Friday, January 26, 2007

Micropreemie Blogs

When Holland and Eden were born I did a lot of research looking for other parents of micro preemies, and micro preemie stories. That was almost 2 1/2 years ago (oh my god I can't believe it). It was before the whole "blog" thing really took off, and I had never even HEARD of a blog. There was a lot of information about preemies out there, but not a lot of real life stories. I found a handful, but most of them were no longer being updated. The stories that we did find, especially the adorable and amazing Lucas and Austin, were very inspiring to us.

The biggest reason we started the blog was practicality. It was easier to keep our friends and family updated via the internet when we were spending every spare moment in the NICU. But I also thought it would be a nice way to meet other parents facing similar circumstances, as well as to offer hope, inspiration, and information to other parents out there wondering what they might expect as they began their journey.

I had no idea that "blogging" would have such a big impact on my life. I have met so many wonderful people that I now consider "friends" even though we only know one another in the cyber world. Halle Grace was one of our very first micropreemie friends after her mom found our blog and sent me an email. We had the chance to meet our micro preemie friend Kaitlyn in "real life" when we visited California last summer. I really can't imagine enduring this journey (the NICU stay, doctor appointments, feeding issues, delays, disabilities, and many many other issues we have faced) without the support of the other families we have met through our blog. In the midst of all the stress and fear and worry, it was at least helpful to feel a little less alone.

Since we began our journey, our list of micropreemie friends keeps growing and growing. As much as I want to, and would if I could, it has gotten hard for me to keep track of everyone! I don't want to leave anyone out.

So, I am creating this post as a blogroll of all of the micropreemie blogs out there, and am hoping it can serve as a directory for new parents looking for information and stories similar to their own. For this purpose, I will define "micropreemie" as any preemie weighing 2 pounds or less at birth, or preemies born before 26 weeks gestation.

If you have a blog about a micropreemie, please comment and tell us their name(s), your link, their birthday and gestational age, birth weight, length of NICU stay, significant NICU events, surgeries, and ongoing issues or complications if there are any.

And thank you to all of you who have supported my family and my girls over the years!!! I don't know how we would do it without you!

51 comments:

sarah said...

Billie:
As you know, we found your blog soon after our boys were born. You and your girls have been a great source of inspiration to us. It is nice to know that current and future families can use your story as a resource, and see the joy these tiny babies will soon bring to their lives. Thanks for allowing all of us to share in your journey.

Anonymous said...

Billie-

My blog is SO bare! I started blogging after Sarah was a year and I deleted a lot of the posts when I migrated to another blog provider. Now I'm back...

Here's my info:
Sarah
www.miraclesarah.blogspot.com
Born 2/11/05 at 24w/6d (pPROM at 23w/2d)
1lb 14 oz (she was huge for her gestation but they are confident that her gestation was correct)
111 days in the NICU
PDA surgery at 10 days old
Significant NICU events: 22 days vent, 6 weeks CPAP, 6 weeks canula. It was the usual ups and downs of the NICU. She came home a few days after my due date.
NICU and 1st year issues: BPD, CLD, reflux, constipation, abnormal pigmentation of retina, developmental delays (fine motor, speech, cognitive and some gross motor).
Current issues (almost 2 yrs old): BPD, CLD, Abnormal pigmentation of retina, developmental delays (fine motor, speech, cognitive and some gross motor)

Anonymous said...

Billie,

Your blog was (and continues to be) such an important resource for us as we begin this journey through micropreemie motherhood. Your writing is impassioned and you always find a way to put things into words that are genuine and touch important chords with the rest of us. And your girls are fabulous and you and John are amazing parents.

