Please be praying for little Emma Rose

erinh84

Hey June Ladies. I posted about my daughter Emma in our fb group, but I thought I would post on TB as well since I'm killing time in the NICU waiting for them to give the ok to see Emma again. I also figured we could use all of the prayers we can get.

Emma Rose is currently in the NICU at The Children's Medical Center of Dallas. She will be here for a minimum of a month, but it could be several. I was diagnosed group b strep positive while I was pregnant, and even though it was treated during my labor with Emma, not all of it cleared up. Emma has had the virus since birth, and it was only a matter of time before it reared its ugly head. Because of the group b, Emma is currently fighting a severe case of meningitis. She also has a pocket of fluid on her brain and there could possibly be long term effects or brain damage. 

She started having seizures yesterday morning and she stopped breathing for 20 seconds. I immediately called 911 and they rushed her to the hospital. She had several sezuires at the hospital and was transferred to the Dallas children's hospital. They've been taking great care of her here and I honestly wouldn't want her to be anywhere else. Please be praying for Emma and my family. This has been the most nerve wracking 36 hours of my life, but I know God is in control and I'm praying for complete healing for my LO. Thanks ladies.

mamaelle27

@erinh84 So sorry to hear that you and your beautiful little girl are going through this. Prayers for a speedy recovery. Please keep us posted.   

Stankonia2014

Praying for sweet Emma Rose.

kitty21436

Praying for Emma Rose's recovery and extra strength for you and your family during this time. ❤

Xath

Oh @erinh84 my thoughts are with you and sweet Emma Rose.  Molly was just discharged on Sunday after her bout with meningitis and those first days were terrifying.  I hope she responds well to the treatment and you are able to go home with no long-term negative effects. 

One thing I'd recommend to you is to see if your NICU has an attached psychologist; our hospital had one available to family members and it was so helpful to have the ability to check in with someone for coping techniques and a sanity check.  

lovesclimbing

Oh goodness, I'm sorry you're going through this. I hope she gets well soon!

kswiger06

What sad news to hear.  I'll be praying for your sweet baby girl to fight this off quickly, with no long term affects. And I'll be keeping your whole family in my thoughts as well.   

kdanjou

Thoughts and prayers to you and your family.  I'm so sad to hear you are going through this. 

EmeraldNC

Xath said:

Oh @erinh84 my thoughts are with you and sweet Emma Rose.  Molly was just discharged on Sunday after her bout with meningitis and those first days were terrifying.  I hope she responds well to the treatment and you are able to go home with no long-term negative effects. 

One thing I'd recommend to you is to see if your NICU has an attached psychologist; our hospital had one available to family members and it was so helpful to have the ability to check in with someone for coping techniques and a sanity check.  

This is a great recommendation. When my son was in the NICU I went to my therapist several times to check in and work through my feelings. Being in the NICU is a horrific experience. Hugs momma! 

erinh84

EmeraldNC said:

Xath said:

Oh @erinh84 my thoughts are with you and sweet Emma Rose.  Molly was just discharged on Sunday after her bout with meningitis and those first days were terrifying.  I hope she responds well to the treatment and you are able to go home with no long-term negative effects. 

One thing I'd recommend to you is to see if your NICU has an attached psychologist; our hospital had one available to family members and it was so helpful to have the ability to check in with someone for coping techniques and a sanity check.  

This is a great recommendation. When my son was in the NICU I went to my therapist several times to check in and work through my feelings. Being in the NICU is a horrific experience. Hugs momma! 

Thanks for the suggestions I'm going to be checking into this today.

LAMCH1980

Sending you prayers for that beautiful baby girl! ❤️❤️❤️

gabadoo

@erinh84, sending you healing thoughts and prayers. So sorry that you are going through this. Late-onset GBS is so unpredictable, but hoping that sweet Emma responds well to the antibiotics and that the seizures are short-lived. Dallas Children's is an amazing institution, so I know you both are in good hands. Please keep us updated on her progress and feel free to reach out to me if you have any questions on the medical side of things (I'm a pediatric emergency medicine physician). 

WeddingNotes13

I am so sorry to hear this and will keep you both in my prayers. Love that you are looking to check in with the therapist. Taking care of yourself is so important for Emma.

Stankonia2014

Xath said:

Oh @erinh84 my thoughts are with you and sweet Emma Rose.  Molly was just discharged on Sunday after her bout with meningitis and those first days were terrifying.  I hope she responds well to the treatment and you are able to go home with no long-term negative effects. 

