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My daughter's on life support. Need someone to relate to...

Natalies_mommy0609
0 Recommendations

Hi,

This story is about my beautiful daughter, Natalie.

Because of the way my previous pregnancy ended, I came into this pregnancy knowing that it was at high risk for a uterine rupture. All was well through out my current pregnancy, and I had a scheduled c-section for June 16th, 2009. Unfortunately, I went into pre-term labor again (35wks 3days) and as I feared, my uterus ruptured. I had to be rushed into the ER for yet another emergency c-section :(. My daughter, Natalie, was born on June 4th, 2009 at 10:59pm.

When my uterus ruptured, it caused my placenta to bleed, and the oxygen and blood supply to my daughter was cut off. Natalie went into distress and her heart stopped before the doctor could get her out.

After the doctor delivered her, it took 3 pediatricians 15 minutes of CPR to get her heart to start beating and another 5 minutes for her heart to stabalize and beat on its own. 20 minutes without oxygen flow to Natalie's brain.

Currently, Natalie is in a coma, which she has been in since the day she was born :(. She is on a ventilator, cannot move and is unresponsive to any form of stimulus. She was having seizures on and off for the first few days after she was born and the doctor put Natalie on anti-seizure medication. After her seizures stopped, the doctors took Natalie off of the medication and she has not had any seizures since her first week.

The doctor's gave her a week to live, they said her heart would eventually stop because of her decreased brain function. Despite the doctors original prognosis, Natalie's organs and body, except for her brain, are improving as each day passes. Along with that, she is now able to digest up to 60cc of formula every three hours. Also, she is able to void urine and bowels on her own.

The Doctor's have performed a few EEG's now, with no positive results :(. They say her brain stem is damaged but are not sure to what extent yet. My husband and I are now waiting for results from the brain ultrasound that was performed on her this past Friday. We should have the results early Monday or Tuesday morning. Hopefully that provides some good news.

Natalie has been in the NICU for 25 days now.

This is the hardest thing, next to the loss of our twin daughters, that we have gone through. My husband and I are holding on and hoping for the best.

If there is anyone who has been in a similar situation, or knows anything that could help our situation, I would appreciate it if i could get some feedback. As I said, this is a very trying time for us and in our current location (in the Army and stationed in Korea), don't have anyone that we can talk or relate to.

-Dana

Explore topics in this discussion:

Pain Pregnancy Seizures Cerebral palsy

72 replies

KellyBP

Hi Dana,

I am so very sorry about your twin daughters and for what you are going through with Natalie. I wish I had some advice or stories of success for you, but I have not experienced it myself. I just wanted you to know my heart goes out to you and I will be praying for Natalie, you and your husband.

Kelly

Natalies_mommy0609

Thank you, Kelly, for the prayers. I really appreciate them. Prayer is the only thing that's going to help her right now... I'll post again when we get the results to her ultrasound.

-Dana

Yolonda

Hello Dana,

I have absolutely no advice and no experience with your daughter's situation/prognosis. I just would like you to know that although you are alone in Korea you are not alone. While there may not be anyone on this board that can offer advice, they are plenty of people that will hold your hand and offer words of support and encouragement.

Do not give up hope, hang onto your faith, and send as much positive energy as you possibly can to your little girl.

Take good care,
Yolonda
Angel D'Lon Grace Mommy

SUPERMOM416

Hi Dana,

I am so sorry for all you have been through and what you are going through now. A lot of us here on this site can relate to difficult pregnancies and unfortunately losing children. It's a great place to get support especially in your current situation, being in Korea.

It sounds promising that your daughter is already proving the doctors wrong by living past a week. Stay strong for your daughter, as hard and trying as it may be. I will be thinking and praying for your daughter. Remember, God is in control.

Keep us updated on her progress!

