I'm so very sorry you and your family have to endure this. You are an incredibly strong mom and dad for your beautiful little girl. Thoughts and prayers that things begin to improve and your little one stays strong.
Happy One Week Beatrix! She's off most medications, and still only on support breathing. They are talking of taking her off one on one care because she's doing so well. So proud of my Beebop!
Sending you t&p. From the look of the amount of lurkers here, you have half the bump community rallying behind you and your gorgeous little girl. I don't know much about cp, but agree with other pps that it is possible to have a fulfilling life with the diagnosis. Best wishes to you and your family. Xoxo
I'm so glad she's improving! Also, don't feel like you have to be strong all the time. Lean on the staff now, so when you go home with your girl (and that WILL happen, I just know it,) you can have your energy saved up. Sending your whole family hugs.
I can't put into words how much I feel for you and your family. The best I can say is to not lose hope. Just be there for her. Do as best as you can to let her know she's loved and reassure her of your presence. My LO was also an emergency csection because of his dropping heart rate. He was born and everything seemed fine for a day and a half. Before I knew it things went downhill and he was carried off to the nicu and later transferred to a different hospital. He was severely hypoglycemic, had a few episodes of cyanosis, and was having seizures. His initial ct scan told us he had swelling I his brain. Once they had his seizures under control, they were able to do an MRI and see that it wasn't swelling, it was a small bleed into his ventricles. He spent 2 1/2 weeks in the nicu for his reoccurring hypoglycemia and under observation for seizures. Despite days on end of his little heel constantly being pricked for metabolic tests and glucose monitoring, eeg's to monitor his brain activity and watching for seizures, consults from different neonatologists, endocrinologists, neurologist, physical therapist and speech therapist, there is still no explanation to why he couldn't keep his glucose levels in the normal range. He went home on 4/4. He was also on several medications and had several IV's in him. They were slowly taken away one at a time. His doctors and neurologist now expect him to have a full recovery and no long lasting effects but he will continue to receive monitoring and care to ensure his development. Throughout the whole process I was constantly reminded by everyone that newborns are very resilient and can often surprise us. Please don't lose hope. You may want to try using a lovie (sp?). Our hospital gave us one and I'd rub it daily against my skin and the nurses would place drops of breastmilk on it, so that he could smell me close by even when I had to step away. It's no where near the same as being able to hold them 24/7 and kiss them but it's a little bit of comfort that they can smell you when you have to put them back in bed.
At this time he had 2 IV's one on his foot, another on his left arm, plus a PIC line (larger IV) that you can see on his right arm because they couldn't get a line into his belly button, on oxygen and a feeding tube in his nose.
I wish so much that you didn't have to go through this or feel the pain of helplessly standing by. Your baby girl is beautiful and perfect. I'll be thinking of you and your LO and hoping for more positive news. Lots of hugs and positive thoughts to you and your family.
So sorry this is how her life started (and your life as a mom!) but so happy to see your updates that she is improving and you have been able to hold her. I can't imagine how hard it would be but she must be an incredibly strong little girl and your presence is surely helping her. Lots of thoughts coming your way. Take care of yourself so you can continue to be strong for her. The day you take her home will be such a happy one.
So sorry you and your family are going through this, but so glad to hear that she seems to be doing better and getting off some of the ivs! Hang in there momma you all are in my thoughts and prayers.
Beatrix is so beautiful! so glad to read your update! sending love and strength and healing vibes your way - keep on fighting baby Beatrix! and you are amazing, @arcanejinx!!!
March 2016 siggy: babies - expectation vs reality
Brian's Whovian wife (5/'09)
AP, BF, BW, CD, CLW, CS, ERF, Catholic mama
to Evan (7/'10), Clare (8/'11), Dean (3/'14), ^F(12/'15)^, Rose (3/'16)
*no longer a Timelord ~ WibblyWobbly BabyWaby is here!*
but i still feel bigger on the inside Autism mama!
