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Cedar is here - Page 3

post #41 of 84
Quote:
Originally Posted by wombatclay View Post
Small update:

Baby Cedar has moved to a larger hospital for treatment and I know Raene doesn't have computer access from there. Cedar and her family are facing a number of challenges in the next few days so please keep those thoughts and prayers coming.
Oh my gosh. I'm glad Cedar is in a big hospital, do they have a diagnosis yet? Stay strong Cedar and family!
post #42 of 84
Raene Sending you and Cedar healing vibes. You are in my thoughts.
post #43 of 84
Thanks for the update. Thinking of little Cedar and her family.
post #44 of 84
Poor thing. I hope the baby is well soon!
post #45 of 84
Raene, you and your family are in my thoughts. We're sending lots of strength and love out to baby Cedar.

xoxo
post #46 of 84
My thoughts and prayers are with you and your family!
post #47 of 84
prayers for you all.Stay strong mama.
post #48 of 84
We are thinking of your family, Raene, and sending healing energy to Cedar!
post #49 of 84
Still keeping you in our thoughts Raene. s
post #50 of 84
Sending good thought and big hugs. Lots of strength to you and baby Cedar!
post #51 of 84
Thread Starter 
Thanks for all the thoughts and prayers.

While we don't have an actual diagnosis yet, but she has a chromosomal abnormality. She will most likely never lead a "normal" life.

The worst of all this is how the hospital treats her like a lab rat and not a human, and how they don't hold or touch the babies unless they are taking blood or changing diapers.

She's been x-rayed, had ultrasounds, been poked about 200 times...and we just want her home with us. We aren't even allowed to hold her ourselves b/c she needs to be under the bili lights.

It's all such a sad nightmare. My poor, poor baby just suffers.
post #52 of 84
I am so sorry! She is your sweet and precious babe. You momma ties go so deep. She knows you're there for her.
post #53 of 84
I am so sorry this is all going on. We are still keeping you and your babe in our payers.
post #54 of 84
I'm very sorry this is happening. I will pray for strength for Cedar, and for you to be there for her throughout this, at her side even if you can't hold her like you want to. She'll know you're there and that you love her and are giving her the strength to grow and thrive.
post #55 of 84
Quote:
Originally Posted by Raene View Post
The worst of all this is how the hospital treats her like a lab rat and not a human, and how they don't hold or touch the babies unless they are taking blood or changing diapers.

She's been x-rayed, had ultrasounds, been poked about 200 times...and we just want her home with us. We aren't even allowed to hold her ourselves b/c she needs to be under the bili lights.

It's all such a sad nightmare. My poor, poor baby just suffers.
Oh I know how hard it is to watch your baby while you feel helpless because you cannot comfort her. Please know though that the nurses and doctors are not torturing your sweet little one - there is probably a very good medical reason that she is not held more. Often babies that need advanced care in the NICU need to be kept stress free so that they can use all of their energy to grow and heal and often just being touched too often can stress them out. When my baby had her brief NICU stay I found that asking questions of those who cared for her in my absence helped me to understand what was happening with her care better than just assuming I understood what their reasons were.

Hope you are able to hold her more very soon.
post #56 of 84
Quote:
Originally Posted by TCMoulton View Post
Oh I know how hard it is to watch your baby while you feel helpless because you cannot comfort her. Please know though that the nurses and doctors are not torturing your sweet little one - there is probably a very good medical reason that she is not held more. Often babies that need advanced care in the NICU need to be kept stress free so that they can use all of their energy to grow and heal and often just being touched too often can stress them out. When my baby had her brief NICU stay I found that asking questions of those who cared for her in my absence helped me to understand what was happening with her care better than just assuming I understood what their reasons were.

Hope you are able to hold her more very soon.
Yeah that.
We couldn't hold DS2 after heart surgery for 7 days because he was too medically fragile. Picking him up increased his heart rate and lowered his oxygen saturations and he had to go on higher oxygen, which ultimately lengthened his stay.

I can completely relate to your feelings as a natural mom. Having a child who needs loads of medical care is a tough pill to swallow, especially when the medical condition is something you know little about. But the medical staff is there to help your baby, please know that! Interact with them and ask for a patient advocate if you need one. It is totally within your legal rights to find out what is going on and to be a part of the baby's care and decision-making process.

I was extremely involved while my DS2 was in the ICU. I kept a journal of all his meds, procedures, and anything else he underwent. It helped me to feel like I was a part of his recovery - that and pumping. Breastmilk can be the difference between life and death, so I pumped religiously. When I felt helpless I pumped. It was all I could contribute and it helped a lot. The nurses told me that they think the breastmilk accounted for his speedy recovery and I believe it too.

Have they talked about putting in an arterial line for blood draws? My son needed several blood draws an hour in the beginning so they put a line directly into his artery so it was not painful when he needed to have blood taken. Also, you should be allowed to touch your baby even if you cannot hold her right now. Touch her often and talk to her. She knows your voice, she NEEDS to hear it. It will soothe her. I used to read books to my son or just talk to him about all of the wonderful things that were waiting for him when he came home.

Be involved mama, for the sake of your baby. Babies with very involved parents tend to get better care in my experience. We became very good friends with our son's nursing staff and they went above and beyond. They even used to call me during my midnight pumping session every night to update me on his status. If you need help ask for it. The medical staff is there to help you too and emotional support is a big part of having a child in the ICU, so ask for help if you feel you need it.
post #57 of 84
Does Cedar have a primary nurse? This is your first place to look for help. I wish you strength to come through this crisis and help your baby. To Cedar I send healing energy and clearing bilirubin energy.
post #58 of 84
Quote:
Originally Posted by AutumnMoonfire View Post
Does Cedar have a primary nurse? This is your first place to look for help. I wish you strength to come through this crisis and help your baby. To Cedar I send healing energy and clearing bilirubin energy.
Find the social worker for the NICU, the patient advocate, and the lactation consultant they are the staff who can help you and there to serve you and your family in this very difficult and scary time.
post #59 of 84


Continuing to send love to your little Cedar and strength to you.
post #60 of 84
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