One thing I'd recommend to you is to see if your NICU has an attached psychologist; our hospital had one available to family members and it was so helpful to have the ability to check in with someone for coping techniques and a sanity check.  

So glad to hear Molly has been discharged. Hope she continues to do well.

doodleoodle

Praying for you and your sweet baby ❤️️

Xath

How are you guys doing today @erinh84?

MrsCaliRN

Thoughts and prayers going up for you and your baby girl. Thank you so much for sharing with us as I know this time is more than difficult for you and your family. Stay strong, momma! Please don't forget to share updates with us, too!

Waiting4Fred

@erinh84 Any update on your precious girl? She has been on my mind. 

erinh84

Hey ladies. Sorry I forgot to update. I'm heading in to see Emma now and I'll post an update when I get there. Thank you for praying for my LO. 

erinh84

Emma is doing better. She has a nasty case of meningitis and she also has a some fluid on her brain, but they are both being heavily treated with antibiotics and she seems to be responding well to them. She has been sezuire free since Sunday, but she will be on sezuire medication long term. Emma has a long road ahead of her. She will be here in the NICU for a month minimum and there is a good chance she could have long term effects or brain damage, but I'm believing God is with my little one and we're praying for complete healing. Thank you for keeping Emma in your prayers.

wifeinraleigh28

Your positivity is very admirable, Erin! So glad to hear that sweet Emma is doing better!

Xath

I'm glad she's doing so well!  Babies' brains are incredibly malleable at this age; I hope you're able to come through this with no long term impact.

erinh84

We got Emma's MRI results yesterday . It's not good. The MRI shows that Emma has significant brain damage and the fluid from the meningitis has eaten away at a lot of her brain tissue. They are very concerned about her hearing. She has severe damage to the part of the brain that effects her hearing and they believe she is already experiencing hearing loss and she may completely lose her hearing. There is no way to know right now how this all will effect her in the future, but they are preparing us that she will need extensive therapies in the future and to be preparing ourselves for all of our daughters special needs. I am just beside myself right now, but I'm choosing to still believe that God is in control. Please be praying for Emma and our family.

kdanjou

Still praying for you!  Emma is in my thoughts all the time. 

WeddingNotes13

Keeping you both in my prayers. That is a lot to take in and prepare for. 

Xath

Creepy internet hugs to you @erinh84.  That must be a lot to process.  Keeping you both in my thoughts.

kswiger06

I'm sorry about the results. My continued thoughts and prayers are with you and your LO. The best thoughts and wishes that once everything clears up, she bounces back with no long term effects or damage.   

erinh84

Emma update: Sorry, this is a little lengthy. Emma's doctor just came in to go over everything with me a little more in depth than Yesterday. Obviously the results of her MRI are not what we hoped for. She does have pretty extensive brain damage and also a lot of damaged brain tissue due to the fluid on her brain from the meningitis. However, the doctor wanted me to know that they have seen far worse brain damage from meningitis caused by Group B Strep during pregnancy and they have no doubt that Emma is strong and she will work to hard overcome this. They are still very worried about Emma's hearing, she has a lot of damage to the brain tissue that effects it and they will be doing a hearing test in the next few days. Emma is getting physical, speech and occupational therapy every day now and they have seen some positive signs. She is responding well to my voice and sucking on her paci and fingers a lot. The doctors have been preparing us that she will need extensive therapy possibly throughout her life and that she may have a lot of special needs. However, we remain cautiously optimistic that she will pull through this and we know and believe that God has a plan in all of this. Emma will be getting all of the therapies the first few years of her life regardless, and if she ends up not needing them in the future, wonderful, but it still can't hurt for her to have them. We want to set her up to be as successful as possible. They want Alex and me to both sit down with their team and the neurologist this weekend so we can review the MRI and start working on an action plan for Emma. As far as her seizures go, she is still on a high dose of 2 different seizure meds and she will be on them long term. She has had a fever off and on since last night and her temperature was high when I got here. They gave her Tylenol and they are going to be doing a blood and urine culture to make sure the fevers are not anything concerning. Please continue to pray for little Emma Rose and my family. It has been a trying 24 hours since we found out the MRI results. No one ever expects to be in this awful situation, but we know God is with Emma and we can only pray and believe that good things can come out of a hard situation. We are still praying for complete healing for our little one. Thank you for all of your support during this difficult time.

