Any advice on surviving the nicu and a 28 weeker?

Nichole - posted on 12/09/2012 ( 3 moms have responded )

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Any one have words of wisdom, experience to share? I just want my baby home and healthy. His knees are starting to swell from being on his tummy all the time, his head and ankles are showing signs of wear and tear of being positioned for long periods of time. He has de-stats and has just gone through an mrsa infection after doing quite well with his breathing. Now not so much. He had issues with his heart when first born, but we made it through that one ok....I am only 4weeks in and I am not sure I can take much more. Any advice is welcome... Thank you

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Liz - posted on 12/10/2012

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My daughter was born at 28 weeks and was in the NICU for nearly 12 weeks, when I was 38. She weighed 1 lb 15 oz when she was born, both her lungs collapsed and had to have chest tubes in. She also had issues with her heart but these resolved, thankfully, with first line medication.



I'm not sure that I have words of wisdom to share with you, though I have a whole lot of sympathy for you in the days ahead, because there will be elements to your experience that are uniquely yours and not mirrored in the experience that I had.



Our neonatologist told us something that really helped us get through it all though: he said to remember that it's a roller coaster, that we'd hear of good progress and then we'd hear of setbacks, but that gradually the ride would be inching us closer and closer to the point where we could disembark (and take our daughter home). He was absolutely right. We lurched from scare to progress to scare. When they eventually moved her into the transitional room, we couldn't believe it and from there her progress just raced. The last week flew by with dramatic progress every single day.



I found being separated from her the hardest, but the NICU gave me their direct phone line and I could call whenever I wanted outside of the shift change periods. They also had a room where I could sit and express milk, so that I could spend the maximum time there each day. Of course, mutual emotional support between my husband and I was of paramount importance: we talked often about how we felt and what we could each do to support the other.



They've probably already told you to expect that your son will be in the NICU until roughly, give or take a week or so, the time when he was due to be born. This means that you need to find the strength to keep going for what might be another 6-8 weeks. Take each day as it comes. When you finally get to hold him for small periods (if you aren't already doing this), just enjoy the moment. Don't compare what you're going through with the experiences of mothers who got to go home with their babies, because it will just choke you up.



When you eventually get to go home, be braced for the possibility that he might need a heart monitor or oxygen. If he does, don't panic: you'll get the training that you need. Our daughter had a heart monitor for 2 months and we just had to get used to the leads (and the alarms). Also, don't be surprised if you find going home with him to be utterly overwhelming. It's hard to find yourself responsible for not merely a newborn, but a tiny person who has had so many special needs already in life. I can't tell you how many times my husband and I fretted about the most trivial of things. In any case, if anyone offers you help and support at that time, find something for them to do that is helpful to you. You'll need the moral support if nothing else.



Lastly, you may find yourself tempted to think of yourself as an inadequate mother, because you weren't able to carry him to term. I know I found myself thinking this, even though there was nothing that I'd done that was to blame - I have a uterine abnormality and she ran out of room, simple as that. You are not inadequate. You will be a great mother and you and he will bond and delight in each other for years to come.



Edited to add:



My daughter will be 3 in January and is a bright, inquisitive and FUN little munchkin, who keeps everyone on their toes. She has asthma that requires daily medication, but other than that has no lasting effects of premature birth at all. It really can turn out alright in the end. Keep your faith and what are currently difficult days for you will eventually get easier.

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Nichole - posted on 12/09/2012

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FYI I have just had my first baby at 37. He was born at 28 weeks and five days premature. This has to be one of the scariest things I have ever experianced, and I have had my fair share of life experience to compare to!

Nichole - posted on 12/09/2012

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I have just had my first baby at 37. He was born at 28 weeks and five days premature. This has to be one of the scariest things I have ever experianced, and I have had my fair share of life experience to compare to!

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