Iowa

Hi,

My name is Nickie and I am from Dubuque. I had my little girl Grace at 28 weeks and she was born on July 4, 2005 at UIHC. After having a cerclage done I thought I would be able to keep her in but she came 1 day shy of 28 weeks. After having an emergency C-Section she was born at 1 lb 4 oz. She is a tiny little thing. She was off the ventilator after only 3 days old but last Wednesday she had what they like to call spells and she had 2 while I was with her. One with color change. I was freaking out on the nurses because they didn't seem to get too upset about it. Well they have had to cathereterize her and give her blood transfusions and put her back on the ventilator. I had her on the 4th and on the 12th I was still in the hospital myself with what the infectious disease team called a Citrobacter Freundii Infection and 2 staph infections in my C-Section wound. They had to cut me back open and drain the infection. My total stay in the hospital was 18 days and I had to come home with a pick line in my arm for 2 more weeks of Zosan (antibiotic). Now today I talked to Ann there who is one of the Nurse Practitioners for my baby and she said that they had to put lines back in her after taking them out yesterday for antibiotics. They have been taking chest x-rays of her quite a few times a day and now she tells me that my baby has the same thing she had before! I was Never told that she had something before so of course this came as a shock to me. Come to find out she has a Citrobacter infection as well. Man I don't know what to do or what to think about this anymore. I don't feel like they are telling me everything because I find out things from different nurse practitioners that I was not told before about her condition in the past. I am having a hard time trusting anyone right now. This is not my first time having a baby but it is the first baby to survive. I am scared to death and I don't know what to do. Has anyone else ever heard of this or had this type of infection? I have been told that 3 others around me on the mother baby floor had this at the same time as me. This is a tad bit scary and I know how bad I was and how I felt having it and now my baby has it. Any suggestions or coments?

A Very Concerned Mom!!!
Nickie in Dubuque

Kiayia99@aol.com

Please feel free to write to me with any suggestions or comments.
Thanks!!!

Hi Nickie,

Welcome to SHARE! Congrats on the birth of your daughter, Grace. I know the NICU is a scary time. My son is a graduate of that very same NICU and can assure you that you are in EXCELLENT hands. The team of doctors and nurses there were outstanding, and although we all start a little nervous... they had completely won me over by the end of the stay.

When you visit Grace, take a moment to read through her chart and get a daily report on her meds, feedings, diapers, etc. This may help you stay in the loop. You might not have been told about the first infection perhaps because you were still sick and a patient yourself? I'm not excusing the lack of information, but perhaps it was a case of nurses thinking another nurse told you, or something like that. I always made a habit of asking "What's the latest" right after rounds. I also kept notes of the meds and antibiotics Logan was on, whether or not he was on NVN or breastmilk and how many lines he had in. Ask, with each visit, "What has been changed?" "What are the vent settings?" "Are the any new meds?" "What did the docs/NPs say?" Sometimes getting the right information, means asking the right questions... and when all the NICU terminology is new, it's hard to know what to ask!

I hope this has been helpful. I know you're scared. Please rest assured that you are working with an amazing staff. I know that won't take away all the anxiety, but I can tell you that I now have a happy, busy 2 yr old son... but 2 years ago I was where you are now.

Sincerely,
Darcy

Hi Sarah,

We're in the DSM area too (NW suburb) and we like it here a lot. I am not familiar with Blank's NICU but I am getting to know the ER pretty well. (blah!)

We like IC alot and the NICU there is fantastic. Hope you're soon able to find a WI hospital you like as well as Blank/UIHC!

Darcy

I am scared out of my mind I was there to see my baby today. She wasn't having a good day at all. They had to catheritize her today along with a blood transfusion on top of cbc's and to top it all off she had to have a spinal tap today. I am about to lose my mind. Where you in Iowa City?

Thanks,
Nickie

Yes... two years ago we were in that very same NICU. I was also there a few days earlier with PROM at 28 weeks. My son arrived at 28w2d and spent 12 weeks / 86 days in IC.

