Baby in NICU

[EmilysMom]

Jen,
I, like everyone else on the boards, don't have the slighest idea what to say to you at this time. Know that we are here for you for support but that we can't really help help anymore than that. How I wish we could!
Like Julie said, Our family has also made our wishes clear to the rest of our family...that if we become incapable of being a valuable functioning human being, give us the dignity and choice of letting us go on our terms. It's got to be harder with Andrew because he is such a little one!
I don't know what else to say. We'll be thinking of you and Andrew!
<img src="i/expressions/angel.gif" border="0"><img src="i/expressions/heart.gif" border="0">

 

[ErinsMommy]

Jen, I am so sorry to hear about everything that is going on. No parent or baby deserves to go through any pain whatso ever. I'm happy that you have the support of your family and your husband. If you EVER need to talk about anything, anything at all, even if you just want to vent... my email is Erinsmommy05@yahoo.com. I will pray for you, your baby, and the rest of your family. You are all in my thoughts.

 

[anonymous]

Jen
Your reaction at the OB office was very normal. You're already grieving, for what you thought life would be like with your sweet baby. KNow that all of us are praying and thinking of you. I'm praying for discernment that only the Lord can give.
I'm sorry
Terri

 

[cfmomma]

I am so sorry Jen. I have been following your situation since you first posted several months ago. I have seen you go from being terrified about Andrew's diagnosis, eager to learn more about CF, offering support to other mothers in this situation, angry about not being able to deliver where you want, excited about his birth, hopeful for your life together.....and now utterly devastated. There can't be anything worse in this life than losing a child. I know that you will make the best decision for Andrew whatever that may be. He has already impacted so many lives; you, your husband, your friends and family, and all of us. I look at his beautiful picture and I am moved to tears that he will never get to do the things he deserves. I can't believe life is so unfair.

Going to the OB/GYN and look around and see happy pregnant ladies and healthy babies must have been a double slap in the face.
How has your step-son dealt with this, is he scared?
We all love you and your precious baby Andrew.

 

[anonymous]

Jenn

I was thinking about this some more. I earlier posted that were I in your shoes, I would let him go.

I still feel that way, but I would speak with an attorney who specializes in birth injury cases first. Then, if
I still decided to let little Andrew go, I would be on a mission. A mission to see to it that everyone (doctors, nurses,
insurance companies, military, etc) who played a part in this tragedy would no longer be a position to allow
something like this to happen again.

I know that a lost child can never be brought back & future children do not replace one that is lost. I actually
lost a baby very late in a pregnancy (still born at 37 weeks), so I know the pain of losing a wee baby. I think that
you can take the pain and do something good with it though. You can make a difference for others and in that, you
may find some peace.

 

[JazzysMom]

Ironically the same Supervisor of mine that I told you about came in for her checkup at the OB/GYN while I was there for mine with my daughter. She & her husband walked in & I was the one totally uncomfortable. I felt that since I was the one sick & she took exceptional care of herself even before pregnancy that somehow it should be facing the issues that she is. I didnt know what to say to her or if I should "hide" my daughter. I never gave her the benefit that she was happy for me even though she was dealing with a rotten deal. She assured me not to worry, she gave me a hug & held my daughter. I think I needed it just as much as she did. Her husband handled the whole situation with humour so I think he was having a harder time then she was. My point is that I was could be one of those women that you saw in the office. Regardless.....your feelings are valid & understandable. It doesnt make you a bad person.

 

[anonymous]

Sheli-
Thank you so much for your post.
My step-son just flew in yesterday from out of state. His mother talked with him about our situation before he came out and I think he understands whats going on but we plan to sit down with him and our other children prior to turning off the baby's respirator. I'm worried about the kids, I'm worried about my husband whom said he can't be there when they turn it off, I'm worried about my mom dad and sister, they haven't seen Andrew yet and seeing him makes this so much harder to accept. He looks and moves around and cries (can't hear it cause of the respirator) just like any baby, he even sucks on a pacifier.
Now, I have so many people asking difficult questions, like what funeral home, what casket, where do you want to bury him, what do you want him to wear, what do you want to say in the obituary or on the head stone. I can't stand it, he is not even dead yet and were planning his funeral.
My mother in law wants to have a photographer come in and take some pictures of us right after they take all the wires off. I wonder, would this be a good idea? We will probably look a mess, I haven't been able to keep make-up on past noon yet. I'm just not sure.

I know some of you must think twice about reading this thread anymore, I seem to be getting to be a real drag. On the bright side, I am holding up okay. I just need to stop worrying about everybody else. For some reason I can't do anything. I normally keep a clean house and keep up on my laundry and right now my whole house is a disaster and I don't care. I normally pay all of my bills right on time over the computer when we get paid and I haven't done it yet, there probably going to shut off my computer and phone service soon. I've got to get a grip on that stuff, but I feel like I don't want to act normal.
Jen

 

[anonymous]

Jen,

You can't act normal! So don't feel bad about it. I know when my little girl was in the hospital hooked up to all of the wires and tubes, I literally asked for padded walls for christmas (didn't get them), and boy would they have helped. House work got behind, Bills got behind, but they weren't my priority. If you are not comfortable with planning for his funeral right now, explain to your husband what you want and let him handle it and tell him you don't want to discuss it any further until he's gone. You have that right.

