dealing with the past

April - posted on 01/26/2009

Quoting Emma:

dealing with the past

my daughter was born at 26 weeks - 14 weeks early. she had a 50% chance of survival and stayed in hospital for 10 weeks. most days were bad discovering new health difficulties and some days i got 'the call' to go in asap. i stayed in the hospital 8-10 hours a day everyday and just got on with it. she came home with oxygen and still stopped breathing a few times and has been back to hospital 3 times. once in an ambulance. shes off the oxygen now but now its over i cant stop thinking about what might of happened and about all the other babies i met who didmt survive. any tips on how i can stop thinking like this? its strange how im worse now its almost over

My daughter was not a preemie..but she had a difficult birth and was born with CP. When I read your story...it was like what I went through. We have been through a very tramatic experience. After I had my baby....I was told she wasn't going to make it so I lied awake all night thinking she would have died by morning. I cried all night long. To this day...I have a difficult time going to the hospital or watching births on t.v. etc. I don't think we will ever forget the experience of having something that you love instantly and have them almost die. I am sorry that I don't have a solution but I just wanted you to know that your not alone. My daughter is now almost 21 and it still bothers me.

Marin - posted on 01/26/2009

Quoting Jeffienna:

My son was born 11wks early. We stayed in hospital for two and a half months, I did not leave his side, I refused to leave. I was forced to go eat. I was alone, as his father was away at sea. It was the most frightening thing that has ever happened to me. I have never felt fear like this. I remember coming home, and not sleeping. He came home on monitors,and had a district nurse in every day.He weighed 4 pounds and 13 ounces at 3mths old! I was frightened, so very frightened. He is now 4 and a half. Yet still I remember how he fought to stay alive. How other Mums lost their children. The noise! Beeps, tones, wires, the smell. I have not had another child, I was to afraid too. Now I cant have anymore children as I have to have a hysterectomy. Life is cruel sometimes. But I have Oliver. When we are going threw this time,( helpless mother watching our baby fight for life), we act on auto. When the danger has passed. And the fear has almost abaited, reality hits in. Then you deal with your own emotions. Its like delayed trauma. Post traumatic stress. Allow yourself to grieve. I know that sounds crazy, but it is a greiving process for the loss of a beautiful thing. A child, born a normal way, and the joy one should have when we have our children. This is taken from us, and replaced with fear, so we greive the loss of that which we pressumed we would have. Be crazy, cry.. But always, always treasure your child. they could have been taken from us. Yet they have soldier like fight in them to stay alive. And that is what you have too. To be there for them... Youll work it out. It will all be good,and years on, you look at the million photographs that you will have taken, and disbelief hit in. Was my baby really that small??? Its weird. Good luck, and lots of love.

I remember that the most, and to this day, if I have to wash my hands while I am out and if it even comes close to smelling like the some at the hospital, I immediately put my own anti bacterial hand wash or lotion on.  I can not stand the smell of the hospital soap, it almost puts me over the edge!    The beeping and stuff hasn't phased me as much as I watch ALOT of hospital reality shows, mostly just Birth Day and Special Delivery etc.  My husband says that it is just my way to further torture myself.  In a way I guess it is, but I also long for just one more.

Emma - posted on 01/26/2009

i just want to say thankyou for these comments... i thought i was ready for the white room with the padded walls but its nice to know im not the only one thinking like this

Christy - posted on 01/26/2009

its rough isn't it! agreed i had the same prob...i have two preemies--a son (15yrs) and a daughter (4 yrs)...he was born at 29wks and she was 27--he was in for 6wks and she was 8...i remember having a breakdown for each...but agreed it wasn't until we were in the clear...for my son it was right before he finally came home from the hospital, and i saw another mother watching her preemie baby being transferred to another hospital, which i had seen happen to my son weeks before...i had to leave the hospital and sobbed for a good couple of hours...went wandering through the toy store for the rest of the day...i know it sounds silly but you simply have to let it out...seems like for me it was a mixture of thankfullness, grief, fear, and adoration all rolled into one!

