It has been a while since I have updated on Cleo's Blog, things have changed- but slowly.
Today Cleo has been in the NICU for 66 days that is 1584 hours, that is 95,050 minutes of experiencing every emotion possible.
She is now 4 pounds and 8 ounces and is holding close to it over the last few days, she is 17 inches long. Almost as long as a regular term baby, though she sits on the slender side a bit. To me she is big!
We are coming out of the darkness little by little. Cleo is that bright spot in this wait.
She has been able to take all of her food on her own and is on what they call "lib feedings". Which now means she asks for all of her food when she is hungry. No more tube down her nose to her stomach. We are very pleased with her progress.
She has had fewer spells of Apnea and Bradycardia (A and Bs). ----Apnea: Stop breathing and Bradycardia: Heart slows. These are graded from 0-3. Zero means she starts breathing on her own with no stimulation up to 3 means: needing to have basically CPR via Bag and CPAP machine. Scarey indeed.
Her spells of A and Bs have been fewer, but when she does have them they are worse. She has been having 1 and 2s and yesterday she needed to be bagged it was a grade 3.
The doctors and nurses believe that she has severe reflux and stops breathing to prevent the burning that comes up her throat. Can't say that I blame her. She has now been put on some medication to help smooth her burning esophagus and another to neutralize the acid, so that it doesn't burn her throat. We are hopeful that this will help her breathing problems.
She has to have NO Spells of A and Bs for 7 full days, and every day that she has one, the count starts over. When she reaches this seven days it doesn't really mean that she comes home even still.
She has yet another obstacle to overcome.
Her eyes need to vasculate completely before she can come home, if she is on oxygen.
If she is not on oxygen then she can come home as an outpatient to check her eyes.
Oxygen that she receives needs to be controlled as her eyes heal.
To not be on oxygen she can not have A and Bs and her she must have few de-saturations, this is the flow of Oxygen in her blood. Fluctuation of oxygen is normal we all do it every day, but she needs to have it come back up, these can be effected by the apnea and Brachycardia as well.
So Cleo is doing well in required areas of her development and will be coming home to us soon.
Likely not as soon as we would like though.
If she is off of oxygen then she can come home if her eyes are not finished maturing. However, if she still needs oxygen when she comes home her eyes must completely be vascularized. This can take the longest and the eyes may be all that keeps her there. They have even said this could take beyond her due date.
Now, I am going to be completely candid, I don't think I will handle it well as her due date comes and goes and we are still in the hospital. Frustration mounts each day that she slips backwards with her breathing issues, because that adds another day to our stay.
I have been there when she has had her issues and I will say they are scarey. It would not be good to have her home with those issues unresolved, if I do not have the equipment to handle an extreme case of her A and Bs then there is a possibility of death. With that in mind, I can strengthen my resolve to be more patient.
It is hard to accept though, that had she been developing inside me as she should have been that she could be born today and come home with me. I have to PUSH down that poisonous thought, it is damaging to my very soul, and gives me NO strength.
We have come this far and we have really overcome so much, to entertain thoughts of regret, should ofs, if onlys and what ifs will only pull me down.
Instead, I need to remember that this baby was meant to be, I had the courage to bring her into this world despite the risks. she is thriving, not on her own yet, but is thriving.
The waiting is very hard, but she is in good hands. If I must wait to have her home, GOD just give me strength to be nice and kind to everyone around me...as I am not on my best behavior these days.
My heart is being pulled in two directions and it is exhausting. Sleep is sporadic and my temper and patience is tried on every turn.
This last stretch seems to be the hardest part. I suppose I'd feel somewhat the same way if I were pregnant as well....
So when you pray for us, pray that she will no longer stop breathing and that I can have the strength to carry this heavy load.
Today Cleo has been in the NICU for 66 days that is 1584 hours, that is 95,050 minutes of experiencing every emotion possible.
She is now 4 pounds and 8 ounces and is holding close to it over the last few days, she is 17 inches long. Almost as long as a regular term baby, though she sits on the slender side a bit. To me she is big!
We are coming out of the darkness little by little. Cleo is that bright spot in this wait.
She has been able to take all of her food on her own and is on what they call "lib feedings". Which now means she asks for all of her food when she is hungry. No more tube down her nose to her stomach. We are very pleased with her progress.
