Jack had a really good day. His temp jumped around but the doctor said that he didn't want to worry about a low grade fever because that just meant that Jack's body was really fighting the infection. His sats were pretty average. Not great, but not bad.
But the biggest event of yesterday was that Jack opened his eyes for the first time in over a week. --Well, he technically opened his eyes on Saturday when he was extubated but they were foggy and he couldn't seem to focus on anyone. That day it was more scary than happy.-- But this time it was wonderful. His eyes were clear and beautiful. They were Jack's eyes. He opened them and looked right at me and I melted. I love that boy so much. He's my whole world.
Post-Op Day Eight
Yep. We're still here. Jack had a really good night with his favorite night nurse, Katie. The only little incident in the night was that he started throwing up stomach acid around 8:30 but she quickly put in a second NG tube to catch it since he has the vent tube down his throat and can't really throw up. She caught a lot of the acid at first so they decided to leave the tube in so it wouldn't collect in his tummy. Now its draining through his NG tube but there hasn't been nearly as much since last night.
This morning we were really hoping for extubation, however his sats were lower and temp was higher this morning than it had been all night. When the doctors made rounds they said that the top section of Jack's right lung has collapsed because of all of the fluid from the tracheitis. Now they are thinking he probably has pneumonia. They are still treating him with the two IV antibiotics and one inhaled antibiotic and they decided that they would just change the vent settings for the day and see if they could get his lung to open back up. If they can't do that by tomorrow morning, they will have a specialist come and give Jack a treatment where they will put a little probe with a video camera down into his lungs and look around then it will spray saline into his lungs and suction out all of the junk. When the doctors came by this evening they seemed to think that his 4:00 x-ray showed improvement in his lung so hopefully by morning it will be all better.
<3--------------------------------------------------------<3
In situations like these, I have found that it is easy to become bitter. It wears on you over time and you start to feel your attitude change. When Jack was born and they told us that he had a heart condition, bitterness was unescapable. I had to work to rid myself of that emotion and it took time and some serious soul searching to come to terms with our new way of life and future.
When I went into the hospital in January to give birth to my son, I assumed that it would go exactly as I had pictured it a million times. I never dreamed that it would turn out the way it did. When Josh told me that there was something wrong with Jack's heart, my first reaction was fear and second was bitterness. Why Jack? Why us? Why me? Why not the lady who smoked when she was pregnant? Or the woman who talked about how there's nothing wrong with a drink or two?
When I went into the hospital in January to give birth to my son, I assumed that it would go exactly as I had pictured it a million times. I never dreamed that it would turn out the way it did. When Josh told me that there was something wrong with Jack's heart, my first reaction was fear and second was bitterness. Why Jack? Why us? Why me? Why not the lady who smoked when she was pregnant? Or the woman who talked about how there's nothing wrong with a drink or two?
I had to go through a grieving period of some sorts. I experienced the seven stages of grief. First there was the shock and denial. (How is this possible? Is this a dream? This can't be happening to us.) Then pain and guilt. (Was it something I did? Is it my fault he's sick?) Next was anger and bargaining. (I'll do anything if you'll just make him better, God.) Then depression, reflection, and loneliness. (I'm scared of what will happen. I cry all the time.) Then there was the upward turn. (Maybe it's not so bad. If he has to be sick, at least it's this and not that. Things could always be worse.) Next was reconstruction and working through. (I don't like this but I can't change it so I'll just face it.) Then lastly I reached acceptance and hope. (Jack is going to be ok. We will trust God and watch him work a miracle. I'm thankful that He has chosen to use us.)
As I have come to terms with my son's condition and accepted what our life as a family and Jack's life will be like, I have realized that I would never be strong enough to handle this hand we've been dealt without the love and peace of God in my life. On the days when I start to try to take control of everything, including myself and my emotions, away from God and into my own hands, I sink quickly. Yesterday was one of those days.
After 11 days in the hospital... 11 days of not holding my son... 11 days of watching him hurt... 11 days of being constantly terrified... 11 days of watching monitors... 11 days of listening to doctors... 11 days of tears... I got mad.