Abi - posted on 01/26/2009

Christine -  I too was scared to death to bring home my daughter after 65 days in the NICU.  I appreciated that she was on an apnea monitor....I felt safer with her sleeping than I had with my two older children.  If you were that dedicated to spend 12 hours per day with her in the hospital....then you have nothing to worry about.  You are an amazing Mom!  Just be sure to get help when you need some rest!

Kitti - posted on 01/26/2009

Quoting Christine:

My son was born 6 weeks ago at 29 weeks. He is supposed to be coming home on Monday or Tuesday without oxygen or any monitors. He is doing really well. I can't help but feel really anxious about not being in the hospital anymore. I am really excited that he is coming home but, so scared at the same time. I have been staying at the hospital for about 12 hours a day with him every day for the last six weeks and now feel like I'm going to have an anxiety attack when I'm anywhere besides there and my home. Has anyone else felt like this when their children came home?

Hi Christine

Firstly, congratualtions on your little man and for getting to this point! It's scary and exciting when you can finally take them home. I'm a mum of a 29-weeker as well and know very well what you're going though. Our daughter came home after 7 and a half weeks without monitors and oxygen as well.She is now almost 9 months old (6 and a half corrected) and is doing so well.

My best advice would be to enjoy him every minute you can because time flies and you don't want to look back and not remember anything because you were so worried/stressed. They wouldn't let you take him home if they didn't think he was strong enough :)  Don't forget these little bubs are real fighters! They started their tiny lives facing an uphill battle and for him to get to this stage he has to be a strong little man.

Jeffienna - posted on 01/26/2009

My son was born 11wks early. We stayed in hospital for two and a half months, I did not leave his side, I refused to leave. I was forced to go eat. I was alone, as his father was away at sea. It was the most frightening thing that has ever happened to me. I have never felt fear like this. I remember coming home, and not sleeping. He came home on monitors,and had a district nurse in every day.He weighed 4 pounds and 13 ounces at 3mths old! I was frightened, so very frightened. He is now 4 and a half. Yet still I remember how he fought to stay alive. How other Mums lost their children. The noise! Beeps, tones, wires, the smell. I have not had another child, I was to afraid too. Now I cant have anymore children as I have to have a hysterectomy. Life is cruel sometimes. But I have Oliver. When we are going threw this time,( helpless mother watching our baby fight for life), we act on auto. When the danger has passed. And the fear has almost abaited, reality hits in. Then you deal with your own emotions. Its like delayed trauma. Post traumatic stress. Allow yourself to grieve. I know that sounds crazy, but it is a greiving process for the loss of a beautiful thing. A child, born a normal way, and the joy one should have when we have our children. This is taken from us, and replaced with fear, so we greive the loss of that which we pressumed we would have. Be crazy, cry.. But always, always treasure your child. they could have been taken from us. Yet they have soldier like fight in them to stay alive. And that is what you have too. To be there for them... Youll work it out. It will all be good,and years on, you look at the million photographs that you will have taken, and disbelief hit in. Was my baby really that small??? Its weird. Good luck, and lots of love.

Marin - posted on 01/25/2009

My daughter was a 27 weeker, and while she is 3 years old now I still have anxiety about leaving her.  Not so much in the care of family members, but I refuse to take her to any daycare without my working there too.  I have to be able to check up on her, and I have been out of work now for almost a a year because I can't find the right daycare to work at.  Especially when Leonie was younger I couldn't stand to leave her at home to go to work, or to not check on her at least once an hour while at work.  To deal with the past about the NICU and me regrets and what not I have kept a journal to put all my thoughts in.  The NICU my daughter was in was an hour and a half away and we could only ever see her on the weekends and once during the week to deliver breastmilk.  We had a nearly 5 year old daughter at home and we continued to send her to daycare or sent her to my sister's house on the weekends while we visited the NICU since my sister lived in the same town.  Those were the longest 86 days of our lives and I thinkg my relationship with my oldest daughter has slightly suffered because of it.  I don't know if it is just older sibling rivalry or if it is realated to the past, but she is constantly accusing us of loving Leonie more than her or that her little sister keeps getting special treatment.  That I don't know what to do about, but we try to spend as much time with her as we can.  Just know that your anxieties are normal, just don't confine yourself to absolute lonelyness because you will surely go mad!

