It is so hard not being able to go and see Averi. I was concerned that I was coming down with something, so I didnt go in her room yesterday. The discoloration in her belly is way better. The doc said she is doing better. They tend to be very conservative with comments like that. I am just thanking the Lord for my children.
Not being able to hold Averi or even hear her cry at all since she was born has been hard. We continue to take things one day at a time, though.
Showing posts with label personal thoughts. Show all posts
Showing posts with label personal thoughts. Show all posts
Sunday, December 27, 2009
Friday, December 25, 2009
worst day of my life....warning this is a long one
Honestly, I can't say that I believe that is the last time I will say that. Averi was really rocky coming out of the decannulation yesterday but seemed to stablize around 4pm. Her cardiologist came in after surgery looked at her then listened to her heart and left the room. He never said a word to us. Kevin asked Dr. Pretzlaff what Dr. Van Gundy's thoughts were, and he said the concern is that there was so much pressure on her heart because her lungs were still so hypertensive that it was causing the left side of her heart to be compressed.
A short time later Dr. P came back and said that we were making some head way with her stability but there wasn't much more that they could do with the vent or meds and it was a possibility that her heart could stop. If that happened it would not benefit her to do cpr to bring her back and basically would we sign a DNR. I could not believe that he was asking me this with things being so rocky after surgery for anyone why would she not be worth trying to save during this difficult recovery time. I told him I couldn't answer that and just cried and prayed at Averi's bedside.... and cried and prayed. I was so torn between wanting my baby and feeling like maybe I was being selfish. She was stable and the nurse said we needed to take a break, eat something and talk. We did so and came back.
We walked in and not even 5 minutes later her blood pressure shot up and her heart rate dropped and dropped. The nurse froze and called another nurse, who called the nurse in charge, who called a doctor. He told them to administer some drugs (one that keeps the brain from bleeding)and something else (dont remember what). This doctor just walked in the door for the night shift. The nurse called out and said pupils are fixed and dialated...nonresponsive. She then took the time during this to ask about the DNR if her heart rate dropped again. I told her no! She rolled her eyes and walked away. Something in my heart just blurted out NO!!! The doctor ordered a blood gas and they checked her blood sugar. It was way high. Her blood pressure and heart rate seemed to stablize.
The doctor said it was one of a few things, one he ruled out pretty immediately, the other 2 were brain damage because her brain was not telling the body to produce carbon dioxide anymore (the blood gas showed it was way LOW after being way HIGH) or it was her lungs just deciding to work which triggered the way low CO2 which then caused the lungs to constrict putting way to much pressure on her heart causing the dropped heart rate and high blood pressure. If it was brain damage there was nothing they could do. The nurse that asked about the DNR said again pupils are fixed, dialated and nonresponsive.
We sat there in the room for a while and I decided we needed to be together as a family, so I told Kevin I was gonna go home take a nap wrap gifts back up the car and we were going to spend Christmas as a family at RM House. He was going to stay and update me on ANYTHING that happened.
I got in the car and just began to sob, scream, hit the steering wheel. Then I began to pray, pulled myself together, turned on my worship music, drove and prayed some more.
Kevin then called me and said that the vent change the doctor ordered during the whole ordeal showed a difference in her CO2 and so they ordered another vent change and blood gas. That showed another change in the levels and the doctor was sure it was that her lungs just decided to work. Her blood gases continued to show improvement with each change they made to the vent. Thank you Jesus!!!
I am sure that this is not the last time I will say this but GLORY TO GOD!!!!! I still have my daughter, she is stable for right now. Thank you for all the prayers.... I cannot say this enough. Thank you thank you thank you!!!!!
All of that being said I want to thank all of those who had a hand in providing a special Christmas for Alex, Kylie, and Ian. I came home to a beautiful tree with presents wrapped under it, food in the fridge and pantry, and a clean home. I cannot say what a HUGE blessing this has been. It has been a rough 3 weeks and it is not over yet, but this was a huge relief to me, and made a huge impact in our lives. God Bless you!!! Pictures of Christmas smiles coming soon.
A short time later Dr. P came back and said that we were making some head way with her stability but there wasn't much more that they could do with the vent or meds and it was a possibility that her heart could stop. If that happened it would not benefit her to do cpr to bring her back and basically would we sign a DNR. I could not believe that he was asking me this with things being so rocky after surgery for anyone why would she not be worth trying to save during this difficult recovery time. I told him I couldn't answer that and just cried and prayed at Averi's bedside.... and cried and prayed. I was so torn between wanting my baby and feeling like maybe I was being selfish. She was stable and the nurse said we needed to take a break, eat something and talk. We did so and came back.
We walked in and not even 5 minutes later her blood pressure shot up and her heart rate dropped and dropped. The nurse froze and called another nurse, who called the nurse in charge, who called a doctor. He told them to administer some drugs (one that keeps the brain from bleeding)and something else (dont remember what). This doctor just walked in the door for the night shift. The nurse called out and said pupils are fixed and dialated...nonresponsive. She then took the time during this to ask about the DNR if her heart rate dropped again. I told her no! She rolled her eyes and walked away. Something in my heart just blurted out NO!!! The doctor ordered a blood gas and they checked her blood sugar. It was way high. Her blood pressure and heart rate seemed to stablize.
