Home

I know this is old news, but we were able to bring Jamin home Wednesday. He was able to leave even though he isn't "healed" completely because I have been there there soaking up what to do, how to care for him, and what to watch for. Otherwise it would be another 3-4 weeks before he has a normal breathing rate. He cannot nurse enough to meet his needs, so along with a little bit of nursing he takes a special bottle of my pumped milk; fed to him in a way that is easy on him but won't get into his lungs. Other than that, we are just doing the normal newborn bit around here.

When we took him outside those hospital doors that afternoon it was his first breath of "real" air, after 18 days of life; the tears of joy were flowing. When I laid in my own bed that night I suddenly felt the heaviness of the situation. Weariness overtook me in every way: emotionally, physically, mentally, spiritually.

Ecclesiastes 3:7, "A time to tear and a time to mend."

Not Yet

It's Sunday morning and there isn't really a departure time near in site. It's easy to dwell on the inconviences and lonliness in the midst of chaos; after all practically living in a hospital is far from hospitable. But the Lord reminded me: YOUR BABY IS ALIVE, rejoice! I've sadly watched two families have to start thinking about funural arrangements instead thinking about car seats, baby clothes and cribs. Their babies looked to have had very similar problems to Jamin, don't know for sure of course due to patient confidentiality. I need to be spending my thoughts praising Him not nagging Him!

Jamin still needs level 2 care, the remaining hurdles are to calm down his breathing rate, get the junk out of his lung and chest, and be strong enough to fully feed himself. Breaths per minute are down to *only* double what they need to be and he can feed himself about 40% of what he needs. By the way level 2 care means that he needs monitoring and assitance for basic functions, pretty much what most of the babies in the NICU are, *just* sick. Level 3, which he was at for 8 days, is critical, pretty much cannot preform any basic funcions without constant assistance. Level 1 is when baby is stable and is monitored to make sure he/she can endure basic tasks of everyday life, such as ride in a car seat. Baby needs to be totally self sufficient with basic functions for approx. 48 hours before discharge.

While it is a bummer that he is not well enough to thrive at home, the fact that we will eventually take him home is the biggest blessing we could ask for! God is good, no matter what the outcome could have been with this situation, but oh how wonderful it is that he spared our precious little Jamin!

Jamin's To Do List

~ cough up junk in chest and get the fluid out of his right lung

~ start breathing at a normal rate which is 20-45 breaths per minute, not his current 60-100

~ no need for the extra oxygen, he wavers between needing 23-35% to keep his oxygen saturation levels up, room air is 21%

~ stop looking like a pumpkin, he is jaundice but tests show him currently just under the treatment line

~ full healing of his scars so that there will be no infection

~ learn to the bottle without tiring out and taking advantage of the tube that goes strait to his tummy after a few sucks

~ be strong enough to be awake at least 3 hours total a day

~ prove to his doctors that he can be stable for a 48 hour period

Little by little!!!

We get to hold him a few times a day now! Sunday was his first cry, first hiccups, first eye contact. Out also since the last post came his other line out of his bellybutton that gave him his fats and baby gatorade. He still needs quite a bit of pressure pushed into his lungs (2L), but it is near room oxygen level, he's at 24%. He needs to learn to tolerate enough milk each feeding, (takes a while to get your stomach up to speed with your caloric needs when you didn't use it for a week) and learn how to really suck a bottle, then begins nursing. We haven't been told a timeline of when we might go home (they stopped predicting speed with him =) If we were to guess it would be this following Monday. It is such a blessing to use the phrase "when we get home..." it means that this portion of the trial is almost over! THANK YOU, THANK YOU, THANK YOU for all your prayers, God has truly worked a miracle!

1 week old

I don't know where to start there is just so much GOOD to share; glory to God!

First I want to point out to those that didn't know that he was born on John's birthday. Judi (John's mom) was born on her dad's birthday. And Alysun (sister-in-law) is due with Jamin partner in crime on her birthday. Kinda funny weird, eh?