Finally home from the hospital last Friday. Bea has an oral aversion from being Intubated so she is still on a feeding tube, and we have a million and one specialists involved but it's nice to be home.
I just wanted my baby to live and have brain activity-any level of CP is fine with me. From the early tests they believe all 4 of her limbs will be affected but we won't know until/if she starts missing milestones.
She is lovely! If you have any CP questions, please let me know. (We're not doctors, but we have personal stories that may encourage you.) I didn't know my husband growing up, but I can speak to him and his dad if you need any support!
A quick update: Beatrix is blowing all medical expectations away. We are doing a lot of therapy and interventions but she is kicking HIEs butt-nothing will stop her.
Hey everyone, Bea is now over a year old. I thought I'd pop in to give an update if anyone is curious still.
She officially has myoclonic epilepsy (though on medication she is 100% seizure free), cerebral palsy, moderate hearing loss, cortical visual impairment, and global developmental delays. She has a gtube but is mostly fed orally now, we are just starting to try more solid foods. She is happy, loves to smile and gives big belly laughs. Her CP doesn't appear to be as bad as they thought, but she still has PT/OT regularly, and she will be in a stander soon. She can't sit unassisted or roll, but her head control is getting better weekly and she is close on sitting and rolling. She loves Peppa Pig, music, going to playgroup, her new 5 in 1 bicycle, and her Grandpa. Her favorite food is mango, and she loves being naked. And farts are hilarious too. She has a team of about 15 different specialists and doctors, as she is medically complex, but overall what affects her is mild/moderate in each category, it just makes treatment a bit more complex because of so many issues. They are doing a great job of organizing and working together.
DD: Beatrix Louise aka BeeBop. April 2 2016. H.I.E Warrior
Lurker from June17 Congratulations on such a strong and beautiful little girl! It sounds like you must be super busy ensuring that she gets such good care, but what wonderful progress. I loved reading about her personality and interests. I also have an Oct 15 baby and getting to know his personality has been one of my favorite parts.
Re: Birth Injury/Not how I expected my first few days as a Mom to be *trigger warning*
wonderful to hear she is improving so much!!!
Sending you t&p. From the look of the amount of lurkers here, you have half the bump community rallying behind you and your gorgeous little girl. I don't know much about cp, but agree with other pps that it is possible to have a fulfilling life with the diagnosis. Best wishes to you and your family. Xoxo
At this time he had 2 IV's one on his foot, another on his left arm, plus a PIC line (larger IV) that you can see on his right arm because they couldn't get a line into his belly button, on oxygen and a feeding tube in his nose.
I wish so much that you didn't have to go through this or feel the pain of helplessly standing by. Your baby girl is beautiful and perfect. I'll be thinking of you and your LO and hoping for more positive news. Lots of hugs and positive thoughts to you and your family.
DS2 due 12/12/18
March 2016 siggy: babies - expectation vs reality
Brian's Whovian wife (5/'09)
Autism mama!
What a beautiful baby! So sorry you guys are going through this. Hang in there!
I just wanted my baby to live and have brain activity-any level of CP is fine with me. From the early tests they believe all 4 of her limbs will be affected but we won't know until/if she starts missing milestones.
Happy One Month Beatrix!
She officially has myoclonic epilepsy (though on medication she is 100% seizure free), cerebral palsy, moderate hearing loss, cortical visual impairment, and global developmental delays. She has a gtube but is mostly fed orally now, we are just starting to try more solid foods. She is happy, loves to smile and gives big belly laughs. Her CP doesn't appear to be as bad as they thought, but she still has PT/OT regularly, and she will be in a stander soon. She can't sit unassisted or roll, but her head control is getting better weekly and she is close on sitting and rolling. She loves Peppa Pig, music, going to playgroup, her new 5 in 1 bicycle, and her Grandpa. Her favorite food is mango, and she loves being naked. And farts are hilarious too. She has a team of about 15 different specialists and doctors, as she is medically complex, but overall what affects her is mild/moderate in each category, it just makes treatment a bit more complex because of so many issues. They are doing a great job of organizing and working together.