When they made me leave the CICU at 6:30am for shift change, everything looked good. Jack had a good night and was sleeping like a lamb. His sats were up and temp was down. We were thinking that when we went back at 8:30 we would be ready for extubation. However, when we did go back in, things were not how we had left them. His sats were back down and temp was back up. The doctor told us that part of his right lung had collapsed and he had a touch of pneumonia.
I was like, "You're kidding, right?" I mean, just when we thought we were on the right track, more bad news? Grrrr.... Right from the beginning of the day I allowed my attitude to plummet. I let anger and frustration rush in and take over. I was suddenly mad at everything and everyone. Baby Jack's soft spoken, ordinarily overly optimistic mom was on hiatus. I was bitter.
I won't go into details about everyone who made me mad... We'll just say it was a rough day. I can only imagine what everyone was saying when I wasn't around. "Stay out of Crystal's way. She is in a foul mood." I was just so tired of seeing my baby in that bed. I was tired of watching them stick needles into his skin like it didn't hurt. I was tired of watching the monitors get better, then worse. I was tired of hearing the doctors say maybe tomorrow. I was tired of the new nurse telling me stuff I already knew. Mostly I was just tired...and probably spread a little too thin.
Bitterness creeps in like a thief in the night, robbing us of our peace. Even in the midst of the biggest storm of our lives, we can have peace. Ultimately its up to us. We can choose bitterness or we can choose peace. As a result of my day of bitterness I ended the evening feeling guilty, heavy-hearted, and nauseated. And as a result of my bad mood, pretty much everyone else was in a bad mood too. I noticed that everyone else was talking about what a terrible day it was. What an awful nurse we had. What bad news we had received. I realized that as the mom, I set the tone of the day for everyone. I can take yucky news and make it sound like a pretty good report. Or I can take decent news and make it sound like the worst report ever. I guess since I'm the mommy, I get to decide...indirectly, of course. I suppose that nobody wants to be happy if I'm sad and nobody wants to be sad if I'm happy.
Natalie Grant describes the battle with bitterness well in her song "Held."
"This hand is bitterness. We want to taste it. Let the hatred know our sorrow. The wise hand opens slowly to lilies of the valley and tomorrow. This is what it means to be held. How it feels when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was, when everything fell, we'd be held."
I like the part where she says we want to let the hatred know our sorrow. Sometimes when we grieve, we just have to get mad. It's part of the process. Even though I've been through the grieving process, I am revisiting some of those steps right now. Bitterness is a tough one. It's easy to fall into and hard to pull ourselves back out of. Anger is easy. Why not? Why not blame anyone and everyone else? Why not yell, scream and punch walls. Why not?
I don't think God gets made at us for getting angry. I think that He wants us to trust Him and believe in His plan. I think that the more disciplined I become, the less bitter I will be. God's word is full of precious promises that remind us that there is no reason to be bitter. He has a reason why he allows things to happen. He has a plan to get us through. He only allows us to go through as much as we can handle. So, when things seem really bad and our mountains seem really tall...we can rest assured that it only means that God thinks we're strong enough to handle it and brave enough to be tested and used.
And at the end of every stormy, bitter day... We can always be brought back to life, brought back to our optimistic, uplifted selves by one of God's precious promises... A rainbow.
Here's my rainbow from yesterday. God is still good. His promises are still steadfast.
As I have come to terms with my son's condition and accepted what our life as a family and Jack's life will be like, I have realized that I would never be strong enough to handle this hand we've been dealt without the love and peace of God in my life. On the days when I start to try to take control of everything, including myself and my emotions, away from God and into my own hands, I sink quickly. Yesterday was one of those days.
After 11 days in the hospital... 11 days of not holding my son... 11 days of watching him hurt... 11 days of being constantly terrified... 11 days of watching monitors... 11 days of listening to doctors... 11 days of tears... I got mad.
When they made me leave the CICU at 6:30am for shift change, everything looked good. Jack had a good night and was sleeping like a lamb. His sats were up and temp was down. We were thinking that when we went back at 8:30 we would be ready for extubation. However, when we did go back in, things were not how we had left them. His sats were back down and temp was back up. The doctor told us that part of his right lung had collapsed and he had a touch of pneumonia.
