Another newbie!

[jveprek]

Hi, my name is Jamie and I live in Phoenix, AZ. My angel, Madi, was born 11/11/08 with spina bifida, which was diagnosed in utero. She has myelomeningecele specifically and hydrocephalus. She has movement in her hips, but not below.

We had a picture perfect (induced) vaginal birth at 37 weeks. I stayed in the NICU with her that night and then she was transfered to Phoenix Children's Hospital for her surgery. They put in a VP shunt at the same time they fixed her back. We were in the NICU 5 days and then we got to go home.


Now for the sad part... At 3 weeks old, she got really fussy, wouldn't eat, etc... so we brought her in and sure enough, she had a staff infection and they had to pull out her shunt, put in an external, and put her on antibiotics. We've been here 1 week and it's looking like we won't be home for Christmas. We got 3 days of negative cultures, then just got a positive from yesterday. They put in a new internal shunt today and we are praying that does the trick. We are looking at about 2 more weeks in here right now. I have a 24 month old little boy at home, so this hasn't been easy. I stay with her during the day and night, but am pumping so that family can sit with her for a little while and I can go home and spend a little time with Conner. On the days I can't get home, David, my husband, brings Conner here to visit. We are praying the infection clears up soon so we can go home again. Has anyone else gone through this?

I can't wait to chat with you all and get to know you! You can check out the blog I am trying to start www.missmadisjourney.blogspot.com.

[Summer25]

Hi, my name is Jamie and I live in Phoenix, AZ. My angel, Madi, was born 11/11/08 with spina bifida, which was diagnosed in utero. She has myelomeningecele specifically and hydrocephalus. She has movement in her hips, but not below.

We had a picture perfect (induced) vaginal birth at 37 weeks. I stayed in the NICU with her that night and then she was transfered to Phoenix Children's Hospital for her surgery. They put in a VP shunt at the same time they fixed her back. We were in the NICU 5 days and then we got to go home.


Now for the sad part... At 3 weeks old, she got really fussy, wouldn't eat, etc... so we brought her in and sure enough, she had a staff infection and they had to pull out her shunt, put in an external, and put her on antibiotics. We've been here 1 week and it's looking like we won't be home for Christmas. We got 3 days of negative cultures, then just got a positive from yesterday. They put in a new internal shunt today and we are praying that does the trick. We are looking at about 2 more weeks in here right now. I have a 24 month old little boy at home, so this hasn't been easy. I stay with her during the day and night, but am pumping so that family can sit with her for a little while and I can go home and spend a little time with Conner. On the days I can't get home, David, my husband, brings Conner here to visit. We are praying the infection clears up soon so we can go home again. Has anyone else gone through this?

I can't wait to chat with you all and get to know you! You can check out the blog I am trying to start www.missmadisjourney.blogspot.com.

Welcome. I am so sorry that your little one is already going through such hard times. I just wanted to introduce myself a little. My name is Summer. I am 25. I have myelomengicele spina bifida at the T10 level. I however, am now paralyzed from the chest down. I am in a wheelchair. I have had close to 50 surgeries. Mostly orthopedic, shunts, and bladder surgeries. I am in college. I also work for a wheelchair company. You will really like it here.

[LisaJoy]

Welcome to the forum! I'm so sorry ya'll are going through a rough patch right now. You will certainly be in my prayers.

I'm Lisa -- 44, with a closed form of sb w/o hydro, walk with one crutch and a brace on my right leg, & neurogenic bladder. I teach history at a university.

You will find plenty of support on this site, so check in often and ask anything you want.

[joybell322]

So sorry to hear about the setback! We haven't dealt with staff infection, but we've been through our share of hospital visits. I'll be praying for you and your family.

Welcome to forum. I love it here! I've had many questions answered & it's just so nice to have support of others who've already been down this road!

[Barb]

Carter was born in Phoenix but we did everything at Barrows with Dr. Rekate. My oldest name is Connor too and they are the same age apart! The AZ Spina Bifida Assoc is pretty good. In fact, my inlaws just played Santa for the party this weekend. Feel free to pm and I will send you my phone number. I have some parents that you can connect with there.

[jveprek]

Carter was born in Phoenix but we did everything at Barrows with Dr. Rekate. My oldest name is Connor too and they are the same age apart! The AZ Spina Bifida Assoc is pretty good. In fact, my inlaws just played Santa for the party this weekend. Feel free to pm and I will send you my phone number. I have some parents that you can connect with there.

How fun! We were wanting to go, but it didn't work out. I actually have talked to quite a few local parents I was put in contact with through the association. They have been great to talk to!

[naomi6896]

Hi, my name is Jamie and I live in Phoenix, AZ. My angel, Madi, was born 11/11/08 with spina bifida, which was diagnosed in utero. She has myelomeningecele specifically and hydrocephalus. She has movement in her hips, but not below.

We had a picture perfect (induced) vaginal birth at 37 weeks. I stayed in the NICU with her that night and then she was transfered to Phoenix Children's Hospital for her surgery. They put in a VP shunt at the same time they fixed her back. We were in the NICU 5 days and then we got to go home.


Now for the sad part... At 3 weeks old, she got really fussy, wouldn't eat, etc... so we brought her in and sure enough, she had a staff infection and they had to pull out her shunt, put in an external, and put her on antibiotics. We've been here 1 week and it's looking like we won't be home for Christmas. We got 3 days of negative cultures, then just got a positive from yesterday. They put in a new internal shunt today and we are praying that does the trick. We are looking at about 2 more weeks in here right now. I have a 24 month old little boy at home, so this hasn't been easy. I stay with her during the day and night, but am pumping so that family can sit with her for a little while and I can go home and spend a little time with Conner. On the days I can't get home, David, my husband, brings Conner here to visit. We are praying the infection clears up soon so we can go home again. Has anyone else gone through this?

I can't wait to chat with you all and get to know you! You can check out the blog I am trying to start www.missmadisjourney.blogspot.com.

Hello, sounds like a real rough time but prayer, friends and family will help a lot My name is Naomi my son is now 12 and my daughter who is 15 had to stay with family while I stayed at the Ronald McDonald house near the hospital while he was in NICU he was there for one and half month and I was there 7am to 11pm left there drove to my mom's house just to watch my daughter sleep...............it was hard because at the end of the night I had neither of them with me. My husband was a lot of support sometimes a point for me to vent....I felt like know one understood what I was going through and I often got tired of all the sympathy almost as if my son had died......there were some great nurses and doctors and their were some who were less than..........saying things like "these kids your better off just cutting them off at the knees" and nurses " you are in for a long road these kids are a lot of work it will be a strain on your family" it was hard but for all the negative there was great support.................kind words and positive outlooks.............my son walks he is an L5 he has a beautiful spirit and a great positive attitude. You and yours will be in my prayers and like saying goes love will conquer all IT does!!!!!! No matter what happens.