Emotional Rollercoaster (24 WEEKS)

• By Benjamin0106
• Posted October 8, 2009 at 5:38 pm
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Hello,
Congrats on your son! My son Benjamin was born on 01/06/09 at 24 weeks and 1 day so I've been in your shoes. I'm not going to lie and say this will be easy but there is light at the end of the tunnel. Benjamin was in the hospital for 124 days but is now a thriving little baby who laughs, babbles, and loves to eat his toes. He weighs 17lbs, eats like a champion, and is the joy in our lives. I too was an emotional mess after his birth and I know it's difficult to see your baby needing so much help. His early birth has no relevancy as to what kind of mother you are.

My advice is trust in the doctors but ask questions, ask for explanations, ask if there are alternatives to what they are doing, ask about side affects (both short and long term), ask what each test means and what's behind the numbers. I know it sounds overwhelming but you are his ADVOCATE. He can not speak up so you have to. I'm a firm believer that doctors don't always know what's best for your child and by asking questions, you get them thinking. This applies to the nurses too. I think we all put too much trust in the medical society and don't stand up for what we feel or believe in certain situations. Don't be afraid to speak up, that's what I'm trying to say.

I'm not sure if you are up to it now but I dove into reading books on prematurity. I would only recommend this if you are emotionally ready to do so. I look back and wonder if it made the situaton worse for me but at the time I felt that knowledge was power and I was desparate to gain some control of the situation. It helped me ask more informed questions.

There are two more things that I think are so important; take care of yourself and spend as much time as you can with your son. Your touch, voice, and smell are all so important and comforting to him. Of course, you may not be able to be hands on now but talk to him and just let him know you are near. Ask the nurses for ways to bond with him until you are able to hold him. They will give you great advice.

The last thing is take care of yourself. Try to routinally do something that relieves stress. Reach out to family and friends you know can support you through this. Exercise, meditate, do yoga....anything to give you a mental break.

I wish I could give you a hug because I truly understand what you are going through. Please feel free to email me at any time with questions or concerns. I will keep your son and your family in my prayers.

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• By Benjamin0106
• Posted October 8, 2009 at 5:46 pm
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PS. Benjamin went through many challenges that a micro preemie is up against during the first few months. I really didn't get into that piece in my last post. You may or may not have to deal with these things so I'm not going to list them out. Again, email me with any questions, anytime. Lilakw25@hotmail.com.

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• By elizabean
• Posted October 8, 2009 at 6:30 pm
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I understand how you feel! My son was born at 24 wks 4 days and is now a healthy and amazing 3 1/2 years old! He was in the NICU 102 days, he bounced from vent to Cpap and back to vent I can't recall how many times. Then it was bouncing back and forth from Cpap to nasual canula. It's not a fun ride at all, but luckily you found this wonderful site for support. Please ask any questions!

God Bless this Little Child...
God bless the little child behind the plastic wall
For all he knows is the ringing of the bells and
the blurred images around him. He has been taken
from my womb without warning and I long to hold him
in my arms.

Lord, I ask in your name that my child be healed.
I am willing to accept your decision no matter what
it will be. I am willing to take on the responsibilities
for caring for this child. I am willing to give this
child love and understanding no matter the cost.

Please Lord help me to accept reality and what has
happened without explanation or warning. Help me
face the fact that this is not my fault and that
I was given a special task to complete here on Earth.

God give my child the strength to make it through another second, minute, hour and day as each moment is a blessing and a triumph from heaven.

God, may you give the strength and compassion
to the caregivers and nurses that take care of my child
May you keep my child protected and free from all injury and pain.

Please take away the guilt and burden from my heart dear Lord. It is heavy and I feel it is all my fault.
Take it away dear Lord. Sweet Jesus allow me the strength and understanding I need to communicate with the Doctors and Nurses.

As you see dear Lord, I am at your mercy for the life of
my child. Please leave him here on Earth and know that I will provide all the love and understanding that
this child needs. I accept the challenge and will be
your humble servant dear Lord.

