OK...here's the update...

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.

OK...here's the update...

Postby mom2miracles » Thu Feb 25, 2010 09:06 pm

My goal in posting this is to provide hope during a time that can seem so hopeless...having a preemie.

History for those who don't know us...

My daughter, Ella, was born in 07 at 27 weeks. I had Severe PE and HELLP Syndrome. They said I would die if they didn't deliver. I said I don't care if I die if she can have a better chance at living. They said no. Ella weighed 1lb, 3oz and was 11.5in long. She did ok, just breathing issues, for 3 weeks. She developed NEC, had 2 surgeries and passed away within 24 hours on 5/31/07. My heart breaks a little every day from missing her.

I got pregnant 6 mths later, after being diagnosed with Compound Heterozygous MTHFR and the Lupus Anticoagulant. During my second pregnancy I took two Heparin injections a day and lots of vitamins. Ethan began measuring small at 18 weeks. I was on bedrest at home at 20 weeks. At 24 weeks, there was no growth. I was told Ethan would die in utero within the next week or two and would be delivered still. I had the option of going into the hospital for daily heartbeat checks and bedrest or staying home and having weekly checks. I knew I could not handle the latter so I checked into the hospital on 4/18/09 to wait for my second child within a year to leave me. Heartbeat was fine for 2 weeks and an ultrasound showed only 3oz of growth, but dangerously low fluid. But because I was 26 wks at that time, the NICU said they would try to revive him if he was big enough for the breathing tube when he was born. Two weeks of okay heartbeat and another u/s showed no growth and no fluid. Emergency c-section...delivered 14.8 OUNCE, 9.5 INCH baby boy. He was intubated and taken to NICU. One of the smallest they had seen.

Ethan's timeline:

3 weeks- developed staff infection in blood, bones and lungs and was transferred to higher level hospital. He was a mess! Coded 3 times in one day. 52 days of antibiotics. Still intubated.

Spent the next several mths trying to get him off the vent. He pulled it out on his own and coded (code blue) 17 times. Finally realized he couldn't breath b/c of the airway damage caused by being intubated so many times.

3 mths (Aug 08)- Eye surgery for Retinopathy of Prematurity

4.5 mths (Sept 08)- Tracheostomy for severe airway damage

7 mths (Dec 08)- Scheduled for release on 12/15 but developed life threatening strep infection in his blood. Very sick for a week.

7.5 mths (Dec 08)- Transferred from NICU to Transitional Unit for training

9 mths (Feb 09)- Surgery for Double Inguinal Hernia and Circumcision

9 mths (2/17/09)- Home from the hospital with trach, vent, oxygen and NG tube after 9 LONG NICU mths

15 mths (Aug 09)- Surgery to place G tube (Mickey Button), Pyloroplasty and Nissen

4 hospitalizations between 2/17/09 and 12/09 for respiratory infections

Diagnoses: Bronchopulmonary Dysplasia (Chronic Lung Disease), ROP, Grade III Glottic Stenosis (upper airway), Trachea-malasia (lower airway), Bilateral Inguinal Hernias (repaired), (2) Grade I-II Head Bleeds, Small Periventricular Leukomalasia (area of dead brain tissue from lack of oxygen), Feeding issues, Developmental Delays

And NOW:

Ethan is as mischievious as he looks in my avatar. Health wise...He is only on the vent when sleeping but a sleep study next week will hopefully tell us he can be done with the vent all together. He has been off oxygen for 2 weeks. If he gets off the vent, he will be scheduled for a major surgery on his upper airway to fix the damage. After his surgery, they will start capping his trach and it should come out within a couple of mths. There's a chance he will be done with everything breathing wise by Christmas this year. WOO HOO!! Ethan takes some food and formula by mouth but not enough to meet his caloric requirements, so we have to use his g-tube for the rest. My 14.8oz baby weighs 26.3lbs and is 29.5in long. He's in the 50th percentile for weight on the normal chart (not adjusted), but is still very short.

Developmentally: Ethan is testing at his adjusted age (18mths) in cognitive skills. He is very smart. His fine motor skills are great except for coordination is a little behind. He is very delayed in gross motor skills due to being hospitalized for 9 mths and intubated for 5 mths of the 9 with very little movement. He started sitting up in December and is finally putting some weight on his legs to begin standing. He waves, patty-cakes, blows kisses, dances, etc. He is a wild boy with an incredible (and sometimes ornery) personality. He is a joy and keeps me very busy.

My husband and I are in the middle of a divorce. He left when Ethan was 2 weeks old. He is still involved with Ethan but I do all of the work...he just visits. I also have nursing. I returned to work in Nov. 2009 part time.

My message is this...
Grab every ounce of hope you can and hold on for dear life. When you have no energy to hope...look to someone/something (a higher power for me) to hold you up. My son probably had a 5% chance of living. He heals my broken heart a little every day when I look at him. I got a lot of support from the PE website during this journey...the loss of my daughter and the birth of my son. I would like to give back if I can provide any support to anyone.

Thanks for reading...and sorry so long!
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Re : OK...here's the update...

Postby jamie w » Thu Feb 25, 2010 10:04 pm

OMG!!!!! I cannot believe how awesome you guys are doing! I am so proud of you and Ethan and am so glad you came back to update! Please post more pictures when you can and I wish you the best with the sleep study!!!!!!!!
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Re : OK...here's the update...

Postby rebeccac » Thu Feb 25, 2010 11:11 pm

I'm so glad everything is going as good as it is for you and Ethan! I visited your care pages after Ethan was born and then lost touch for a while. You have been through so darn much over the past few years...enjoy your little man!
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Re : OK...here's the update...

Postby amandaoasis » Thu Feb 25, 2010 11:19 pm

What an amazing story! Ethan is adorable and congrats on his stellar progress. You are both inspirations.
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Re : OK...here's the update...

Postby mnmom » Fri Feb 26, 2010 06:58 am

Thank you for that wonderful update! We miss you!!! I have been peeking in on Ethan's care page and I never removed the prompt on my work computer to pray for you every Thursday while you were pregnant with him and having those growth scans. Amazing!
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Re : OK...here's the update...

Postby patty » Fri Feb 26, 2010 10:00 am

Ethan's story is a true inspiration and miracle. I am so glad to hear an update I was wondering how you guys were doing the other day. He has gotten so cute! Thanks for posting. I know his story will help others.
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Re : OK...here's the update...

Postby hols537 » Fri Feb 26, 2010 01:46 pm

I think you are both amazing and Ethan is adorable! It's wonderful of you to share your story with all of us.
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Re : OK...here's the update...

Postby aggie95mom » Fri Feb 26, 2010 02:16 pm

That's a wonderful update! Isn't it amazing how our lives greatest teachers and heros are so small and young :) Well, not small anymore, that's GREAT growth for Ethan. Keep up the good work!!
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Re : OK...here's the update...

Postby veronica44 » Fri Feb 26, 2010 05:37 pm

Thank you so much for posting. I cried a lot while reading your story. It is true proof that miracles can happen. And statistics? The 5% chance of survival? All of it doesn't matter to the individual miracle. Thanks again, and all the best to you and Ethan.
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Re : OK...here's the update...

Postby rsgeller » Mon Mar 01, 2010 03:31 pm

Nikki, your story always makes me speechless and in awe of what you and Ethan have overcome. You both are true inspirations. We send so much love your way....
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