What does the future hold?

Hey there...
So here I'm doing more today than posting pics of my little ones and talking about the new cute things they are doing.

I received an email from a woman who has a newborn 23.5 weeker. Someone emailed her my blog, which was so touching because this is part of why I post (also to update the fam and friends.)
Of course she is at the place that so many of us were...your child was born way too soon, you are bombarded with information, statistics, and decisions to be made. It's a whirlwind of emotions, still too painful for me to think about without crying. I wouldn't wish the experience on anyone, and my heart goes out to EACH and EVERY family who is undergoing that pain or has in the past.

One of the biggest concerns (other than the fact that your child can't breathe, is desatting and having bradys to the point that they have to manual bag them several times a day) is what is the long term outcome for my child/ren and what affect does all of this have on their brain? I remember trying so hard NOT to think about this, but I can't deny it was the ever lurking thought that would sneak its way in numerous times per day. How are other kids born as early as mine doing? Will they be those miracle children? Will they defy all odds? What if I have two children who can't walk, talk, or self feed? How will I manage that? Am I strong enough to do that?

I have come to a totally different place now. I read a lot, and thanks to the many blogs I found, I realize one thing that I've come to accept. My children will never be "normal." They will always be affected in some way by their early birth. They get sicker easier than others and it hits them harder. Serena's voice will probably always be affected by her paralyzed vocal cord. EJ might not have the most finesse of all his peers. I don't even know how he will do motor wise even though his pedi tells me he will walk and do all these things in time, but no one knows this for certain; and you know what? That's ok. It's okay that when they are around other 9 month olds I can see the difference in development, size, and head shape/size. It doesn't matter that I may have to help them with many things including school work. I accept the fact that this is not a typical journey through parenthood, where your child hits their milestones on time and develops like a typical child their age. My life won't be about the typical because there is nothing typical about having your children leave your womb at only 23.5 weeks. It's unnatural and pretty damn unfair in my opinion, but I accept it's my reality, and as much as I wish my children could have had their full 40 weeks, it wasn't the case and here I am today with two beautiful children who weren't expected to survive. So how can you tell me my life is doomed to be miserable? (reference people who don't believe in resuscitation at my kid's gestation.) My life won't be miserable because I am THANKFUL for the lives of my children. I am GRATEFUL that neonatology saved their lives. And NO I don't want my children to experience pain or suffering, but because we love them and parent them in a loving and nurturing way, I believe we will get through any obstacle because that's our job as their parents. No, don't get me confused, I'm not saying we can "cure" our kids with love, but what I am saying is we'll get through the tough times and do what we can as parents to manage our children's care and lives in the best way possible.

My heart goes out to this new mom who is searching for answers and trying to find SOMEONE out there who has been through this and understands. I can't predict the future, just like the NICU team can't, but what I do know is that the kids who "on paper" appear to have the significant to severe disabilities, that I admittedly was so afraid of, are happy, loved, and amazing.
New moms want to know the experience of others so they feel less alone. They want to prepare themselves for what lies ahead. Even strangers wonder, and I have had a couple of people ask about the babies (they see the nasal cannula on EJ). I explain they were born at only 23 weeks gestation and sometimes people ask about their long term outcomes. When they say "oh they'll catch up though." I say "no, probably not." I say, "they will always be affected by their early birth in some way and I am ok with that; I am thankful they are alive." Someone else asked if they would have "problems with development" because they were born early and I say "yes, they are delayed." I am in no way ashamed of my children and see no reason to sugar coat things to make the public feel more comfortable. I don't NEED to know about their cousin's next door neighbor who was only a pound at birth and who is graduating from college. That's wonderful, but I don't NEED that reassurance to tell me everything will be fine, because I'm ok with the fact that our journey will be atypical.

One thing that this new mom is questioning is brain bleeds. Serena had a bilateral grade II with what appeared to be a cyst-like image that didn't go away, so they predicted that it was NOT artifact. I don't know what it was, I had convinced myself it was PVL, and still might be, who knows. EJ had what was first deemed a grade II bleed, but then the next ultrasound tech said grade I. I don't know much about how a bleed affects a child long term unless it is a large bleed with hydrocephalus...in that case I know sometimes shunts are needed, and it can affect development. But I have come to realize is that simply being born at 23,24,25,26 weeks affects development regardless of a head ultrasound. We need to abandon this notion that everything will be ok. And what is "ok" anyway? Some kids have extreme difficulty eating and oral aversion and reflux and this is life altering for the family. They can walk and talk, but let's not minimize what they deal with. There are varying issues we deal with as parents of preemies and many of us found out about them by reading other's experiences, not from what is written in books, at least not much. There was very little written about babies born at 23 weeks, because let's be honest, how many years have babies born at this gestation been routinely resuscitated? Even today there is still a CHOICE about resuscitation at 23 weeks at our NICU and many others. The information I gathered was from blogs, and it has been a saving grace.

So, if you'd like share your story with this new mom who will be reading this post and for the many others out there who are just coming into their NICU experience and just finding the blog world, please comment.
If it's a lot to write about in a comment and you would be willing to provide info and support through private email, feel free to just comment your email address or website.
Thanks!!!
Just a reminder. In my January 2006 archives one post "101 days recap" does include my almost daily journal of what the twins went through from birth to January. I then found blogger and began posting here. But I do have all the details in journal form on that post.

