. There is definitely a large cyst and area where brain did not develop. As far as what this all means exactly, we don't know. The various doctors are most likely going to review the results and will either consult with us in the next few days or we will have follow up appointments.

Surgery Date-Tomorrow, Wednesday, Micah will be having a g-tube placement and fundoplication surgery. The g-tube is to get adequate food in him and the fundo is to help it stay in. The surgery will happen at 12:30pm and will last at least a couple of hours. Recovery is usually pretty mild for tiny babies and not as traumatic or painful as it is for adults. We are praying we can be home by Sunday.

IV- To this point Micah has had 5 IV placements due to a variety of reasons from pulling out, going bad, veins being blown, etc. Please pray his IV and veins hold up. Right now his IV is in his foot. This is awesome for being able to cuddle with him without being clocked by his little propellor arm (they put a splint on it and he spends most of his time waving it in circles).  The down side of the foot IV is it's easier for him to kick and rub it with the other foot. We are constantly guarding it. IF something were to happen to this one they would most likely have to place a more permanent type that is more secure.

Feeding-Micah has been able to keep his food in better. They put him on a new medication that seems to be helping. The nose tube feeding has been able to be consistent and seems to be processing through okay. He is also taking food by bottle pretty well too when he's hungry enough to do so.

Sleeping-Last night, Monday, was challenging. Micah has been fussing like he's tired and then not sleeping. We started working with him to sleep at 7:30pm since he was acting tired. he did not fall asleep util 12:45am. We, me and nursing staff, tried to be proactive and prepare what we needed to so we could minimize disruptions. It felt like we altered the natural flow of hospital life and all heck broke loose instead. No matter what we, me and nursing staff did, something was determined to wake Micah up. Whether it be the pumps beeping (he has 3), the clock ticking, housekeeping dragging a loud garbage bag through a quiet room at 11pm and not collecting anything, poop happening, me sneezing, doors creaking, you name felt like it was happening. He is very sensitive while falling asleep. Once he is asleep he's out and will sleep well. Today Randy has identified some patterns in his behaviors and hopefully we will be able to help him be more successful in sleeping. Please pray for good sleep tonight for Micah so he will be strong for surgery. Also for the rest of the family so we can stay rested and healthy.

Construction-Today our windows were completed. They are beautiful! This is so exciting and our house already feels better. Now we have another few days of work to be done over the next week to finish the sound proofing. We can move stuff back to it's homes and settle in a little more now. What a blessing this is in the midst of craziness. Micah will have a much more comfortable room to come home too. Once he's home we will work on getting new window coverings, until then, sheets it is. Pray we can focus on getting the house back in order, while we are not at the hospital.

Additional Prayer Requests:

-That Randy's leave from work will work out the way we think it will. He has been juggling the State, the County, family bonding, medical leave, vacation time, and comp time trying to coordinate his leave to our best interests. He's had lots of wait time on the phone. Honestly, we've talked about so many options I don't even know exactly what the plan is and for how long. I know God has it all lined up so I'm just going with the flow and believing it will all work out.

-Health for all of our family and those we come in contact with.

-For God's plan to work through Micah's story and our family in every way it was intended to and that all the glory go to God.

-Believing for healing for Micah from the top of his curls to the tips of his toes.

I will update tomorrow as soon as we know anything! Thank you for your prayers and support!

Sunday, February 21, 2010

GI and IV Issues

What a week this has been. Yesterday Micah had a great day at least from about 11am to 9pm. He had his IV moved to his foot on Friday night so that made it easier to cuddle him closely. He was smiling and talking again. It was a very enjoyable day with him.When night time came things took a bit of a turn and we learned a little more. Over the last 36 hours we are seeing patterns in Micah's behaviors in regards to his eating. He was started on a new formula, it's a formula that is the most gentle and easy to digest that they have. If he were to have allergies to foods, and be intolerant to all other formulas this is the end of the road choice. They chose to put him on it to see what happens. If things improve then that avoids some testing possibly. We had nothing to lose by trying it and why wait if we don't have to. Once he began it on Friday night we did see a reduction in fussing and painful behaviors. He's also being fed a few different ways at the moment. He is getting IV nutrients, he is getting formula through the nose tube 24 hours a day at a slow rate and then we feed him by bottle at our discretion.  We are doing the 24 hour a day slow feed to help him digest better, hopefully, and to prevent refluxing, hopefully. His pattern of behavior implied that when he was fed by nose tube only, he was refluxing and then there was nothing to wash it down so he had acid burning his esophagus. This is why we do the tube and bottle at the same time.

