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!
Sunday, November 4, 2007
Subscribe to:
Post Comments (Atom)
12 comments:
I would be glad to share information and experiences with the new mother you mentioned.
Helen Harrison
Helen1144@aol.com
My son's story is too long to post here, but feel free to direct this mother to his care page at www.carepages.com page name: babyboyemery. As an ex-26-weeker, it was surprising that he was assessed as a 23/24-weeker at birth, and his major complication was his lungs (way too long of a respiratory course to post here). But, he's home today and he's the light of our lives. Anyone who encounters him loves him. He has obvious issues, like oxygen, a feeding tube, reflux, and 'preemie fussiness.' He's developing slowly but growing well. He came home on 2 L/min O2 with no wean, and though the O2 tanks and tube supplies are sometimes a burden, I also accepted them willingly because in the early days we did not know if he would live. I do not know if he will have a worthwhile life as only he can make that decision. He may grow up resenting his prematurity or he may accept his limitations. He's not yet a year old, so those will be answered in time. For now, his life has taught me to live one day at a time. There are days when I'm overjoyed with his life and having him in my arms and other days when I put him to bed and I'm glad the day is over. I'm always reminded by my mother that that is parenthood, period. It's not a prescription for prematurity. His life after the hospital is chronicled in my blog. It's still a rollercoaster!
Best of luck to this new mom. Mostly, just know that you are not alone. This may be the worst tragedy to affect you, but you are not alone!
I too would be glad to share as well. My children were not as early as yours or this new mothers, but I do understand the process and emotional roller coaster of the NICU and then coming home with machines and oxygen.
Brandy
www.apositivesign.blogspot.com
I can offer my story and that of my daughter but they're pretty boring ;)
You can definitely pass along our email to the mom in question and info on Hallie and Olivia's birth and the NICU stay is available on our sidebar under old posts for the twins. Current info is available on blogginghallie.blogspot.com
A year ago I would have been scared to death if someone told me my 1st kid would come home on oxygen, eye damage (ROP), a machine to monitor his breathing, and immature lungs. Well today after being born at 23.5 weeks this summer, all of that is true, and I just had the most amazing weekend! Don't worry about OK. Once the baby is born, it's their fight to win or lose. Don't let anyone tell you that S&E haven't won.
I of course would be more than willing to share my story too. Having a son born at 24 weeks is/was very scary, and the only way I am/was able to get through it is support from moms/dads who have been through it as well. I am not good at commenting on peoples sites, sometimes I don't know what to say, but I have read just about everyone's blogs you have listed and they are all so very informative and they all in a way have supported me through this and they probably don't even know they are doing it! So thanks to all of you moms/dads for supporting me, eventhough you don't even know me! :) Good Luck and God Bless to all!
Olivia and Logan were born at 23 weeks, 1 day. Olivia weighed 1 lb 1.5 oz and Logan weighed 1 lb 1.75 oz and both were 11.5 inches long. You can read more about the day that they were born at oliviaandlogan.blogspot.com and look up Sept 5th's post. Sadly, we lost our Logan on Sept 28th, which I know is hard for you to hear. Olivia continues to thrive and defy all odds. She is now on CPAP and weighs 3 lbs 4 oz. May God bless you and hold you during this difficult journey.
Our son was born at 26 weeks, his main struggles were and still are chronic lung disease, and grade IV & grade II brain bleeds. We were told that if our son survived he would most likely not walk, talk, feed himself...etc. He has amazed everyone, he is almost 9 months old (6 months adjusted) and he is rolling front to back, pushing up on arms, and recently began to sit independantly. He eats baby food great and loves his bottles. Most importantly he is one happy boy! He gets therapy twice a week also. We are not in denial that he will most likely have some sort of life long problems from his brain bleeds, but when you are told not to expect to much from your child...everything else is icing on the cake! This community of preemie Mom's will bless you in amazing ways, you will find encouragement in areas that know one else will be able to offer. We all understand what you are going through, and we would all love to cheer you and your baby on! Click on my name and check out his blog!
What a great post! I would be happy to talk to this new mom about life with a special needs kid. I know that it is sometimes hard to think of in the NICU but anyone who knows Ashton knows that he is AMAZING and SO happy!
Ashton had bilateral grade II brain bleeds that resolved. He had no PVL until his last MRI at the age of 23months. He has severe cerebral palsy, does not ear orally at all but instead has a gj tube that he feeds 16hours a day through, he is considered deaf/blind although he does wear glasses and has recently been hearing with his cochlear implant.
He came home on oxygen, g tube feeds and an apnea monitor. He spent 227 days in the NICU, four days home and then a month back in PICU/peds.
We have been through many struggles and still have many that lie ahead, but I do know that Ashton is perfect the way he is.
destinyisforlife@hotmail.com
I don't have micropreemies, but mine had a 50-50 chance to live when they were born at 28 weeks. They are young adults now. I have read where some parents would ask for a DNR if their preemies had grade 3 or 4 brain bleeds. Both of mine had grade 4, although one had a more severe grade 4 than the other, plus he also had a grade 3. Well, one has very severe disabilities. The other is going to college. Despite their severe bleeds, it was obvious even to us that one was doing a lot better than the other at birth and shortly after birth and all during the NICU stay. So, while one is blind due to ROP, the other never had it at all. Both were at risk for CP. One can't walk. The other walked before our oldest full-term child. I can't say that the healthy twin is completely unaffected by his prematurity. He does have what doctors consider "mild" issues. These were not diagnosed until the later elementary and middle school years.
Post a Comment