Emma - posted on 01/25/2009

Quoting Christine:

My son was born 6 weeks ago at 29 weeks. He is supposed to be coming home on Monday or Tuesday without oxygen or any monitors. He is doing really well. I can't help but feel really anxious about not being in the hospital anymore. I am really excited that he is coming home but, so scared at the same time. I have been staying at the hospital for about 12 hours a day with him every day for the last six weeks and now feel like I'm going to have an anxiety attack when I'm anywhere besides there and my home. Has anyone else felt like this when their children came home?

when my daughter taaylor came home i literally didnt leave the house for 3 months i was so scared of germs and her oxygen failing. they were the lonliest times ive ever had. my advice woullsd be to join a babygroup straight away andtake him out at least once a week just to stop you going crazy!

Katie - posted on 01/25/2009

I totally can relate to you. I had my son in August of last year at 31 weeks. We were only in the hospital for 24 days and everything has been fine since, but I have nightmares about the whole thing at least a few times a week. I dream of my guts being ripped out, of my son dying, of a twin that he never had. Just brutal things. I think that when it was happening I kind of went into shock and stayed pulled together through the whole thing and now, 5 1/2 months later my mind is trying to make since of the whole experience, finally releasing all the pent up anxiety I didn't know I still had.

Nicole - posted on 01/25/2009

Quoting Christine:

My son was born 6 weeks ago at 29 weeks. He is supposed to be coming home on Monday or Tuesday without oxygen or any monitors. He is doing really well. I can't help but feel really anxious about not being in the hospital anymore. I am really excited that he is coming home but, so scared at the same time. I have been staying at the hospital for about 12 hours a day with him every day for the last six weeks and now feel like I'm going to have an anxiety attack when I'm anywhere besides there and my home. Has anyone else felt like this when their children came home?

Hi Christine,

My name is Nickie. I can totally understand your anxiety. My first preemie was born @ 28 weeks. They told us that she would likely have to stay until her due date. The day I was discharged was horrible for me. No one but us will know what it feels like to go home with-out your child. I put my husband thru hell that day. I could not stop crying. He finally made me realize that the hospital was the safest place for her to be. 6 weeks later she would have been 34 weeks gestation they told us she could come home. I told the doctor "Are you crazy"? She's only 4lbs 2oz.! He promised us that it would be totally fine and that she would thrive much better at home. The night before she was dis-charged the hospital put us in a hospital room and made us spend the night taking care of her ourselves (Our hospital policy before you take home a preemie). The NICU nurse checked in on us every 4 hours. We took her home that morning. My husband and I were so afraid because she was so tiny. We even put her to sleep in her car seat for weeks. No joke! We were that paranoid. We took her to the doctor for every little thing. She had 3 spinal taps by the time she was 6 months old. We put our poor daughter thru hell. Lol she knew the smell of a hospital and doctor's office. She would scream bloody murder before we even got to te door. I can look back and laugh about it 5 years later but it took me awhile to get to this point. My 2 younger girls had it much easier from us.

Keri - posted on 01/24/2009

Hi- my daughter was a 27 weeker. She was in the NICU for 90 days & I was there everyday. While she didn't encounter too many health issues in the hospital, I still had a hard time when she came home. When my husband and I were alone with her, I was fine, but when the grandparent's came over, I wasn't the nicest person. They walked on eggshells around me. I was the hand wash police. Even now during RSV and flu season, I've insisted that everyone that comes around has to have had the flu shot. We don't take her anywhere right now, and by the grace of God, she hasn't been sick. The biggest thing that has helped me deal is my savior Jesus Christ. She is so much more His than mine. Her twin sister didn't survive and knowing she is with Jesus fills that hole in my heart. Jesus will walk you through these hard times- He's there even in the great times!!!!

Missy - posted on 01/24/2009

It's usually after when things get bad because you have time to stop and think.  When you are in the midst of it you just have to do what needs to be done.  Now that things are getting better and looking more positive you have time to think about everything you've been through.  It is really hard and probably will be for quite a while.  I don't really have any advice (as I feel a lot like you do) but just wanted you to know you aren't alone and what you are feeling is normal.