About us: our girls were conceived using IVF in January 2006. Amniocentisis confirmed that we were having two girls. After a relatively uneventful pregnancy, Sharon went into PTL at 23 weeks 0 days and managed to put off delivering the girls until 23 weeks, 4 days, and a few hours. Hallie Rose (Baby A) and Olivia Skye (Baby B) were delivered on 11 June 2006 weighing 590 and 580 grams, respectively. Both had open PDAs, infections, BPD, were on high velocity ventilators with NO for part of the time. We lost Olivia at 18 days and Hallie had PDA surgery at 17 days. Hallie was vented for 9.5 weeks, had two brief courses of postnatal steroids, was on CPAP a week, and spent 121 days in the NICU and came home on oxygen at 5 lbs. 11 ounces on 10 October 2006 (a week after her original due date). She had stage 2 or 3 ROP in zone 2 that self-resolved and continues to be on oxygen, breathing treatments (intal and albuterol) and meds for reflux (zantac and prilosec). She met the 3 month developmental expectations and will continue to be checked by our NICU for the next couple of years. She sees a special teacher and a physical therapist and has lots and lots of doctors visits. She is eating ok but volume limited and currently weighs 12 lbs even. Her blog (which Billie has already included in her sidebar) is: Blogginghallie.blogspot.com

Mel said...

I just stumbled onto your blog. My son wasn't a micropreemie but has CP, hearing loss, and epilepsy due to complications at birth. Your girls are amazing!

Anonymous said...

Hi Billie! This is such a great idea- I too love to read inspirational stories about micropreemies- including yours! I have come across many wonderful stories though the "friends" link on your site. Though my blog does not qualify (I have 26 weekers), I just wanted to thank you for putting this together:)
-Ashleigh

Anonymous said...

We love Holland and Eden, our micropreemie friends! Actually you guys were one of the first blogs I ever read about preemies and helped me get started on my micropreemie twins' blog! So we are pleased to add our info for your blogroll...

http://preemiesthentwins.blogspot.com/

Okay, their history is long and would take forever to lay out, so here are the highlights:
Born at 25 weeks gestation (and three days apart)...

Collin- born 10-27-04, 1 lb 12 oz & was in the NICU for 107 days; on the ventilator for 2 1/2 months, he had an NEC (two surgeries which included one central line),hypoglycemia (had to test his blood sugar three times a day for four months and had a fasting study), PDA (medication resolved), ROP (which included a laser eye surgery & yet another central line), a hernia repair surgery, BPD, SID (Sensory Integration Dysfunction), and chronic lung disease. He currently recieves OT, PT, Speech therapy for his developmental delays (and he has an ECI nutritionist). Ongoing, he has worn glasses since he was 6 months old and will be having another eye surgery sometime this year, he has severe reflux and difficulties with fine and gross motor skills; he isnt talking or walking and may have mild CP, we are seeing a neurologist next week.

Cyrus- born 10-30-04, 1 lb 15 oz & was in the NICU for 88 days; he had a grade 3 bleed that caused his Hydrocephalus (which led to a total of three surgeries, including a shunt revision), two hernia surgeries, PDA, BPD, ROP, and chronic lung disease. He has PT and OT for developmental delays. Ongoing, he has a VP shunt and is highly prone to sickness due to his BPD & chronic lung disease.

Both went home from the NICU with Oxygen, Apnea monitors, pulse oximeters for about four months. Whew! What a crazy looking summary, and I know I am forgetting stuff... :P

Anonymous said...

Billie,

Your blog roll is getting so big! We don't feel that special anymore! :(

Just kidding.

Fun fact: Your's was the first blog I found when we were in the NICU. Okay, that really wasn't that fun of a fact. Keep them posts coming!

Emily said...

First let me say that this is a wonderful idea. I found Holland and Eden's site from a google search right after Dakota was first born and I think I read all of the entries one night when I was terrified about what we were going through. Reading about your life is an inspiration to me and gives me so much hope when I think about the future. You're such a strong woman and an amazing mom!

I have a little girl named Dakota Rose (dakota-rose.livejournal.com) born on 2-27-06 at 25w0d weighing 658grams (1lb 7oz) and 12in long. She spent 225 days in the NICU. She mainly struggled with respiratory problems, Cor Pulmonale and infections, in particular MRSA pneumonia, while in the NICU. She went back and forth between the oscillator and conventional ventilator before it was determined that she needed a tracheotomy and long term ventilation. In addition to her respiratory issues she has severe silent reflux accompanied by aspiration which has caused her to develop a severe oral aversion, osteopenia resulting in seven rib fractures, an Atrial Septal Defect, ROP stage 3 zone 2 with Plus disease, congenital CMV and a sickle cell trait called "C trait". She has gone through a PDA ligation, laser eye surgery, tracheotomy, gastrostomy and nissen fundoplication.

