Tell me your story

2momsinCA

Hi all,
My twin boys were born in May at 27 weeks 6 days both weighing 2lbs 10oz. My pregnancy had been uncomplicated and it was a total surprise and I did not get the steroid shot. They had to be on high frequency vents for the first week of life. They went through the NICU in 70 days for boy A and 84 days for boy B (feeding issues- desats when feeding). Boy B had 3 major infections, one was pseudomonas in his lungs and he had to be reintubated and put on isolation. Boy A had a bit harder time weaning down to no breathing support than this brother (odd, since he never had any infections) but otherwise no complications. They came home a month ago and now weigh 8.5lbs (A) and 7.5lbs (B) and life now revolves around their feeding and care and we are so happy to be out of the NICU.

For you preemie mamas out there who's babies have come home, how are things going now? What are your lasting issues/delays? When (if ever) did you put your baby in day care? (I'm staying home this first year). I know every baby is different, unique, and develops at their own pace. I would love to read your stories!

jbranden12

Hi there! For those on mobile, Anna is our second daughter born in January 2013. Her big sister Patricia was born still in March 2012 after an uneventful pregnancy. Anna came at 26w3d after another uneventful pregnancy. We spent 83 days in the NICU and she came home at just over 38 weeks GA. 

For breathing, we were on the ventilator roller coaster then graduated to CPAP, cannula for a couple of days, then oxygen free at 35 weeks GA. She received synagis her first season home but then we were able to cut the pulmo! For eating, we started non nutritive breastfeeding at about 33 weeks and tried the bottle and breastfeeding for the first time at 34 weeks. She did not do well and there was concern of aspirating, so only speech was allowed to feed her for a while.  We discovered after several NEC scares that she has MSPI which also complicated things. I was pumping and cut milk and soy out of my diet. As most of you can attest, feeding was by far the longest and most frustrating process and we were days from a gtube when she finally figured it out and she came home breastfeeding and bottlefeeding. We are still nursing at 20 months! Thankfully, she grew out of the milk allergy at 15 months but as far as we know she is still allergic to soy. We'll probably test her this fall. 

Anna's biggest hurdle was/is her brain bleeds, grade 4 on the left and grade 2 on the right with PVL and porencephalic cysts. She developed hydrocephalus and was monitored weekly in the NICU but the pressure never came to a point where she needed to have fluid removed. Unfortunately, after being home for two months she did need a VP shunt placed. She has since had one malfunction which required another brain surgery. This condition is my greatest fear, because she is at very high risk for seizures which of course can cause additional bleeding or strokes. I am terrified that she will learn and develop so much only to lose it all. 

At 14 months actual, Anna was officially diagnosed with hemiplegic cerebral palsy. It was a diagnosis we knew was coming and didn't change anything, but it still hurt. However, what is more important is that she is continuing to grow and develop more than many doctors thought possible. I don't talk about it much, but we were offered the option of taking her off the ventilator when her brain bleeds were discovered and though we never felt pressure, we definitely knew who the doctors were who thought we should. 

I went back to work three weeks after Anna came home as my FMLA and vacation ran out. She is cared for during the day by DH, a full time student/SAHD and my mother. I miss most of her therapies (see my other post) but make it to all of her specialist appointments, though now we are pretty much down to the neuros. 

Here is Anna having chocolate ice cream for the first time last weekend:

gault530

My b/g twins were born at 26w4d rather unexpectedly.  I had high b/p since 18w of pregnancy and took medication 2x/day.  I had awful pain in my side at 26w2d and checked my bp at 26w3d, which was extremely high (and on a Sunday).  OB told me to recheck in the am and come in if it was still high.  It was, so I went to the office, my urine was +4 with protein (highest it can be) and I was sent to the hospital.  A few hours later, I was diagnosed with severe pre-e and HELLP.  They gave me the steroid shot and hoped that I could wait for delivery for 48 hours, but the HELLP worsened and I had to delivery.

Both babies were exactly 1 lb 13 oz and 13.5" long.  Baby B (DS) had a collapsed lung at birth.  Baby A (DD) came out crying, which was so sad, but reassuring at the same time.  Baby B had NEC (infection in his gut) at 2.5 weeks old, he had two blood transfusions and recovered well.  Both had PDA's, but didn't require medication or surgery to fix them. Neither baby had a brain bleed which the Neo said is a miracle they didn't have slight bleeds.  At 74 days in the NICU DS came home ad DD was at 88 days (she had reflux and a milk allergy that caused desats when eating). DS did come home on o2 and was on it until he reached his due date (about 3 weeks).  DD did not come home on o2 which is rare because we live at high altitude.

Since then they've done exceptionally well.  They are still small and less than 3% on the growth charts (except DSs giant head) but literally have no health problems due to prematurity.  They are both walking (DS started at 15.5 months and DD at 17 months) and are both saying a few words.  We only have PT every other week now and it's focused on stepping up stairs.  Once that's complete, we're done!  She doesn't think they'll need speech therapy because they are starting to talk a bit. 

I have a nanny that comes to my house and she's so great with the kids.  I don't imagine sending them to a daycare anytime soon.  I have an older DD and she brings plenty of germs home from kindergarten. 