What's been happening is that approximately every 12-14 hours, Saturday morning and night, since the new formula he has been vomiting an amount that appears to be all he had previously been pumped into him. These events are quite traumatic and gross. The food is not appearing to even be digested. Sunday morning we were waiting for the next episode, watching the pattern and being careful how much we fed him by bottle. He has only had large spit up so far today. We talked with the GI doctor and we have now changed his feeding to be 10 hours on and 2 hours off to give his stomach and intestines time to process. It definitely appears his stomach/intestines are not emptying and processing correctly.

As far as the IV issues his IV's have gone bad after 24 hours the last 2 days. Saturday night his IV was checked and it was fine, then 30 minutes later it went bad. We all caught on quickly and thankfully there was no muscle damage. His veins are becoming more difficult to find and then once they are found the IV is not working once there. He could very well be on his way to a more secure, more permanent type of IV.

We are all waiting for the MRI results as well. We should get those on Monday. Since it's the weekend nothing would happen with them anyway so we are not worried about it. We are bracing ourselves for the information overload on Monday once all the doctors get there hands on the results.

OH, one more piece to the puzzle. While we have been at the hospital he has cut another tooth, this one is on the top. So let's throw teething into the mix and really be mixed up. Poor little guy has so many things going on.

Please pray:

-For the Upper GI on Monday. That they accurately see what they need to.
Also pray they tack on a "Follow through study" since he's eating the gunk for them anyway. With this they X-ray his stomach every couple of hours after the test to see where the gunk is going and what it's doing.

-For a surgery date that is soon enough for us to just stay in the hospital. At this point they can not send him home because he can't handle even 1/2 of the minimum they want for him.

-For his veins to strengthen and the IV to remain working.

-For comfort and soothing for Micah. He is getting restless and has been clawing at the nose tube taped to his face. He also has a really hard time falling asleep because he can not be swaddled as tight as necessary for good sleep for him.

-For endurance for our family. This has been a long week with another one ahead of us. We all miss being able to be together.

-For construction to go smoothly this week as well as returning our home to a more normal state. The girls asked me this afternoon if we were moving. Sure does feel like it between shifts at the hospital, the house torn apart and bringing thing to and from the hospital.

-For the girls to have an awesome week inspite of the craziness.

We will keep you all updated.

Thank you for your prayers and support!

Saturday, February 20, 2010

Construction begins Tuesday

In our last post I wrote about having to tear our house apart for construction on Tuesday. Here's what's going on. Our home is in the flight path of the airport. In order for our airport to become international they have to sound proof houses within a certain area. We are in that area. Our home has been on a list for 6-1/2 years and as funding is available they work down the list doing blocks of about 60 houses at a time. We have been working through the final stages of the process for about a year and a half. Three weeks ago we got the call that our windows are in and they want to schedule installation. We knew this was coming at some point before March. Now when we got this call my first thoughts were 'after 6-1/2 years, NOW...we have a newly adopted baby from across the world with health issues, we have to move all furniture 3-4 feet away from every window, take down all window fixtures, remove everything from our wall and secure all fragile knick knacks. Nice. I can hardly go to the bathroom or make dinner in a day.' this is overwhelming. Then we sucked it up, believed God knew what He was doing and scheduled the first set of dates. These dates fell on President's weekend. They soon figured out the holiday was going to be a problem. Thankfully they had to reschedule because that is the day we were admitted to the hospital. Our dates were now moved to this Tuesday and Wednesday. This seems like a bit much considering we are still in the hospital, however, it's actually more perfect than we could of ever planned.

Here's God's perfect timing:
-Micah will be in a safe place, where it is easy for us to care for. If we weren't here we would be moving him to my parents or he would be with me at the house while the craziness is going on.
-Randy will be off work so he can be available to work with the construction company while I can be with Micah. Randy can also get the girls to school.
-Micah will come home to a more comfortable room.
-We will be discharged from the hospital with gear and home health care so now we don't have to set up at one location and move to another for construction.