As of January 2007 we've weaned completely off of the ventilator and are preparing to remove our trach and move on to a nasal cannula sometime after RSV season. She doesn't eat anything by mouth and we're working very hard with speech therapy to improve this problem. She has severe delays in all areas and is at a 2-3mos level developmentally which means we have a lot of therapists in and out of our house on a daily basis. We're still early on in our journey so it's hard to say where things will go. She's happy and healthy and hasn't been rehospitalized this winter. I can't complain.

Kristin said...

Dear Billie, John, Holland & Eden;

We don't qualify as micropreemies as we were 31 and 3 (how I cherish those 3 days) and 1340 grams (2lbs 15oz approx), however, your story was one of the first I read when doing research on prematurity..I think I googled something along the lines of 'preemie developmental milestone markers' or something to that effect.. and found you all.
I come here nearly every day to see what you've been up to, how you change every day and to be inspired by both the 'rents and the girls.
Thank you for your continual sharing, the fantastic pictures and I can't wait to see where you take us next!

Anonymous said...

I found this site through Moo's Mum's site Terrible Palsy. We are from Sydney Australia.

Thomas will be two on February 2 this year.

Thomas was born @ 28 weeks + 4 days 0n 2/2/05. He weighed 734g and was only 32cm at birth. He spent two weeks on the ventilator and went onto CPAP for a period of several hours at a time. He had to be re-intubated @ 4 weeks because he had bilateral inguinal hernias that pushed up on his stomach and made breathing difficult for him. He was transferred by NETS to RHW Randwick for the hernia repairs when he weighed just 760g. He had dropped to 660g in his first month. He retuned to RPA to grow BUT had several issues, the worst being severe reflux. He spent a period of 105 days in hospital and during this time he also underwent a pH probe study and a Barium Swallow Test (at Westmead).

Tom failed the two SWISH tests and was diagnosed with severe-profound hearing loss in an ABR at Westmead Children's Hospital. He was readmitted to hospital for one week because he turned blue on me at home - it was further revealed that he had gastro-oesophageal reflux disease (GORD). He had only been home for 5 weeks when this happened.

In February 2006, Thomas's hearing loss was classified as moderate. He attends the Shepherd Centre weekly and has started going to their playgroup. He saw a physio monthly last year and is now seeing an occupational therapist monthly this year (all preventatives - at our request).

He is small - but then you would be if you were born weighing a 'tub and a half' of butter (mum nicknamed him this). And I guess the 'small' issue is getting to me at the moment.

I love him dearly and am so VERY PROUD of my little man.

He has his own website;

http://wwww.totsites.com/tot/thomaslinton

I just adore reading this site Billie, and find you very inspirational yourself. So thank you.

Jodi

Anonymous said...

Billie,
I found this site recently looking for blogs of preemies with hearing loss. Noah is going to be getting his CI next month and it has been great to read though your daughter's journey. Noah was born at 24 weeks 5 days weighing 1lb 9.7 oz and 13 inches long. He spent 6 months and a day in the NICU and came home on O2, monitors, and an NG tube. We got rid of the NG after a month and stopped using the O2 after 9 months home. Noah is considered deaf-blind although it's looking like he'll be legally low vision rather than blind. He's still got feeding issues which we're working on too. After reading your old posts over the last few weeks you inspired me to start a blog too. You can find us at: ebbygator.blogspot.com

Anonymous said...

I think you were one of the first blogs that I found about micropreemies, too. And we have the issue of cerebral palsy in common, too. Your blog has been a great inspiration for ours.

Anyways:

Name: Darsie
Link: www.cerebralpalsybaby.blogspot.com
Gest. Age: 28 weeks
Weight: 806 grams (1lb. 12oz.)
Nicu stay: I actually don't know the number of days, never counted. About two months, though
Events: Grade 4 IVH
Ongoing: Hemiplegic Cerebral Palsy

Anonymous said...

