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Preview: Comments on Micro Preemie Twins: The Story of Holland & Eden: Micropreemie Blogs

Comments on Micro Preemie Twins: The Story of Holland & Eden: Micropreemie Blogs





Updated: 2018-04-22T18:51:41.281-04:00

 



Hi my name Dasia . I have twin boys Anthony and An...

2012-03-05T23:17:58.074-05:00

Hi my name Dasia . I have twin boys Anthony and Andre born on Feb 19 2012 24 weeks 1 lb 8oz.. Anthony is 12.5 inches n Andre is 13inches.. still in the nicu Anthony lung collapse but now doing much better along with getting rid of a infection. Andre had surgery to close is pda since them lungs hasn't been doing to good . On the jet n at 100 percent oxygen.. doc say its a waiting game not much else to do. They give him steroids for his lungs hoping that will help him ay.. his blood gas is looking a lil better. So praying hard for my boys to get throw this rough time...



Hi my name is Grethel , I have a little girl named...

2011-09-27T15:19:31.119-04:00

Hi my name is Grethel , I have a little girl named Vanessa Ariel Garcia she was born 8/23/11 at 1 lb 11oz , 13 in , she was born at 24 wks4 days gestation . She has a bilateral grade 4 brain bleed my blog link is http://mylilmermaidvanessa.blogspot.com/



earlybirdtwins.blogspot.com My aunt told me about...

2011-03-01T02:48:02.792-05:00

earlybirdtwins.blogspot.com

My aunt told me about your blog while I was in the hospital after my boys were born.

28 weeks 1 day GA, Baby A 2lbs 5oz Baby B 1lb 6oz
TTTS survivors,
So far Baby A Grade 2 IVH and Baby B Grade 1 IVH.
No PDA surgery just meds. Resolved.
Both on Nasal Cannula after 2.5 weeks
Currently still in NICU. I feel lucky that they are doing so well with not too many hitches in the road.



I just stumbled upon your blog and I am so glad th...

2011-01-23T19:14:22.496-05:00

I just stumbled upon your blog and I am so glad that you have shared your journey. A month ago I gave birth to my miracle baby Adelaide at 23 weeks 1 day gestation. She weighed 1lb 3oz and was 11 inches long. We have gone through so much since her birth but she is fighting so hard. As of now they suspect she may contract NEC, she has 2 infections (one in her broviac), and is very swollen because sh eis retaining fluids. This is a journey that no parent ever dreams of taking but I am so proud to know that there are brave and loving parents who fight for their childrens lives. So often they tell us to let her go but I can not and will not as long as she continues to fight.
GOD BLESS all of you.

here is the link to her caringbridge site. Please visit and share your experiences; they help inspire me and my family!

http://www.caringbridge.org/visit/adelaidecgardner2010



Thank you so much for your blog! I think you have...

2010-06-01T16:13:15.989-04:00

Thank you so much for your blog! I think you have an amazing family. I got lost in your story for hours!
I gave birth to a little boy on March 19th of this year. He was born at 24 weeks and 2 days gestation. We have had a long and bumpy road - that is getting smoother and shorter all the time. We would love to leave the NICU at AR Children's Hospital by his due date: July 4th, 2010.

His blog is:
samuelpope.blogspot.com



Billie, I've been reading your blog for a abo...

2009-09-22T00:26:06.467-04:00

Billie,

I've been reading your blog for a about a year and a half. Your story really helped me thru the worst of our NICU times. Our son Braden and his angel sister "Kaleigh Grace" were born at 24 weeks 0 days January 10, 2008. Braden weighed 1 lb 8 ozs. His NICU stay was 4 months. Surgeries in NICU were Broviac line and trach. Surgeries since the NICU are nissen fundo., g-tube and open reduction for hip dysplasia both hips. Currently Braden recieves OT, PT, and feeding therapy. He is finally off of oxygen and eats some by mouth. He is still not crawling or walking due to his hip surgery. Braden's website is www.braden-kaleigh.blogspot.com
Your girls are sooo adorable. You can see their personalities in the photos. Thank you for sharing their story.



Hi, I had triplets in 2006 at 24wand6days. They ar...