The schedule:
-Monday Tuesday at 8am are window installation.
-Monday Tuesday night we can move stuff back.
-Tuesday Wednesday at 8am are door installation.
-The next week we have insulation blown and the final walk through.

Now in order for this to happen we could use some help. We are looking for some assistance with moving things around. Randy can move things to a certain extent but has to be careful due to hernias. My back can not handle moving heavy things. We have moved some things, taken down window treatments to a point and tried to tidy some things us. We just really need help with the final push of prepping. If you are available to help us on Sunday or Monday we would greatly appreciate it. We will also need some help on Monday night putting the big stuff back. If you are able to help please facebook us, email us or call us. We will figure out what the current need is and coordinate.

Our e-mails are:

Thank You so much!

Friday, February 19, 2010

Micah gets to eat!

Today....Friday.....Day 4....was the third day in a row where Micah has had to not eat after midnight. We are thankful for the resources to test Micah and figure him out. At the same time we are thinking, "He's here because he is not getting enough food in him, so let's starve him day after day?" We totally understand the need for the fasting it's just hard to do this three days in a row. It's difficult to see your childs best qualities disintegrate before your eyes and not be able to do anything about it. Overall, we have been very happy with the customer service aspect of our stay in regards to the nurses, doctors and specialists. The frustrating part is the time it takes to "process" the order from the doctor and the difficulty of coordinating the services to actually happen.

Today we finally got the MRI done, which required a HUGE amount of coordinating and scheduling. As we were waiting our turn it was taking a pretty long time, when a nurse came in and explained that the MRI machine had broken down and they had to fix and reboot it. We are thankful that it was able to be fixed and we only waited 1-1/2 hours instead of not getting it at all.

Yesterday, he had his scope of his breath way. This came back showing that there is an area that is under developed, which causes the noises he makes and can be a cause of his symptoms. We are waiting for more information before we consider any surgery options with this.

The next two day Micah actually gets to eat! Yay! Let's fatten him up! He is already much happier since being fed for the last 6 hours. This weekend should be smoother. We should also learn something from the MRI on Saturday. All the various doctors and specialists are waiting for this information. I'm sure come Monday we will be back to information overload once they all see the results.

Monday, he is having another test so he will be back to fasting for that. Hopefully, he will handle it better after the food all weekend. This should be the final test that requires fasting. Pray it's the last test! They are trying to minimize the fasting required believe it or not.

Prayer Request:
-Health for all who come in contact with Micah and our family. We've had a close call with Randy and I not feeling great at the same time. We pulled in all our family and friend resources and made it through. The thought of neither of us being able to be there was disturbing.

-For the kids at the hospital who do not have anyone there with them. We are blessed to be able to always have one of us there. There are many infants and kids who don't have anyone. I can see how if Micah were a bit less needy I would be adopting other kids while there. It's just not right to be alone...especially if you can't clearly communicate.

-For healing of Micah's body from the tip of the curls on his head to the souls of his feet.
If there is a deficiency we pray that God will supply
If there is a empty spot we pray it be filled
If there is under development we pray it grow 
If there is a miracle that we will make God's miraculous healing known to all.

-For wisdom and understanding for the those involved in his care, especially in regards to pain. There are several issues that could be causing Micah bouts of pain and we are all trying to chip away at the list to relieve this.

-For scheduling of procedures for this next week. We would like to avoid having to be released for a day or two to have to come back for another few days stay.

-For rest for Randy and I. We are alternating nights at the hospital.

-For us having to tear our house apart by Monday night for construction to be done this coming Tuesday and Wednesday. More on this tomorrow. It's another post all of it's own. God is funny and His timing is perfect.

-Whatever else you feel lead to pray for is welcomed.

Good Night!


We have now adjust our blog to be able to receive comments. Something along the way changed this and we never noticed. Now it's fixed and we look forward to hearing from you if you would like to comment. 

Thursday, February 18, 2010

What's your frame look like?

Throughout this journey we would like to keep you all updated and share how we are seeing God work in and through Micah and our family. If these were the only thing we shared it could look like things are progressing along fine and dandy. It's really all in how we frame it to you to be quite honest. I would like to be especially real and let you in on how we are framing it to ourselves and coping per se.

