I really have no place else to talk about this, my DH and I are still reeling two days after a seemingly normal birth that spiraled into our daughter now fighting for her life.
We don't know the cause yet-but something happened and our daughter has hypoxic ischemic encephalopathy (HIE), and is currently undergoing cooling treatment to help minimize the damage to her brain. We don't know her prognosis yet-I haven't even gotten a chance to hold her. I'm still in hospital (had to have an emerg c-section), and we have 24/7 access to the NICU. The hardest thing for me is I got through this pregnancy by telling myself I will get to hold her in the end, My baby has never been held by her mother, which I'm not handling well.
Both DH and I are stunch atheists so most of the common things people say have really offended us. My mother who is a religious minded person almost lost it at the idea that God has a plan etc-she and my father are doing a great job at keeping well meaning but intrusive extended family away by dealing with them (DH's mom is also doing the same-DH's father who we are estranged from got offended when we posted on FB about not bothering us for a few days and rudely messaged DH about it actually apologized when Tim told him that yes our daughter did suffer from lack of oxygen at birth-and that we won't know her prognosis for days, first time he ever got an apology out of the man). The doctors and nurses who were all on during my birth are all having to take time off because of the trauma. Last night the resident came to speak to us, he even said he thought he'd be prepared when he had a case of this, he assumed there had to be warning signs that he would see, and then it happened. He has a 6 week old. He also can't get the sound of the resuscitation team working on her little body out of his head. I want to be mad at the doctors-but they were there with me-we shared that awful moment, and I can see in all of them how devestated they are.
It's so hard because there is no one to be mad at. I'm trying to focus on my daughter and how strong she is. Every moment she is here is makes me proud. Her fighting spirit keeps me going. She is strong so I will be strong too. All I want to do is hold her and bring her home. I will love her forever, and treasure every moment I have her.
Beatrix Louise. Born April 2 2016, 41 weeks, at 7:32am via c-section. 8lbs 1oz 18.5 inches Sorry if it's huge. I'm so proud of my warrior, she's perfect-and looks so much like her Dad!
DD: Beatrix Louise aka BeeBop. April 2 2016. H.I.E Warrior
I'm so sorry that your daughter and your family are going through this, I cannot imagine how difficult it all must be. Your daughter is beautiful and a fighter, I'll be thinking of her and please keep us updated.
I'm so so sorry this happened to your little girl. I'll will be thinking of your family and I send strength and hope and love to your little one as she continues to fight. Stay strong sweet girl.
I'm so sorry you are going through this! Recently I had a coworker who experienced the same complications. Not sure exactly when, but baby was deprived of oxygen during birth, there was an emergency C section and then baby was transferred to a nicu and they cooled baby for a few days. I can't remember all of the details, but as new parents, they were given all of the possibilities which was really hard to hear. They also experienced the waiting and not knowing. It still brings tears to all of us! However, after they re warmed baby and did an mri, everything turned out normal and he is a healthy and happy 4 month old now. I know every situation is different, but I hope that knowing you are not alone brings some comfort. Babies are so resilient! Sending positive thoughts your way.
Im so sorry that you are going through this. Our LO struggled for oxygyn for 6 minutes, and i cannot imagine the devastation of that void dragging on and on as it is for you. Good luck for your beautiful daughter you are all strong! Hopefully mamma will get her cuddles soon xx
I'm so sorry! This breaks my heart!! I am sending so many positive vibes toward your baby girl! Positive vibes change things in unbelievable ways, keep that in mind! She is beautiful and strong and I truly believe you will all make it through this!! Stay strong mama! And keep us updated!
I read this earlier this morning; you and your family have been in my thoughts and prayers ever since. Thank you for sharing her beautiful picture with y'all's story. Keep being strong and courageous, Beatrix, Mama, and Dad. Please update as you can.
So sorry that you and your family are going through this. Hold on to every moment you get with her and I'm hoping some day soon you'll be bringing your baby girl home you'll be in my thoughts, and keep us updated!
