Depressed and scared

I am the mother of a 23 weeker(1lb 2oz) who is now 4 mos actual. She has already had three surgeries within the first month of life. The first was a PDA ligation, next was a reservoir for her hydrocephalus due to a bilateral grade 4 bleed, and then an ileostomy. Its hard to watch such a small and innocent baby go through all these things that we as parents never had to endure. Anyhow, she goes back into surgery on Wednesday to have her take down (reattach her intestines) and maybe two weeks after that she will have a vp shunt placed. Ive been doing good and holding up so far but the more i read on her most serious condition (grade 4 IVH) i get saddened because i dont know what her outcome will be and sometimes i wonder if ill be able to handle looking at her in such a helpless situation and wonder if it was something i did to make her come so early. I know its not my fault but i cant help but think it is. Somebody please help me because i feel like i could lose my mind at any given time. Also if you have a child in the same situation as mines could you please let me know how your child is progessing, i would really appreciate it, thanks.

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makiahisblessed,

Have you talked with your doctor or a therapist about your feelings? I ask b/c postpartum depression (PPD) is so very common in women who've had babies (20-25% get PPD) and is even more common among NICU moms. In the year post-birth, the women's body is in a hormonal flux. Add the NICU stress on top of that, and it is a recipe for depression.

The good news is that PPD is treatable but usually some kind of action is needed. For some people, that involves individual or group therapy. Some people are given medications to stabilize their hormones. Eating right (balanced diet) and exercise can also help mitigate some PPD symptoms (or at least make sure that things don't get worse). An individual's treatment is best worked out with a doctor b/c not everyone's case requires the same thing.

Women who feel very depressed are sometimes not inclined to seek help. Sometimes they feel so guilty over the early birth that the depression becomes a form of punishment, even though many women who have preemies did everything "right." In half of prematurity cases, the cause is simply unknown. Sometimes women feel like they should pull themselves up by their bootstraps and "get over it." But the reality is that PPD is physiological, not a choice. And it is better that preemie moms feel well b/c it helps them be the best moms they can be.

We went through quite a bit with our son's NICU stay but not nearly what you are facing. You deserve to be treat yourself gently b/c you've had so much on your plate. You sound very proactive, though, which is what preemies need in their parents. While good parenting can't fix everything, children who have good parents have the best chances of overcoming the hurdles that prematurity has put in their way.

Best wishes.

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I agree 100% with @katek on this. You may want to seek out some help. Also is there a support group in your NICU and/or your community with which you could connect? If not, this group would be fabulous and should have a peer-to-peer connection for you in your area: www.HandtoHold.org Please contact them today . . . they can be a real lifeline of true one-on-one support.

Good luck with surgery . . . I hope all continues to progress with your daughter.

And oh . . . we've all been there with the guilt. The way I handled was to understand that only my body (and in that something I could not control) failed my daughter, I mentally and intentionally, however, did not. Once I realized that it allowed me to move forward and to focus on my daughter's needs and how to help her. It was the best move I ever made because it allowed me to help my daughter in ways I never could have had I not moved past the guilt and frustration. I hope this helps . . . HUGS.

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Hold on an stay strong I know how you feel we all do even though our situations aren't exactly the same. My lo was born at 25 weeks an 5 days an is now 4mo /1mo adjusted. He has already had one surgery on his intestines an has had an ostomy bag for over 2 months now. He has about 3 maybe 4 more surgeries to look forward to, the pda(hopefully this week), getting his intestine put back together, he has a cleft palate he needs repaired, an he may need another surgery on his heart for the asd. I often thought as you did tryin to come up with a reason or explanation for why any of this happened an is happening, but there really isn't one. We have to stop looking back an focus on what we can do right now an that is taking care of ourselves, not only physically but mentally as well. I started goin to counseling once a week an it helps. Maybe that's something you could explore as well. Its a helpful reminder to stay positive and a place to help work through all the scary thoughst you may have with no pressure or judgement. I strongly encourage it as well as keep putting up post an reading other post to remind yourself you are not alone. Dont beat yourself up these lo's are a lot stronger than we give them credit for an just think how much stronger each struggle they conquer makes them. Boy will we have our hads full once this is all over lol. Hugs an keeping you both in prayer.

