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Today we went in for Alijah’s first appointment with the pulminologist to check and see how his lungs are doing. They did a checkup on him, and did a test that they called the “Room Air Challenge”. Basically, what they did was take him off the oxygen tank and let him just breathe normal room air. They had an oxygen saturation monitor on him to make sure he kept his oxygen level up. He did good for quite a while, but then his oxygen level started to drop which ended the test. So he failed his first Room Air Challenge today.
Click to continue reading Getting Used To New Life
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So…after 9 weeks of being in the hospital, Alijah will probably be coming home at the end of this week (Week 10)! It is surreal. He has been here in this world for 2 and a half months, and has never been home. They ran some tests on him today to determine why his billieruben level is rising instead of falling like it should. His liver may still be too immature, or he may have a gallbladder problem. They expect positive results, which wont change his coming home schedule.
So now he is pretty much set. He will be coming home with an oxygen tank for when he is here, a portable oxygen tank for when we are out, and some monitors for his oxygen, heart rate, and breathing rate. It is almost going to be like he is still in the hospital, but with us taking care of him instead of nurses.
Now…bringing home a baby is nerve racking enough - think about taking home a baby with all this hardware! Nonetheless, I am very excited. No more driving to the hospital (which is a 45 min trip), no more missing him (except for when I am at work).
Cant wait!
So we went and saw this movie with a bunch of friends. Basically, our church purchased all the tickets in a 500 seat theatre. All the tickets were free, and it was the church members mission to give them out to friends. Church members were free to attend the showing as well, but only if they came with people that did not attend our church. This was an outreach to the community.
Click to continue reading The Passion of the Christ
It was a really nice day today, about 65 degrees! Too bad it will be back down in the high 40’s tomorrow.
We are going to see The Passion of The Christ on Wednesday, and we invited about 18 people to come with us. It should be a good time.
Alijah is very close to coming home, as he is now working on what could be his last step towards being released - breastfeeding. Monica’s supply isnt what she would like it to be, and Alijah gets tired before he is full. It shouldnt be long though. The word right now is that he MAY need to come home on oxygen.
And Martha Stewart has been found guilty on all counts…whether she really did it or not, I see this as a victory for the little guy. Sorry Big Business (and Martha Stewart Living Omnimedia), but I think this is a major step in controlling all the corporate CEO’s who think they are untouchable.
Alijah is now out of intensive care, and breathing on his own! It is a very exciting time, and it wont be long before he is finally home with us…ending this adventure - and starting a new one here at home raising a little baby. I am excited, anxious, and nervous for him to come home. At the hospital, if something goes wrong a nurse comes over and fixes it. We wont have that luxury here. It is exciting being on the verge of him being released from hospital care, and bringing him home to complete our family unit! Who wouldnt want to bring this little guy home with them?
So…Alijah has come a long way from his birth 7 weeks and 2 days ago! He has finally gotten over all his infections, his oxygen needs have decreased drastically, his foot is healing from the IV infiltration, and he is down to 20 breaths per minute from the respirator, and he is eating 39 cc’s of milk every 3 hours!
Later today, he may be removed from the respirator! This will allow him to breath completely on his own (while just receiving oxygen), and also to use his voice! We have yet to hear it. On Monday, he will be done with his IV nutrition as he will be getting all his nurtition from his milk.
This entry written by Monica Edwards:
It is now February 27th, and Alijah is 7 weeks old today. He has come a long way in such a short time. He is up to 5 lbs now and about 17 inches long!! God is so good and so faithful. We are so amazed at everything he can do, its a small miracle, every moment of his life.They have weaned him off of morphine to just a few doses every now and then when he gets stressed so he is so much more alert now and has his eyes open for longer stretches. He is so curious about his surroundings and so at peace now that he is getting a little older.
Click to continue reading 7 Weeks Old and Other Stuff
First off, just so everyone knows - Monica’s birthday is tomorrow, February 24! Be sure to send her an email at monic AT amedwards.com
Also, just under a month away is Alijah’s due date / adjusted birthday! We hope to have him home by then (March 21) with us. He is taking great strides, but as the story goes in neonatal intensive care, something can always happen that keeps him there longer. However, we do look forward to his “graduation day”!
The latest problem he had was that his IV infiltrated into his skin. What this means basically is that his vein exploded at the IV site, so instead of the fliud going into his bloodstream, is started leaking out into his skin. The calcium in the solution causes a burn, so now the whole side of his foot is just a big burn. Steps are being taken to heal it, but its just another thing - and what angers me most about it is that this could have been prevented if the nurses watched the IV more closely. It sounds like they had it in longer than they should have. He will
probably end up with some scarring on his foot, and if it scars at the joint then he will need plastic surgery to get rid of the scar tissue as it may impair ankle mobility.
We just started getting the insurance EOB’s for Alijah’s hospital care, and it isnt pretty! Basic healthcare is just so expensive now, let alone hospital stays, surgeries, blood transfusions, and the like! Hopefully we can work something out with the hospital as far as repaying the assorted medical fees!
So with each day that passes, it becomes more and more real that we actually have a baby that is our own. Having a new child that you only see 4 times out of the week for a few hours creates an odd perception. It almost feels like you are just visiting someone elses child. You arent in charge - they are.
As Alijah continues to grow and heal and develop, the feeling starts to grow slowly that he really is mine, and will be here - with us at home - soon. It’s hard to feel like his father, even though I am. Very strange.
I am starting to slowly realize, though, that in six months or so I will probably be here posting a message titled “My Son Loves Cheerios More Than He Loves Me” and complaining about that!
Anyways…it is also slowly starting to sink in that we need to make all the “baby-proofing” modifications to our apartment soon! I am sure that if I got down on my hands and knees and took a look around from an infants perpective, I will find many many things that look interesting (and expensive) that I can destroy for the fun of it!
Any tips? Please do leave a comment or drop me an email.
I hope you all had a great Valentine’s Day. Our’s was simple, and sweet. Monica gave me a beautiful collage of 3 pictures of Alijah and I, and 2 pages of a poetic letter detailing our entire relationship from day one. I was very touched. She came home to what you see above.
So our baby, Alijah Jordan, was born a week ago - and everything is still to surreal. He was 10 weeks premature, and we cant take him home until around his due date. That is March 24. So until then, we have to travel back and froth from Olympia to Tacoma once or twice a day. I still need to maintain a 40 hour workweek (or as close to it as possible) to keep up with finances.
I wouldnt trade this child for the world though. I am so proud of his fighting spirit in the hospital so far. Today though we found out there might be a more serious problem as there is some type of blockage in his intestine, which is the reason that he isnt digesting his food. We will know more tomorrow, so keep him and us in your prayers!
Aside from that, Monica is doing better since the C-Section on the physical side, but mentally we are both (she especially) a wreck. It is hard to concentrate on anything other than Alijah, and hoping he is doing ok.
Coincidentally, one of Monica’s favorite shows is ER. Tonight on ER the title was “NICU” which stands for Neonatal Intensive Care Unit - which is also where Alijah is. During the episode, one of the babies also had a blockage of the intestines and it was inoperable because he didnt have enough intestine for them to remove it and have him be fine. The baby was finally given to the parents so they could enjoy him for a couple of hours before he died. I TOLD HER NOT TO CATCH AN ER ENTITLED “NICU”!!! Needless to say, she cried and cried.
I will keep you all updated on how Alijah is doing.
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