Also, he has a sacral dimple on his butt that goes extremely deep, so deep that they couldn't see the end of it during the sonogram they did on it today. So a neonatal surgeon is coming tomorrow to look at it and see if we need to have an MRI and possibly surgery on that as well, b/c it looks like it's attached to the spinal colum.
Oh, and we found out that we will be in the hospital for at least another 2-4 weeks, most likely 4 weeks.
This has been a very stressful evening. We told the doctor about DF going out of town for work on the 11th and asked about accomedations for rooming over at the children's hospital, since we have no car and I am breastfeeding Merrick. He says that they to have rooming for parents there are the hospital and we will work everything out.
I am calling the social worker tomorrow to talk to her about all of this, b/c I broke down yet again tonight as did DF. It's so hard to see your son laying there with all of these wires and knowing that he is going to have to go through all of this stuff. I am REALLy worried that I will get PPD and my milk flow will stop due to stress, especially once DF leaves. He told me tonight that he didn't want to go and that he was going to walk off this gig so he could be with us. I told him he had to go, b/c that is how we are paying bills and if he didn't go work, then we would loose our apartment and we would loose everything. I am going to call my mother tomorrow and let her know what is going on and see if maybe there is a way for her to come down and stay with me, as well as my SIL. I need my family right now and it's very difficult to have them so far away. We are very grateful to have wonderful friends here in Austin with us, but no one can commit the time to staying with me.
We are trying to take it one day at a time, and if we have to, one hour at a time...but it's difficult. DF went into the chapel tonight and started yelling and throwing chairs and stuff. He's agnostic, but is really starting to doubt even that. He used to be very spiritual, but has lost a lot of his faith over the past couple of years. I am spiritual, and am trying to be strong, but it's hard.
(They need to make a face that is bawling with face in hands....that's how I feel now!!!)
Cindy, loving wife of 15 years
homeschooling mama to 4 wonderful girls, and 1 boy! praying for #6, sch, due 4/14/2013!
While I'm so glad to know, as I know you are, that it sounds like your little guy is going to be ok in the long run, what an unfair start to things. And to have your DF have to leave in the middle of everything...ugh. After my DS's birth, my DH just had to leave the house for 11 hours every day for a bit for work and that was hard enough for us both, I can only imagine.
Take care of yourself, mama. Keeping you all in my thoughts.
If there's no rooming in, check to see if there's a Ronald McDonald house near the hospital. I think you have to be a certain distance from the hospital to qualify.
DEFINITELY see the social workers. They are great for emotional support, but depending on how long term you are going to be there, they were able to find us some financial support as well.
If you are going to be at either hospital long-term, ask about regular nurses. We chose about 5 nurses, and if one of them was on duty he/she was our nurse. It was so nice because they got to know us and our daughter. They fought for us if we needed it, warned us of problems that could occur, and they helped us get information that we needed. (We had to take a CPR course before we could take dd home, so one of our nurses lined it up for us even before the doctors mentioned it).
Finally, accept any and all support. Ask for what you need. I'm sure you have friends and family who don't know what to do, but would be happy to help once you asked.
I hope this doesn't come off as rude as I'm sure a lot of this is common sense. I just know how traumatizing the whole hospital experience can be.
I'm so very sorry for everything you, your family and little Merrick are going through... I can't imagine the physical and emotional strain you must be under. Having no experience of these things, I can only offer my deepest sympathy and prayers that things improve from here on out. I hope your family is able to rally around you, I hope there are social services available to support you through this tough time and more than anything I hope you and Merrick will be home soon.
Christina, loving being a Mama to three and serving as a Co-Leader of the Holistic Moms Network, Tri-City Area, CA Chapter.
DDCC but have been following your story... I suspected PUV as I read this just after reading about PUV because of a friend's DS's condition. As perhaps a bit of encouragement, my friend's DS is now 6 years old, and to any casual observer is a very sweet, funny, and healthy little boy. He does have ongoing issues, but my understanding is that most of that is NOT directly related to the PUV. From what I've heard of her story, the fact that they diagnosed the PUV so quickly in Merrick is a very GOOD thing. Now, they'll know what they're treating, so they can do it right.
Do make all the arrangements for help and care that you can. You will need it! Don't refuse anything that can help you. I hope and pray the road is smooth and straight for Merrick.
HeatherB ~ mama to 3 wonderful boys: 03/02; 09/04; 09/07 - and Eliana, 11/13/10!
Founder of Houston Birth Alternatives: Be Informed, Encouraged, Supported birth support group and aspiring midwife.
I wish we could all come help.