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I can only relate in that our children weighed the same at birth, had a PDA ligation in the first month, and also had an ostomy and reattachment surgery. I felt guilty, that it was my fault, for the entire time she was there. It doesn't matter that you logically know its not your fault, but you're still going to feel that way. It's NORMAL. However, if it gets to be too much, seek therapy or drugs or whatever will keep you sane. That's the one regret I have. I probably needed some Xanax or something to keep me together. When I finally broke, I was a walking terror, screaming at nurses and crying uncontrollably. That feeling of guilt and helplessness didn't go away until she came home. My girl does not have a brain bleed. She is currently walking, not talking, and getting into everything. She has no lasting problems from her ostomy. It is completely possible for your child to eventually be normal. Granted I'm still waiting on that day, but it's coming. You won't believe it now but this will eventually be a thing of the past. Good luck and stay strong!

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Thanks to all who posted above, i appreciate your reply's as well as your concerns and well wishes. I have previously diagnosed with depression in the past and believe me i know how hopeless and uninterested it makes you feel. The way i feel now i know its not PPD. Im actually very happy shes here but sad because theres really nothing i can do to make it all go away. All i can do is love her and help her the best i can. The problem is i hust dont want to see her precious self suffer. Here i am with a working brain, functioning limbs, never had any surgeries, and my precious baby is going through hell and theres nothing i can do to make it better and it hurts me so bad.

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I know exactly to the t hoq you feel. Your right its not ppd. Its hard to explain but i get it. I posted alot about Ronan. Feel free to read them. Just know it gets better.

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First off, I'm so sorry you (and especially your precious little one) are going through this. Your story sounds so similar to Kylie's, it's eerie.

She was born at 23 weeks back on 4/29/10 (with a 7 month NICU stay) and had all sorts of complications. Bilateral Grade 4 bleeds, NEC, external shunt, jejunostomy, renastamosis, then an internal shunt, followed by all sorts of other surgeries and infections (don't forget about her eye surgeries too).

We of course heard the worst case scenarios, which I understand they have to tell you. She'll never see, hear, crawl, speak, walk, move with a purpose....you name it, we heard it. We were asked multiple times to put a DNR on her, but refused. We could just tell none of that made sense. Just didn't feel right.

Add in all the time on ventilators (every type there is - oscillator, conventional, jet, yada, yada) and she somehow managed to only come home on a low flow nasal cannula that she needed for an additional 9 months at home until finally getting off it all.

I won't lie, it never really did get easier. Every single day in the NICU and even after getting home was crazy. She had 30+ ER visits that each turned into an admission the last year and a half and just had her 16th surgery on New Years Eve (another intestinal surgery), but when she's home and well, she is such a joy to be around.

She smiles constantly, is crawling all over the house, and just started pulling up on furniture and standing everywhere. She refuses to eat, so she gets all her nutrition via G-Tube which is fine. She's been seeing Speech, Occupational, & Physical Therapists since she's been home (a little over 2 years).

I know how you feel, trust me. It's all doom and gloom when you're in the hospital and constantly having issues come up just when you feel like things are getting better. Just hang in there. Keep the faith, and ask questions ALL THE TIME. Our little ones are so amazing and can overcome so much.

Good luck and God Bless.

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@Kyliesdad, thanks so much for yourf post. You always sound extremely positive and that is such a good thing! For the most part i can hold it togetther but inside its like what have i done!!! I constantly battle myself and question am i strong enough to handle this? Is seeing her suffer gonna send me over the top? These are questions i ask myself because i feel so guilty for not carrying full term. I feel like its my fault and i should have seen some signs so i could save her. I have a 19 year old (i had him when i was nineteen) and wasnt the most attentive parent. Still young not hardly responsible. So now, when i got pregnant this time, i was so happy because i feel im ready now and was ecstatic about being the best mmommy in the world! I was ready to do all kinds of things with her, teach her, love, protect, which are things i can still do....im just kinda shattered. See, ive never had patience, so i think GOD got me with this one. Ill DEFINATELY LEARN PATIENCE NOW...AND I know theres a reason for everythng. Thats another part of waiting and being PATIENT...BOY, THATS SOMETHING I SURE AM LEARNING! I know im babbling but my mind is all over the place, and oh, i also forgot to add she had mild ROP as well and had to have a laser surgery on her eyes.