Today, Wednesday, has actually been quite intense and stressful and very horrible at times. To sum up our day he has had 3 different nasogastric tubes placed through his nose and into his stomach, he slept 1-1/2 hours of a 12 hour period and has had an intense and painful bout of reflux. Then throw in all the emotions, doctors, nurses, equipment, scheduling and sleep deprivation and you have a cocktail that can produce grumbling, complaining and sarcasm that is fierce.

Once again, to be completely honest I have typed several snappy smart sarcastic comments into my status on facebook only to delete them. Before I decide to share them I take a deep breath, pray and make a choice to honestly answer a question.

How am I going to frame this?

It's always easy to see the irritating and the difficult. These aspects of our situation are real and not easy. They are also not to be stuffed, however they are also not to be dwelled upon. If I continue to rehash the negative I'm going to be hospitalized for my own reflux coming back. Now, will we be perfect at this, absolutely not but we will do our best.

So what's my frame look like?

I'm working to frame our situation in a positive light as much as possible. When I want to slip into a slump of depressing and sarcastic comments and thoughts I am working to start reviewing the good. Framing the situation in the positive. What do we have to be thankful for?

To list a few, I am thankful for:

-My skills as a Behavior Analyst that help me observe Micah and see the patterns of what he's going through.

-Having reflux myself as an adult so I have first hand knowledge of what he is going through.

-Being familiar with the IV and feeding pumps due to what we experienced with Home Health Care for my mom just a couple months ago. (Bummer for my mom but she is now doing pretty good.)

I could go on for awhile and I will at a later date. Now it's super late and I need to sleep.

One more honest reality is that in a perfect world I would have a few scriptures to back this all up to be encouraging to us all.....ya, today I could barely go to the bathroom let alone focus on finding encouraging verses. We are in survival mode. I'm actually typing this to stay awake while a pump is finishing feeding Micah. So if you come across a good verse feel free to pass it on to us.

Now off to sleep til the blood draw person arrives at 4am or so.

Good Morning!

Wednesday, February 17, 2010

Bring it on!

Tuesday was a full day of everyone doing their exams and assessments to decide where to begin. Here's a rundown of the basics.

Micah was seen by:
The Occupational Therapist-twice
The Nutritionist
The Neurologist
The Gastro Intestinal Dr.
The Hospitalist-Dr. overseeing all his care while here
The Blood draw guy
and three visitors

All of these specialists made their initial recommendations and we are now waiting on an MRI to proceed. The MRI is complicated to schedule because the ENT needs to do an in depth scope of his esophagus to fully clear him for an MRI. This way they only have to put him under once. Hopefully this will work out this way.

Later in the evening they installed a feeding tube through his nose. This will be used to supplement what he takes by mouth. He then slept through the night and so did Randy.

Today, Wednesday, we are working out all the kinks in the feeding tube process. As he was being put back in bed the tube caught in the side of the bed and pulled out. No one was happy about this. They then put another one back in. When we went to feed him it took a VERY long time. They have now decided to put in a larger tube. This will be good for feeding but hard on Micah emotionally (and us too).

Pray for the MRI to get scheduled, the feeding to go smooth and the evening to be a peaceful one.

Tuesday, February 16, 2010

Our first day of staycation

Monday morning we were up early, showered, dressed, car packed and waiting for the call from our doctor by 8am. We were ready to get this show on the road and get him the help he needs. Before we knew it 9am was here and we were now anxiously waiting the call. The girls had a play date so we dropped them off with the cell phone near by. At 9:30 we got a we listened we were a bit discouraged. We were on a waiting list to be admitted, so much for an Urgent Admit for urgent issues. So we were now waiting for another call to go to the hospital. We regrouped and tried to not do anything that required a commitment in hopes that call would come soon. We went through our day trying to just get things done...dishes, laundry, picking up, resting and a fair amount of Wii time with the girls. Every time the phone rang the girls would ask if that was "the call".

By late afternoon, we were antsy. Due to RSV season the hospital is booked and there was a chance that we would have to wait til Tuesday. With dinner time approaching, Micah napping and a call pending it was time to fire up the oven and break out the frozen food for the dinner we had not planned to have at home. As frustrated as we were this was one of the best dinners our girls had eaten in a very long time. Our girls eat they just truly don't like the same food. They actually like opposite foods which can make it difficult to prepare a dinner. All this to say I was happy that everyone enjoyed a good dinner. Just as we were finishing up dinner and discussing the list of things we needed to do since we were still home, Randy was planning to go to work if we were still home on Tuesday morning.

