Great Results Again

The surgery went as well as it could have. Levi did not have to go on the vent. He slept through the procedure. He woke up around six and already took down a bottle. Thanks for all of your prayers. It looks like we will be home this weekend as long as there are no setbacks. Please pray that he will not have any infection. I will keep you all posted.

Hernia Repair

The hernia repair is scheduled for around lunch on Tuesday. Please pray for a good surgery without needing to put him on the vent. Please pray for a quick recovery. The plan is to discharge him Friday or Saturday if all goes well. We are getting setting up with the home health people and filling his medications. Its so close but along with all of the joy is alot of stress and anxioty. I will give a follow up of how things went tomorrow.

Final Hurdle

Levi has taken all of his feeds from the bottle for a few days now. This is huge victory because the doctors didnt think he could get there. Now the hernia repair is scheduled for Tuesday at 1:15. We are hoping it can be done without him going on the vent. Levi is supposed to be discharged as soon as he fully recovers. This could happen as early as Friday of next week. Please pray for the upcoming surgery. Please also pray for us as the anxiety builds. Levi will have a lot of follow up appointments, medications, and even o2 at home. This is a huge responsibility to take on but we are glad to do it. Please also pray as we are in some transition with our health insurance. We are unsure about how all of this will play out with our finances. He has taken care of us so far so we must continue to trust Him. Obviously thats easier said than done.We often catch ourselves worrying about those sort of things.

Father's Day

Levi has had a big weekend. Yesterday he got to see his Aunt Shannon for the first time in a long while. Today he had his first real tummy time on his tummy time mat. He was able to push up quite a few times and really liked the colors and attached rattles. He is still doing great with his feeds taking almost two ounces per feeding. The doctor plan to let him loose on the bottle soon. He will get to take it "on demand" instead of being regulated so much. The hernia repair may be this week so please be praying for that. We dont want this to cause a set back. Speaking of set backs you will see Levi back on the nasal cannula. The doctors are not concerned because they believe its due to increased work of feeding. For a baby like Levi with chronic lung disease it really wears him out. Hopefully he can come back off of it before he comes home. We are OK with it because its a better option than getting the G-tube.

Pray for Aaron

Levi is still doing great with his feeds and if he continues at this pace he will hit full feeds next week. Please keep praying. he hit 8lbs tonight!

I really wanted to ask for your help also. I have never mentioned much our families on this blog. I felt led after en email from my sister-in-law today to share something with you. I also wanted there permission to post this. My Brother Shane and his wife Meredith adoted a little boy from Ethiopia last year. He is a huge joy to our family and has a smile that can light up any bad day. Aaron was obviously malnourished and possibly a preemie himself. Although that cannot be proved due to lack of details of his birth. He is actually dealing with issues that could end up be very similar to what Levi may face. He has some more test coming up such as swallow study like Levi has been having. Please read this message from Meredith below and please please pray for Aaron that he would over come all of these things. Pray that he will quit aspirating and that he will continue his neuro development. Can I count on my prayer warriors?

Where do I start with the Aaron journey??

The past 17 months have been a rollercoaster of ups and downs and twists and turns!  Close friends and family have been with us along the way, but really all the 'general' public has seen is a super tiny malnourished baby develop into a smiley little toddler!  What the pictures don't show is what prayer and the miracle of adoption has done for this precious little guy!  We haven't posted publicly (blog, Facebook, etc) all of the medical issues we've encountered, but we believe in the power of prayer....so here we go!.................We met Aaron in January of 2010 and of course---fell in love! It was a scared kinda love, this mama knew something was going on with her baby boy!  Aaron looked and acted like a newborn at 5 months old (no head control or strength anywhere in his body). Unlike newborns though---he had a smile that could knock your socks off (and still does--HE'S A CHARMER!).  We brought him home and found out why he wasn't gaining weight or thriving in Ethiopia.  He was sick and didn't have the physical ability to overcome the sickness.  After having a series of tests completed we determined Aaron's immature development (both neurologically and physically) was keeping him from swallowing correctly.  Aaron aspirates (fluid he drinks goes into his lungs).  This is something that they would NOT have been able to identify in ET, but here in the states---there is an easy solution (we thicken all of his fluids so it takes longer to swallow and it goes down the right way).  By the fluids (Milk, juice, etc) going into his lungs, bacteria grows and he develops pneumonia.  The aspiration and breathing issues landed us at the pediatricians office 30+ times in his first year home.  We also took 8 trips to UNC Chapel Hill (5 different specialists), had 3 bronchoscopies, 1 MRI, adenoids removed (they grew back 3 months later!), 2 sleep studies and countless painful labs completed.  Aaron has been through more in the 17 months he's been with us then I have in my almost 30 years of life!  The medical journey continues and for this....we ask for prayer.  We pray for physical healing for Aaron so that he can continue to grow and develop neurologically.  Aaron has come SO far from the small 9 lb boy we first met and we look forward to watching him continue to grow and develop.  I have been hesitant to share all of our medical issues on public blogs, forums and facebook.  I can see how our challenges would discourage others from adoption, but really---it should encourage others to adopt!  Aaron's days were numbered when he was in Ethiopia, he is a true testament of how adoption saves and transforms lives.    I am constantly amazed by his progress and the hurdles he's overcome to get to where he is today.  If he would've stayed in ET, even in the carepoint center....we are convinced he wouldn't have survived another month or two. We can't imagine our crazy wild life without him.  Please join us in praying for our little miracle boy to overcome his respiratory/breathing/feeding issues!

