Premature babies - getting through the first year

[Jodiesmum]

Just wondering what other people's experience of this has been been? DD2, who will be one next month, was born 2 months early and for me, the whole of her first year has been extremely hard. I feel very guilty for feeling this, considering how lucky we are that she's alive and doing OK, but I seem to be going through a really low period in the run up to her birthday. It's partly the feeling of re-living the end of my pregnancy again and wishing so much things had happened differently, combined with the fact that DD2 has never yet been really well. From a selfish perspective this makes her really hard work, especially at night when she rarely sleeps for more than 2 hours at a time, often much less. I'm exhausted and feel like I'm on an emotional rollercoaster, alternating between love and resentment with huge amounts of guilt thrown in at all times! I also feel like my relationship with DD1 has suffered from the events of the last year (have just posted on another thread about this) so feel very guilty on that score too. It would help a lot to know others have been through similar things and come out the other side.

My DS was 5 weeks premmie and besides some initial problems with him being kept in a different hospital to me, jaundice and breastfeeding problems - he has been OK. I do feel cheated of those last few weeks of pregnancy and the chance to be properly prepared for his birth. He has been quite slow in the motor skills development area. He only pulled up for the first time this week and he is 13.5mths old. It has gotten to me at times when people compare him to other babies his age, people have been asking me for the last month or two if he is walking yet, but nothing compared to what you have been through.

I hope people with more comparable experiences post soon for you.

You don't mention your DH/DP in this post, but I hope he has been supportive and done his fair share of night runs etc. I have often seen with friends that when the 2nd bub comes along the dad takes a lot more responsibility for the older one. I have warned my DH that this will be my expectation when/if we have another.

Sending (((((hugs))))).

My dd was prem too but only 5 weeks, and didn't have any lasting probs, but a good friend of mine gave birth to her dd 2 months early too. Alot of what you've said in your post reminded me of things that she said in the first 2 years of her dd's life.
She often felt very down, and stuggled to overcome the events of her dd's birth. She really found it hard to come to terms with the fact that she very nearly lost her. I think it's not surprising that you feel the way you do, after all giving birth is hard enough when there aren't any problems.
Do you get much help with your DD ???? Is there anyone that could look after her occasionally just so you could have a bit of rest and relaxation.
You shouldn't feel gulity about anything either.

I know it's hard, i felt guilty for a whole number of reasons when dd2 was born early, and did struggle a bit to accept things (in fact i had pnd).

God i'm really rambling now sorry.
Hope you know what i mean, and hope things get better for your soon.

My dd was born by csection 7 weeks early and spent two weeks in special care. She was fine except couldn't breastfeed, which was incredibly depressing for me. Then she had gastric reflux until almost 7 months old. I think it took me almost a year to bond properly with her as I found it so hard to cope with the exhaustion and the emotional challenges. She's now 18 months and a delight, even tho shes still tiny for her age, has only recently started walking and doesn't eat much so continues to worry me all the time (well don't they all?). My advice to Jodiesmum would be it does get better, eventually. Progress is in small steps with premmies, and everything takes longer (mine still feeds in the night...). But I have learnt not to compare her progress with other babies and to focus on her positive attributes (very chatty and a complete show-off!) rather than worrying about her lack of enthusiasm for climbing or running about.

If your dd was born by csection it would be worth considering taking her to see a cranial osteopath, especially if shes having sleeping problems. A good ost. can make a huge difference (I've seen it work on my dd) if they are experienced with children.

Ds 1 was born 6 weeks early and isn't it a shock? DH was working abroad and missed the birth. I was gutted and quite unprepared. Ds was quite ill at first and I was scared to hold him. I found it very hard to cope at first, but things gradually got better. My sister had her ds 10 weeks early and he was very ill and weighed only 2 pounds. He is now 6 and though has developed a bit more slowly he is now catching up at school. He was always small, but is now getting tall and more confident. Things do get easier. As for the lack of sleep, My ds2 was born 16 months after ds1 and didn't sleep more than 2 or 3 hours until his 3rd
birthday. I was the other way round to you. Ds1 was just getting easier and along came ds2 and I felt so guilty, and asolutely exhausted. Things will get better though and you will come through. I hope you soon feel better.