2009-05-03T15:09:00.000-04:00

Hi,
I had triplets in 2006 at 24wand6days. They are considered 24 weekers do to the test they did on them when they were born.
Preston was 1lb9oz. He almost died the night they were born they had him on a 100 percent oxygen for a few hours on the vent and they didn't think he would make it. He was on the vent for 8 weeks, c-pap for a couple weeks and then nasal cannula which he came home on along with an apena monitor. He had PDA liagation in the nicu and ROP surgery. He has also had numerous other things done. He is 3years old and has spastic cerebral palsy in his legs. He dosen't walk yet but we belive he soon will be. He is also deaf. So he has cochlear implants both ears.
Madison was baby b and my tinyest. She was 1lb 4oz. Her apgar scores were very low like 2 and 6. But we did get to hear her cry when she was born or i should say squeak. She had a level 2 and 4 brain bleed and at a week old her bowel ruptured. They told us to take her off the vent that she wouldn't be worth anything. She is fine she has hit all of her milestones close to the age they are suppose to and she was my first one home. She was on the vent 7 weeks and c-pap for awhile and then came home on nasal cannula and apena montiors. She is 3 and is full on energy she is in therpey right now for speech and OT and Pt but i think she will be out soon.
Hayden was my baby C. He was my biggest my 7 grams. He was 1lb 10oz and was the rotten one. He was fiesty and once his eyes opened they stayed that way. He was always awake it seemed like. He gave us a few scares in the NICU but didn't really have many problems until it was time to start feeds. He was on the vent for 8 weeks and cpap for a few and then came home on nasal cannula and apena monitor. He had ROP surgery in the nicu and also PDA liagation. He had minor brain bleeds and they told us not to worry about him. Soon after we got him hom we realized something wasn't right. When they were a year old we discovered that he had spastic quadpeligic cerebral palsy. He was very delayed in gross motor. Sadly on May 15 2007 my baby boy went to be with the lord. Everything changed that day and a huge piece of our heart went with him.

More storeis about the kids on my blog

http://thesheridangang.blogspot.com/



Hi,I had triplets g/b/g at 26 weeks and 5 days. At...

2009-03-03T12:36:00.000-05:00

Hi,

I had triplets g/b/g at 26 weeks and 5 days. Athena was 2lbs 5oz, Brayden 1 lb 15.5oz and Caitlynn 2lbs. The girls spent 70 days and Brayden spent 74 days in the NICU. They are a year old now. Haven't seen any thing really wrong with them as of yet. Caitlynn had bad oral averison and sometimes gags on food. They are all walking around furniture, crawling. Caitlynn had a grade 4 brain bleed while in NICU, but we don't seen any result of it. She never needed a shunt at all.

Janelle



Joel Hagin Carmichaelhttp://joelhagin.wordpress.co...

2008-12-05T14:24:00.000-05:00

Joel Hagin Carmichael
http://joelhagin.wordpress.com
September 30th, 2006
25 weeks 0 days
1 lb 1/2 oz (460 grams)
11 inches long
Survived NEC. Home on 02-currently done with his "accessories" :)
Quickly outgrowing CLD and some mild developmental delays

.



Hello,I came across your blog as I was surfing for...

2008-09-22T00:03:00.000-04:00

Hello,

I came across your blog as I was surfing for more information on RSV. I am the proud momma of a two boys. My first and yes my first is a 25 weeker. Jackson went through alot during his 85 day NICU stay- however, we thank God everyday that his stay was only 85 days. Jackson was born on September 23, 2006 and is almost 2 - GO J!

Our blog site is: http://jacksons-journal.blogspot.com/

Jackson's journey started where he had 3 or more infections within the first 3 weeks of life. He had over 10 blood transfusions - Thank you BLOOD DONORS as he is 0 neg and we had lots of lung damage.

He is an active 2 year old who is very much into Thomas the Train. I love and appreciate both my boys so much!

This blog is awesome to get many other micropreemie parents together as it is hard for others to "truly" understand what you go through in the NICU.

THANK YOU!
Sincerely,
Kyle, Erica, Jackson and Tyler



Hi,my name is Valeria. I'm mum of twin girs too, A...

2008-04-29T07:49:00.000-04:00

Hi,
my name is Valeria.
I'm mum of twin girs too, Aurora and Angelica.Angelica is an angel now. Aurora is a very beautiful baby, born at 24+4 weeks GA, 715g 29cm lenght.