So with my last post I put God in a box, and He is teaching me not to do that. I ended with the statement that he had a long way to go using extra o's to emphasise. Well while at this exact second in time he has x,y, and z to complete there is no telling how long it will take. The Lord has accelerated his healing. The nurse's and doc that had him last weekend walked in yesterday pretty much floored that this was the same baby. Before the main doc came in I was pretty sure he would have the same good surprised reaction as the nurse to I braved myself to share a little bit of why he is going so good so fast. You see, I've never personally lead anyone to the Lord, I've never done street evangelism or helped run a 5 day club or something similar. Occasionally I will say praise the Lord to someone that I don't know their spiritual status, but not really much more than that, and especially not to such intelligent people like doctors. So when she had the reaction that I had expected I nervously in my heart but confidently in my voice said, "The glory goes all to God almighty. I know you all are great at your jobs, but He is the one that gets the credit. This little man literally has thousands of people praying for him." There I had said it, looking into her eyes. I looked back at Jamin for fear of a disgusted look. She put her hand on my shoulder and said "Amen." I know that probably isn't a big deal with most of you for me it was. You see while pleating with God for his precious life I reminded Him that He does all things for His glory. I prayed that His healing of our son would do just that, bring glory and honor to Him, so that I can love him and raise him up here on this earth. A living testimony, a constant praise for the giving of life.

So on to more ways to lift up His name. Yesterday was a big de-cluttering day at Jamin's bedside, because he can do a few more things on his own! The MAJOR thing is that his ventilator is gone and he has downgraded to a nose tube for extra oxygen. Oxygen levels did have to go up to 27% after the move, but that is just because he needs extra support from all the changes. With all the chest tubes out of him they have slowly weaned off all the pain meds. Because he doesn't need constant (every 3 hours) blood gas tests (O2 vs. CO2) they took one of his two lines out of his bellybutton that feeds into a major vein. His catheter is also out, so I changed my first diaper of his Saturday evening! I've never been so excited, trilled and with a big fat smile on my face to wipe poop. There is a LOT of equipment that is gone with this, even if it doesn't sound like much. So what is left is his feeding tube that goes strait to his tummy it is currently down his throat but is going to be moved to up and then down via his nose soon, with that he is getting my pumped milk. (I will have to post later about the evil yellow pumping machine.) He has one line via belly button that gives him his fats and "baby gatorade". I asked but there is no place to donate my unwanted fat to his cause =) He has his nose tube that gives him extra oxygen to keep his oxygen levels up. Also on him is the way to measure those oxygen levels, they light up and one in on his hand/wrist and one is on his ankle/foot. The hand one measure the amount of oxygenation before it goes through the heart and the foot one measures after. And the last thing on him is an IV port on his left wrist in case that have to give him anything "extra."

So even though there is still several things attached to him, I was able to accomplish another first. After what will hopefully be the longest week of my life, I held my son for more than his initial 30 seconds. John had to run home real quick and got stuck in an unusual Saturday traffic jam I-5 south (this is one reason why we all don't live in Portland, right!?) So he missed this event and there is no documentation with a photo. I cannot begin to describe how I felt (or how much my milk dropped. =) So amazing and powerful is His love for us.

Update on little Jamin

He is off the oscillator (shaky bed that makes him breathe and helps blood flow) and has all 3 chest tubes are out of his body! So the holes in his lungs look to have healed and he can semi breathe on his own with the help from the ventilator... at room oxygen level (21%) I might add! His ventilator reminds him to breath when he forgets and aids him if needed with his own initiated breath. He still has tubes and wires helping him with every other function but all the doctors (he has one assigned to him for everything, respiratory doc, heart doc ect.) and nurses are AMAZED with his quick progress, before they expected him not to be at this point after 3 weeks and he did it in 1 (less since he has about 13 more hours until he is one week old.) Only with God's power!

A few days ago, when I was feeling overwhelmed by how far he needs to go before we can take him home, I was encouraged by a simple AWANA song I used to sing with the chums. So appropriate...

"Little by little, inch by inch, by the yard it's hard, by the inch what a cinch. Never stare up the stairs just step up the steps. Little by little, inch by inch. "

There is still a looooooong way to go, but we will celebrate each *small* improvement!

Pictures