Hugs and Prayers,
Erica

rainysmom

I care that you are hurting, and that this is such a trying time. I can tell you that our daughter had a very difficult begining, and did pull through. There were soooo many days where no one was very optimistic. Each child is different, so I'll tell you what our first neonatologist told me....trust yourself; trust those "mother" instincts no matter what. That advice guided me through more dark moments than I can recall, and still does.
Hang in there, and keep reaching out for support.
Much love, and big hugs.

mackenziestory

hello, i know you are very fustrated. i wish things were different for you and ur family.. i wish they would have delivered you @ 34 weeks before u had the time to rupture. i can not relate, but i wish u strength, faith, and prayer to help ease this time for you. miracles can happen. its all up to the man above. i lost a child before, he was 3months died from crib death. i also lost a baby @ 22 weeks. right after him now i am 27 weeks bedbound water broke no water left. just fustrated almost tempted to say deliver me before anything goes wrong. but i am forced to trust their protocols and ways of doing things. anywho enough about me. my only thought is be patient. enjoy these days with ur baby. just know that our Father will not give u anything that u all cannot handle.

Angel13008

I'm sorry for the loss of your twins and also what yall are being faced with the natile. I havent been in your situation i cant offer much advice to you. What I can and will do for you and yuor family is Pray. Dont give hope God is always there . He will never give you more than you can handle .

ShellyNel

I am saddened by your situation with Natalie, however, I agree with rainysmom, trust yourself to hope and hold on to that. Children are amazing and can overcome great obstacles. I will hold you all in my prayers for courage and strength in the coming days.

Natalies_mommy0609

Hi,

Thank you, everyone, for your prayers and support. I really appreciate them. I am so glad that I found this site. It's really great to know that even though you all don't know me, you'd pray for my family and my daughter and support me through this trying time.

Well, we went to the hospital today for another visit. Luckily traffic wasn't to bad and it only took about 45 minutes to get there. The results from the ultrasound didn't show anything new, good or bad. I guess we'll have to see if Natalie's brain is getting better with the next EEG. The doctor's going to do the EEG either at the end of this week or the middle of next week. Hopefully it will show something positive.

This IS in God's hands.

-Dana

Yolonda

Thank you for the update. I am praying the EEG next week shows something positive as well, even if only the slightest improvement.

Remain prayerful!

Take good care,
Yolonda

Wolden

Hi all... especially, you Natalie's mommy! This is Natalie's paternal grandma. My heart is breaking for Natalie and my son and his wife. What they have gone through is inconceivable.

I am grateful you found this, sweetheart!!! Everything I have read is amazing and the outreaching and support are what we all need to get through this trial.

My heart remains in Korea with you three. I was looking forward to changing diapers and working on baby schedules and such but it didn't work out that way. Instead, I spent 2 weeks crying and holding those I love.

It will be ok. You will be ok. We have to have faith.

lalacakes

I wish I had some information to share with you. My son had a brain hemorage but his experience was much different than yours with Natalie. That being said, I want you to know how sorry I am for what you are going through now with Natalie and for the loss of your twin daughters. We lost Jacob's twin, Samuel when he was two days old and I just want to reach through this computer and give you a giant hug because I know the pain your are in. I am praying for you and Natalie. The only thing I can tell you is that after Jacob's brain bleed the doctors told us that the brain of a baby has an amazing ability to repair itself and we have seen that happen with Jacob. I held onto (and still do) that statement when he was in the NICU and that is what helped me deal with everything we were going through. Please keep us updated on Natalie. God bless you!

Elise

mom22premies

Hi Dana, I wish you and your daughter the best of luck. I too had a uterine rupture, however, mine came before labor at 28 weeks. My son spent 69 days in Nicu and has been re-admitted to the hospital several times. Due to my failing health at the time of his birth I was not aware of the full extent of his health. I later learned that he was intubated twice after being delivered as the first attempt failed. He continues to have breathing difficulties and has been slow to develop cognitively. p.s. my daugthers name is Natalie and she too had a rough start- 32 weeker IUgr- blood clots in placenta. I will keep you and your daughter in my prayers. I hope the brain ultrasound gives your family much needed good news.

Rachael

Natalies_mommy0609

Thank you again, everyone for your prayers and support.

Natalie will be 1 month old on Thursday. She has been gaining a little weight everyday and is now up to 7.5lbs! So that's a plus!

