Scared and I dont know where to turn.

[PrincessPea]

Huge congratulations on the birth of your amazing baby! xx

I cant really add anything that hasnt been said but take it one day at a time, you will get there.

My thoughts are with you. xx

 

[preemie12]

Hi everyone. Thanks for the replies, and than your Vermeil for the website link, it was extremely informative and useful. Whenever I get a spare moment, I'll pick up a book on preemies to get through this.
The baby is having ups and downs... yesterday I took the mommy there for the first time and she was shocked to see how tiny he was, even though she saw many photos and videos of him. We had quite a scare, as twice the heartrate of the baby dipped down from 150 to 80 bpm. I know the nurses know what they are doing, but its scary to see those episodes.
Baby is still passing blood in urine, and the CPAP usage has been turned up as the baby is not ready to try breathing that independantly. I've got to just keep positive and focus on the good....
thx so much for all your support and genuine concern. You're all such good souls.

 

[Agiboma]

Hello,

Congrats on the birth of your LO, well the girls have pretty much said it all but i wanted you to know and please keep this in your mind that the NICU is a complete rollar coaster ride except your not at a them park its real life and that is what makes it the scariest. My son was born @ 25 weeks we spent 15 weeks in the hospital, he's almost 1 year now and doing great.
My son also had a heart murmer and had surgery @ 31 weeks gestation to correct it, PDA is very common in preemie babies all babies have a pda only difference is that it closes a few hours after birth in term babies. Also the slow heart rate is very common we went thought what they call "spells" up until 38 weeks.
A "spell" is when the heart rate slows and also the respirations slows @ the same time, because of the immature circulatory system this is common in premies and its something your LO will outgrow as they come closer to the due date.
My thought are with your family sending you lots of positive energy

 

[RainbowGift]

Yup.... the heart rate dipping under 80 is common. It is still SO SCARY, and used to jangle my nerves so much. My son would have these (bradycardia) episodes even when he was almost ready to be discharged-- but would drink his expressed breast milk too fast and choke. The choking would always be paired with a brady. I came to realize that all babies have bradycardias, but since they are not on monitors, the parents never know. That made me feel a little better. Our preemie babies have more than their share, because it's not just when they are choking on milk... their systems are still learning how to juggle everything and breathe at the same time. The monitors create a safe feeling AND an unsafe feeling in the parents. I hope your wife is able to start spending lots of time in the unit. Is she planning on breast feeding? Love to you all!

 

[PrincessPea]

You should have a look at the VIP thread at the top of this section. I know when my LO was in the NICU, looking in that section at everyones stories helped me a lot as it gave me hope. xx

 

[preemie12]

Thanks princesspea... the VIP section had a lot of photographs and was so heart-warming to see such good changes in the preemies. It definately did lift my spirits.

Rainbowgift, my wife has made 1 trip to the baby so far, and should start going regularly as soon as she's fit. But we've been expressing milk like crazy, even though the baby feed is just 2ml per feed.

The baby opened his eyes for quite some time today... it was amazing! He looks so helpless, but I truly believe that me going there is helping my baby recover. I can't do much, but at least I can be there for my baby. And going there has made me a bit more comfortable with the NICU.

Now next step is when the baby can get off the CPAP/ventilator... just taking it a day at a time.

 

[AP]

Fab to hear he opened his eyes! You being there will help. Bear in mind he can hear your voice outside the womb before this so take a book in and read a story, or even the paper. My 27wker Alex got to hear all about the life and times of Michael Jackson

My mum had me at 29 weeks emergency c section, the nurse had to practically force my dad to touch me in the incubator to keep me going (he liked to tell me this when he was drunk and emotional )

 

[RainbowGift]

Happy Father's Day!!!!

 

[Agiboma]

happy fathers day daddy thinking of you and your family

 

[preemie12]

Hi All,

The baby's doing better.... first day yesterday no blood in the urine, so the kidney seems to be improving, but still some ways to go. Baby's back on ventilator, as he was having frequent episodes of apnea, so doc put him back on it.
But I'm upset at my doc. I know she was doing her job, but it was my wife's first meeting with the doc, and instead of focussing or mentioning the positives - ie no blood in urine, ultrasound of brain shows no problem, liver damage seems to have healed... she kept on emphasizing how ANY organ could be damaged. She said the events at birth may have caused any damage to any organs, and this could only be detected later. The brain seems normal, but, these are her exact words, "whether the baby turns out to be a genius or is ********, i cannot say". How insensitive is that?! And that too to my wife who is meeting her for the first time. While I agree we should know the risks involved, but shouldnt we take happiness in the improvements rather than worry us about future? After the meeting with the doc, we were both so quiet, and there was an overall feeling of uncertainty and helplessness once again....

Can't wait till my little tyke comes home and shows the world what hes made of...

 

[preemie12]

imagine baby and bump didnt want people to read the word my doctor used to US. I can't believe she said that.... the ******** is another word for mentally handicapped.

 

[Marleysgirl]

I don't know about anybody else, but our NICU doctor was similarly blunt about Andrew's potential problems. He had a bleed on his brain before birth, and the doctor said that it could affect absolutely anything from then on - she couldn't tell us what or when. He's got a hearing loss, and developed epilepsy last year (successfully treated and non recurring), both of which have now simply been put down to "the brain bleed".