WeddingNotes13

It sounds like you have such a wonderful attitude and team! How great that she is already showing such positive signs! Will continue to pray for your family and team.

kswiger06

Thank you for the update. Emma is on my mind often. It breaks my heart for you and your family stuck in this long term waiting game. I hope after meeting with the neurologist and team that there will be more comfort after further discussion. I'm so happy to hear there are positive signs in the physical and speech therapies. Stay strong mama, you and Emma are in my thoughts and prayers. ((Hugs)) 

erinh84

kswiger06 said:

Thank you for the update. Emma is on my mind often. It breaks my heart for you and your family stuck in this long term waiting game. I hope after meeting with the neurologist and team that there will be more comfort after further discussion. I'm so happy to hear there are positive signs in the physical and speech therapies. Stay strong mama, you and Emma are in my thoughts and prayers. ((Hugs)) 

Thanks so much.❤️

kdanjou

Thank you for the update!  You are doing a wonderful job being a great mom to Emma.  Hoping for the best outcome for you.

JennMof3

Praying for your sweet baby girl Emma and your whole family. She has the most precious eyes. 

Meningitus has touched our family in the past. My husband shared that when his Mother had it they were worried about her being blind and deaf after the disease. She also showed damage on her brain scans from the disease. While I didn't know her before the disease, I can tell you she spoke normal, was a very smart woman, and no one could tell her she couldn't do ANYTHING. She drove, cooked, canned and was really into crafts, painting and beautiful sewing projects.

Because of the damage to her brain she did take seizure medications. Her seizures were managed very well through the meds and she lived a pretty normal life. Her strong belief in God helped her tramendously whenever times were rough. She was truly an inspirational woman. 

You've shown through your messages that you're a strong momma and your little one is a fighter. She is so lucky to have a great support system and doctors. 

erinh84

JennMof3 said:

Praying for your sweet baby girl Emma and your whole family. She has the most precious eyes. 

Meningitus has touched our family in the past. My husband shared that when his Mother had it they were worried about her being blind and deaf after the disease. She also showed damage on her brain scans from the disease. While I didn't know her before the disease, I can tell you she spoke normal, was a very smart woman, and no one could tell her she couldn't do ANYTHING. She drove, cooked, canned and was really into crafts, painting and beautiful sewing projects.

Because of the damage to her brain she did take seizure medications. Her seizures were managed very well through the meds and she lived a pretty normal life. Her strong belief in God helped her tramendously whenever times were rough. She was truly an inspirational woman. 

You've shown through your messages that you're a strong momma and your little one is a fighter. She is so lucky to have a great support system and doctors. 

Thank you so much❤️

SouthernMama15

@erinh84 I've been following your story, lurking from August. Your sweet girl and your family, as well as all as the specialists are in my prayers. May God touch the hands of everyone treating her. She is a beautiful girl and blessed to have a mama with such strong faith. I will keep you all in my prayers.  

mamaelle27

@erinh84 Sending you support and prayers. You are a strong mama and have a strong baby girl.

gabadoo

Sending positive thoughts and healing prayers, @erinh84! 

SpongeWorthy

Oh @erinh84 I am so sorry you are going through this ordeal.  I'm glad to hear her doctors think she can pull through.  You are doing a great job by getting her early intervention therapies set up already.  Emma is lucky to have such a strong mama on her team.  Keeping your family in my thoughts.   From one NICU mom to another.

erinh84

Emma update: I got to feed Emma her very first bottle today since she's been in the NICU. She's been on a feeding tube since she's been here, and her team of doctors warned us early on that a lot of babies with group b strep meningitis never relearn to feed again and have to stay on a feeding tube Long term. I'm happy to report that Emma will not be one of those babies. Her motor skills are excellent right now and she's been sucking on her paci and her fingers like a champ. Her speech therapist is very impressed and we're excited to see all of Emma's progress in the future. Please continue praying for Emma and my family, but I'm happy that I get to report some good news today. 

Eta: she will still be on the feeding tube until she gets used to completely being on the bottle again. Fx that it won't be too long.

Xath

That's wonderful news!  I'm so glad you were able to feed her. I hope she's able to wean off the feeding tube and continues to improve.

kswiger06

That's so exciting! It must feel wonderful to get to feed her  I hope that she continues to make positive progress, and that you will get to feed your baby 100% of the time soon. My continued thoughts and prayers, but it is great to hear a happy update