Thanks Anne, and everyone for the great welcome. My wife, Sandra and I just got back from Ottawa 10 minutes ago.....and it wasn't the greatest drive. 15 centimeters of blowing snow in the dark. Ben lost a bit of weight the other night, although he is still hovering over the 5 pound mark. He was having a bit of trouble breathing today so they did an xray and found water on his lungs. He was given lasix.

My wife finds it hard sometimes having to go to Ottawa alone when I am working, but we have met a few friends within the NICU, all with different situations. It can be hard being at a learning hospital when they constantly rotate staff and students, and as has been put the experts don't always know what to do.

The other frustrating thing can be having staff tell you that he is coming home in a few days, such as we were told ( that he was coming home this coming Saturday ) and then turn around the next day saying not for a couple weeks. It is hard when your hopes are up and down such as they have been.

This experience has definitely and will continue to be an amazing learning adventure. We want to be able to be there for others suffering through the same.

Hi Chad, I wanted to add my welcome to the others. Your story is very moving, your family has been through so much the last couple of months! How is your wife doing? Going back and forth to the NICU is so exhausting, an emotional rollercoaster. I hope that your son gets to come home soon. Keep us posted.

Hi Chad,

I just want to add something that you may find helpful. I went through almost the exact same scenario during the birth of my third son--the major difference was he was nearly at term so we didn't have that tough challenge. But the story you describe about your wife could have been me. That was over 12 years ago. I cannot recommend counseling enough. What you and she survived can cause PTSD. It did for me. Kara is right--there are a lot of people here who can relate and even better, a counselor who isn't a survivor--someone who knows how abnormal what you endured is and how you can find your way back to normal. We can help with the "wow--me too" stuff, but most of the world we live in won't get that and a counselor can help you build a bridge between the two. In the meantime, be kind to yourself--I remember a good friend of mine here saying she avoided bonding with her son for some time because she was afraid of losing him. That is normal so be gentle with yourself if you feel remote, confused, anxious...I'm glad you all made it through the worst of it. Don't make the mistake I did and live with it too long before getting professional support.

Hi Chad,

Welcome. I'm glad you've found us, but so, so sorry to hear about all that you and your family have been through. You are unfortunately in very good company at this website.

I'd like to invite you to our "Parents of Preemies" forum. You'll find lots of support while you continue the Nicu stay, and after you come home with your son. Lots of "been there, done that" experience, that I was very grateful for when I was in that stage.

Here's a link to that forum: http://www.preeclampsia.org/forum/forum.asp?FORUM_ID=23

How is your wife doing? She may find the forums useful, too. It's a horrific experience she just went through, and she's bound to have some questions about what happened and what the future holds.

Kara

ChandAndSandra - First of all - Welcome!

Wow - you have been through quite a bit! I hope that you have someone helping to take care of you as well and that you are able to 'vent' some of the pressure you must be feeling. I know that through my experience which was far less traumatic than yours (at least my wife didn't have to be brought back from the dead!), I know the stress of having to be there for mom and baby was tough at times.

I agree fully with your main point - we do each help in our own way. Hopefully in positive and supportive ways - at least that is what we strive for (at least most of us anyway). Having the support system in place at the right time is an important part of it though. Not knowing what to expect leads to more of the "new dad" blunders that you referenced. The sad part is when the hospital personnel who are supposed to be the experts appear to be the ones who are new at things too - at least it appears that way to us when we don't understand what is going on and sometimes (worse yet) when we DO understand what is going on. Knowledge and understanding go a long way in helping to reduce errors and save lives.

It is great that your family will soon all be home! Certainly something to celebrate. I hope that it all goes well. As you prepare for that day, know that as you said, it isn't all over. You will have some additional challenges that "normal, term birth" families don't have to consider and likely won't understand or appreciate. You may find the "After your baby is born" forum here to be helpful to read up on some of these things - I did.

Best of luck - and do stop in and share your thoughts!

My wife had our son at 25 weeks. I don't think thanksgiving will be the same for a long time as I remember coming home from my parents thanksgiving Monday and having to rush my wife to the hospital. I remember her saying.."oh there are just going to give me something for my high blood pressure and then we can come home." Upon arrival to the hospital, she was admitted immediately and told that she had preeclampsia and hellp syndrome. Then we find out that the hospital was not equipped to handle this and my wife was ambulanced to ****, where Benjamin was born at 11:30 pm on October 17. He weighed in at 1 pound 9 ounces.

The whole time before Benjamins birth, I was a nervous wreck. Right from the typical hysteric "new dad" blunder of getting lost on the way to the hospital, to pacing the halls not knowing what was happening to my wife. One of the kickers was that this was a learning hospital so you had different people in constantly telling you something different....all students. All the while my wife is lying in bed swelling and become more edemic by the moment. Her heart and lungs were filling with water. She couldn't tell me or the doctors how she was feeling because of the medication she was on.

One of the biggest struggles for my wife was that she couldn't do anything for herself and had to rely on me to do everything for her. That was very hard and she would tear up just having me put her socks on for her. Feeding her was something else.