She ave a lot of problems in NICU:
IVH and venticula dilatation
candida infection
AP-ROP
Hernya inguinal
Reflux

She have surgery for ROP and Hernya.

Now her eyes seem to go weel, she is at home from 24 march with out oxigen, only she eat very low :(



Hi there, my name is Justine and I'm a new preemie...

2008-02-13T11:21:00.000-05:00

Hi there, my name is Justine and I'm a new preemie mom. My daughter, Romy Raye, is currently 7 weeks old and still in the NICU.I delivered at 25/3 weeks gestation. She was born at 1 pound 3 ounces and almost 1 foot long. We've been extremely lucky so far with our little peanut. No IVH, PDA, NEC,ROP,(as of yet). She of course has all of the breathing issues, and has only caught 1 infection so far(we're crossing our fingers!!)She spent 1 week on the vent, 2 on CPAP and has been on the cannula since. I just can't wait to bring her home:)
I googled info about micro preemies and you popped up, I read your whole blog in one sitting! You're blog inspired me to start one of my own. It's really helped me out a lot, looking at your amazing family lets me know that no matter what happens, we'll be just fine. You're girls are truly beautiful and funny too! Thank you for doing this, it's very much needed and appreciated!!

RomyTheTinyWarrior.blogspot.com



I have been reading your blog so I thought I'd sha...

2008-01-08T01:44:00.000-05:00

I have been reading your blog so I thought I'd share my info (if you're still adding).

I just moved and got a new doctor so I went in for an ultrasound and was admitted. I was already dilated and was in labor. It was the craziest day. Conner and Braedon were born 8 days later at 23 2/7 weeks. Braedon got very sick from an overwhelming infection probably as a result of NEC and passed away at 14 days old.
Conner had a PDA ligation at 15 days old. He had an exploratory lap and appendectomy because they suspected NEC, but he didn't have it. He had a small IVH. Also, ROP with pre plus disease treated with laser twice. Some hearing loss is probable. He came home on oxygen after 107 days and is now off most of the time at 7 weeks corrected age. We're just happy he's home, and hopefully he'll be a happy little one.
Thanks for your blog.
Stacy
www.aboutthelarsons.com



Hey there!My name is Rachel and I'm a NEW micro-pr...

2007-12-09T22:16:00.000-05:00

Hey there!
My name is Rachel and I'm a NEW micro-preemie mommie! I'm just giving updates now on NICU progress, so I'll give a quick run down here and if you wanna follow me you can at http://www.myspace.com/rachelnrhino

Baby's Name... Carly Nicole
EDD...2/4/08
Birthdate...11/15/07
28w3d weighing in at only 13 ounces and 10 inches long!!!! She suffered severe IUGR, uterine infection, I had pre-eclampsia, 2 vessel cord, reverse diastolic flow, septum in uterus, etc....

so far we've been in the NICU for 24 days. She was on the HFOV for 15 days and has been on a conventional vent ever since. She's been on NO and hytrocortozone both for pulmanary (sp?) pressures. She' currently septic with an e coli infection in her blood stream that's being treated with antibiotics. Currently she's up to 1 pound after gaining and losing back down. Check my link for up dates!

You can e-mail me if you like at rachelrhin0@yahoo.com



I found your blog through a search on brain bleeds...

2007-10-12T13:39:00.000-04:00

I found your blog through a search on brain bleeds, which brought me to Lena and Kassie's page...which brought me here! I have a 26 weeker, BPD, grade IV & II bleeds. He is doing great, we celebrate every single tinie weenie milestone, doctors told us not to expect much...but he is proving them that NO one knows how his story will play out...except the author, GOD! I have shared your blog with many others, what a blessing you are!



Hi Billie, Wow, I feel honored, you listed us in ...

2007-09-04T02:25:00.000-04:00

Hi Billie, Wow, I feel honored, you listed us in your post! (Well I feel so happy to have met you and Holland and Eden (and John and your mom and dad) in person!

As you know, I felt I was becoming so close to you and our other fellow blogging Micro preemie moms, commenting on each others' blogs that I started our support group at: http://groups.yahoo.com/group/PreemieBlogMoms/ It's taken off! It's hard to believe that there are now almost 150 of us micro preemie blog moms, most of us blogging-moms.

