A post of pictures. Liam loved Christmas, New years, and especially the big Truck we got him for Christmas! (Honestly it was all Seans doing). Enjoy the pics.
We Live, We Love, We Learn...
Thursday, January 31, 2013
Tuesday, January 29, 2013
24 Hours Post Op
Neil had his PDA Ligation surgery yesterday. The surgery technically went well. Now his body is working on it's "new" "normal". Significant Hemo dynamic changes took place the instant they closed his PDA. He is needing to be kept heavily sedated for the time being.
One more step forward we hope!!!!!
One more step forward we hope!!!!!
Sunday, January 27, 2013
Sunday Night
Well, it's Sunday night at 9:15pm. Sean is on his way back to Yakima. Yesterday and especially today have been pretty rough. After hours of watching Neil struggle to breath, having his room full of RT's Nurses, and Doctors trying to help him we finally gave him medication to paralyse him. SO sad, so hard to see, so horrible. Necessary, yes. Horrible, yes.
Talk about heart wrenching to see him laying there totally limp, yet his brain still working. While he was paralyzed they tried putting a art line in. They were unsuccessful at the attempts because his arteries kept spasming they decided to take a break and try again in the morning b/c he had tears streaming down his face.
Break my heart.
Laying there paralyzed unable to cry or move, not understand what is going on, only knowing you are in great pain.
Again, necessary.... yes. Awful... yes.
He is getting worse not better. We HAVE to start moving in an upward fashion here soon =)
His heart (PDA) surgery is on for tomorrow morning. We have had a lot of discussion of timing for the surgery. Do it now when he is so sick and risk putting him through a surgery when he is not 100% and the ramifications of that. Or wait to do the surgery until he gets "better" but then running the risk of him not getting better and only continuing to decompesate, and decompensating to a degree the the surgery is no longer and option. And there not being any more options. Caught between a rock and a hard place. The surgery needs to be done, his PDA needs to be ligated and we just don't think he has a chance of improving until we ligate.
So tomorrow, and these next few days at the least are going to be very hard for Neil. He is going to be very sick. They will be hard for me to.
Is feeling this pain, anguish, and deep sorrow I feel in watching Neil suffer so, and allowing him to suffer so even a glimpse of what our Heavenly Father felt watching his son Jesus Christ suffer in Gethsemane and hang on the cross??? I can't imagine how that must of been, know how I feel watching and allowing my son to suffer and knowing Christs suffering was so much greater.
I know the atonement is real. When I allow myself I find comfort in knowing I'm not alone. Knowing He knows exactly how I'm feeling, how Neil is feeling.
My sister-in-law Penelope got me a calender for Christmas. It is art work by Greg Olsen. The January picture is of Christ with his arm around a child. Oh how I pray daily that Heavenly Father has his warm loving arms around Neil.
Talk about heart wrenching to see him laying there totally limp, yet his brain still working. While he was paralyzed they tried putting a art line in. They were unsuccessful at the attempts because his arteries kept spasming they decided to take a break and try again in the morning b/c he had tears streaming down his face.
Break my heart.
Laying there paralyzed unable to cry or move, not understand what is going on, only knowing you are in great pain.
Again, necessary.... yes. Awful... yes.
He is getting worse not better. We HAVE to start moving in an upward fashion here soon =)
His heart (PDA) surgery is on for tomorrow morning. We have had a lot of discussion of timing for the surgery. Do it now when he is so sick and risk putting him through a surgery when he is not 100% and the ramifications of that. Or wait to do the surgery until he gets "better" but then running the risk of him not getting better and only continuing to decompesate, and decompensating to a degree the the surgery is no longer and option. And there not being any more options. Caught between a rock and a hard place. The surgery needs to be done, his PDA needs to be ligated and we just don't think he has a chance of improving until we ligate.
So tomorrow, and these next few days at the least are going to be very hard for Neil. He is going to be very sick. They will be hard for me to.
Is feeling this pain, anguish, and deep sorrow I feel in watching Neil suffer so, and allowing him to suffer so even a glimpse of what our Heavenly Father felt watching his son Jesus Christ suffer in Gethsemane and hang on the cross??? I can't imagine how that must of been, know how I feel watching and allowing my son to suffer and knowing Christs suffering was so much greater.
I know the atonement is real. When I allow myself I find comfort in knowing I'm not alone. Knowing He knows exactly how I'm feeling, how Neil is feeling.
My sister-in-law Penelope got me a calender for Christmas. It is art work by Greg Olsen. The January picture is of Christ with his arm around a child. Oh how I pray daily that Heavenly Father has his warm loving arms around Neil.
Friday, January 25, 2013
And there was much rejoycing....
yeaaaahhhhhh!!
Sean got here tonight and will be here until Sunday night!!!
It's not that I am bearing the "burden" alone, but for some reason it is much easier to handel when Sean is physically here with me =)
Thursday, January 24, 2013
Unespected
Today as I was sitting in Neils hospital room and Dr. (lets call him Dr. R) came in. He is Neils main Pulmanologist. I began updating him on Neil's respiratory function etc and Dr. R interrupted me and said, "no I am here to see how YOU are doing". Taken back and surprised I had to double check that I had understood him correctly, but sure enough he was there for me not Neil.
It probably needs to be understood that of all Neils many doctors Dr. R is the most blunt, mater of fact, straight to the point doctor I've met. I appreciate this about him, he doesn't beat around the bush, although often times it's hard to hear things he says. So when he pulled up a chair and wanted to SIT and talk about ME I was very surprised and touched.