However, she did this in a kind way and I was grateful for her being so frank. It meant that we could celebrate every small step/progress that he made from then on.

 

[preemie12]

Yeah you're right Marleysgirl. Anything could go wrong, and they want us to be prepared. Like today, I just found out, that our baby has got PDA and 3 holes in his heart. They had disappeared but have since reappeared. The baby was having mother's milk, slowly increasing, kidney's were improving... and now today milk is taken off, they're administring ibuprofen, it's going to put a strain on the already damaged kidney. Our baby also needs blood transfusion as he is anemic.

How do you all deal with the uncertainty? That everyday it might be something new? Or something that reoccurs? It feels like everyday someone is ripping out your heart, and there's nothing you can do about it.

 

[Agiboma]

Keep telling yourself daddy that its a rollar coaster full of up and downs literally everyday its something new in NICU, best thing to do is to truly celebrate the good days, so the bad days dont get you so down, NICU is difficult hardest thing i ever expereinced in my life and their is no coping mechanism i can think of that will make it bearable you just manage, hang in their daddy

 

[Marleysgirl]

How do you all deal with the uncertainty? That everyday it might be something new? Or something that reoccurs? It feels like everyday someone is ripping out your heart, and there's nothing you can do about it.

That's exactly why you need to celebrate the good stuff

Andrew had transfusions too, I think he had three in total, due to low haemoglobin levels.

 

[Hotmum]

Hey preemie dad ! Congrats on the birth of your son !

I just know how scary it can be... The monitors, NICU, ventilador
Good to hear that he is improving ! Sounds like a little fighter, I am a mommy of 2 preemies and use to see small babies ( had couple friends with preemies and my Goddaughter is a 25 weeker ) but everyone else who is not use to preemies use to visit me and my girl in the NICU and tell me how small she was... I think she wasn't thaaat small, but I was use to preemies so, anyways !
The heart rate drop is called bradycardia and good news is : They outgrow it ! =D
My baby girl had bradys for weeks! just a week before comming home she was really bradyfree and apnea too, she use to have apnea, but just like my little lady ur little fighter will outgrow it
the kidneys and PDA is a wait and see game =( hopefully the meds will do the trick for the kidneys and the PDA really depends baby to baby, some need surgery some just close it by itself ( my Goddaughter did !)... I really hope things get better !

Was a loooooong 38 days before she finally came home, but as soon as they turn that corner they are just like newborns!

U will be in my prayers... Keep us updated!

 

[vermeil]

oooh no more blood in urine that's definitely great news! congratulations

I see you are at the ten day mark! That is a MAJOR milestone! WOO HOO! *dances* Yet another small thing to celebrate

How do you all deal with the uncertainty? That everyday it might be something new? Or something that reoccurs? It feels like everyday someone is ripping out your heart, and there's nothing you can do about it.

You just somehow find the strength and keep going, because you need to be there for your little fighter. I know it is very, very hard...Most here will say it's the hardest thing they ever did their whole lives. I was in pure survival mode for months, just trying to get through each day and hang on to every tiny little bit of good news.

My son had over 10 transfusions, 2 within 24 hours of life, they're very common! PDA and heart issues are (unfortunately) very common, but generally are treated routinely and babies recover fully from them. As for going back on ventilation, my son was on an oscillator (the big huge scary machine that is more invasive than ventilation) for weeks, then ventilation, then cpap, then eventually just passive oxygen - in fact he switched between the first three so often I felt like a pro inhalotherapist by the time we were done, knowing the inner workings of all of them

A trick that I found helped immensely is to have ONE person you give news to daily, and have that person inform ALL your friends and family. In the first few weeks I could barely give daily news to my mother - even that I found very hard. She in turn was contacted by everyone else. It took a HUGE load off us the parents, allowing us our peace and quiet to fully focus on baby.

And I cannot believe just how insensitive that doctor was to your wife!! That's just awful!! I also received the Talk about possible long term issues. At least to us they were very gentle and diplomatic about it. It seems a common trend, doctors tell preemie parents the worst possible scenario, scaring them half to death. But often preemie babies turn out just fine - it's amazing how their small developping bodies can heal, adapt and outgrow any number of complications!

Please keep us informed... Your family will be in my thoughts.

 

[preemie12]

Thanks for the comments and suggestions. You're right, this is by far the most difficult experience in my life, but it definately is making us stronger, and if anything it has taught me to live in the moment, and appreciate everything in this very moment. Because everything can change in one instant.

Will give update when there's some good news... at the moment its just a waiting game.

Right now our whole family is having ups and downs. Some days my wife is super down, some days I'm out of it, today my mom has lost it and suddenly has become super quiet as she's worried sick. But what do you do? We just have to focus on the positives and know that worrying doesn't help. Not us, and especially not the baby.

Thanks guys!

 

[AP]

don't sweat the stuff you just don't know about Alex had a Grade IV brain bleed and they told us worst case scenarios. And so much so I didn't expect a hell of a lot from this little girl. I worried for a whole year about the what ifs. And here she is next to me trying to swipe the ipad

Like Marleysgirl says, celebrate the good stuff, everything feels fabulous when they achieve something. I have a full termer baby now and I can tell you as much as I love her and appreciate the things shes doing, its expected, im happy, it's textbook, -but with preemies, you cant expect too much, so when the fab things come from Alex I am overjoyed. So much pride.

 

[RainbowGift]

How are things going?