First, thank you for sharing your story. It couldn't have been easy. Second, I am extremely sorry you are going through this. Your little girl is so beautiful and a strong fighter. I am praying for your family. Please keep us updated.
Lurking from June 16 but wanted to say that I am thinking of you and your beautiful little girl. Wishing you strength and healing during this trying time. I hope that your daughter is able to go home soon.
Our son was in the NICU before we brought him home & while his cause doesn't sound quite as severe, I know how painful and scary it is. They will take great care of her there & I have no doubt she will be coming home safe and sound with you soon!
Lurking from June 16 but wanted to say that I am thinking of you and your beautiful little girl. Wishing you strength. Hope she is able to go home with you soon.
I am so sorry you and your family are going through this. Your gorgeous daughter will be in my thoughts. Babies are incredibly resilient, and nothing short of miracles! Keep your chin up. Positive healing vibes your way. ♡
Lurking from January... I'm so sorry you're going through this. My nephew had a traumatic birth, and was placed on a cooling blanket for 3 days. That cooling blanket, and the concept behind it is amazing. He'll turn 6 in May, and is the smartest kid I know--and an incredible athlete already. I have hopes that your LO will come through with little or no complications. As for the "God has a plan," thing...I am churchgoing, and when a mass shooting happened recently, our retired lady pastor got up at church and said, "The first person that says this is God's plan, I'm going to punch in the face." It is incredibly inappropriate for believers to say that to you--regardless of whether you believe or not. Kudos to your mom for shielding you. I'm sending hugs to you from here. Don't give up hope. It seems so little, but lean on us, if you need it.
No true update-Beatrix is having her MRI now. She warmed up with no complications, her heart has no damage, and her liver and kidneys are working. They haven't heard bowel sounds but she had a poop last night so something is happening.
Shes mostly off sedation and is starting to open her eyes. Got to finally wash the poop out of her hair.
After the MRI we will be having a team meeting to find out how things stand right now.
DD: Beatrix Louise aka BeeBop. April 2 2016. H.I.E Warrior
I'm so sorry that you are going through this. A friend of mine has a 2-year-old little girl with HIE. I wanted to at least pass along a resource that I know she finds helpful: https://www.hopeforhie.org/
She has Cerebral Palsy-the big thing is she can't sustain her airway. Her odds of survival depend on her being able to regulate her breathing. It is also possible she has epilepsy due to the amount of seizures she has had.
We refuse to give up on her. DH and I have a parent room in the NICU so we are close. Everything about this feels so wrong. Trying to grieve the life we thought we were going to have. Yesterday I saw my Dad cry. I've never seen him cry before.
CP doesn't mean the end of a quality of life. When we imagine someone with CP, we imaging the worst case scenario. My husband has CP, and has a master's degree in math, plays the piano, and is an active husband and father. Keep up the hope. You're loving on your baby. That's the best thing you can do for now.
I am so sorry you are going through this; I can't even begin to imagine how you must be feeling. I'm sending lots of love & positive thoughts to you, Beatrix, & your family.
Lurking from June '16. I'm so sorry you have had to go through this. It must be very scary and difficult to imagine a different kind of life for your family, but like @stephanienjer said, CP doesn't mean the end of a quality of life. I work in the disability service office of a university and our students' graduation rate is even higher than that of the general population! A positive attitude and determination goes a long way.
From your updates it sounds like this little girl is incredibly lucky to have such strong parents who love her so much. I don't doubt she'll be able to feel that and I'm so happy you're able to hold her now. She is beautiful! Wishing you strength and peace and for the very best possible outcome for Beatrix and your family.
She is adorable and is fortunate to have such a loving family. I cannot imagine how tough all of this is, but you have a beautiful fighter on your hands!
I'm so sorry that you're going through this. I just wanted to say that your daughter is beautiful and try to keep up hope, as @stephanienjer said, there are many many amazing cases of CP just like her husband.