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I hear you for sure. Boy we sure do learn how difficult patience is....everything is a waiting game. And every day, heck every minute is GRUELING!

And I'm with you on the ROP too. Kylie has Stage 4 ROP (worst you can get), so she needed experimental eye injections (experimental at the time since nobody was really getting them like they do now since it's FDA approved) of Avastin since she was too sick to have the laser eye surgery - although she would have two of them later on. Worked wonders and saved her vision for sure.

And I'm so sorry you have to go through this after being "ready" for your little girl this time. But it's nothing you did - can't think like that. Don't ever feel like you're babbling either. We all know how good it feels (and how necessary it is!) to get stuff off your chest.

I found it extremely theraputic - probably why I made an online journal for friends and family to follow over her NICU stay and ended up with close to 1,300 pages of text! :-) It helps.

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I am so sorry you have to go through this. I have suffered from depression for a long time, including the time I was pregnant and I know how debilitating and awful it can be. Please, if you feel overwhelmed, try and seek help. I took medication and I went through therapy and now, after 3 years I finally feel I am approaching recovery. My son was also born premature at 32 weeks, had 1 kilo 400 grams. He is now 2 years old, has developmental delays, hip dysplasia, but he is making huge progress, he is starting to walk finally, babbles in 3 languages (he is exposed to a multilingual environment, which worries me a bit, because I feel that it will delay his speech more...but that's not much about it I can do), he is a happy, splendid boy :) He is doing PT, OT and he is getting a lot of help from everybody. What I am trying to say is that it is a long journey and if it had not been for the medication I took and the therapy, I don't know where I would be now. I think a lot of mothers of premature babies have to go through a sort of grieving process and everybody is different. I knew I hit rock bottom when I felt paralysed by fear, anger, when all I saw in my son was his problems, and I realized not only that I would not be able to help him in that state of mind, but that my depression was depriving my son of the care he needed.
There is help out there and there are people who can help both you and your son. Please take care and have compassion for yourself!
Big internet hug :)

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My daughter was born at 24 1/2 weeks and is now 5 months (1 1/2 adjusted). She had grade 3/4 IVH which resulted in hydrocephalus also and we were devastated. We prayed it would resolve itself but no luck and she had surgery to place a rickham reservoir a couple of weeks later. They tapped the fluid from it daily- sometimes it looked like it would resolve (she could go a couple of days without tapping) then ultimately got worse and due to high protein concentrations in the CSF we waited as long as possible to do the shunt surgery (for fear it would clog the shunt and cause malfunction). We were told that it is lowest risk to do shunt surgery after CSF Protein level under 200 and IF the hydrocephalus would resolve itself it would likely be only after the protein concentration was under 100. 2 1/2 months after her reservoir was place we decided to go ahead with the VP shunt surgery- her protein levels remained high at 213 but we accepted that the surgery was inevitable and doctors assured us they were comfortable it was low risk at that point. Also she was ready to go home pending the shunt surgery/hydrocephalus resolution. She went home after 108 days in NICU, 4 days after her VP Shunt was place and is doing great! She has been home for a month and a half- worked with OT in the hospital and now people come to the house to monitor her progress- she is attentive, alert, eating well, sleeping pretty well and everyone impressed with her muscle tone and holding her head up and weight gain on track- all of the things she is supposed to be doing for her adjusted age. We were told many things by different doctors in regard to her brain bleed- from expect severe CP & cognitive delays to maybe she will just have mild delays. We continue to pray and hope but so far she is doing amazing and no signs of delays- time will tell of course but we have much hope as should you. I believe that early intervention and working with her will be the key!