Here's our *abbreviated* story:

I went into a routine ultrasound appointment at 23.2 weeks gestation. Found that my cervix was shortened and I was funneling. Admitted to L&D, given the 48 hours worth of steroids. 3 centimeters dilated upon admission. Given oral med to stop contractions (I forget the name). Never received mag. because they believed I was staying at 3 cm. No change from 23.2-23.4. Felt sudden pain at 1am at 23.5 weeks gestation. Was complete (10cm) and Serena's foot was coming down and kicked the OB's fingers when she felt my cervix.

Serena Lynn Rodriguez "A Twin"
Gestational age 23 weeks and barely 5/7ths...(born at 3:18am on the 5th day)
Born by emergency classical C-Section. Breech
Birth weight:
1 lb 3.2 ounces 12" long. Lowest weight 14 ounces.

NICU Stay:
122 days

Respiratory:
No oscialltor. Conventional vent until Nov. 16 (48 days) Stayed on CPAP after first attempt. Never returned back to conventional vent.
Treated in NICU with one short course of steroids (Dex)
CPAP until Nov. 28 (12 days) onto nasal cannula
Came home on nasal cannula at 300 cc. a little more than 1/4 liter O2...now requires O2 only while in a deep sleep. Has a paralyzed vocal cord from PDA ligation, sub glottis stenosis and tracheal malasia (floppy and narrow airway.) Aspirates on thin liquids...must thicken liquids. Repeat bronchoscopy scheduled for January.
PDA:
PDA surgically ligated after attempts of Ibuprophen (first time used at our NICU) originally worked, and later failed when ductus reopened.
IVH:
Bilateral Grade II. IVH resolved. "Echogenisis" detected on head ultrasound. Not artifact,not definitely being called PVL or anything other than an "echo." Still unsure of what this is or the implications.
ROP:
ROP stage 2/3 zone 2, some zone 1, no plus disease. Treated with laser surgery in NICU.
Hearing:
"Referred" in left ear on hearing exam in NICU. 2 months later passed hearing tests on both ears. Tubes placed in both ears to drain fluid in July 2007.
Current meds: Multivitamin with fluoride. Flovent 110 mcgs BID. Nebulizer PRN.

Development:
Rolling both ways, Sitting, crawling, pulling to stand, bending down while in a standing position while holding on with one hand. Will take steps while holding on. Vocalizing saying "ba ba ba."
Eating: baby foods and table foods. Drinking formula from a bottle. Can feed herself small pieces of food off the tray. Currently going through stranger anxiety. Wants Mommy the most! :)
EI once per week. ST consult in the works, hopefully ST once per week.
Sleeps through the night


Edwin Kelly Rodriguez, Jr. "B Twin"
Gestational age- 23 and (barely 5/7ths...born at 3:20am on the 5th day)
Born by emergency classical C-section. Transverse.
Birth weight:
1 pound 3.6 ounces 12" long

NICU stay:
122 days

Respiratory:
Oscillator Sept. 29-October 29 (30 days) Came off oscillator only after first steroid dose given at 28 days old.
Conventional Vent until Nov. 27th (29 days after coming off the oscialltor)
Made it to CPAP on Nov. 27th Stayed on CPAP after first attempt; never returned to conventional vent.
CPAP until second week of December (not sure of the date...CPAP about 18 days) onto nasal cannula.
2 courses of steroids (Dex), came home on Pregnisolone at 2.5 mls every other day. Weaned off Preg. after several weeks.
Came home on nasal cannula at 500ccs, aka 1/2 liter O2.
Was weaned down to 150ccs, but EKG determined pulmonary hypertension last spring. Back up to 450ccs with a no wean order. Finally began slow monthly wean...down 50ccs per month. Currently on 200ccs, with a down 50ccs wean biweekly.
PDA:
PDA surgically ligated after 1st dose of Indocin originally closed the ductus, but it reopened after a couple weeks.
IVH:
At first called a grade II IVH, but later called a grade I. Resolved itself by discharge.
ROP:
ROP stage 3 mostly zone 2, some zone 1 and plus disease. Treated with laser surgery.
Reflux:
Reflux medicated with Reglan and Pepsid in NICU for severe reflux with NG tube resulting in ALTEs episodes, required chest compressions and manual bagging to bring him back. Came home on Pepsid; switched to Zantac. Ended Zantac after episodes frequent of projectile vomiting once we came home from NICU. Back on Zantac now to reduce pain from reflux. Still refluxes, but only vomits when sick (mucus build up) or when he gags or has a coughing fit.
Meds:
Multivitamin with fluoride, Flovent 110 mcgs BID, Neb PRN, Zantac

Development:
Rolling from back to belly, belly to back, on tummy with head raised in prone position. Rests on forearms but does not push up on hands in prone position. Combat crawls on belly by pulling with arms and bending and pushing with knees/legs. Often keeps head down while "crawling." Sitting unassisted for a few seconds. Can sit with the support of a Boppy pillow for longer periods of time.
Eating: eats baby food, table food, and drinks formula from a bottle. Is working on picking up small pieces of food and consistently getting them into his mouth.
Language: says "hi" "hey" "da da" "daddy" "ba ba" "ooooo"
Receives EI once per week, will begin PT once per week beginning next week.
Sleeps through the night. Thank goodness :)

And most importantly, Serena and Edwin are extremely happy and social. They know they are loved and love us right back. They are miracles and are sooo amazing! And soooo darn cute!