In general I never know how to answer the question "how are you doing?" I mean really what am I supposed to say??? But Dr. R and I had a nice conversation, a really nice conversation. He wanted me to know he was thinking about ME and worrying about ME. How this is probably the hardest thing I will ever have to go through. He reassured me of a lot of the things I'd been thinking and feeling. He reassured me it was OK to feel and act like a momma bear. He encouraged me in many ways to "take care of myself". I'm still trying to figure that one out =)
There was no epiphanies or anything of that nature, none the less it made all the difference to me today that Dr. R took time out of his busy day to talk to ME. I am understood.
Tender mercies
Like I said HE was the LAST person I would have ever expected to come in and care about me and have an emotional conversation like we did.
It probably needs to be understood that of all Neils many doctors Dr. R is the most blunt, mater of fact, straight to the point doctor I've met. I appreciate this about him, he doesn't beat around the bush, although often times it's hard to hear things he says. So when he pulled up a chair and wanted to SIT and talk about ME I was very surprised and touched.
In general I never know how to answer the question "how are you doing?" I mean really what am I supposed to say??? But Dr. R and I had a nice conversation, a really nice conversation. He wanted me to know he was thinking about ME and worrying about ME. How this is probably the hardest thing I will ever have to go through. He reassured me of a lot of the things I'd been thinking and feeling. He reassured me it was OK to feel and act like a momma bear. He encouraged me in many ways to "take care of myself". I'm still trying to figure that one out =)
There was no epiphanies or anything of that nature, none the less it made all the difference to me today that Dr. R took time out of his busy day to talk to ME. I am understood.
Tender mercies
Like I said HE was the LAST person I would have ever expected to come in and care about me and have an emotional conversation like we did.
Tuesday, January 22, 2013
The Good, The Bad, The Ugly...and The Beautiful
The Good
I got to hold Neil for 4 hours today (thanks in part to him being sedated grrrr... that's a whole other story). He likes to turn his face into my arm/chest. He slept like that almost the entire time I was holding him. I like to believe he can smell me and knows I'm his mom. I like to believe that he needs and benefits from my smell, warmth, and touch as much as I do from his.
I would have held him all day if my physically discomfort and the nurses need to "do stuff" to him didn't take him out of my arms back into his lonely hospital bed.
He is so sweet.
The Bad
He still isn't improving on the Pneumonia front. I know I need to be patient. He got a blood transfusion (his 6th) last night and at least his color looks better today =)
The Ugly
Neil has a PDA (Patent ductus arteriosus). This is not new news. We have been monitoring it, last week we tried drugs to minimise it that did not work. A repeat Echo Cardiogram this morning showed it is getting even worse. This means we are looking at a heart surgery in the near future. Not emergent as in needs to be done tomorrow, but within the next week or so. I imagine it will highley depend on Neil getting over this Pneumonia first then Surgery. As far as heart surgeries go this will be relatively minor, but honestly any surgery for Neil is a big deal for his frail body.
Within the next few days we will know more.
The Beautiful
Neils eyes. I cherish his awake time. I don't know if I've ever seen anything as beautiful as his big eyes looking at me. My poor baby has been sedated on and off so much I don't feel like I get to see those big dark eyes often. Some how me gazing into his eyes, and he into mine reminds me it is all worth it. Reminds me that he is just my innocent baby boy.
Monday, January 21, 2013
Roller Coaster
Life with a baby in the NICU is a roller coaster. Today was a down day. Postpartum hormones mixed with a suffering baby mixed with a bunch of little things all kind of accumulated today and the tears flowed. I was reminded how much it sucks to be here. I was reminded how much I just want to be home with my husband, my (almost) two year old, and my little baby. I was reminded how much I yearn to take away all the pain and suffering Neil is going through. I was reminded of how much his little body is really going through. Most of all I was reminded how I would do or give almost anything to be able to pick him up, take all his tubes/IVs etc off/out of him, cuddle him and take him far far away from here.
Man! What a downer way to start a post! Right! Sorry. I really could go on even more, and explain in greater detail, but I wont.
Neil has taken a bit of another nose dive. He has Pneumonia. To a healthy person this can be dangerous. But to a baby who already has chronic lung disease and is on a ventilator it can be deadly. Yesterday and today he has just been so sick, having such a hard time breathing. His body has been struggling to recover his breathing when he cries.
I don't know why I continue to be surprised at how quickly things can go from being "ok" (realizing ok for Neil is a very relative term) to bad. His body is tiny and sick so it doesn't take much to affect him.
I know things will get better. But that doesn't make me feel any better right now =) Life is hard sometimes.
Today my mom encouraged me to blog b/c there are always people asking how Neil is doing, so for better or worse here it is. I could only post happy and cheerful things, I really could but then I would be distorting the truth.
Is there a sliver lining in the clouds? Sure of course there is, there has to be.
But, none the less Neil continues to be the cutest little baby boy. I love him. He is a fighter for sure.
I hope tomorrow I get the chance to hold him =)
Man! What a downer way to start a post! Right! Sorry. I really could go on even more, and explain in greater detail, but I wont.
Neil has taken a bit of another nose dive. He has Pneumonia. To a healthy person this can be dangerous. But to a baby who already has chronic lung disease and is on a ventilator it can be deadly. Yesterday and today he has just been so sick, having such a hard time breathing. His body has been struggling to recover his breathing when he cries.
I don't know why I continue to be surprised at how quickly things can go from being "ok" (realizing ok for Neil is a very relative term) to bad. His body is tiny and sick so it doesn't take much to affect him.
I know things will get better. But that doesn't make me feel any better right now =) Life is hard sometimes.
Today my mom encouraged me to blog b/c there are always people asking how Neil is doing, so for better or worse here it is. I could only post happy and cheerful things, I really could but then I would be distorting the truth.
Is there a sliver lining in the clouds? Sure of course there is, there has to be.
But, none the less Neil continues to be the cutest little baby boy. I love him. He is a fighter for sure.
I hope tomorrow I get the chance to hold him =)
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