I will also add that while hospitals & medicine definitely have their place and saved my daughters life, I believe in the body's natural ability to heal itself & the best we could do is be there and love her. I was at the hospital every day she was there to kangaroo care with her as long as possible, participated in as many care times as possible (even just to change her diaper or take her temp) and watched the nurses & doctors very closely and questioned everything they put in her body. I made sure they were only giving her sedatives & morphine if she was acting in pain after surgeries, didn't use tylenol unless they absolutely needed to, etc. I did not allow vaccinations at 2 months or RSV shots - they wanted to do based on actual b-day when she was only 4 lbs- these babies have compromised immune systems and have already had blood transfusions- there is NO need for Hep B, Polio, etc. shots at this point- especially how little they are (CDC says don't give shots under 5 lbs anyway). I am not fortifying her bottles 2 x per day with formula (Neosure) as instructed- I am opposed to the modified ingredients & sugar in formula if possible to avoid. Doctors could not tell me what exactly she needed from the formula (to buy in natural form) and she is gaining about an ounce a day on just breast milk alone. We are now also adding trace minerals & vitamins to one bottle per day to supplement these nutrients. See preemie growth project - I am hopeful this may assist (more to give her extra minerals like iron, etc. she needs) but she was doing great without it also!

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Thank you solo much, @clairefontaine!

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@jam1616, our situation with the bleed and hydro sound similar. I know how u feel about the wishing it would go away, I am there right now! My baby had her take down yesterday (she doing good) and now the only thing we have left to do before she can come home is get the vp shiny (and be able to tolerate full feeds ofcourse). Im just hoping she doesnt need a g tube. Everything that she s gone through, she deserves to dodge a surgery or two:). Anyhow, your story inspires me and its great to hear that your daughter is doing so well. I am just hoping and praying my baby will also come home doing well.

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Good luck to you with the VP shunt surgery- wishing your daughter a speedy recovery! My daughter handled her feedings much better after the surgery- could see a difference after just a couple of days- I hope you experience the same :). I got very frustrated breastfeeding but worked on it more after we got her home & now she is great at both nursing & bottle! Obviously a permanent shunt is not ideal and brings lifelong concerns which is what scared us but now that she has it- we hardly notice it! Plus my fears about recognizing shunt malfunction in my baby much lower- you get to know your child and would notice her soft spot bulging & mood changes very easily! I know its really hard sometimes but stay positive- your energy will be contagious and felt by your baby girl to help her heal!

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I'm sorry you have to go through this experience and worry, worry, worry...Been there myself with twins 27 weekers. One of my boys had bilateral bleed grade 3 with PVL, PDA ligation, NEC surgery, ROP. We were lucky and his bleed resolved and no shunt was needed. But the constant worry what the future holds for him... I get this part. Its overwhelming sometimes. Big hugs to you mama, don't think too much about the future ( I know easier said than done), take one day at a time. Oh- and now at 15 months old/12 adjusted he crawls on his 4, pulls up to stand, walks along furniture, plays peekaboo, gives kisses, tries to put his socks on in the morning, eats everything, says mama, dada... We worked hard with him. From the moment we brought him home from the NICU we started PT and OT, also tried some Anat Baniel lessons.

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I gave birth to twins at 24 weeks 3 days after my water broke at 23 weeks. My 2nd twin B too passed the day after the boys were born. My surviving twin, Blake, has been through the ringer similar to your situation! and was in the NICU 139 days. But I tell you his story to bring you hope and to let you know not to give up faith. Our son had Grade IV bilateral brain bleeds had a resevior now has a vp shunt had a PDA that required surgery, NEC that was actually a bowel obstruction which also required surgery- he had ileostomy and take down surgery. We were told he would never get off the vent, he did. We were told he never would be able to eat food, he does! We were told there was a possibility that he may never do anything and be just a vegetable. i am an experienced ICU nurse and was very concerned at the possibilities that may lye ahead for my son- I am amazed at where he is! . He is now 10 months in a few weeks and is 6 months adjusted and is receiving OT and PT at home and he is a true miracle!! Im not saying there wont be some difficulties along the road but have faith it all seems bad but good outcomes can happen! If you want to read more about my son's story we have a blog you are more than welcome to get his whole story with up tomdate pictures and how he is doing developmentally, physically and how as a parent we deal with it all from www.blakehargis.blogspot.com I hope it helps!