My heart is aching for you and your family right now. You are a strong person, whether you realize it or not, because if it were me I think I would have either had myself committed by now or would have been such a mess I would go comatose. Hang in there, I know it's hard and you don't want to hang in there, but for the sake of your family... continue to be strong and for the sake of little Andrew, give him all the love you can right now!

Blessings,

Amy

 

[1princess]

Jen,

Like Amy said - you can't act normal - this situation isn't normal! The life you had planned for your baby isn't going to be there - just take it one day at a time and know that life is precious and we need to enjoy every moment - especially in your situation with Andrew. It could change for all of us at any minute - you just never know.

When you take him off the respirator I would just sit and hold him and love him - he will most certainly know he is loved more than anything in the world and will go peacefully into a better place where there is no pain and suffering. Our thoughts and prayers are with you - just wish we could help you more.

 

[rose4cale]

Jen, it may seem strange or wrong to have pictures done, but you don't have to look at the pictures until you are ready. You can keep them safely tucked away. You won't have another chance to take those and someday you will cherish them and hopefully remember Andrew as the beautiful baby boy who as at peace rather than remembering him hooked to all of the wires. Siblings would appreciate those photos as they get older too.

No parent should ever have to plan for a child's funeral. Let your house go. Family will be happy to help if you just ask. It is understandable that you aren't yourself. But don't be afraid to ask for help. Friends and family will be afraid of stepping on toes. They'll be grateful to help in anyway possible.

You're all in our thoughts.

 

[EmilysMom]

How are you supposed to act "normal" when life right now for you is so far from there? I keep coming back to this thread to see how you are doing, but by the time I am done reading the posts, my make-up is shot too!
I have two photos of Emily in the hospital with all her tubes and IV lines, bandages from surgery, in her incubator that I wouldn't trade for the world. They remind me of who she is and the young woman she has turned into. I would definitely take photos of Andrew. Those are always going to be bitter-sweet memories of the time you are sharing with him now. I would also put a stuffed animal with him and keep that later as a special item. Sounds silly but will be comforting later.

 

[anonymous]

Jenn,

Let me first say how sorry I am that you have to go through all of this! I know all to well what you are feeling. I had a son, Zachary, born 9-25-99 and he was born full term and we had no idea he had any problems. He was born with Potter's Syndrome, a rare fluke in which the baby develops but has no kidneys. He was alive though, moving, crying, ect. in the NICU hooked up to all those wires and we had to turn off the machines and let him go, because he could not survive without kidneys. I still remember that entire day as if it were yesterday and it was the hardest day of my life!!! I truly treasure all the pictures we did take and all of his things that I have. I would really encourage you to take lots of pictures and if possible video camera tapes. Believe me years down the road, you will long for one last look at him the way you remember him. Take only as active of a role as you want in the funeral planning and leave the rest to other close relatives. It is so hard, but you will get through it!!! It does get easier and the pain lessens with time. Not a day goes by when I do not think of my precious Zachary. His birthday is coming up and he would be 6 years old this year! Please feel free to email me at Quaintancer15@msn.com if you need to talk! (I will be out of town on business next week, but I will get back to you) You, Andrew and your entire family are in my thoughts and prayers!

Becky, Mom to Nathan, 4, w/o CF and Hayley, 18 months, w/CF

 

[CFHockeyMom]

Jen,

I feel just awful for you and your family. This is truly a tragedy.

Know that whatever you decide for Andrew you will have the full support of everyone here.

I, in no way, could ever pretend to know what you are going through but if it were me, I think I'd lean toward removing the respirator. We had to do this for my grandmother and it was the most difficult decision I ever made. I loved her more than life and wanted to give her just a little bit longer to try and pull through. The docs kept telling us that if it were their grandmother they would remove her from the respirator. Although that did eventually help me through the decision, it didn't make me feel any better about it. In the end, I decided that my wanting to keep her alive was mostly for selfish reasons and that her quality of life even if she came off the respirator wouldn't be what she wanted. Of course, you don't know what Andrew wants but I think it's safe to say that he would want you to be happy. If that's nursing him through life, then by all means you should do that, but if it's not then you should let him go.

The same grandmother I referenced above had a baby during the war while my grandfather was at sea. The baby died shortly there after and my grandfather never got to meet his son. My grandmother had pictures taken before the baby died and even at the funeral. She didn't want my grandfather to miss any portion of their son's short life. When I was a kid, I thought this was just awful. Who would want to do that? Well, now that I'm older, I'm greatful for the pictures and after time, I think members of your family now and in the future would appreciate the pictures as well.