This is probably the scariest thing you will experience with your child. It was very hard and you will probably go through something similiar to a grieving process... not because you lost your child... but because you gave up a pregnancy you weren't done with, your child is hospitalized instead of inside you where she belongs and the new vocab and medical terminology is SCARY!

Soon the days will better than they are worse... and not much longer after that the good days outnumber the bad days by a lot... and eventually the bad days will be few and far between! Hopefully then, you'll be ready to go home.

Keep us posted on your daughter's progress. I wish you both the very best!
Darcy

I only have a few minutes and am typing one handed so this will be short. I am ColtnAlyssa'smom see previous post. I lost a son at 20weeks along and had two cerclage pregnancys since. my son Colt born 11/12/2003 at 37weeks. Spent two weeks at uihc nicu. Then Alyssa came emergency csect at 33 weeks after an attempt at 32 weeks. She spent 48 days at uihc came home 1/17/2005. I may also have info on that infection. Is there a phone # i can maybe reach you at during the weekdays? MJingst@webtv.net! I am pretty busy with a 20m and 8 m old but i can thanks to my cordless talk that wwawy.

Harper which is by Sigourney

I'm an Iowa transplant.. originally from the 'burbs of Chicago so unless the city has a college, a capital, or one of my husband's relatives I usually have no idea where it is. LOL.

However, a quick mapquest search pinpointed me!

Welcome to SHARE. Alway glad to have a fellow Hawkeye (or even a Cyclone).

The March of Dimes Iowa State Chapter
Public Affairs Committee cordially
 Invites you to the

Eighth Annual Lobby Day
at the State Capitol in Des Moines

Thursday, February 2, 2006
7:30 – 9:00 a.m.
Legislative Dining Room
Ground Floor, Iowa State Capitol

This important event is open to all volunteers interested in advocating on behalf of the March of Dimes. The morning will consist of an open forum to talk one on one with your legislators. We will then open the forum to questions and an opportunity to further discuss the March of Dimes priority issues with our state legislators.
March of Dimes Iowa State Chapter 2006 Legislative Priorities:
1. Increase the state funding support of smoking prevention and cessation programs affecting women of childbearing age and children
2. Maintain current maternal and infant health services through Medicaid, hawk-i and Iowa Cares
3. Mandate of insurance coverage for all Iowans with PKU related disorders for metabolic treatment.
4. Reinstate full funding to the Congenital and Inherited Disorders Registry
5. Expand Medicaid to include Presumptive Eligibility for children

A REQUEST FOR VOLUNTEERS: Your voice matters! We need volunteers to stand up for maternal and infant health issues in the state of Iowa. Come experience the legislative process in action on February 2nd!! There will be a volunteer training on Wednesday, February 1st at the Valley West Inn, West Des Moines from 5:30 – 7:00 p.m.

Would you personally invite your state representatives to this event? We urge you to invite your senator and representative to the breakfast on Thursday, February 2nd, by phone, email, or letter. Let them know that their constituents are looking forward to seeing them there. Please do not contact your U.S. representatives at this time.

How to get in touch with your legislators:
On the Internet: go to www.legis.state.ia.us, then under ‘members” click on “find your legislator”, then fill in your home address and click on “submit”. Your state legislators and their districts will be displayed, with their office address, phone, website and email address.

If you want to call your legislator – try calling between Tuesday thru Thursday 9:00 a.m. – 4:00 p.m. at the capitol. To contact state senators: 515-281-3371. To contact state representatives: 515-281-3221. Most of the legislators are in their district Mondays and Fridays – so you can contact them at their district office phone number on these days.

Please RSVP to Suzanne Heckenlaible, Director of Field Services & Public Affairs at 1-800-627-2412 or 515-243-2244 or email sheckenlaible@marchofdimes.com for either event!

You can also direct any questions to me if you catch me online or to my Share email.