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@blakesmomma

Thank you, your words do make me feel better. My daughter has been in since she was born (Sep 13th 12) and shes finally almost home! She will have her shunt put in next week some time for sure but no set date yet. Im so excited, and sad at the same time (i hate that she needs a shunt). After she heals and gets back to taking full feeds, she will be discharged, which will be very soon. Im looking forward to her coming home and doing whatever i have to to make her life the best it can be. Also, im glad i have you all here on inspire to turn to to share good news or even to vent...we are all in the same boat one way or another and it really hepls talking to people who have been where i am and understand what im going through, inspire is a blessing!

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I definitely have been in your shoes your story sounds very similar to ours! I remember how upset I was when Blake got his shunt I don't know why but it was just that last and final straw! But he tolerated the surgery great! And besides a visit here and there with his Neuro doctor I don't even think about it! Sometes it's nice to talk to someone who has been through the same things so if you ever want to talk feel free to email me its katie_lyn02@hotmail.com and of course you can always check the blog just to see how Blake progresses and things to expect I know every child is different but its nice to follow a child that's been through the same.

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HUGS! @Blakesmomma, I needed that! I will definately be using your email address.

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My son has been through similar experiences as your daughter. He was born at 26 weeks and also had bilateral grade 4 IVH and hydrocephalus. He had a reservoir put in when he was about 2.5 weeks old and had his VP shunt put in when he was around his due date. The shunt surgery was hard, he had a hard time coming off the vent and was in a lot of pain afterwards, but after about a day he came off the vent and didn't require any O2 or anything. The shunt made such a big difference for him and he was suddenly much more alert and actually crying to be fed, which he didn't do before. He went home shortly after the shunt surgery, however, about a week and a half after coming home his shunt got clogged and had to be replaced. That surgery was much better, he bounced back very quickly and was home the following day. Since then he has not had any issues with his shunt.

He is now 2 years old and is just the happiest sweetest little boy. He does have quadriplegic cerebral palsy, which has really delayed his physical development. He is not able to sit up on his own yet, crawl, or walk, but he is able to roll from tummy to back and sits in my lap to play with his toys. After he came home from the NICU I noticed he was not looking at anything so I took him to a neuro ophthalmologist and was told he had optic nerve damage and might also have CVI and that he was blind. Fortunately over time his vision has improved and he now can see faces and objects if they are close enough to him. When we were in the NICU one of the nurses told me that he was never going to smile, and the doctors told me he might not even know who I was. He smiles, he laughs, he gives hugs and kisses, he says "mama" and "hi" and is now trying to say grandma. It isn't easy to have a child with special needs, there are a lot of demands on your time between doctors appointments and therapies, and you will always feel like you could be doing more, but it is the most rewarding job I've ever had.

The two feelings I had the hardest time with were guilt over his early birth, and fear of what his future held. These are feelings that can really eat you up, but you shouldn't try to just ignore them or push them away either. I tell myself that feeling guilty won't change what happened and it won't help my son, and he needs a mom who is present and healthy. The fear of the future has gotten easier as he's gotten older because I now know more about him and what his issues are, and what his strengths are. I find it's best to focus on the here and now, and what can I do now to help my son? I can love him, cherish him, and be a good advocate for him. Whenever you feel like you are not strong enough, just lean on God because He will always give you the strength you need.

My advice is get her started on therapy when she comes home, she will automatically qualify for Early Intervention services, so take any and all therapies offered because they really do help. We use EI for some services, but for physical, occupational, and speech therapies we use private companies because he is able to get more frequent therapy that way.

If you ever need anyone to talk to please feel free to send me a message!

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