Tali - posted on 01/24/2009

I am so sorry you are having a hard time. It has been 18 months since our twins were born 8 weeks early, and I still have a hard time dealing with some of the things that happened, both leading up to and after their birth. I was really sick after they were born and didn't get to see them for several days. The hardest part to come to terms with for me is the effect it had on our 3 year old daughter - I put her in daycare so I could be with our twins in the hospital daily. I still worry that it was the wrong thing to do.

It is hard to think about the families that lost a child while we were there ... but I also think about the other families that went through what we did and came out with wonderful results like we did. 

It is scary to come home, our boys stopped breathing while eating for almost a month after they got out of the NICU. They were very scary times. They are now 18 months and are so healthy, so active, and SO much fun.

Congratulations. :)

Larissa - posted on 01/24/2009

I was scared when my daughter came home. It was the first time she would be off all of the monitors and they wouldn't be watching her weight every day. There was a lot of anxiety but after I got home it was a huge relief. It was surreal at first, but I was thrilled to finally have her home and not to have to go to and from the hospital everyday! Just take it one step at a time. Where I was they gave me numbers to call in case I was worried about anything or had a question. Do they make you stay at the hospital the night before your son will come home?

Christine - posted on 01/24/2009

My son was born 6 weeks ago at 29 weeks. He is supposed to be coming home on Monday or Tuesday without oxygen or any monitors. He is doing really well. I can't help but feel really anxious about not being in the hospital anymore. I am really excited that he is coming home but, so scared at the same time. I have been staying at the hospital for about 12 hours a day with him every day for the last six weeks and now feel like I'm going to have an anxiety attack when I'm anywhere besides there and my home. Has anyone else felt like this when their children came home?

Larissa - posted on 01/24/2009

I still think about my daughters 2 week stay that the hospital and it bothers me the way I was treated and how I was lied to. She is now 5 and frustrates me big time. I think for me it has only gotten worse. I speak up now and say what is on my mind even if I make people mad when we go to the dr office. I think it has made me stronger and I learned to say what is on my mind to protect and care for my daughter.

Amanda - posted on 01/24/2009

Hi as a new mum we instantly go in to the protective fighting mode for our tiny vulnerable baby and our survival instincts kick in, but once the really stressfull period subsides this is when you have time to really feel the enormity of the situation and think what if, with that comes all the floods of emotions we were keeping at bay.

allow the sadness you feel for the little angels that didn't make it strenghthen the bond with your own baby who is a wee fighter and won the battle and making progress, don't let the saddness of what if ! get in the way . concentrate on WHAT NEXT not what might have been. hope this helps. My Baby was born at 24wks, inhospital 22wks and still on oxygen at 13mths but she is here, hard work but a wee miracle.

Amanda

Kate - posted on 01/24/2009

My twins were born 23 - 6 wk's I lived at the hospital for 5 1/2 months my daughter passed away after 6 weeks it was the worst feeling in the world but I had to stay there and be strong for my son. I had to see parents around me lose there babies and with it still so fresh for me it was sooo hard. My son came home on oxygen and he is still on the oxygen most of the time. He is now 10 months old and there isn't a day that goes by that i don't think about my daughter or tell him about his sister. She was and always will be a very big part of my life. There is nothing that can be done to change the past but you have a little miracle there to look after so look to the future not the past and I'm sure you will all have a good strong and happy life together, but the important thing is make every moment count...

Christen - posted on 01/24/2009

Hi Emma,

My name is Christen. My daughter Madelyn was born 4 1/2 weeks early and spent 2 weeks in the NICU. Although Madelyn was not in as serious of a state as your daughter, I can sympathize with that feeling after you leave the hospital. For me, I had to remember how incredibly blessed we are and how thankful we should be. It's hard, but you can do it because you're the mommy, and you're strong. When you start to feel scared or get a bad case of the What-If's, just look at that beautiful baby and know that she is safe and strong because of you.