She has had fewer spells of Apnea and Bradycardia (A and Bs). ----Apnea: Stop breathing and Bradycardia: Heart slows. These are graded from 0-3. Zero means she starts breathing on her own with no stimulation up to 3 means: needing to have basically CPR via Bag and CPAP machine. Scarey indeed.
Her spells of A and Bs have been fewer, but when she does have them they are worse. She has been having 1 and 2s and yesterday she needed to be bagged it was a grade 3.
The doctors and nurses believe that she has severe reflux and stops breathing to prevent the burning that comes up her throat. Can't say that I blame her. She has now been put on some medication to help smooth her burning esophagus and another to neutralize the acid, so that it doesn't burn her throat. We are hopeful that this will help her breathing problems.
She has to have NO Spells of A and Bs for 7 full days, and every day that she has one, the count starts over. When she reaches this seven days it doesn't really mean that she comes home even still.
She has yet another obstacle to overcome.
Her eyes need to vasculate completely before she can come home, if she is on oxygen.
If she is not on oxygen then she can come home as an outpatient to check her eyes.
Oxygen that she receives needs to be controlled as her eyes heal.
To not be on oxygen she can not have A and Bs and her she must have few de-saturations, this is the flow of Oxygen in her blood. Fluctuation of oxygen is normal we all do it every day, but she needs to have it come back up, these can be effected by the apnea and Brachycardia as well.
So Cleo is doing well in required areas of her development and will be coming home to us soon.
Likely not as soon as we would like though.
If she is off of oxygen then she can come home if her eyes are not finished maturing. However, if she still needs oxygen when she comes home her eyes must completely be vascularized. This can take the longest and the eyes may be all that keeps her there. They have even said this could take beyond her due date.
Now, I am going to be completely candid, I don't think I will handle it well as her due date comes and goes and we are still in the hospital. Frustration mounts each day that she slips backwards with her breathing issues, because that adds another day to our stay.
I have been there when she has had her issues and I will say they are scarey. It would not be good to have her home with those issues unresolved, if I do not have the equipment to handle an extreme case of her A and Bs then there is a possibility of death. With that in mind, I can strengthen my resolve to be more patient.
It is hard to accept though, that had she been developing inside me as she should have been that she could be born today and come home with me. I have to PUSH down that poisonous thought, it is damaging to my very soul, and gives me NO strength.
We have come this far and we have really overcome so much, to entertain thoughts of regret, should ofs, if onlys and what ifs will only pull me down.
Instead, I need to remember that this baby was meant to be, I had the courage to bring her into this world despite the risks. she is thriving, not on her own yet, but is thriving.
The waiting is very hard, but she is in good hands. If I must wait to have her home, GOD just give me strength to be nice and kind to everyone around me...as I am not on my best behavior these days.
My heart is being pulled in two directions and it is exhausting. Sleep is sporadic and my temper and patience is tried on every turn.
This last stretch seems to be the hardest part. I suppose I'd feel somewhat the same way if I were pregnant as well....
So when you pray for us, pray that she will no longer stop breathing and that I can have the strength to carry this heavy load.
My dear, sweet friend-she will come home. It is very difficult to be living in two places at the same time. We will pray for what she needs.
ReplyDeleteBeautiful mother, you just need to accept you. NOONE expects you to feel your happiest, particularly when long term illness is in the picture. You will have all the patience you require if you don't expect too much of yourself. We love you and your WHOLE family is in our prayers. May you continue to be sustained.
ReplyDeleteI so remember the feeling I had the first week Madi came home. I was so elated- but scared stiff to not have the hospital staff just inches away from me to jump in at a moment's notice. I remember feeling so grateful to have had the time to recover physically while she was in the hospital, and felt a renewal of strength to handle the changes when she did come home. Madi came home on o2, with the loud, beeping machine every second. She really hated wearing the cannula. She learned right away how to pull the tubes off her nose, and her o2 sat levels dropped a lot, but since she wasn't turning blue, we used a blow-by tube and we figrued everything was fine. And it was :) Oh- and Madi had reflux as well for the first year or so, the medication totally helped her breathe better! We will keep praying for little Cleo to get stronger every day, and for you to have the strength you need to get through this. She knows you, and I know you worry about not being with her as much as you wish you could, for that precious bonding time. She has already bonded to you very strongly, the distance doesn't separate the bond one bit.
ReplyDeleteKim