Preemies

Introduction - delivered at 28w3d

Hi everyone!

My husband & I became parents to an amazing, beautiful little girl named Caroline Abigail on Sunday, 11/27. I was 28w3d when I delivered via emergency c-section after developing severe pre-eclampsia. I had been on hospital bed rest for six days when I delivered. Caroline weighed 2 lb 6 oz and came out crying - a sound my husband and I both agree might be the best thing we've ever heard! I spent the next two days in a fog of pain medicine & Mag Sulfate. My daughter was born at 0756 Sunday and I didnt get to even meet her until Monday at 5pm. :(

She was initially intubated but three days later, she decided to remove her own ET tube! LOL She's a fiesty girl! She then went on CPAP and last night - on her 1 week birthday! - she transitioned easily to high-flow nasal cannula. We are SO proud of her! She is such a figher and has done nothing but excel in the NICU! She is receiving trophic feeds (1ml every 3 hrs) and is tolerating them well. She had a PDA which was resolved with one round of Indocin (Thank God!). She has really surprised us at how well she has done in the NICU, esp for being so early.

My husband and I are really struggling emotionally (ok, maybe more so me, lol) which the whole concept of having to leave her there, and how it seems no one we know can relate to our experience - from delivery to now. A lot of our friends haven't called, haven't visited, etc. We don't know if they just aren't sure what to say, or if they are really just disinterested. For me, I almost feel like I was never really pregnant. I never got to experience having a big belly, having a baby shower, etc. I was so looking forward to being hugely pregnant at Christmas and bringing our baby girl home in February. Its just been so surreal and just so...different from what we expected, I guess. We just wish that our hospital could have provided someone to help transition us into the NICU, ya know? No one told us what to expect, what would probably happen once she was born and taken to the NICU, etc. I am a nurse and I was still in shock when I saw her for the first time.

Anyways, so I'm hoping to find some great info and support here. I know this board must be great, since our NICU nurse recommended it! :)

Angela

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Re: Introduction - delivered at 28w3d

  • this is a great board..even better is our stories all in one resource blog..

    i think it's.. www.preemieresource.blogspot.com..

     

    but hopefully one of the other ladies will correct me if it's wrong.. GL.. welcome to the 'club'.. you dont want to be in it, but you do what you have to..to get thru it!!

    IVF - 9/09 - BFN! :( IVF #2 - ER 3/16; ET 3/18 with one embryo Beta 3/30 -- BFN! :( IVF #3 - 5/10 - BFN! IVF #4 - 11/10 - BFP. m/c at 6weeks :( FET #1 - 2/11 - BFP. beta on 2/21 :) Thank you God! :) u/s on 3/7 showed TWINS! u/s on 3/11 TWO heartbeats! Couldn't be happier :)
  • Congrats to you and your family, mama!  Please visit us often, and ask any questions that you might find along the way. 
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  • imageGatorNurse:

    For me, I almost feel like I was never really pregnant. I never got to experience having a big belly, having a baby shower, etc. I was so looking forward to being hugely pregnant at Christmas and bringing our baby girl home in February. Its just been so surreal and just so...different from what we expected, I guess.

    Congrats!   I picked out this part of your post because I feel pretty close to the same.  I was just starting to get my belly (I was due in January) and was looking forward to the last month or two of my pregnancy and getting to spend the rest of my pregnancy spending as much one on one time with my DS#1 as possible and that was all taken away.

    My water broke a week ago and I had DS#2 on Friday.  It's been such a roller coaster and so unexpected that I am just now starting to really realize and come to terms with the fact that he is really here.

     ((HUGS))   

