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ROAD MAP: The NICU


 
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jennifergg
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PostPosted: January 29 2009, 9:47 AM    Post subject:
ROAD MAP: The NICU
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In Road Map to Holland, the first four chapters take place in the NICU. Not all babies with DS go to the NICU, and not all the babies in the NICU have DS (of course). Are you a NICU mama? What was your time there like, and how did it impact your family, yourself, your baby?

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gbesco
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PostPosted: January 29 2009, 11:15 AM    Post subject:
NICU
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Hi!

I just had a great reply typed & somehow I lost it!! So, here it goes again!

Your book was amazing, especially the first four chapters. I felt like you had been there with me in the NICU. Suddenly, I felt like I wasn't so alone in my feelings!! Thanks so much for your honesty. I loved your style of writing!!

Olivia was in the NICU for 16 days with jaundice, pulmonary hypertension, feeding issues, platelet transfustions, & transient leukemia. Nothing had prepared me for leaving the hospital without my baby. I remember leaving the hospital, riding down the elevator with another couple with a newborn. Even though my husband was with me, I felt so alone, scared, lost, angry & sad.

I had 3 other children--5 and under-- at home. Two of them were very ill. Seth, the 3 year old had pneumonia. Every time I had to leave to go back to the hospital, Seth would cling to me and beg me not to leave him again. Then he'd cry, then cough & cough...ugh. It was heartbreaking. I felt guilty no matter if I was at the hospital or at home. I was needed both places.

The way that you described the scent of the NICU was amazing & so accurate. I remember going to the hospital for something months after Livi was born & I caught a whiff of that 'NICU scent'. Wow--it brought back so many feelings & emotions!!

My 5 year old, Elliot, was the only one of my kids who wasn't sick. About a week after Livi was born he finally got to go see her. Up until then, Livi had rarely opened her eyes. When Elliot came & started talking to her, she immediately opened her eyes & looked at him! He exclaimed 'Mom!! Look at her eyes...they're BEAUTIFUL!' For me at that point, Livi's eyes still screamed 'Down syndrome'. They were the part of her that looked least like my other babies, the part that made her so different. I still cry when I think about Elliot saying this! He had no idea how I felt about Livi's eyes & yet the simplicity & honesty of his statement completely changed my perspective & I knew at that point that somehow, things would be ok.

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Bethany, mom to Elliot 11, Seth 9, Clarke 7, Olivia 3/6/03 Ds
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jennifergg
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PostPosted: January 29 2009, 11:23 AM    Post subject:
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Bethany, what a beauiful, beautiful post. Thank you for sharing your experience. When I read about Elloit's comment, my eyes teared up! So perfect, and so true.

xo

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Shelley
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PostPosted: February 01 2009, 7:10 AM    Post subject:
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I think NICU is a particular warstripe of parenting - one I hope that others don't go near. Roadmap describes it very well. I recall a meeting where a Mum commented that her nurse had 'used me as an example of the 'good' NICU Mum.'. Exhausted and scared as I was that wasn't what I felt - I wasn't a poster girl for NICU but I was a mum - a veteran of this new parenting gig. And that is the feel I get when I read Roadmap.

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jennifergg
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PostPosted: February 01 2009, 10:08 AM    Post subject:
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Hi Shelley! Thanks for commenting!

And "warstrpie of parenting," I love it! That's exactly how I feel, too. I'm definitely not a "model NICU mama" but the babies managed to survive it, so did I, and for me, that's good enough.

(Though I still have a horrid, lasting fear of NICUs and PICUs, which I'm trying to get over...)

xo

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Cate
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PostPosted: February 02 2009, 1:49 PM    Post subject:
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Abby spent ten days in the NICU. She had some health issues, but to this day I wonder if they didn't arrange it a bit, to give us some time to cope with the shock of the diagnosis.

It was hard having her there, but it did give us some time to prepare. I felt much better, physically and mentally, by the time she came home. It would have been harder to jump right into newborn care.

The NICU itself was scary but also comforting. The biggest thing, for me, was seeing the other things we could have been dealing with. Across the way was a baby who'd had a birth injury, oxygen deprivation, and I still think about him and wonder. At least we know what Down syndrome is and what to do about it; an unknown, maybe-brain-damaged-maybe-okay kid is a whole other scary thing.

Another NICU thing: the nurses and doctors and everyone were so kind. And I was impressed that the nurses could do this bland level of chitchat amongst themselves, so it felt comfortable but never anything too serious where I wouldn't want to interrupt. Also, every last one of them had retro names: Debbie, Linda, Ellen, Joanne. Nice names, just not ones kids get now so much.
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Renee Lacey's mom
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PostPosted: February 02 2009, 1:59 PM    Post subject:
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Lacey was not a NICU baby at first but after 10 days at home we went to the NICU for dehydration and heart failure.. We were there for almost 3 weeks and it was the longest time of my life..

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Renee~~ mom to Haley 10,Kassidy 8, & Lacey(DS) 4 & wife to Chris!!





* An extra little Chromosome thats all it is, you see. Where all of you were born with 2, my angel was blessed with 3.*

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DanielsMommy
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PostPosted: February 02 2009, 2:28 PM    Post subject:
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Not a NICU momma here. However, I'm a heart Momma and we did 2 nights in the Critical Care unit after his heart surgery. Heart surgery can be a funny thing. It's the best and worse feeling all rolled up into one. Worst because you face your fear of losing your child....and best because your child's heart will be repaired and that must happen for them to continue living.