My blog again is below, of course you linked to it in your post. Thank you again for the honor! :)

www.aLizard.com

Love, Liz! (mom to Kaitlyn and ^angel corinne^)

IVF triplets, miscarriage at 10w, water broke (pProm) at 17 w from amnio, 10 weeks bedrest, delivery at 26w, each weighed 1lb 10 ounces at birth (very small for their gestation); lost our first born angel Corinne that day due to poor lung development without amniotic fluid, Kaitlyn spent 4 months in the NICU (PDA surgery, ROP level 3 surgery, paralyzed vocal chord, gtube surgery, severe feeding disorder and major vomiter, Sensory issues, delayed developmentally, but otherwise doing really well and a darn beautiful girl)



What a wonderful blog. I just found this and have ...

2007-08-14T18:40:00.000-04:00

What a wonderful blog. I just found this and have to say that seeing so many micropreemies is great as I just had one 2 weeks ago. My little boy was 27 weeks 5 days but only weighed 760 grams at birth (1 lb. 11 oz.). I developed HELLP syndrome and had to deliver early and they believe that he did not grow the last week or 2 that he was inside me.

My little boy has a grade II bleed, PDA that closed on it's own, pulmonary hypertension, 6 blood transfusions, and for reasons they can't explain is not coming off the oscillator as well as he should. He's been at 95% oxygen and is wildly fluctuating on his oxygen requirements for reasons they can't pinpoint. On top of all this he has a bilateral cleft lip and palate so we have a long road even after the NICU with surgeries and specialists. You can see our blog at www.coburnkids.com



Hey!! I have seen your blog through other moms wit...

2007-05-10T13:21:00.000-04:00

Hey!! I have seen your blog through other moms with special kids. BUT I am on blog moms with you.

Tyler is a 25 and 3 day preemie. He weighed in at a whopping 1 lb 11 ounces. We were in the NICU for 93 days and he came home exactly one day before his due date. We have a grade three and four bleed, rop Rush ( plus) disease, resevoir placement in the NICU, Shunt and shunt revison AFTER the NICU and craniosynostosis from Toaster head in the NICU.

If it ok with you, I woould love to repost a similar blog and set up a micropreemie blog roll as well. THANKS for the story...



Billie,I've enjoyed reading your blog over the pas...

2007-03-28T11:30:00.000-04:00

Billie,
I've enjoyed reading your blog over the past few months.
My micropreemie twins, Andrew and Natalie, who were conceived by IVF, were born on September 2, 2006 at 23 wks 5 days gestation. Andrew weighed 1 lb 10 oz and Natalie 1 lb 6 oz. I was on hospital bedrest for 3 weeks prior to this. 2 days after the twins were born we were told that Andrew was having very serious problems and was not likely to make it through the day. He had a pulmonary hemorrhage and likely grade IV IVH. We were able to hold him and say goodbye before he passed away. Later the same day the neonatologist called us back down to the NICU to tell us that they pulled some blood from Natalie's ET tube and it looked as if she was having the same problems as Andrew. They let us hold her but since she was actually staying very stable, they advised waiting until the following day to see how she was doing before making any decisions about taking her off the ventilator. Amazingly, by the next day she was still stable and the doctor admitted after getting a head ultrasound that things were not nearly as bad as he thought yesterday. She did have a grade III IVH but was stable and there was no evidence of major lung hemorrhaging as there was no more fresh blood in her ET tube. In the end, she spent 110 days in the NICU and was discharged on December 20, 2006 which was prior to my Christmas day due date. During her hospitalization, she was on the ventilator for 83 days (finally taken off after 10 day steroid course), had ROP surgery, and PDA ligation. She came home on O2, which as of 3/16 was discontinued during the day. She's almost 4 mos adjusted age and doing well overall. Of course there are always some concerns and a lot of unknowns about her future functioning but we're just so glad she is here and seems to be a happy baby most of the time!

Our blog is www.delhall.com. It is mainly written by my husband which is probably for the best because he is a very upbeat and positive person.

Thanks for your blog. It's comforting to read about others who have gone through similar experiences.

Jeanne Hall



I didn't say what NICU "experiences" we had with t...