The doctor said it was one of a few things, one he ruled out pretty immediately, the other 2 were brain damage because her brain was not telling the body to produce carbon dioxide anymore (the blood gas showed it was way LOW after being way HIGH) or it was her lungs just deciding to work which triggered the way low CO2 which then caused the lungs to constrict putting way to much pressure on her heart causing the dropped heart rate and high blood pressure. If it was brain damage there was nothing they could do. The nurse that asked about the DNR said again pupils are fixed, dialated and nonresponsive.
We sat there in the room for a while and I decided we needed to be together as a family, so I told Kevin I was gonna go home take a nap wrap gifts back up the car and we were going to spend Christmas as a family at RM House. He was going to stay and update me on ANYTHING that happened.
I got in the car and just began to sob, scream, hit the steering wheel. Then I began to pray, pulled myself together, turned on my worship music, drove and prayed some more.
Kevin then called me and said that the vent change the doctor ordered during the whole ordeal showed a difference in her CO2 and so they ordered another vent change and blood gas. That showed another change in the levels and the doctor was sure it was that her lungs just decided to work. Her blood gases continued to show improvement with each change they made to the vent. Thank you Jesus!!!
I am sure that this is not the last time I will say this but GLORY TO GOD!!!!! I still have my daughter, she is stable for right now. Thank you for all the prayers.... I cannot say this enough. Thank you thank you thank you!!!!!
All of that being said I want to thank all of those who had a hand in providing a special Christmas for Alex, Kylie, and Ian. I came home to a beautiful tree with presents wrapped under it, food in the fridge and pantry, and a clean home. I cannot say what a HUGE blessing this has been. It has been a rough 3 weeks and it is not over yet, but this was a huge relief to me, and made a huge impact in our lives. God Bless you!!! Pictures of Christmas smiles coming soon.
Monday, December 14, 2009
It's me
Hello, I finally have a moment to write in the blog myself. I must say a HUGE thank you to Tricia for what a tremendous job she is doing on the blog and Facebook updates (keep up the great work), as well as just being a huge resource for my questions. Tricia, I am so grateful that you are in my life and that God has blessed me with such a wonderful friend.
Things don't look great today. We called the nurse about 10am and he said that they tried during the echo to wean her ECMO and her hypertension is still there, so they had to restore the setting to where it was at. They are also concerned about the coloring in her legs. They are watching it. The lower abdomen swelling is also an issue. They are watching it. The xray showed that her left lung is almost completely collasped. She they increased one of the vent settings to try and inflate it more.
I want so badly to bring my baby home. The unknown is killing me. I know God is trying to teach me to have faith, trust, and hope in Him. To leave it in His hands, I have never felt at the mercy of anyone, and I feel at the mercy of everyone now. Ok, I just realized I haven't taken my medicine. I will not keeo rambling on but when I read in other blogs the personal feelings of the parents I related and felt relieved and not so alone.
Thank you for all of the continued prayers. God has truly blessed me with amazing people praying for Averi!!!
Things don't look great today. We called the nurse about 10am and he said that they tried during the echo to wean her ECMO and her hypertension is still there, so they had to restore the setting to where it was at. They are also concerned about the coloring in her legs. They are watching it. The lower abdomen swelling is also an issue. They are watching it. The xray showed that her left lung is almost completely collasped. She they increased one of the vent settings to try and inflate it more.
I want so badly to bring my baby home. The unknown is killing me. I know God is trying to teach me to have faith, trust, and hope in Him. To leave it in His hands, I have never felt at the mercy of anyone, and I feel at the mercy of everyone now. Ok, I just realized I haven't taken my medicine. I will not keeo rambling on but when I read in other blogs the personal feelings of the parents I related and felt relieved and not so alone.
Thank you for all of the continued prayers. God has truly blessed me with amazing people praying for Averi!!!
Wednesday, November 11, 2009
3 hour test
The 3 hour Glucose test was brutal!!!! They poked my 5 times!!!! That wasn't the hard part it was sitting in the waiting room for 3 hours trying not to fall asleep. I should get the results back on Monday.
I am still having contractions off and on and losing parts of the nasty plug. My doctor said I have to rest!!!! Easier said than done, but I am forcing myself to sit and rest or lay down if I feel them. It is not time for Averi to come so I know how important it is. We only have 3 more doctor's appointments before we get induced. I am more and more nervous and anxious as we get closer and struggle at times to stay positive, especially when I hear about more CDH babies recently passing. It's so sad and hard to hear because there really is just no way to know what will happen with Averi, or any other CDH baby. All we can do is leave it in God's hands and trust that he knows what's best and that there is a plan. I know this in my heart and soul, but sometimes my brain takes over. I just pray more everyday. We are blessed, and I have so very much to be thankful for.
Thank you for your continued prayers.
I am still having contractions off and on and losing parts of the nasty plug. My doctor said I have to rest!!!! Easier said than done, but I am forcing myself to sit and rest or lay down if I feel them. It is not time for Averi to come so I know how important it is. We only have 3 more doctor's appointments before we get induced. I am more and more nervous and anxious as we get closer and struggle at times to stay positive, especially when I hear about more CDH babies recently passing. It's so sad and hard to hear because there really is just no way to know what will happen with Averi, or any other CDH baby. All we can do is leave it in God's hands and trust that he knows what's best and that there is a plan. I know this in my heart and soul, but sometimes my brain takes over. I just pray more everyday. We are blessed, and I have so very much to be thankful for.
Thank you for your continued prayers.
Subscribe to:
Posts (Atom)