As for funeral arangements, if that's the route you choose to go, most funeral homes/directors are very good about helping grieving families. After all, it is their job. If your family is putting too much pressure on you to answer these kinds of questions, I'd let them know that they are crossing the line.

Don't worry about your house or your bills, let some of your family and friends help you. I'm sure they'd be happy to help out.

By all means don't act normal because this situation is far from normal.

Peace be with you and your family. You are in my prayers.

 

[anonymous]

Jen - I have been wanting to reply for a long time, but haven't been able to figure out what to say to you because I know that nothing will make your situation better right now. You are a very strong woman and I can't imagine what you are going through. Please know that you are in our prayers and many other prayers as you go through what will be the hardest time in your life. I will keep you in my thoughts and prayers forever!

KK<img src="i/expressions/angel_ani.gif" border="0">

 

[anonymous]

Jen,
I have been thinking of you and am so sorry to hear all of this news. My computer has been down so i haven't been able to respong untilll today. I am keeping you and your family in my prayers since I read your post. If you need anything please let me know. I will continue to keep you in my thoughts and prayers.
Leeann

 

[anonymous]

Jen,
My heart goes out to you and all of your family.....I have been thinking about Andrew a lot over the past few days. I just wanted to tell you that my sister had a baby with severe CP and had to decide what to do....She let her little Girl go..(for a number of reasons which have already been mentioned.).and she is now in heaven with her Grandma.......at peace....... I cant really express what to say as it brings back such sad memories but i am thinking of you x x x


Paula ...Mum to Joseph aged 2 yrs 7 mths (w/o CF) and Ruby aged 5 mths w/CF

 

[anonymous]

Jenn:
I think of you, Andrew, and your family throughout the day. Please know that my sons and I pray for your family. A very good friend of mine delivered her baby (stillborn) at 30 weeks, and I sat with her as she contemplated the same questions you are dealing with regarding the pictures, etc. Only you know in your heart what feels right. Whatever you decide to do, we wish you strength and courage (and a great big hug).

 

[anonymous]

Thoughts and prayers going out to you and your family, Jen. We are very sorry you are going through this.

Nancy

 

[jenniferp]

First, let me say this; WHAT A ROLLER COASTER RIDE!
On Wednesday my whole family came to the hospital with my husband and I and we prepared ourselves to turn off the respirator. We talked with the neurologist who explained to us the severity of Andrew's brain injury and we cried. At 1:30 pm the nurse took his respirator out and I carried him out of the NICU, for the first time I got to hold him without any wires connected to him. I took him into the room with our family and we all held him and cried. At first he was doing okay, he just looked around and gagged a little bit. The Doctor told us it would probably take 15 minutes to 2 hours and the nurse came in every few minutes to check on him. After about one hour she said his nostrils were flaring and his fingernails were turning blue which probably meant we didn't have much longer. Then, his eyes closed and he went to sleep and he remained that way for a long while. After about 4 hours he was still breathing but it was shallow. I asked the nurse at what point can we think he was going to continue to breath and she then told us it could take up to a day. I asked the nurse to hook him up to the monitor so we could see what his stats were, she did and his oxygen level was good/normal.
I finally decided to send the rest of my family home as everyone was exhausted and I wanted some time alone with him. I stayed that night at the hospital with just him and I. The nurse brought in a bed for him and I slept on the couch in the grieving room. All night I got up and checked him thinking at any moment he would stop breathing. Around 1 am he started crying, it was a very weak cry but as the night progressed it got stronger and by morning his color was back and he seemed to be doing fairly well.
My husband came and picked me up, we went home so I could shower and change and we got back to the hospital around 4pm Thursday and he was doing better. Then they told me I could take him home the following day, I was shocked! Not what I was expecting at all.
So, Friday morning I got up went to the hospital and brought my baby home.
I don't know much about what tomorrow may hold but for now we will treasure every moment we have with him. He seems to be doing better everyday. He still has his colostomy bag and he has a feeding tube in his nose because he doesn't eat as much as he should but overall he is doing okay. We know his brain injury will show its true colors soon I guess all we can do is hope it won't be as bad as they said. The only thing I notice about him that does not seem normal is that he does not move his legs very much. He will when stimulated but otherwise he won't. They told us he couldn't see but he looks around a lot and looks at lights. Oh, I hope he can overcome this diagnosis. My husband and I are so afraid to think everything will be okay. But, I'm so happy to have this time with him.
The doctor put him on Pregrestimil but he didn't put him on enzymes, is this normal?
Thank you all for your support, it means so much to me to have you all. I will post a new photo soon.
Jen

 

[spicyone18]

WOW, congrats on being able to bring Andrew home! Thats such good news! I dont even know what to say, except that I am so excited for you being able to bring him home especilaly since this is not what you were expecting. Your right you never know what tomorrow will bring, so just continue enjoying every moment with him and I will continue praying for you and your strong boy!!