Please link to my friend Christie's site: www.mossclan.blogspot.com. Her 3-year-old son Brodie was a 25-weeker who had bilateral grade 4 IVHs and now has CP and a shunt. He is having a rhizotomy in March to try to help him walk. Brodie is AWESOME! (My son is a 1-year-old 24-weeker with a grade 4 IVH, but while I love reading your blog and those you've linked to, I don't have a site of my own!) I think it's a grat idea to link to similar preemies this way. Thank you for doing it! Melissa

Michelle said...

Hi Billie,
Holland & Eden's story was the first blog about micropreemies that I came across. And is what inspired me to start one about my girls.

We knew our girls were going to be born at least 8 weeks early due to them being mono/mono twins (sharing same sac & placenta) It is a very rare and high risk pregnancy. I was put on bedrest at 20 weeks and hospitalized at 24 weeks for constant monitoring of the babies cords.

So here's their info:
Kateyln & Madelyn
born: 11/18/05 @ 27w5days
Due to severe cord entanglement after 3.5 weeks of hospitalization and constant monitoring.
Katy 2.3 lbs Mady 2.0 lbs
NICU time: 3 months
Surgeries: Mady had PDA ligation
Significant NICU issues: several weeks of going from vent to cpap then finally to canula for both girls by 8 weeks old. NEC (caught early) for Mady.
Issues after NICU: Mady came home with O2 and apnea monitor. Was off both within 12 weeks of coming home. She also has severe silent reflux, aspiration, dysphagia, has a paralyzed vocal cord from her pda ligation which causes moderate feeding issues. Developmental delays; receives PT OT ST.
Katelyn has been diagnosed with a nuerological movement disorder which affects her facial muscles. She takes topimax to keep the spasams under control. A concrete diagnosis has not yet been made by her nuerologist. She also suffers from chronic constipation. Her delays have been mild and consist of mostly speech delays.

I'm sure there's more, but that's all I can think of right now. They both are doing quite well!

Michelle said...

OOPS! forgot to give you their link. www.momotwins-katy-mady.blogspot.com/

Anonymous said...

3 I read:
www.ashtonjeffreykaden.blogspot.com
http://tinytruman.blogspot.com/
http://elijah-joseph.blogspot.com

All are micropreemies! Please add them to your list. You had a great idea to make a list like this.

Anonymous said...

Hi Billie,

I came across your blog through another, my twin girl's were born at 26.6 weeks gestation weighing 1lb 14oz & 2lbs. We went through the NICU roller coaster for 90 days. I never even knew the NICU world existed before then! Our girl's we went through the typical preemie issues: PDA, severe reflux, infections, brain bleeds, developmental delays.
My one twin, the smaller of the two has recently been referred for an autism assesment.
I encourage you to check out ashtonjeffreykaden.blogspot.com, he is one amazing little boy who is such a fighter.
Your girl's are absolutely beautiful and will be great at whatever they do in life. They have a mom who is so dedicated. I will be adding them to my blog roll so everyone I know can see how wonderful they are. A child's success comes from dedicated parents.

Thank you for sharing your story with all of us.

Sammie said...

Well mine's a whole website with a blog, lol.
www.n8andnoah.com
born June 23, 2004
Nathan weighed 1 pound 5 ounces
Noah weighed 1 pound 1 ounce. Noah passed away at 12 days old from complications.

Nate had a 77 day NICU stay and required no surgeries while in the NICU... he had laser surgery on both eyes in Oct/Nov 2004. Hernia surgeries in May 2005....he's pretty happy and healthy now as a 2 and a half year old.

Anonymous said...

Billie,
You give me hope everyday! I came across your blog a few months after John was born......I am now addicted:)

John:
24 weeks and 3 days gestation. Wonderful pregnancy until I started spoting (11-30-05.) Rushed to my OB's where she discovered my water bag was buldging. I was then air-vaced to another hospital with a level III NICU. When I arrived there they discovered that the umbillical cord was now in the birth canal so they prepped me for a C-section and our little man was born at 2:54 that afternoon.