Benjamins delivery was under the circumstances, a very exciting moment for me. That is until I was told that I would have to return to my wife's room when everything started to go wrong. My wife's freezing didn't take and they had to put her out. The moment they layed her flat she began to drown in her fluids and she was put into an induced coma. The kicker out of this was that.....and I wasn't told until a few days later, that my wife had dyed on the table and had to be brought back....so you could imagine my heart dropping.

Here is where you feel split. Your wife gets rushed off to ICU where she doesn't wake up for 2 days, and your son gets taken in another direction. My thoughts at the time were which direction I would go. Do I rush to my wife's side or go with my newborn son. I went with my son, but felt horribly guilty about not going to my wife.

I think for most fathers that if it isnt one extreme where we are going crazy, being irrational and doing crazy things like getting lost on the way to the hospital it is that we are keeping our feelings bundled up. Tell me if I am wrong here. I remember the social worker at the hospital coming to me and asking me how I was feeling. That in itself was a relief because from the moment my wife entered the hospital, no one had ever thought to ask DAD how he was doing.

It is 3 months later, and our son is still in the care of the hospital. He was moved because it was closer for us to visit with him. My wife goes down almost every day and I try as much as I can because of my work. It can be very frustrating because he has his good days and his bad days. Benjamin is out of his isolet now and is getting better at the bottle feeding. We were told that he might be coming home this coming weekend....when he will be term. So that is exciting. But I do have to hold my excitement because things change.

Long story short, I think every father in this situation helps there partner in his own way. We might act irrational at one moment but no matter what we are always right there at our wifes bedside waiting to save the day.

You sound like my Husband as well,

Good to know that there are other husband that feel so confused and frustrated.
I would say really stress you history and concerns about this pregnancy and make the OB and hospital a wear that a bit and a trace is not good enough, you know what to look for and been through it all before. I know doctors know alot but if you and your wife are concerned thing arn't being delt with properly ask for another doctor and start again with the whole experience and concerns you have. Talk to your wife about your worries but reassure her you just want the best.

I would love another baby but my husband is worried bout loosing me after we came so close last time.
maybe one day soon We will be able to make a decision and know what to do it can be very scary and my heart goes out to you both.

good luck and I pray all goes ok keep us posted.

Get a copy of all her records and keep them in a binder - take it with you to every appointment (you can have them copy each visit's chart if you like so that you have cumulative information should the need arise - I found it *very* helpful in triage or when seeing someone who was unfamiliar with me/my case).

I remember Kelly mentioned she tested + for an underlying disordera while back. I don't recall what specifically it was, but I would definitely follow up with that and research current therapies surrounding it and their success rates (ie lda, lovenox, increased folic acid, etc).

I would build the biggest list of possible scenarios/questions, print them out, stick them in 'the' binder, and take them to the doctor interviews. Write down the answers they provide so that you have something concrete to reference.

Ditto on lab results/blood pressure readings/urine dips -- ask for specifics. And sometimes you have to ask very pointedly.

As far as being upfront with OB, I would definitely do so. You want them to be aware of your specific situation, of your mistrust of the medical community as a result of prior care, and your plan of how you'd like to see the pregnancy go - and how that doctor can get you there. My DH and I made it a point (during our preconception appt with my peri) of mentioning how we felt "hoodwinked" (as the peri called it) by my previous doctors, and how another pregnancy was very much a leap of faith and that we wanted someone who would do some hand-holding along with aggressive management. We found them in my last doctors - they are out there, sometimes it just feels like they are so hard to find.

Thinking of you both,

Yeah I am a TOTAL NUMBERS girl myself. I don't want to hear it's trace or normal. I WANT NUMBERS.

I wish you could train my dh. He wants to know but then buries his head and doesn't want to hear bad news. I have to be the champion of my care.

quote:

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Originally posted by misscoleyp

You sound alot like my husband. I know that when he gets angry at doctors or nurses it is because he almost lost me.

I'm interested to see what others say.

What I have done, is learn the tests that are run, what levels are normal, what levels cause concern and what to do then. There will be no more, "You're BP is a little high." I want to know the number, not a little high.

We also have a plan and a dr that is commited to it. I think that makes a big difference. I know from the past, that she isn't the kind of Dr that thinks they are always right. She will get 2nd or 3rd opinions and seek other information. She also isn't against me bringing her recent research or suggestions.

Good luck in finding a dr that will be that open with you!

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You sound alot like my husband. I know that when he gets angry at doctors or nurses it is because he almost lost me.

I'm interested to see what others say.

What I have done, is learn the tests that are run, what levels are normal, what levels cause concern and what to do then. There will be no more, "You're BP is a little high." I want to know the number, not a little high.

We also have a plan and a dr that is commited to it. I think that makes a big difference. I know from the past, that she isn't the kind of Dr that thinks they are always right. She will get 2nd or 3rd opinions and seek other information. She also isn't against me bringing her recent research or suggestions.

Good luck in finding a dr that will be that open with you!