Today was my first day back at work. Overall, not too bad. I am very close to the hospital so I can easily visit at lunch and after work. We'll reassess my thoughts on work once I get fully back into the swing of things and have to think business on a regular basis.
It was hard to leave at lunch today because Rhys was at 90% oxygen (down from 100%!). Last night he had a few episodes of desatting and dropping his heart rate. A few times he had to be hand bagged to bring up his sats. His vent tube wasn't taped very well so they corrected the position (it was too far in) and taped the heck out of it to keep it from moving. The nurse today said he hadn't had any more episodes of dropping his heart rate since the tube was repositioned, but he was still occasionally desatting into high 60s, which is better than dropping into the 30s! He did require a little ativan today, but that seemed to help him relax enough to calm him down. Needless to say we are holding off on the vaccines until he feels a little better.
His vent settings were increased a tiny bit. One increase was related to the pressure at which the machine helps him take his spontaneous (breaths he takes above the vent) breaths. Think if you were trying to breath through a straw. It is more difficult and requires a greater amount of effort. Rhys' vent has support that helps him when he breathes on his own and this is what was increased. His albuterol is now at every 6 hours and they are assessing his caffeine dose because the doctor doesn't think he's maintaining a constant level of bpm over the vent. Actually I don't think we've mentioned this before, but he is getting a maintenance dose of caffeine to keep him consistently breathing over the vent. So much for not giving him sodas. I asked the doctor if this was Rhys being lazy and he got a good laugh and said it was him acting his age.
EEG results are back and they are clean thank goodness. No signs of seizure activity. The eye doctor hadn't rounded on him when we left this afternoon, but I am hoping she was going to see him tonight. I am anxious to see what this exam reveals. The last notes I saw were stage 2 ROP in both eyes. Again, this isn't surprising, and it doesn't necessarily mean he will need surgery, but he is definitely in the high risk category. They are also increasing the calories in his milk. He will now have his milk fortified to 27 calories per ounce instead of 24.
Cody and I are starting to feel the exhaustion of the NICU. I felt a huge wave today. We are so happy that Rhys is doing better, but it is so mentally exhausting having to live this life. No one truly understands unless they've been through it. You can try and you can think you understand, but unfortunately you just don't. I am also tired of seeing every pregnant person in the hospital and every twin stroller. A twin came into Rhys' pod yesterday. I saw a little girl with a "thing 2" shirt on in the hall (Dr. Seuss, incidentally the theme of one of my baby showers that would have been in August). A lady in the elevator today commented on a set of twins who'd gotten off at the previous floor. How crazy that must be and how much of a handful and how much trouble they were. It took every ounce of restraint I possessed to not rage at her. It is times like this that I especially miss Bentley. I miss him as our second child, but also I miss him for what he would have been to Rhys. It just doesn't seem fair because I did everything right in my pregnancy. I took care of myself and of the babies and of my body and look what happens to me when there are idiots out there who beat and neglect their children. I know I shouldn't but I get so angry at the people who have it so good and just don't appreciate it. Why do bad things happen to good people? I have seen that countless times in the relationships we've formed in the NICU. Parents who desperately want their babies and tried so hard to get them, only to have them born much too soon. It just is not fair.
It was hard to leave at lunch today because Rhys was at 90% oxygen (down from 100%!). Last night he had a few episodes of desatting and dropping his heart rate. A few times he had to be hand bagged to bring up his sats. His vent tube wasn't taped very well so they corrected the position (it was too far in) and taped the heck out of it to keep it from moving. The nurse today said he hadn't had any more episodes of dropping his heart rate since the tube was repositioned, but he was still occasionally desatting into high 60s, which is better than dropping into the 30s! He did require a little ativan today, but that seemed to help him relax enough to calm him down. Needless to say we are holding off on the vaccines until he feels a little better.
His vent settings were increased a tiny bit. One increase was related to the pressure at which the machine helps him take his spontaneous (breaths he takes above the vent) breaths. Think if you were trying to breath through a straw. It is more difficult and requires a greater amount of effort. Rhys' vent has support that helps him when he breathes on his own and this is what was increased. His albuterol is now at every 6 hours and they are assessing his caffeine dose because the doctor doesn't think he's maintaining a constant level of bpm over the vent. Actually I don't think we've mentioned this before, but he is getting a maintenance dose of caffeine to keep him consistently breathing over the vent. So much for not giving him sodas. I asked the doctor if this was Rhys being lazy and he got a good laugh and said it was him acting his age.