I was like, "You're kidding, right?" I mean, just when we thought we were on the right track, more bad news? Grrrr.... Right from the beginning of the day I allowed my attitude to plummet. I let anger and frustration rush in and take over. I was suddenly mad at everything and everyone. Baby Jack's soft spoken, ordinarily overly optimistic mom was on hiatus. I was bitter.
I won't go into details about everyone who made me mad... We'll just say it was a rough day. I can only imagine what everyone was saying when I wasn't around. "Stay out of Crystal's way. She is in a foul mood." I was just so tired of seeing my baby in that bed. I was tired of watching them stick needles into his skin like it didn't hurt. I was tired of watching the monitors get better, then worse. I was tired of hearing the doctors say maybe tomorrow. I was tired of the new nurse telling me stuff I already knew. Mostly I was just tired...and probably spread a little too thin.
Bitterness creeps in like a thief in the night, robbing us of our peace. Even in the midst of the biggest storm of our lives, we can have peace. Ultimately its up to us. We can choose bitterness or we can choose peace. As a result of my day of bitterness I ended the evening feeling guilty, heavy-hearted, and nauseated. And as a result of my bad mood, pretty much everyone else was in a bad mood too. I noticed that everyone else was talking about what a terrible day it was. What an awful nurse we had. What bad news we had received. I realized that as the mom, I set the tone of the day for everyone. I can take yucky news and make it sound like a pretty good report. Or I can take decent news and make it sound like the worst report ever. I guess since I'm the mommy, I get to decide...indirectly, of course. I suppose that nobody wants to be happy if I'm sad and nobody wants to be sad if I'm happy.
Natalie Grant describes the battle with bitterness well in her song "Held."
"This hand is bitterness. We want to taste it. Let the hatred know our sorrow. The wise hand opens slowly to lilies of the valley and tomorrow. This is what it means to be held. How it feels when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was, when everything fell, we'd be held."
I like the part where she says we want to let the hatred know our sorrow. Sometimes when we grieve, we just have to get mad. It's part of the process. Even though I've been through the grieving process, I am revisiting some of those steps right now. Bitterness is a tough one. It's easy to fall into and hard to pull ourselves back out of. Anger is easy. Why not? Why not blame anyone and everyone else? Why not yell, scream and punch walls. Why not?
I don't think God gets made at us for getting angry. I think that He wants us to trust Him and believe in His plan. I think that the more disciplined I become, the less bitter I will be. God's word is full of precious promises that remind us that there is no reason to be bitter. He has a reason why he allows things to happen. He has a plan to get us through. He only allows us to go through as much as we can handle. So, when things seem really bad and our mountains seem really tall...we can rest assured that it only means that God thinks we're strong enough to handle it and brave enough to be tested and used.
And at the end of every stormy, bitter day... We can always be brought back to life, brought back to our optimistic, uplifted selves by one of God's precious promises... A rainbow.
Here's my rainbow from yesterday. God is still good. His promises are still steadfast.
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WOW ! I want to thank you for your transparency . I have experenced two sick children one with asthma one an atrial cetal defect . Gods mercy ,love , power , & strength are very apparent in every word you wrote Godbless your family . Remember theres only one that love our babies the way we do accually more than we can imagine & thats our father God ♥ Jerimiah 29:11 is my favorite scripture & it's so true hang in there were praying for you guy's . The DeGrandpre Family :)
ReplyDeleteI admire your strength. My heart goes put to you. I will keep baby Jack in my prayers. I am a parent too, so I know the pain you feel,but stay strong. I feel truely touched that you shared your story with us. We are thinking about you always.
ReplyDeleteWhat a beautiful baby Jack is.... I know God will listen to all our prayers.... I will read one day on how Jack plays football and runs in park.... my prayers will be with all of you...!!! Monika Krzyzynska
ReplyDeleteI have followed your posts on Facebook but never really read your blog. Wow! I have to say you are a beautiful writer. And I so admire you for being willing to put your whole self and soul out there for hundreds of strangers to read. You are a great mother and a strong woman. Hang tough! Hang strong, baby Jack! Prayers and hugs are being sent your way. Believe!
ReplyDelete