Nicu

Hi K.,
Congrats on your son's arrival though it does not seem to be under the best of circumstances. I sure wish I knew more about how to help you with the information you need. One thing I would be sure to do is ask the hospital for as much information on your son's that they have available. You might even want to speak to a case manager that would be responsible for coordinating your son's needs. If you are on Medicaid, they will provide you with a case manager. If you are on private insurance, you might contact them to see if they have the same service or if not, perhaps they have some suggestions for your son's management. I will keep your family and new addition in my prayers. May you rest in God's arms during this difficult time.

Keep us posted,
C.

Hi K.,
My son was born at 35 weeks and had pneumonia. He was put in the NICU and placed on a ventilator so he would not have to work so hard to breathe on his own, giving him time to recover. I could not even see him for 10 hours after he was born and I was terrified. I did not get to hold him until he was a week old because of the ventilator tubes and all. For the first week I was able to go to the NICU for about 10 minutes every 2 hours and if they were not too busy I could see him. If they were working on a new baby or a baby in distress then the other moms had to wait. That is understandable since I was in a small hospital and of course I wanted the same courtesy for my baby - but it was still very hard. After I was released from the hospital I could not drive since I had a c-section so my husband would drop me off in the morning and I would sit in the NICU all day holding him as much as I could and asking the nurses any questions I had. I found two nurses who really responded well to my questions, giving thorough answers so they were the ones I went to. After two weeks, my little man came home and has done very well but still had a few respiratory issues for his first couple of years. We had to do some at home breathing treatments off and on and once he had to go back in the hospital for them. They also had us visit an eye doctor a couple of times during his first year since he had been on the ventilator. Now he is 4 and you would never know that he was a preemie or had any issues early on. So hang in there, find a nurse or two who will really talk to you if the doctors won't or don't have time, and I truly believe prayer is the best thing.

My son was born prematurely and spent 2 weeks in the NICU at St. Lukes Hospital. At one point they thought there were problems with his heart and we had cardiologists coming and going and it was very frightening. I think sometimes doctors don't want to give up information because a. they want to shield you from the harsh reality and b. sometimes they don't know exactly what is going on or going to happen themselves. My suggestion is to ask direct questions. Let them know you can handle the information and don't let them off the hook when they try to give you the runaround. Speak directly with the NICU Pediatrician, because nurses are harder to get information from. Like someone else said, the more they get to know you, the more personal their conversation with you will be and the more informed you will be.

I know this is a tough time, but you must be strong and have faith that everything will be fine. Good luck!

K.,

I am so sorry to hear about your son and I will be praying for him, peace for you, and clear knowledge and answers for both you and the doctors. You are the mom he needs/needed and you are more than equipped to handel this in the best wasy possible for him. Believe in yourself and trust your instincts.

~M.

I would talk to the hospital about a case worker. I know that when my nephew was in Texas Childrens Downtown there was a lady that was his case worker through the hospital. Also, I would make myself a familiar face around the hospital. The more the nurses and doctors know you the easier it is for them to open up and give you more information, and also they will take a vested interest in you and your son. Not that they don't care about your son, but whenever you know someone on a more personal level you care more about them. You are not alone in this and although you might not see it Gods presence is with you and your son. I will pray for peace for you and your family, and for wisdom for the dr's.

Dear K., Praise the Lord for your son! Carol has given great information for you. I have friends who went through what seemed like 7 months of NICU with their twin grand kids. Both by the way doing wonderful!!! They had many, many ups and downs. We as a church , body of Christ prayed for them all the time. That is a must. (in my opinion.) I will ask them for any words they can share with you to help. I will be in touch. God Bless your son, you and your Husband.

Hi K., First, congrats on your new baby! My baby was in the NICU at Memorial Herman The woodlands for 5 weeks. I'm not sure where your baby is, but I got the best answers from the nurse practitioners. They were there for 24 hours on call, and they could be paged any time. Don't feel afraid to do that. My daughter had alot of fluid and was also on a respirator. There are setbacks, but they do get better!! One time I was frustrated and the dr. said " Look around, do you see any toddlers walking around?" I want you to know my thoughts and prayers are with you and your baby, it will be ok. I understand how you feel. Just knowing that there are other people that have gone through the same thing makes you feel better.

Hi K.,

I am a mother of twins that were born 3 months early and spent a lot of time in the NICU! We had a lot of ups and downs so I know completely what you are going through! It is a bad roller coaster ride, but things do get better and soon it will all be a memory! My twins are now 1 year olds and are healthy as can be!

My little girl who weighed 2 pounds 3oz at birth spent 2 months in the NICU and she had the worst time with her lungs and they collapsed several times, but they heal themselves and she is doing great now with no problems. They had to do a lot of the suctioning that you talked about and a lot of that is because of the ventilator too I think.

My little boy weighed 2 pounds 4oz at birth and spent 4 months in the NICU and he started out doing great and then went down hill fighting infection after infection. He had to have tummy surgery to fix his small intestine, but because he was so small they had to do a quick surgery and then two months after that they did the final repair! He had a bag that stuck to his belly that he would stool out into until they corrected it! That was not fun at all, but he has no problems from that. He was a week from coming home and got another infection which in the end lead to open heart surgery to remove a massive blood clot that almost killed him. After everything he went through he finally made it home and has made so much progress!

He sat up before her, crawled before her and now he is pulling to stand at the couch before her, so God has worked tremendous things for our babies!

Please know that there is so much support out there for you and if you ever need to talk please feel free to email me and I can help you through it!

My personal email is ____@____.com

What hospital is your baby in?

Keep your head up high and remember things will get better!

I look forward to hearing from you if you need to talk!

L.

I totally understand what you are going through. My son was born 1/2/05, a whole month before his due date and had to be in the NICU for 2 weeks because of his lungs. He has since developed asthma but they can't determine if it was from being premature or because I also have bad asthma. It was a VERY hard 2 weeks but I know he was better there with all the doctors and nurses than at home. He needed their help. It's okay to be scared. It is very common for the babies to have a relapse but they come back and stronger than ever. Just hang in there and know that God is watching over your family and little one.

I haven't been in this kind of situation, but my prayers go out to you and your family. I hope everything turns out good.