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  • First let me congratulate you! Being a NICU mommy can be tough - weve all been there and I dont think any of us didnt feel similar feelings about the end of our pregnancies. I delivered at 22 w 5d - We had only just found out that our LO was a girl, I had just bought my first maternity clothes etc. I was lucky that our hospital had a care team for NICU parents, and I recieved some immediate counseling. It sounds like your LO is doing great so far! I hope she continues to grow and that your NICU stay is as short and uneventful as possible. I kept a journal, I wrote everyday to DD and told her about what she did, what the doctors said etc. It not only helped me emotionally but it helped me keep track of her daily stats and what the doctors were telling us. GL
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  • Congratulations on the birth of your daughter! I had severe pre-e also and was also in the magnesium fog and can sympathize with a lot of what you said. Have you held her yet? If not, make sure the nurses know you want to ASAP. When she is ready be sure to do Kangaroo time with her, it will be great for both of you. I still feel like my pregnancy was stolen from me and have a had a hard time actually remembering that I wasn't pregnant the first few days after my daughter was born. I'm sure your friends just don't know what to say but they will come around as she stabalizes. Don't be afraid to reach out here. I've only been here a few weeks and everyone is so helpful and just awesome and strong in general.
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  • Welcome and congrats on the arrival of Caroline!  It sounds like she is making fantastic progress.

    I am so sorry that your hospital didn't prep you for what to expect with her delivery and the NICU.  Any information ahead of time makes it less scary.

    I totally get what you're saying about the emotions and looking forward to being pregnant at Christmas and then *poof*, nope, instead you have a baby but it's in the hospital still.

    Hoping the rest of Caroline's NICU stay goes smoothly and she's home with you soon!

  • I understand your frustrations. Being in the NICU can be very trying emotionally. Reach out to the nurses and ask as many questions as you need. Find out if there is a support system in place for NICU parents at that hospital.  Good luck.  It will get easier as time goes on. 
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  • Congrats on your little girl!  It sounds like she is doing wonderful.  I had 28 weeker twins about the same size as your LO.  As you can see in my siggy pic, they are fat, healthy and happy now.  I'll reassure you that your feelings are 100% normal.  I second the preemie resource blog.  There's lots of good info and several preemie stories from other moms including myself.  Keep us update on her progress!
  • We have asked, and there is no NICU support group. This is the same hospital that I work at, so once I have my bearings with all of this, I plan on trying to find out WHY there is no support for us NICU parents and if there's something I can try to do to change it. The nurses are helpful and educate us and are so patient and kind, but they have responsibilities also that don't include constantly consoling me, LOL.

    I definitely feel like my pregnancy was stolen from me, at least the end of it. I ran into my neighbor and she said, "I didn't even realize you were pregnant!"  Awesome.  :(

    Caroline is doing fantastic and we are so proud of her, but I can't help but feeling like the other shoe is going to drop any moment and we are going to get slammed with bad news.

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  • In addition to the NICU support group, you should suggest having the neo's visit with the high risk patients before they deliver.  I knew kind of what to expect from lurking here for the three weeks before my son was born (and from other research I did) but my husband had no clue.

    After I was admitted and stabilized - so about 48 hours after being admitted - one of the NICU neos visited us and walked us through what to expect if Kevin was born at 25 weeks vs 26 and then each subsequent week.  He covered major milestones (I think the lungs are week 28 and the heart week 32 but I probably have that backwards).  It was huge.

    We also had a parent educator (who happened to be my aunt) meet with us the night before Kevin was born to talk to us about the various types of deliveries and what we could expect if I made it closer to term vs if Kevin was delivered by emergency C-section.  Very helpful - again, I already knew most of it but my husband wasn't nearly as scared in the delivery room because he had a heads up about what to expect.

    Not anything you have time to think about now but stuff I found useful and you can tuck away for later.

  • imageGatorNurse:

    Caroline is doing fantastic and we are so proud of her, but I can't help but feeling like the other shoe is going to drop any moment and we are going to get slammed with bad news.

    ((HUGS)) and congrats momma! I spent most of Henry's NICU stay feeling this way! Luckily for us it never happened. Henry just continued to do well. At some point I realized that I never could truly "prepare" myself for the worst, and all the worry was making me miss some beautiful moments with him. That realization definitely helped me some.

    Of course you never pictured it this way! I think none of us did. Skin to skin definitely helped me- I was amazed that his kicks on the outside were the same as they had been on the inside. Finally, at one very vulnerable moment I received a card from a friend that had her baby at 30 weeks 17 years before. She wrote about how she cried and asked "why me, why am I and my baby being punished" almost daily. One day her husband hugged her and said, "I'm sorry, but I see all this as a blessing, we are getting to meet and watch our daughter grow much earlier- most parents don't get to see this part!"