110 days in the NICU, C-pap on day 4, NEC on day 8 (back on vent). Grade III bi-lateral, cerebellum bleed, resolved ROP, PDA (closed with meds), incisional hernia, severe reflux, and G-tube fed.

birtchbaby.blogspot.com

Anonymous said...

Please add the links to your main page! I'm also the mom of a micropreemie but I don't have a blog. I love reading yours, though. All the other blogs will be much easier to find if they're linked to your main page. Thanks so much for doing this! You and your family rock!

Sarah said...

You know us. ;^)

Shoshanna - http://snowplow.org/sarah/pers/Shoshanna
9/25/04, 25w3d gestation. 1#13oz, 13".
89 days NICU/CCN. (Home on 12/23/04.)
Grade I/II bilateral IVH (resolved), Stage I/II ROP bilaterally (resolved), reflux (resolved), BPD/CLD (home on supplemental O2 and a sat monitor, now resolved).

Minnesota Momma said...

Hi! I am the mom to micropreemie twins too (24 weekers). I will try to summarize briefly.

I have a long history of infertility, an early miscarriage and a loss due to an incompetent cervix at 19 weeks (we miss you baby ~Seth~).

With my twin pregnancy, I had a cerclage placed at 17 weeks and was on bedrest for the duration. At 22 weeks I started developing pre-eclampsia and ended up in the hospital. I made it 10 more days before they had to deliver my girls via C-section (10/8/02). Lindsey was born first weighing 1 lb. 1.5 oz. (498 grams) and was 11" long and Sydney weighed 1 lb. 2 oz. (509 grams) and was 11 5/8" long.

Both spent 114 days in the NICU coming home just five days after their original due date. Both had BPD, open PDA's (resolved w/meds), stage 3 ROP (resolved w/laser surgery), small germinal matrix hemorrhage (resolved), grade III reflux (resolved), aspiration of thin liquids (resolved), and multiple blood transfusions.

Lindsey was much sicker than Sydney. She spent 11 long weeks on the vent, some of that on the oscillator, then a week on CPAP, and about 10 weeks on O2. She had multiple sepsis episodes and I didn't get to hold her for eight weeks, as she was very unstable.

Sydney was a bit more steady. She was on the vent for 7 weeks, CPAP for 4 weeks and O2 for 4 weeks. Not a complication from prematurity, but she had an ASD (atrial septal defect) and a VSD (ventricular septal defect). The VSD closed on its own by one year, but at almost 3 years old, she had a heart procedure where they placed a device called an Amplatzer to close the hole in her heart. All is well with that!

I do have a blog - Life is a Journey which has a link to their Caring Bridge page where I journaled every day while they were in the hospital. I'm so thankful we had that site, as I didn't know a thing about blogging back then. Was there such a thing?

I would love it if you linked to my blog and I would love to add other micropreemie blogs to my page too.

Anonymous said...

Billie,
I've been following Holland & Eden's progress over the past 18 months. Yours was one of the first blogs I found when searching for any bit of information after our micropreemie journey began in the summer of 2005. Reading about your courageous girls gave me so much hope back then, and I continue to be amazed at their progress.

While on hospitalized bedrest, I had PROM at 19 weeks and our daughter Olivia was born at 22w6d. Unfortunately her lungs were too immature (due to lack of amniotic fluid) and she did not survive. Her twin Emma was born at 24 weeks on August 5th, weighing 678 grams. Our NICU stay was fairly "typical" of most micropreemies and Emma was treated for BPD, PDA (requiring ligation which resulted in a paralyzed vocal chord), ROP, NEC, anemia, sepsis and multiple other infections. Emma was on a vent. for 6 wks, on CPAP another 5, and on oxygen for a further 3 weeks. After 104 days in the NICU she finally came home one week shy of her due date. She was rehospitalized 4 times the first winter due to respiratory illness and pneumonia and we battled severe reflux (with multiple meds) for the first year.

Emma is now 14 months adjusted and is, thankfully, doing quite well with some ongoing respiratory issues and slight developmental delays.