 

Aaron in ET

Aaron now

 

Great Results

Just a quick update. Levi had his eye exam first thing this morning and he doesnt need to be seen for 3 weeks. They said his eyes look great and have healed fine. His swallow study was a sucess. They said that it was ten times better than the one just two weeks ago. He was actually able to drink thin liquid from a slow flow nipple. This is a huge improvement from needing all of his milk thickend. So now he can be progressed more quickly. He will allowed to take 5cc more per feeding each day or two untill he takes the full amount. To give you an idea he is at 35cc by bottle every three hour feeding. He needs to take about 60cc per feeding which is two ounces. We think he will be able to pull this off. He gets mad at us when his current bottle empties out. Please keep praying for his progression. We have checked off many of the items on our discharge checklist. Tonight we learned infant CPR. Thanks again and again for your prayers.

Trent, Anjie & Levi

Progressing Along

Psalm 127 ³Behold,^(F) children are a heritage from the LORD,
   ^(G) the fruit of the womb a reward.


At this point it is so hard to still be at the hospital. We want to take our little man home so very bad. Words cant explain the emotions we are experiencing after such a very long road. I dont mean to complain but just to pass this along so you can pray for us. We know that Levi is a blessing straight from God. Its very hard to watch him go through all of these things but we wouldnt trade him for anything. Those of you who have children young or old please take the time to slow down and realize this. God has blessed you with a great reward! If you have never had to watch your child go through surgery or breath from a ventilator you are double blessed in my opinion. There are so many families just like us going through similar experiences. If nothing else we have learned to not take one second with Levi for granted. I hope you all learn the same lesson from following our story. The next time your kid doesnt mind you, doesnt take their nap or eat their dinner. The next time they complain about their school work or doing their chores. Please take a deep breath and give God thanks for his blessings.

As for Levi he is really out performing expectations with his feeding. He is now taking a full ounce at every feeding. That is a little more than halfway to full feeds! The doctors will only let him take that much until his swallow study tomorrow. At this study he will take a full bottle down. They will watch to prove it is all going to his stomach and not his lungs. Apparently these babies can get tired towards the end and not protect their airway. So if he does well he will be allowed to work his way towards full feeds and going home. Please keep praying! Levi is 7lbs 14oz tonight.



Eating Update

Sorry for the lack of updates but this has been a busy week. The older Levi gets the more maintance he requires on our end. He spends alot more time awake. His feeding is going well and he keeps increasing little by little every other day. The doctors are also working his feed times to be faster. Meaning instead of a slow trickle from his tube it is now going in over 2 hours and he takes two hours off. This is meant to get his stomach acting more normal for when he finally gets to full feeds by bottle. All of this has to be done very slow and methodically to keep Levi from refluxing too much and possibly aspirating. So far everyone has been impressed by him after having such a tough course to this point. That being said we dont know that magic answer everyone wants to know. We will get to go home once this feeding stuff works itself out. We are one the last leg though. Please pray for patience for us. We need it now more than ever. Its becoming harder and harder to leave him every night.



Learning to Eat

We are asking for specific prayer for Levi as he learns to eat. This is alot harder for him than it would be for a full term baby. With his airway issues he is at risk for aspiration. With his lung issues he gets winded as he eats and has to work harder. He is taking milk but they are only allowing him a small amount every 12 hrs. He has done OK with that so far. He definately likes the bottle and has a good suck. I would have never thought my son would have any trouble with eating. Please join us in praying for him to get it so he doesnt need the G-tube. He is still off of the oxygen and is doing really well breathing. He is now up to 7lbs!

On a side note...Happy 5 years to my wife. She is something else for putting up with me. She is also turning into a great Mom.