    Of course, you would never risk a preterm delivery on anyone, but it is truly a honor to watch your LO grow and develop from a scrawny preemie to a smiling chunky monkey :o). Pretty soon you will have a hard time believing they were ever really that small! ((HUGS)) again... we're here to listen!

    BFP#1 9/14/10 (EDD 5/21/11); no fetal pole 6w6d, 7w4d, d&c 10/8
    BFP#2 3/16/11, beta 138; 4/12 Baby/HB DS born 9/10/11 at 29w4d due to partial abruption and PTL
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    BFP#3 8/19/13 Another boy! 17P, modified bedrest and Nifedipine helped us have a termie! DS2 born 4/19/14 at 38w5d.
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  • Hi GatorNurse,

    A little over 4 years ago I was in very similar shoes.  My little Madeline was born at 28 weeks exactly due to sudden and severe pre-e (I had a seizure in the hospital the night I was admitted).  I went in on a Friday and they held off delivery until Tuesday.  She was briefly on the vent and then went to CPAP and she went back and forth between CPAP and cannula as we rode the NICU rollercoaster.  In general she was a NICU rockstar ... we faced very few (comparatively) setbacks given her age and size (1 lb 11 oz.).  I spent almost her entire NICU experience waiting for the other shoe to fall.  She did have "typical" preemie issues (A's and B's, temperature regulation issues, blood transfusions, jaundice, NEC scare, infection, feeding setbacks, etc.), but as much as everyone told us they were typical they didn't feel that way to us.  We had no prior knowledge of the NICU rollercoaster from friends or family and it was HARD.  The Book Preemies:  The Essential Guide for Parents of Premature Babies helped a lot.

    We saw few friends and had only a handful of family visits with a few exceptions (My Mom was there a lot at different points in the NICU stay).  We didn't get many phone calls - we had more calls from the NICU staff than from friends.  I don't think anyone had a clue what to say or do or what we needed.  It was an isolating experience to be sure.  But the Moms here and on www.premmiepalace.com were a great source of support because they "got it".

    I also expected to take home happy and healthy baby girl in February after an uneventful pregnancy. But that wasn't in the cards.  Instead I took home a happy and healthy baby girl in February after an 88 day NICU stay.  She came home just before her due date at 5 lbs.  She is now 4 years old and is AMAZING.  It gets harder and harder to believe/remember her NICU beginnings every year. 

    I hope the NICU rollercoaster is a kiddie ride for you and your little girl and that, come February, you can bring home your sweet baby as happy and healthy as you imagined. 

     Oh ... the baby shower and the lack of the big belly ... I know this is getting long, but I have to throw this story in as well ... I hadn't had a shower before DD was born and I hadn't been showing long and wasn't very big yet either.  Once DD was doing really well ... sometime in January ... my family/friends went ahead and threw me a shower.  I felt guilty leaving the NICU to be there for it, but I needed it.  I needed the levity of it.  I needed all the hope, joy, happy thoughts.  I took photos of her, examples of her NICU wardrobe (micro-preemie clothes to show her size), other NICU items like preemie diapers the size of a saltine, etc. And I surprised everyone by showing up with the big belly they would have expected to see at my shower had everything gone as planned.  That really lightened the mood.  I went to Motherhood Maternity and borrowed a maternity pillow they use when you try on clothes.  I wore a maternity outfit I had never gotten to wear yet.  People at the shower thought it was funny.  They all wanted to see me with a big belly ... who doesn't want to go to a shower and see a Mom with a fully pregnant belly?  Anyway ... I say go ahead and have a shower once you are comfortable with your daughter's NICU progress and routine.  You deserve to be doted on and showered with love, support, good thoughts, and gifts.  And you will probably need a break!

    Good luck to you and your family!!!

  • Welcome Angela!! I don't have much to add other than... Go Gators! :)
    ~*~ Nikki ~*~ DS born 2/18/08! TTC #2 since 01/2009 11/01 Round #5 Clomid 100 mg, IUI 11/14, at 10dpiui 11/26 Beta:12dpiui 114 11/29 Beta:15dpiui 755 1/9/10 First U/S: TRIPLETS! 6/20/11 And then there were six... http://andbabiesmakesix.wordpress.com/ Lilypie Premature Baby tickers
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