Her website is: www.emmareport.com

Thank you for sharing our story with us,

HHH said...

Billie, I have been watching H and E grow for a year and a half now. Their strength and determination, as well as yours, continues to inspire me.
You know my blog but here it is...
www.lovvorntwins.blogspot.com

Bobbie
mom to Heath and Hallie (25wkers)

kellars mommy said...

I came across your site while looking for stories on micro-preemies, I googled something in particular and your site popped up and I read through the whole thing in a matter of days, I just couldn't stop reading...

Kellar Reid
26 wker
1 lb 12 oz
117 days in the NICU at Baylor in Dallas, bilateral grade 3 IVH, cerebellum bleed, surgical NEC, pda closure, rop, ecoli infections, staph infections, cld, rds...
OT comes out 2 times a month and we are about to add pt to our list in a few days as well as a cranial "band" to help shape his head...

Andi said...

Billie, ...

What a great idea.

Our boys were born at 25w/1d on 2/02/05 after I had a cerclage, 7 weeks of complete bedrest and ultimately an infection.

Avery (baby A) was 1 lb. 11 oz. He started out extremely well but had a PDA surgery that resulted in complications that really took a toll on his lungs. He spend about 3 months on a ventilator, a few weeks on a hi-fi jet, a few days on CPAP, several weeks on Vapotherm and ultimately went home 1.5 liters of O2, more than any baby has been discharged from our NICU. This happened after a 171 day stay. His only other significant issues were an inguinal hernia requiring surgery and stage 3 ROP which resolved on it's own. At 14 mos. old, Avery caught a virus (not RSV) resulting in bronchiolitis and returned to the hospital for a one month stay in the PICU. He was off and on the ventilator several times resulting in damage to his vocal cords. Because of this, he went home with an NG tube and ultimately a had a gastrostomy. Today he is delayed in many areas and receives PT, OT, speech and feeding therapy and works with a developmental teacher. He still receives most of his nutrition through tube feedings and is prescribed two breathing treatments a day (both pulmicort and foradil) He weighs 20 pounds and measures 30". Even with all he's been through, we feel extremely lucky with how he's doing.

Mason (baby B) was 1 lb. 15oz. He actually started out with many scares including a severe pulmonary hemorrhage and a level 4 IVH. He then had a PDA surgery, but unlike his brother's, it was successful and uneventful. He spent several weeks on the ventilator, then a few weeks on vapotherm and a few more weeks weaning off of O2 before coming home 121 days after birth. He would have come home about 3 weeks sooner had he not had an unusual case of hypertension that took a while to get under control. His other issues were stage 2 ROP which ultimately regressed and reflux which was treated until he was nearly a year old. Currently, Mason is doing phenomenally well. He weighs about 26.5 lbs. and is over 33", eats everything, and talks nonstop. He is only experiencing a minor gross motor delay -- he's walking, but with some minor uncoordination and weakness on his right side. He receives PT once a week but that service will likely come to an end soon. He's actually been assessed at beyond his chronological age for speech/language, cognitive and fine motor. He's suprised everyone and is truly a very lucky and miraculous little guy.

We journaled their entire NICU stay and much of their big adventures at home here ...http://homepage.mac.com/andiburnett/babies.htm

We have slowed down with our blog but still occasionally throw up a few photos and an update here ... http://www.flickr.com/photos/67754753@N00/

sarah said...

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

Anonymous said...

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

Anonymous said...

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!

SusanR said...

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

Kimblahg said...

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.

Kimblahg said...

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!

Anonymous said...

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

Nancy Brown said...

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...

Tamara said...

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

liz.mccarthy said...

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)

Nicole said...

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!

Anonymous said...

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

Stacy said...

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

Justine said...

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

Ariel said...

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 :(

Erica, Kyle, and Jackson Spiess said...

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

Erin C. said...

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

.

Anonymous said...

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

Jaclyn said...

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/

Our little Miracles said...

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.

Sarah Pope said...

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

Boogie24 said...

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

Danielle said...

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.

Vanessa's Mommy said...

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/

dasia said...

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...