Jodiesmum, I know some of what you feel. My DS was also 2 months early. He was in the special care unit for 10 weeks and then on home oxygen for 9 months. The hardest part was the lack of sleep. Like your DD he seemed to wake every 2-3 hours and as I was breastfeeding, DH could not really share the night routine (he refused expressed breastmilk in a bottle from 3 months). However, you have the added stress of DD1 and I'm sure you must often operate on autopilot!

But.... it does get better, both the physical and the emotional sides. I knew for 8 weeks before DS was born that there would be problems and I think sub-consciously I erected a barrier, so if the problems were very serious I could cope. It took a long time (about 16 months) to work through the feelings and remove the barrier. The greatest help was attending a Mothers and Toddlers group. I now try to be more positive. When my DS was not starting to talk like his peers, I put it down to the fact that he was learning 2 languages. When his eating is worrying me, I look at my skinny DH and say he has his father's genes. It has got easier over time not to think of his prematurity, especially as he masters the very visible milestones of mobility and speech. My DS is now 2yrs 9 months and a great joy. He is hyper observant and he adores music.

Hi girls, my son is now 20 months old. He was born 6 weeks early, he wanted to come, so I had my 3rd c-section. Throughout the pregnancy, I had a MILD heart attack, needed a MRI scan, there was a possibility of a stroke, and my blood pressure was very low, 60/40, and I am an insulin dependant diabetic. At birth my son had an exomphalos= intestines outside the belly. That was repaired at day 5 at Great Ormond Street Childrens Hospital. They then scaned him, and he was diagnosed with Tetralogy of Fallots= 4 seperate defects of the heart, this was a major 5 hour open heart surgery at 6 and a half months old at GOSH. He could not feed, would not suck, and so had to be tube feed for 7 weeks at hospital in the SCBU, they did not want to let him out before the NGT tube was removed. He was finally diagnosed with 7th nerve cranial palsy at 15 months old, a facial stroke. It took the doctors that to realise my baby had a problem with his mouth/throat/swallowing and everything else this entails. He also has overlapping 3rd and 4th toes on both feet, he loses balance and frequently hurts his head. The podiatrist will finally see us on April 5th. I expressed for 10 and a half months for my baby, I had to do something for him.... I felt so useless...... We have not slept for more than a couple of hours at a time since he was born. It is now finally getting to me, I need some sleep, my sugar levels are very high, and I don't trust anyone to watch my baby, its a never ending circle. He has had his surgery, but I still panic that he will go blue again, and stop breathing. And now on top of all that he is very hyperactive.... he may have ADHD, but I'm sure it is not diagnosed this early. THAT IS MY RANT OVER, thank you for reading.

Survivor. My DD is still treated at GOSH. The one sobering thing I find about going to GOS is that I always meet a parent with a worse situation than my own. This is never a comfort though. My hopes are with you.

Every sympathy and empathy to you Jodiesmum. The first year is tough enough with a healthy child. Sleep deprivation is torture, especially when you are caring for a sick child.

My dd2 was born at 31 weeks with a kidney tumour. She underwent surgery next day and has since undergone chemotherapy and more surgery. She has lost her hearing too. She is now 20 months from birth, able to stand (not yet walking) and has started to say words (using hearing aids). It was really tough on DS1 who was 2yrs 3 mths at the time. He is very expressive though, and is able to talk about it. I put DD1 to bed 30 mins before him and we have time for stories and talk. I hope my dd will have no memory of the awful suffering she has endured.

After all the suffering we as a family have been through I do sometimes feel exhausted. I am still shocked by what happened. We did not know she was ill. I had pain was told the baby was distressed, and she was born by caesarian minutes later. I wonder how we ever coped. We did say that whatever way things went, if she lives, we will love and accept her as she is. For 17 months we had bad news after bad news. There was a time I wondered when I would ever sleep a full night again, but it has improved as we know her more and can trust ourselves to judge that she is ok even when crying at night. I tried to keep to a sleep/feeding routine through months in and out of hospital. I needed it to keep me sane though at the time, it sometimes felt pointless. It has now paid off.

She sleeps well and eats as much as her brother. I feel positive and proud of my dd. Of course I compare her to children of her age, but usually she comes off better!!! She is full of smiles and life and with our full love and support has a bright bright future.