I will post again with the results from the EEG. If we get any new news or if there are any changes, I will post sooner.

Thanks again everyone. You all are amazing.

-Dana

jojosmom

I'm sorry that you and your family have to go through this. I will be praying for her.

davynsmom

Hi,
My cousin has a similar story with an okay outcome so far.

Her little girl was born at 30wks due to IUGR and on d3 in the nicu her IV bag was changed and was accidentally left on fully open. She received an electrolyte overdose (sugars, TPN and everything went in way too fast). She started seizing and had swelling in her brain. She was intubated and continued seizing for a week or more even with seizure meds. She ended up being in the hospital for 4mos and on a vent for 2 of those at least. The drs asked her parents to withdraw lifesupport and said the prognosis was very very poor. Her EEGs showed no brain activity several times in a row, there was damage in the area of vision and it was assumed that she was blind but other important functions are also in that area so they didn't know the extent of the damage. Her brain u/s continued to show swelling and no improvement for at least a month. Her parents held onto hope, after all preemie's brains are pretty amazing things, they can compensate for so much more than an adult. Despite the drs saying she would never move, see, walk, talk... A week or so after the overdose, she was making spontaneous movements with her arms and legs, a few weeks later she was moving them equally and turning her head towards sounds. She also seemed to track bright lights with her eyes.
She is now 8mos old (actual age), or 5.5 corrected age. She was recently started on a seizure med again after an eeg showed small infantile seizures, and she likely will have some degree of visual deficit. She can see something though, and she moves arms and legs equally. She is almost sitting up, is eating solids, she is very small still, and has some increased tone in all her limbs.
Brain injuries are a wait and see thing unfortunately. But babies can sometimes do amazing things despite drs predictions. They never thought she'd come off the ventilator or move at all and now it seems like she is going to surprise them all. Obviously she is not going to be a 'normal' baby, but there is every reason to expect her to have a good quality of life and so far she is developing quite well.

Carla

Natalies_mommy0609

Carla,

Thank you for sharing your story about your cousin's daughter. It has been the closest thing to relate to Natalie's case, and I am SO glad that things are working out for her little girl! I know Natalie won't be a "normal" baby either, but I don't care. I'd love for nothing more than for her to wake up so I could look into her eyes for the first time and tell her I love her.
Your story (as did all the other's on here) has shown me that God does make miracles happen. For about a week now (I just found this site 2 days ago) I felt as if God had abandoned me, my husband and my daughter. But the stories, prayer and support on here has helped me get a new insight. Miracles do happen. All I have to do is rely and wait on God for his timing. Natalie is being strong for me, so I will continue to be strong for my daughter... Thank you for your support and prayers. I don't know how I could say how thankful I really am for all of you.

-Dana

Natalies_mommy0609

Hi all,

We got the results from the EEG and there wasn't any activity. :(. Natalie's state is the same, and unfortunately, there's been no change (clinically or in her brain) in the past week. Natalie's G.I. function has improved and the doctor said she is stable in this current state. The doctor's not sure if she'll improve any further than this state, but we still have faith that God can make a miracle. The pediatric neurologist did another brain ultrasound as well, and said that her brain is malformed from the trauma she sustained when my uterus ruptured. :(. Since the EEG didn't show any changes in the past week, the pediatric neurologist wants to do another EEG in 2 weeks to see if there are any changes with a longer period between tests. Hopefully there will be. My husband and I are having a meeting with the Professor (the doctor in charge of Natalie's case), the pediatric neurologist, and the Commander of the on-post hospital, sometime next week. Maybe Tuesday or Wednesday to see what the prognosis could be. I will update again after the meeting, or sooner if there are any changes. Thank you all for listening and praying for my daughter and family.

-Dana

Tinkerbellas_Mama

I can't imagine what you and your family must be going through. You are in our thoughts and prayers. Best wishes.

Jessica

Henrysmom

Hi Dana,

I've been following your posts and praying for little Natalie! Please keep us updated on her progress! I am praying that Natalie thrives and will make progress in ALL areas!!

Amanda

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