The phone rang....
It was THE CALL!

We all went into high gear. The girls gathered their things, we gathered the last of ours and off we went! We dropped the girls off at the grandparents on the way and headed straight to the hospital.

We were admitted pretty quickly and taken to our room. We have a conveniently located room on a corner next to the nurses station. Our room also has a little extra space due to an equipment room that is attached. Once we were settled they came and did all the basics. The residents came in and collected all their information. Then the IV guys came and took him to the treatment room for his IV placement. Micah does not like to be held down for anything whether it is head measuring, temp taking or IV placement. He was MAD! The procedure went well and his left arm is now taken over by IV stuff. He's learning to adjust. He then fell asleep and we settled in as well. Our night was awesome! He slept from 11ish to 8ish this morning, which means we did as well. Woo Hoo!

We are now waiting as all the many tests, procedures, therapists and doctors are lined up. Micah is sleeping and we are trying to enjoy or forced staycation.

More will come later.

Sunday, February 14, 2010

For this child I have prayed

We have been quite busy in the last few weeks. Our little guy is such a blessing. He has managed to have everyone he comes in contact with wrapped around his little finger. His strongest qualities are in his social skills. Once he starts talking to you your heart will be won over as well. The combination of his cute tiny voice, baby belly laughs, BIG chocolate brown eyes, charming smiles and curly hair beginning to grow bring us such joy! We are so blessed.

When we began pursuing Micah we had been at a point where we had a heart for adoption and were waiting on God to show us which way to go. We had no idea what direction we may be going in. Our biggest concern was that whatever it was we would be obedient and not take a step without God's leading. We learned of Micah and began to pray for him to find his forever family to realized 7 weeks later that we were that family. Along the way we learned that Micah was going to have some special needs. The most pronounced issues was cerebral palsy along with some brain issues. God was working loud and clear in our adoption process and confirming every step of the way that we were meant to be his forever family. Our lives were never going to be the same. Our lives were going to be blessed more than we could imagine by this little boy. Once we got home and managed to flip our days and nights back around we began the appointments. We needed to get Micah checked out head to toe and figure out how to help him the best. In the last 30 days we have taken Micah to 14 doctors appointments. These many appointments have multiplied into many more referrals. With each appointment we have learned a little more, one more piece to the puzzle. Micah has been a trouper through it all. The most difficult for him has been the eye doctors. From these appointments we learned that Micah does not have cancer in his eyes! Thank the Lord! We were told this at the first appointment. What we did learn is that he is legally blind but not necessarily permanently blind. There is no guarantee if he will develop more sight but there is a chance. Waiting and development is what will tell...months and years. While we are waiting we know he does see shadows and some light. He loves to be talked to and will often times smile or talk to others as well.

We are blogging so our readers can see how God is going to work in and through Micah. We hope and pray that you will join us in praying for him and are blessed along the way as we have been.

For this child I have prayed.
I Samuel 1:27

Over the last week we have seen a decline in his eating and his weight. Micah does not have any room to lose any amount of weight. This lead to a couple more appointments and several conversations with the doctors. What has now been decided is that Monday morning Micah will be admitted to Valley Children's Hospital. He is going to undergo a massive amount of testing by doctors from almost every department in the hospital. He will also probably have surgery where a couple of different things will be done. We do not know exactly how long we will be there but close to a week is probably accurate. During this time your prayers are coveted. We have never had a child in the hospital before. This is new territory for us. Our biggest request is that the doctors will have wisdom to clearly see all that is going on in Micah's little body. The next request would be for our family to be strengthened through this process. We clearly see that this is absolutely necessary and essential to his development. This process is still going to be difficult to see him have to go through it all. We are not looking forward to seeing him hooked up to all the hospital gear. At this point we are weary and ready for more progress.

We invite you to join us along our journey of seeing God's hand. For Micah to be at this point already is a miracle in itself. We are excited to see the plans God has for him and blessed to be on this ride as well. We want you to be able to say,
"For this child I have prayed!"
Please join us!