Durinig our 2 nights in critical care...I did sleep very soundly....for the first time in almost 2 months. Our surgery was a success, and he had a nurse dedicated to him who assured my husband and I she wasn't going to leave his side and she was going to monitor every breath he took and every move he made. She made us feel so comfortable....we actually slept for a few hours.

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Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.






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MommyAngela
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PostPosted: February 04 2009, 9:20 PM    Post subject:
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We did not spend anytime in the NICU and so I never have any personal references when I read about it. I've never even been in a NICU before! We did get a little bit of a "taste" of it last October after Benjamin had his OHS--he was in the PCICU for a few days and then on the floor for a few more. The beeping...oh the beeping. The wires...hated them. And I absolutely hated having to pump every three hours. Especially when my "baby" was 5.5 months old and I was used to just nursing him.

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Angela
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Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10

www.theamicks-angela.blogspot.com
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pookeymom
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PostPosted: February 06 2009, 11:34 AM    Post subject:
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I was a NICU mama twice over. My twins were 9 weeks premature and we were set to have a NICU stay for that at our local NICU unit, but then complications came Isaac's way and he had to be transported to another NICU 2 1/2 hours away. So here I was with premature babies, a new down syndrome diagnosis, and two babies in two different hospitals. Talk about stress and numbness. I honestly do not know exactly how we did get through it but I thank the Lord for the power of prayer and all the people who were praying for us at that time.

The hardest thing about the whole situation looking back was my three older children and their ability to process what was going on and understanding that mommy and daddy were taking care of their new brothers and yet still missing and loving them everyday. Caleb (baby A) was home the day after Thanksgiving, this would be a joyous occasion, if I didnt have yet another baby so far away in another NICU. It actually caused us more grief because we were not allow to bring Caleb in the NICU as there were to many health risks so when we went to visit Isaac we took Caleb and left this tiny little 4 lb baby with an apena monitor and severe reflux with my really good friend from Pittsburgh and trust me we got phone called every 20 minutes with questions about this or questions about that. How would you feel caring for a newborn infant with problems if it wasnt your child? My friend was very courageous and was such a blessing to us to be where she was so close to the hospital.

We had to run back and forth another month and a half after Caleb was home to visit Isaac before we could finally reunite them together. They were almost three months old before we could get photos of them together.

EDITED TO ADD: I'm so glad that is all over but I am thankful that we had that happen to us to make us grow as Christians and parents and our marriage is stronger as well. All Glory to God Smile

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BethsFamily
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PostPosted: February 12 2009, 11:35 AM    Post subject:
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(Love that user name ... Pookeymom! Very cute). I'm a husband to a NICU mama. She and our daughter spent 2 weeks in NICU (10 minutes from home unlike your experience Jennifer) for an early infection and pulmonary hypertension, then 3 days in a paediatric ICU after heart surgery (when Beth was 12 weeks). I've got to say that our experience was superb. I think we had a fear in the back of our minds that our daughter would be given some sort of inferior treatment or less attention because she was 'chromasomally inconsistent'. On the contrary, I trully believe we were given EXTRA SPECIAL treatment. The nursing staff gave her so much attention I ended up feeling a bit conspicuous and guilty and hoped other parents weren't getting jealous. One nurse in particular was constantly attentive to her and would treat her so tenderly it was beautiful. We later learnt that she has a 55 year-old sister with DS.

We've been struggling to find a way to thank the NICU staff. Chocolates and a card seem so pitifully inadequate. Any suggestions?
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jennifergg
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PostPosted: February 19 2009, 10:04 AM    Post subject:
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A "thank you" is an excellent idea, and I don't think you can do it wrong--meaning, I think any effort would be so appreciated.

Having said that, I'm sure some gifts are more appreciated than others. I know there was a wall of photos that parents had sent in, of the NICU babies as they'd grown. And one time, someone had a bunch of pizzas sent (to the lounge) for the staff to enjoy.

I'm hoping others will have suggestions, too?

xo

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Last edited by jennifergg on February 20 2009, 8:02 PM; edited 1 time in total
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nancyreader
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PostPosted: February 19 2009, 11:23 AM    Post subject:
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I don't have NICU experience so that part of Roadmap was very enlightening. We had CICU but that was only 3 days at 5 months of age for heart surgery.

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Maria (9)
Elena(7)
Gabriella (4) (DS & repaired AVSD)
Our story: GIFTS - page 130
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MeganC
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PostPosted: February 20 2009, 11:20 AM    Post subject:
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Abby was in the NICU for 6 weeks. 2 days at our local hospital, and then the rest at one of the local children's hospitals.

I agree with some of the other posters about it giving us some time to come to accept things. By the time she was ready to come home, we were happy to have her. If she would have been able to come home at 2 days old, I don't know how we would have held together.

We try to go back each year on the day that she was transferred to that children's hospital and bring bagels. We also bring toys at Christmas time, but not really for the NICU. That was because of a separate experience in 2006 when she was admitted over Christmas. She got so many presents each day she was there, that we want to be a part of that for other families.

We also keep in touch with one of her NICU docs on Facebook, lol.

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Mommy to AJ (5 yrs) and Abby - T21 (9-14-05)

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