If there are any Share members who would like to participate in our local Walk America this year, I welcome you to contact me on Share or contact Carla Marcellus (Division Director - 515 243 2244).

We are having a Team Captain training session tomorrow - Thursday, Feb 23. Please call Carla to get details.

We also welcome any Share members to join our Family Team and walk with us on May 6th. It's going to be a great day for a great cause. Walk day is always so much fun!

Darcy

Calling all families in the Des Moines area!!

Our division is having it's First Annual Family Potluck and YOU are invited. The event will take place at a family-friendly park on August 12th.

If you would like to come, or want more information, please call our wonderful staff partner and division director, Carla Marcellus at (515) 243-2244.

Don't forget to tell her you read about it on Share! See you there,

Darcy

Hi my name is Brenda and i had my son Caleb at 28 weeks. He was born with a hernia on his left side. When they went in to put the lines in thru his umbilical one went in ok then he went to put the next one in and it wouldn't go in. He kept trying and finally he stopped. Caleb ended up getting a blood colt and when he was a week old he had to have his left foot amputated. Plus he has had so much more but i don't want to over write but i will say he is still in the NICU and on the ventilator. It has been a long hard battle for us all. He is in Mercy in des Moines. Thanks Brenda

Our son London (26 weeker) spent time at the University of Iowa for major surgery. It can be a bit intimidating, the size of the hospital is enormous. But I grew up there and was used to it.

The NICU there is excellent! We also go to Blank for therapy, and I have visited their NICU too.

Best of luck with your new home.

-Shonda

We were also in Iowa City three years ago with London (26 weeker). Trust me, you are in excellent hands!!

-Shonda

Hey guys, Darcy has put a lot of effort into this first ever reunion. So let's all drop in and show our support for the Des Moines chapter. We'll be celebrating that new state-wide record of Walk money too!!

-Shonda

Brenda, Welcome to Share! Congratulations on your son Caleb's birth, what a sweet name.

Thank you for sharing your story. I'm so sorry Caleb lost his foot, but hope he can be fitted for a prosthetic when the time is right. Please feel free to share as much or as little as you like here, you can never "over write" here. The parents on Share come here for support, information and encouragement. You may be surprised to find others who have been in your shoes.

Our triplets and our daughter were all born at Mercy. Drs. Wahlig and Elsberry oversaw the majority of their care. You are truly in gifted and skilled hands. Also, the nurses are wonderful. They care about their little patients, and the parents too.

-Shonda

Hi Brenda,

Welcome to Share!! Congratulations on the birth of your son, Caleb. I am from Panora, Iowa and we are involved in the March of Dimes Chapter in the Des Moines area. My son, Gavin, spent the first 111 days of his life in the NICU at Blank Children's Hosp. in Des Moines!

I'm sure you have fought a long hard battle and so sorry to hear about Caleb's foot. I encourage you to come to Share for support. They are a great group of people here.

Again..from Iowa..welcome to Share,
Crystal Pote (Gavin's Mom)

You know we'll be there... A big thanks for doing the planning for this! We appreciate it!

Crystal

Brenda,

Welcome to Share... congratulations on the birth of your son. I know things are really difficult right now because he is so little and so sick. I too had a 28 weeker and I am local to you.

I also happen to be our state's Mission Families Chair. My job is to act as a resource for families in Iowa. My first recommendation is always to find Share - so you're already one step ahead of me. This site can be a source of tremendous comfort and commeraderie. Please let me know if you and your family would like to get involved in local events such as picnics, Chefs Auction or our biggest fundraiser - WalkAmerica which held each spring (May 2007!).

How is Caleb doing? Is he still intubated? Please keep us posted on his progress. Hang in there.

Warmly,
Darcy
logansmom28w@shareyourstory.org
IA347@marchofdimes.com

If any families would like to be included in a video for mission awareness, spolighting our babies to be shown at Chef's Auctions or various Prematurity Awareness Day events around the state, please let me know!