2007-02-04T20:21:00.000-05:00

I didn't say what NICU "experiences" we had with the trio. Let's see...
- BPD x's 3
- MRSA and Non-MRSA Staph
- PDA x's 3 (Lily's is getting fixed this month, the boys closed)
- CMV Infection in the NICU
- Necrotizing Endocolitis (luckily no surgery needed to fix and he is okay now)
- Severe GERD & NG/NJ Feedings followed by a fundoplication
- Bilateral inguinal hernias x 3
- Tracheostomy after 3 months for Lily
- Home on Apnea Monitor/Pulse Ox, Ventilator, Oxygen, Enteral Pump

I think that's it!



www.kimblahg.com I have former micropreemie tripl...

2007-02-04T20:14:00.000-05:00

www.kimblahg.com
I have former micropreemie triplets. Lily, Jack and Ethan are 19 months/16 months adjusted now. They were born at 25 1/2 weeks weighing 1.6lbs (Lily ) and 1.10lbs (Jack and Ethan).
Lily has a trach and still needs oxygen but her lungs are approving. She has had a fundoplication and has a g-tube (refuses to eat). We've been through a lot but the kiddos are incredible little people and we wouldn't change our circumstances for the world.
Thanks for sharing your story- I've been reading for about a year and a half and following your darling little girls' story.



Billie:I have twin girls, although they were not m...

2007-02-03T19:51:00.000-05:00

Billie:

I have twin girls, although they were not micro-preemies (31w0d). I spent many, many weeks on bedrest, quite a few of them in the hospital. And I found your blog when I was being told by the doctors that they believed delivery was imminent at 24 weeks.

Your girls are so precious and such an inspiration. I love reading about their progress.

Hugs to Holland and Eden.

Susan, mommy to Lily & Grace



Thanks so much for this post... I go back and fort...

2007-02-02T18:13:00.000-05:00

Thanks so much for this post... I go back and forth on the "micropreemie" issue, and at the end of the day I just say my b/g twins were VERY small...
www.jandjonline.blogspot.com

Taylor and Alivya were born on Dec. 30, 2005, following a 42day hospital stay with baby A's (Taylor)membrane ruptured (20 weeks). At 25 6/7 weeks, Taylor weighed 2lbs 3oz (13.5in) and Alivya just 1lb 14oz (13in). Remarkably, Alivya came home just three days before her due date, a 94 day NICU stay. Resolving reflux and protein intolerance were her only ongoing problems at discharge. Three months post discharge I was able to stop all of her reflux meds. Today she is developing according to her adjusted age and shows no other signs of her prematurity. Taylor, on the other hand, spent 164 days in three different NIC units. He came home on oxygen, G-tube feedings, severe reflux, total oral aversion, and generalized trunk weakness. Today he has overcome his need for oxygen, but remains on heavy duty steroid inhalers and albuterol. He relies mostly on J-tube feedings and is beginning to accept some cold pureed food on his lips and tongue. He can sit up for an hour or so unassisted before becoming fatigued. He bears no weight on his legs or arms, and does not roll over.

Thanks again for hosting this... there is nothing quite like knowing that someone else understands what you are facing!



Your family is so precious to us. I found your bl...

2007-01-31T17:47:00.000-05:00

Your family is so precious to us. I found your blog while Halle was in the NICU and you gave us such hope. To this day we rejoice with you on their milestones and cry with you during the difficult times. Thank you, Billie, for your "ministry" to preemie parents all over the world!

Halle Grace born 1/4/05
23 wks 5 days
473 grams (1 lb, 1 oz)
NICU journey: vent for 7 weeks, CPAP for 3, home on O2, PDA surgery at 7 days, stage 2 ROP (resolved).
At home: developed oral aversions, NG tube placed at 6 months, G-tube placed at 9 months, currently in feeding therapy and on the road to tube weaning



Jack wwas born exactly 3 months early on August 27...

2007-01-31T12:12:00.000-05:00

Jack wwas born exactly 3 months early on August 27th, 2006 in NYC due to a placental abruption.

He spent 3 weeks on a vent, 4 weeks on cpap and 2 weeks on cannula. He had bilateral ROP III/Plus which required surgery, but thankfully no other significant issues.

He came home 70 days after his birth with no monitors or supplemental o2.

We've been blogging about his since his birth at www.dandyjack.com