Don't know what to think

This section is for discussions with other women who have probably been through the same signs/symptoms that you may be experiencing. Please note, we cannot offer medical advice and encourage members to discuss their concerns with their doctors. New members, come on in and introduce yourself!
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Re : Don't know what to think

Postby mom2boys » Mon Dec 16, 638926 5:59 am

Want to reiterate what everyone else has said. My thoughts are with you and the family.

I am so happy to hear you are taking pictures! When my son was born premature I wouldn't take any pictures and 13 years later I so regret it. I couldn't face taking pictures when he was so sick...I kept thinking pictures are for happy times. Now I realize, that was a part of who he is/ take them and stay with him!

I am living with PreEclampsia now, however, I did have a premature son, with no PreE. He was a very very sick boy, not born as early as your son, but he definitely tetered on the edge. I was warned everyday before I went into the NICU of what to expect. He was on that darn oscillator too, which was so hard to see at first.

Don't think thoughts that he might not make it, don't even allow yourself to go there. ONLY think he will make it! He is beating the odds everyday. Have hope he will continue to do so.

Luke sounds like a fighter. From what you write he's been relatively stable after 10 days! That in itself is a beautiful sign.

Again I am thinking of you, your wife and baby Luke. Sending you all the strength and positivity I have!

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Re : Don't know what to think

Postby alexa5 » Sun Dec 15, 638926 6:34 pm

As you can see, a lot of us here can relate to your concerns! Admittedly my situation was a bit easier because my son was born at 34 weeks, and was almost 4 lbs, but he still needed a CPAP at first, then needed bile lights for a little while, and then it was just about feeding and growing. He spent 3 weeks in the NICU, and went home without any further needs. He is 15 mos now, and is over 50% for weight, and 75 % for height, so they can really catch up in size! It is kind of a roller coaster at times, but Luke is in the right place being watched over by skilled people, and that is the great thing!

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Re : Don't know what to think

Postby atvlady » Sun Dec 15, 638926 1:37 am

I gave birth to a living baby girl at 20 weeks. She lived an hour and 10 minutes. The only thing I can say so you can keep yourself strong is to enjoy the time you have with him. Take pictures and build a memory. I have heard of babies surving at 23/24 weeks and no consequences. Keep strong!

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Re : Don't know what to think

Postby lukesdaddy » Thu Dec 05, 638926 7:37 pm

Thank you everyone for the supportive comments. My wife and I visited Luke today and he is doing well. Some dips with his heart rate, but most of the time he is able to correct that himself. He maybe going from the oscillator to a ventillator tomorrow morning, hopefully. He is also having his Dopamine injections decreased since the hydrocortisone is helping with his blood pressure, and the thing that made my wife burst into tears is that he was able to open both eyes, which means a ton more photos for us to take. Thank you again for the support. The comments and stories really do help to get an understanding from different perspectives about this situation.

Thank you,

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Re : Don't know what to think

Postby kara » Thu Dec 05, 638926 4:53 pm

My daughter was born a pound heavier, but we went through the same things. Her PDA did not close on it's own, and she had a bleed in her eye. Other than knowing that you have good nurses who care about your baby, and good medical care, the only other thing you can do is be REALLY involved and ask LOTS of questions. Sometimes tears and emotions get in the way, but you should ask the meaning of everything a doctor says that isn't clear or you don't understand. Ask "How does x compare to what you'd expect of him at this gestation?" Ask the "when, where, why, and how" questions, even if you think you understand. Knowledge really made me feel more connected and involved. I still remember all the nicu milestones. Hang in there, and please do post back on his progress.

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Re : Don't know what to think

Postby hypergirl_trlee » Thu Dec 05, 638926 11:00 am

i cannot say enough about kangaroo care when they allow you to do it. being that close to the parents helps with their breathing and everything else. The NICU said that had a major part in why they thought my daughter did so well with her breathing. it really relaxes them! I hope everything goes well. I have heard of people having 24 weekers do well.. Yours was almost 25 weeks. Just take it day by day! Let us know how you are doing and how your little one is doing.

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Re : Don't know what to think

Postby pennyg » Thu Dec 05, 638926 10:20 am

Sending positive thoughts and prayers to your strong son Luke!

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Re : Don't know what to think

Postby bernadic » Thu Dec 05, 638926 10:12 am

Patrick-Your story is VERY similar to mine. I delivered my son Lucas AKA Luke at 27 6/7 weighing 1 lb 12 oz and 12 inches long due to severe PE via C-section. As of today, he is a healthy 3 yrs old sitting next to me begging for M&M's! You have to stay strong! Be positive that all will turn out well! Trust me I know it is hard. We were in the NICU for over 3 months. Does your NICU have a support group? Ours did and we now have 5 close friends that we met in that group. We all went through the same thing and all of the kids are great. Our Luke was on the vent, then oscillator, then vent, then CPAP, then canuala and then nothing! He came home with NOTHING-no monitors or machines. He did have to have 2 surgeries-ROP in both eyes and double hernia. They did that when he was 2.5 months old in the NICU once he was stronger. You have to trust the doctors and feel free to call the NICU any time. We called at least every 3 hours. Try to be there at rounds and ask questions. Everyday holds a different story. You will have ups and downs-we remember them well. Once your Luke starts eating, you may or may not have a problem with it. We did and that caused a lot more stress and upset. However, all turned out well in the end. Feel free to email me if you have any questions as a parent that I can answer since I lived through this. You and your wife are in my prayers!

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Re : Don't know what to think

Postby sam10 » Thu Dec 05, 638926 8:50 am

HI Patrick,

I so very well understand your fears and worries. My little Henry was born 25.6 weeks and lived for a week. There is no indicator if or what could cause trouble or not. It is a very hard time.
First of all, it is great news that your son's brain scans are coming back negative and he hasn't had any hemorrhaging. this is really major! Also, it is really very good news that his PDA closed on it's own, otherwise he would have needed an operation.
Even though he is on an oscillator right now, he might be able to be weaned off soon.
It is a really tough time, and every good news you can get is a step forward.I will be thinking of your little son, your wife and you, and if you have any questions, please don't hesitate to ask.

Good luck and keep us posted.

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Re : Don't know what to think

Postby darateacher » Thu Dec 05, 638926 2:23 am

I was an anxious mess when my twins were born and spent 5 and 1/2 weeks in the NICU. This is AFTER I had lost my son Aaron, born at 26 weeks, and in the NICU for 3 hours before we lost him to my pre-eclampsia.

One thing I learned is to take it all day by day. It'll become more doable that way...not easier...but, doable. You'll start to learn when the weigh-ins are, when the doc comes to visit, etc...

How's your wife and Luke today?

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