Angel Babies 1&2 2/14/09 DS born 3/11 Angel Baby 3 6/28/11 9/5/17 BFP!! divorced October 2014 9/6/17 hCG 88 progesterone 9.1 (prometrium started) Married DH 10/15 DH's DS born 6/09 9/8/17 hCG 242!!! Not preventing since 11/15 EDD 5/8/18 Adjusted 5/15/18 TTC since 1/1/16 9/27/17 we have a heart beat!
Just wanted to say how lucky the little lady is to have you as her mommy!! You are amazingly strong, what an inspiration. Just wanted to echo the PPs with their thoughts on CP. Sending warm thoughts and hugs to you and your little fighter.
Very sorry your family is going through this. Beatrix is very lucky to have such a strong mama and daddy. Hoping the very best for all of you. Keep fighting LO.
Re: Birth Injury/Not how I expected my first few days as a Mom to be *trigger warning*
DS2 due 12/12/18
You and your family will be in my thoughts. I hope you're able to take your baby home soon.
March 2016 siggy: babies - expectation vs reality
Brian's Whovian wife (5/'09)
Autism mama!
I'm so sorry you're going through this. My nephew had a traumatic birth, and was placed on a cooling blanket for 3 days. That cooling blanket, and the concept behind it is amazing. He'll turn 6 in May, and is the smartest kid I know--and an incredible athlete already. I have hopes that your LO will come through with little or no complications.
As for the "God has a plan," thing...I am churchgoing, and when a mass shooting happened recently, our retired lady pastor got up at church and said, "The first person that says this is God's plan, I'm going to punch in the face." It is incredibly inappropriate for believers to say that to you--regardless of whether you believe or not. Kudos to your mom for shielding you.
I'm sending hugs to you from here. Don't give up hope. It seems so little, but lean on us, if you need it.
Shes mostly off sedation and is starting to open her eyes. Got to finally wash the poop out of her hair.
After the MRI we will be having a team meeting to find out how things stand right now.
DD born 2/22/12
TTC # 2 since 7/12
DX- PCOS. Currently upping Metformin dosage and preparing to meet with RE 9/5/13.
Ist medicated cycle September 2013-BFN
1st IUI November 2013-BFP Chemical Pregnancy
2nd IUI December 2013-BFN
3rd IUI January 2014-BFP! Due 10/31/2014
I'm so sorry that you are going through this. A friend of mine has a 2-year-old little girl with HIE. I wanted to at least pass along a resource that I know she finds helpful:
https://www.hopeforhie.org/
Married: Oct 20, 2013
BFP 1: Aug 31, 2015
EDD 1: May 12, 2016
DD1 Emma born May 12, 2016
An Honest Account of New Motherhood (with Postpartum Anxiety, Depression, and OCD)
BFP 2: October 07, 2019
EDD 2: June 20, 2020
We refuse to give up on her. DH and I have a parent room in the NICU so we are close. Everything about this feels so wrong. Trying to grieve the life we thought we were going to have. Yesterday I saw my Dad cry. I've never seen him cry before.
I am so sorry you are going through this; I can't even begin to imagine how you must be feeling. I'm sending lots of love & positive thoughts to you, Beatrix, & your family.
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From your updates it sounds like this little girl is incredibly lucky to have such strong parents who love her so much. I don't doubt she'll be able to feel that and I'm so happy you're able to hold her now. She is beautiful! Wishing you strength and peace and for the very best possible outcome for Beatrix and your family.
I'm so sorry you are going through this. Sending you and your little one thoughts and prayers!
I'm so sorry that you're going through this. I just wanted to say that your daughter is beautiful and try to keep up hope, as @stephanienjer said, there are many many amazing cases of CP just like her husband.
DS born 3/11
Angel Baby 3 6/28/11 9/5/17 BFP!!
divorced October 2014 9/6/17 hCG 88 progesterone 9.1 (prometrium started)
Married DH 10/15 DH's DS born 6/09 9/8/17 hCG 242!!!
Not preventing since 11/15 EDD 5/8/18 Adjusted 5/15/18
TTC since 1/1/16 9/27/17 we have a heart beat!
Im so sorry you are going through this, but am glad you are able to hold your precious little girl now. Sending lots of good thoughts your way.