We'd love to have your child part of the video.

Darcy - LogansMom28w @ shareyourstory.org (no spaces)

please write VIDEO in the subject line

Hello,

My name is Shannon Stone and I am the Division Director for the March of Dimes - Mississippi Valley Division. (Bettendorf, IA)

We are looking for local volunteers to help with our Prematurity Awareness Day/Month Activities. The main project we are considering is a Festival of Trees display in Pink & Blue. We will need many creative volunteers to take on this project.

If you are interested in this or any other volunteer opportunities with the March of Dimes, please contact me at (563) 323-6378 or sstone@marchofdimes.com.

Thank you,

Shannon Stone, Division Director
March of Dimes - Mississippi Valley Division
2117 State Street - Bettendorf, IA 52722
(563) 323-6378 - 1-800-530-5456
sstone@marchofdimes.com

RIDE to Save Babies - September 23rd
Signature Chefs Auction - October 11th
Prematurity Awareness Day - November 14th

Hi ! My name is Nikki and our little boy Corbin was born at 28 weeks. He is in the NICU at Blank Children's Hospital in Des Moines. We have been there for three weeks now even though it seems a lot longer. I enjoyed reading your stories and how your little ones have graduated from NICU.

Congratulations on your little miracle man Corbin. How is he doing? We were just across the freeway at Mercy, but there are a few on here that were at Blank! I hope that your NICU stay is as uneventful as can be and that in due time you will be bringing Corbin home where he belongs! Please let me know if there is anything we can do to help you along this journey, we've all been there!
Hugs~Hang in there
Carissa

Hi Nikki,

Welcome to Share, I'm so glad you found us. I had a little guy at 28 weeks, too. We weren't at Blank at that time, but we have spent some time there as he got older. We are local to you, there are several preemie moms on this site from the DSM area. Please let us know if you need information, or if we can help.

Hope Corbin continues to do well.
Warmly,
Darcy

Nikki...it's Amy...from Small Group! What a "Small World"! I have been checking up on your website and it looks like Corbin is doing excellent! We will be down at Blank Tomorrow night visiting other NICU babies, so if you are around, we will stop to say hi! Take care and you are in my prayers!!

Hey Central Iowa parents...

You're Invited to the Our Shining Stars event on Tuesday, November 14th from 6-8 pm at the State Capitol Building in Des Moines.

The Central Division (Des Moines metro) is having an Honor Roll reading of all area babies who were born too soon. We would love to include YOUR child. We will be lighting stars - one for each name read on our Honor Roll. We'd love to shine as many stars as we can.

You can invite grandparents, aunts/uncles, neighbors, coworkers, etc. to come be a part of this event to honor Iowa's premature babies. Media will be invited to attend, as well.

Please let me know if you'd like your child to be honored in this ceremony, or have a star lit in his/her name. You can also contact me or the Division Director, Carla Marcellus, about this PAD event or to learn how you can have a Light a Little Star event in your community.

Central Division office (515) 243-2244 or cmarcellus@marchofdimes.com

Darcy,
Hope you don't mind, I copied and pasted this post with a little more explanation to some of my friends in the area who are not involved w/ the MOD yet! I hope we have a great turnout!
Carissa

JUst a note to say I'm an Iowan too! I am looking at getting more involved in local MOD events, that is if I can find out how! So if anyone knows about an event going on in the eastern part of Iowa, near the quad cities please let me know. I'm sad that I missed the PAD events. I wanna do more for MOD because they do so much to save babies!

I think you and your family have so much to offer the QCA MOD. I'll send them a little note and let them know you'd like to get more involved!
 

Thanks Darcy, I really do want to help as much as I can and I really do want to get our story out because it's one that other preemie parents should know about! I'm thankful for share and all it has done for the parents of preemies and other parents who have journeyed through the NICU! We all have a story to tell and each one is unique and has something to offer others!