EEG results are back and they are clean thank goodness. No signs of seizure activity. The eye doctor hadn't rounded on him when we left this afternoon, but I am hoping she was going to see him tonight. I am anxious to see what this exam reveals. The last notes I saw were stage 2 ROP in both eyes. Again, this isn't surprising, and it doesn't necessarily mean he will need surgery, but he is definitely in the high risk category. They are also increasing the calories in his milk. He will now have his milk fortified to 27 calories per ounce instead of 24.
Cody and I are starting to feel the exhaustion of the NICU. I felt a huge wave today. We are so happy that Rhys is doing better, but it is so mentally exhausting having to live this life. No one truly understands unless they've been through it. You can try and you can think you understand, but unfortunately you just don't. I am also tired of seeing every pregnant person in the hospital and every twin stroller. A twin came into Rhys' pod yesterday. I saw a little girl with a "thing 2" shirt on in the hall (Dr. Seuss, incidentally the theme of one of my baby showers that would have been in August). A lady in the elevator today commented on a set of twins who'd gotten off at the previous floor. How crazy that must be and how much of a handful and how much trouble they were. It took every ounce of restraint I possessed to not rage at her. It is times like this that I especially miss Bentley. I miss him as our second child, but also I miss him for what he would have been to Rhys. It just doesn't seem fair because I did everything right in my pregnancy. I took care of myself and of the babies and of my body and look what happens to me when there are idiots out there who beat and neglect their children. I know I shouldn't but I get so angry at the people who have it so good and just don't appreciate it. Why do bad things happen to good people? I have seen that countless times in the relationships we've formed in the NICU. Parents who desperately want their babies and tried so hard to get them, only to have them born much too soon. It just is not fair.
7 comments:
It was almost as if you were reading my thoughts. I feel the same way about seeing pregnant people and it seems lately that everyone is having twins (especially celebrities.) It's so hard when you know that you did everything right. I wish I could say it gets better, but unfortunately, a year later, it's still hard. I wish Logan was here not just for me, but to be with his twin sister. Not too many go through what we've gone through, but there are a few of us out here. At times it feels like it, but you are not entirely alone. Thinking and praying for you each day.
Candice,
Hang in there. I know it must be frustrating...I can't imagine having to play the hand you have been dealt. You and Cody are so strong, and have handled this with such grace. Know that you are all in our thoughts.
Debi & Tim
Candice, draw strength from God and from the people you know who have been through the same thing like Jodi. No one else can quite relate, except we know that we want you and Cody to be ok. You have the right to feel any way you want, but please don't let it consume you. We love you. I pray hard for answers and I know that you do to. Be strong and take care of yourself for sweet baby Rhys. Aunt Myra
I can't even imagine what you're going through. I know that there is nothing I can say to make this go away. I just want you to know that you have every right to feel the way you do and I am here if you need to vent. Stay strong, keep your head up and keep your faith. God will see you through this and give you the answers you're searching for. I love you all.
Kelli
I found your site from Parker's, Mere is my sister and I just wanted to say, thank you, you have been Mere's ROCK for the past 4 1/2 weeks and after reading what you are going through I cannot imagine what you are feeling and still caring so much for my sister and her baby, there is a special place in heaven for Bentley and he is with you everyday and watching over his brother, God bless you and your family
You are right, it's not fair. You two are amazing parents. You and Cody rest if you can. I can't imagine how exhausted you are. Call anytime I love talking to you. I'm down the street, literally. Let me know if there is anything I can do! You are right... many people take their blessings for granted, daily. Keep your head up! We love you all!
Angie
Candice,
It's common to have floods of feelings of sadness, anger and frustration. I'm glad that you're able to express yourself. You will always mourn the loss of Bently. The struggles that Rhys must overcome are also hard to take.
I have seen you and Cody 'hold it together' many times. I've been proud of you! You also have to take care of yourselves.
Know that you have support from many directions.
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