DD (Baby A)


DS (Baby

dunnmommy

My DS2 was born at 24 weeks after 9 days of hospital bed rest. I had an unexplained membrane rupture at 23 weeks which led to a prolapsed cord which led to an emergency csection. I received 2 steroid shots in the hospital before DS2 came. DS1 came at 39 weeks and had a collapsed lung but nothing serious. And we are currently 19 weeks preggers with our third boy.
DS2 weighed 1lb 12oz and was 12.5 in long. He was on several different types of ventilators for 12 weeks. We were told little white boys were the weakest in the NICU and to expect severe ups and downs. He finally moved to CPAP and jumped to high flow O2 after that. He had a double inguinal hernia that showed up around 28 weeks gestation. There were days when he would desat so low that he turned blue and would have to be bagged for long periods of time. He had over a dozen blood transfusions. His biggest hurdle was feedings. I am a strong believer in breast feeding even though they told me we would be able to leave the NICU faster if I bottle fed him. He would forget to breath while BF and again turn blue. Finally, after 116 days in the NICU he came home. He came home on a heart monitor 24/7 and a pulse ox monitor at night. We also had O2 for feedings. He has had several surgeries since being home and an appt of some sort almost everyday but he is terrific. At 19 months he is walking and eating solids but nonverbal (he does sign). And, my DH works his butt off so that I am able to stay home with our boys!

2momsinCA

Thank you @gault530‌ and @jbranden12. Your children are so beautiful! I'm sorry to read that Anna has CP.

My sons also have reflux issues and take Prilosec. I've eliminated dairy from my diet since a milk protein allergy was suspected and @jbranden12‌ it sounds like I may be off dairy for some time to come.

I'm breast feeding and pumping and their bottles are fortified to 22 cal with elecare, they also take polyvisol and ferrous sulfate. How long did you fortify and give these vitamins? They predictably tend to spit up close to their entire bottles when I give them the iron and vitamins. Seems counter productive. @gault530‌ did you breast feed/pump? If so were you able to keep up with demand as they grew? In the NICU I had no problem pumping an over abundance so I filled our freezer but now that they are home I don't have as much time and we are tapping down that freezer supply.

Thank you for telling me your stories!!

jbranden12

@2momsinCA this website helped us a lot with recipes: https://www.mspimama.com/

Anna got polyvisol for about a year after we came home. We found that giving her the vitamins in a bottle with like 1 oz, then immediately following it up with another full bottle helped, rather than "contaminate" a whole bottle. At one of her checkups they did a quick prick to check her iron and her doctor said we could d/c it. It was fantastic! 

I have to admit your words gave me pause when you wrote you were sorry to read Anna has CP. I am absolutely not offended because our journey has been really, very difficult,  but I also know everyone has their hardships. Some SN parents might be offended by that statement, but I think context matters and I know you meant it in a good way. I am not one of the special needs parents who would say there is nothing about Anna I would change. If I could go back and keep her from getting the brain bleeds, of COURSE I would. But I am working hard to accept where she is and be thankful for who she is. Some days it is easy, some days not. Right now, the hardest parts of parenting her are getting her to sleep past 5AM and not throw all of her food on the floor. Those are typical toddler things and I am thrilled! 

2momsinCA

@jbranden12‌ I'm so sorry! I did not mean it to offend in any way. I'm a mod-severe sp ed teacher and work extensively with children with CP, typically with quite severe hypertonicity and seizure issues- clearly not the case with Anna. I meant it more in the sense that I'm sorry that the IVH led to any sort of diagnosis or lasting complication. The degree that that diagnosis ends up determining anything regarding her developmental trajectory is definitely not a set course- I am certain her issues will be more typical toddler/child issues rather than the types of issues I encounter at work. I apologize for my previous comment.

jbranden12

@2momsinCA no apology necessary, really! I admire the work you do. My DH is currently in school to be a SpEd teacher as well. 

thishappyhouse

Hi!  I havent been on in a long while but I am glad to see this new group!  My daughter Virginia was born in October 2011 at 25weeks 0 days after nearly a month of hospital bedrest.  She weighed 650grams and spent 124 days in the NICU.  Her NICU issues were mostly related to CLD, heart and kidney problems.  She spent 8-ish weeks on the vent, had alot of problems with diuretics and was the world worst bottle feeder.  

Virginia is now nearly 3 and doing really well.  She was discharged for birth to 3 services today and we will move on to private PT and maybe OT.  We also have started integrating community activities such as ballet and tumbling to help supplement PT.  Her language has exploded lately and she attends a typical preschool.  

Lauracox3

Hi ladies! I am currently on bed rest at 28+2 and facing an IUGR diagnosis. I am so inspired to read your stories about how well each one of your children is doing. Hopefully I will be able to contribute to this group when my little one arrives in the near future. We are currently at 1.8 lbs or 666 grams so hopefully I can incubate a little longer!

Missi576

Hi Lauracox3!  Welcome  Hopefully today finds you still hanging out pregnant!     28+2 is a great place to make it to!  Of course, we're cheering for you to get all the way into the 30's... if not further if it is safe and possible  

I"m trying to remember to check in her daily.. or at least every few days.  With two kids in 7th grade being virtually schooled (not twins, one jumped a grade) and twins just over a year already walking.. well, umm.. yeah  I tend to pass out at the end of the day!  

Lauracox3

I am still pregnant today, thank God! I am at 28+4. I never thought if be counting the days until 29 weeks, but I am. My Doppler is Tuesday, so we will hopefully get good news then. Until then, I'm in bed with baby on a heart monitor. At least my room has a good view. It's hard not seeing friends and love ones though. It's nice to have boards like this to keep me connected to the outside world.

Missi576

Laura, have you heard of Sidelines?  They are an awesome bed rest and beyond support group, now on Facebook.