Does your DD need to be fed at night? If not could you start letting her cry back to sleep? I know how hard that is. I still sometimes hear DD turning in bed and am ready to jump up. Then I put in my ear plugs!!!
Good luck.

Thanks so much everyone, I feel very moved reading these postings. Topcat - I'm so sorry to hear what you little girl has gone through but it's wonderful to hear she's still smiling and full of life. Our DD2 has suffered a lot too and one of my worst fears is that our DD2 will be emotionally scarred by her early experiences though hopefully this won't be the case. I feel so terrible that I wasn't there for her in her first 8 weeks, only visiting the hospital for an hour or two each day instead of sitting there all day and all night as some of the other mums did. At the time, I thought I was doing the best thing so that DD1 wouldn't feel abandoned but I wonder now if I was just being a coward as I found sitting with DD2 very hard to bear and getting her out of her incubator seemed to make her worse - setting off all her monitors as though she couldn't handle it either. These are the kind of things I'm still pondering over a lot, especially as DD2 is going through a horrendously clingy stage now and seems to need to be held/carried 24 hours a day. I wonder if this is her reaction to what happened or is it just her natural personality?

My dd was born 9 weeks early due to my pre-eclampsia and although she was fine , but 3lbs, I was pretty ill. I suffered in the first year, because everyone kept commenting on how small she was (as if I hadn't noticed!!). I had post natal depression, but the drugs made me feel like a zombie, so they said it was more post traumatic stress. Still, very little bonding - I cried when she first smiled at me, but that was 4 months after she was born. We had a huge 1st birthday party for her and on the day of the party, I woke up and it was like a curtain had been lifted. I was so happy to have got that horrible year over with that I suddenly felt like looking forward for the first time. I promised my dh I wouldn't tell my birth story one more time, as I had bored eveyone incessantly by then.... DD is now coming up to her 7th birthday - still slim, not hugely bright, but no lasting damage, it seems. Anyway, I'm not going to blame anything on the circumstances of her birth, because we will never know what she would have been like if she went full term. Have managed to have another one, ds, now 3 and am stupid enough to be pregnant again!! Don't look back, look forward and be proud you got this far....

Jodiesmum, I didn't post before becasue I have told my 'story' to death. However basically DD1 was born 13 weeks early at 27 weeks, weighing 1lb 12oz (so far I think she holds the record for the smallest baby born to a mumsnetter!! ) anyway we have been extreamly lucky with her and at 5 she is a happy bright little soul, you would never know she was prem.

But the thing that still is in the back of my head is the fact I never 'hung' over her cot day and night, I just couldn't. Looking back it was my coping mechanisim to almost deny she existed - she didn't feel MINE until I got her home - in case she didn't survive. I know I am being daft, but the bond between us is so different than the bond between DD2 who was born dead on her due date.

Please don't beat yourself up about the amount of time you spent with her in hopsital, you are having a tough time dealing with her and of course it is a rollercoaster - think about it though, it is not her prematurity that is making things difficult. Any parent of a child who needs extra attention lurches from one emotion to another.

Like I said I was lucky DD1 was just like a 'normal' baby albeit small, and needed feeding at night until 13 months - but it was one quick 15 min feed at 2am, otherwise she slept from 8 til 8.

It does get better, life settles down, and the resentment/guilt does fade. It may still be there occassionally, but please don't worry, IT'S NORMAL TO FEEL CRAP WITH NEXT TO NO SLEEP!

Thanks Crunchie, great to have that reminder about the lack of sleep (I'm getting so used to it I forget to take it into account!). Also really helps to hear that someone else couldn't do the cotside vigil thing. I guess in reality lots of mums were missing every time I went to the hospital but it was the ever-present ones I noticed and compared myself with.

Of course you compared yourself to the 'oerfect' mothers. I was a first time mum, so didn't even have the excuse of another at home to look after Fortuneatly DH was alo around all the time, he wasn't working, so we spent lots of time together. My SIL who also had a prem baby 2 yrs ago was the total opposite to me and spent weeks hanging over the babies cot. No wonder she is a total neurotic mum who child now goes back into hospital for a cold! (sorry I am total cow here!)

We all do what is right for us at the time, and right now you need to take care of yourself too.

perfect mothers I mean