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• By Benjamin0106
• Posted October 8, 2009 at 6:33 pm
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Elizabean--That is a beautiful poem. I wish I had it when we were in the NICU.

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• By 24WeekMiracle
• Posted October 8, 2009 at 6:59 pm
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TreMommy,

Hey, man first off congrats! What a miracle baby huh? Secondly, the NICU is nothing short of a rollercoaster, it is the perfect term for the ride. Right now it sounds like your baby may start the preemie shuffle which means your baby will have great days, bad days, and totally awesome days. Breathing is hard for these little ones and it make take him/her some time to get it, it's one of the heardest parts of the NICU ride. It will be a ride until you can go home, and then after that it is still allot of work. But hey, we chose to recuss our little ones, and knew that life would be differant and we all prepared ourselves to do all that we could to save our micro babies. But whats important, it truly is worth it......

I had my CJ @ 24w2d. She was 1 pound 3 oz. She was the only survivor of a triplet pregnancy. She was in the NICU much longer than she should have been, almost 5 months due to feeding issues which after her release was dtermined to be caused by severe acid relfux. Aside from acid reflux which equates o feeding issues and not the best weight gain, she is a rock star.....Seriously, what a joy she is and what an amazing miracle ...to have gone through so much and fought harder than anyone I know to be here.

Benjamin gave you excellent advice, the only thing I will add is push to do as much kangaroo or skin to skin care as you can. Also, be there as OFTEN as you can, its makes a differance. Really know all there is to know so you can be the most consistent person in your childs life who knows the whole picture. You MUST advocate for your child.

My daughter had a rocky road at first with her lungs and infections, but she was breathing on her own at 36 weeks. She was considered the "24 week anomalie", because she really had allot of things working against her early on, more so than the avg. 24 weeker, and no one thought she would go home off oxygen, in fact most thought she wasnt worth saving when she was still in my womb.

I also believe in the power of positive thinking, and believing in your child that they will not only make it, but thrive. I was relentless in my daughters care, because I knew she was all that and more. :) But I must say, I have been through some rough things in life, but the NICU ride, for me persoanlly made me feel weak and frail towards the end...I needed it to be over when it was......at least the nicu ride part. Some people handle it better thn others, and how ever hard t may be for you, make it easier on yourself by reaching out.

Please find some mothers to talk with while there, and defintely reach out on this board when you need help...My daughter is doing well thanks to some woman on this forum.......I found invaulable information that empowered and enabled me to undertsand certain things regading my daughters condition, challenges and so much more.

Feel free to PM me anytime,,,,,,

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• By katek
• Posted October 9, 2009 at 3:08 am
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Wow, that's really amazing that a child born so early went for three days breathing w/o assistance. I think that most micropreemies need some kind of help in that department.

My impression is that it is fairly common for babies to have a couple good days or even a week after birth but then struggle a bit. I think it was around 1-2 weeks when our son started having apnea and brady spells. Those lasted awhile.

My son retained fluids big time that first week. He was born 570 grams. By the end of the week he was in the high 800s BUT it was fluid retention (edema). He eventually started peeing and went back down to 610 grams. He was on diuretics for something like 2 months. Obviously not ideal but there wasn't much choice in the matter.

Our son will be 2.5 years old at the end of this month. On his birthday, I wrote a thread listing some of the things that he went through and where he was at 2. See: https://www.inspire.com/groups/preemie/discussion/henry-turns-2-years-old/? msg_activity=disc_updated

When he turned 2 (adjusted), I posted this thread with pictures: http://www.inspire.com/groups/preemie/discussion/henry-turns-2-years-old-ad justed/


RE: "I cry 4-5 times a day. I feel so bad for my baby. What kind of mother am i?"

Honestly, if you didn't cry, it would probably mean that you hadn't begun processing your feelings (or worse yet didn't have them). What kind of mother are you? One who is going through a not-so-great experience with your child. Having a child in the NICU is NOT easy. On the one hand, you are happy that you have a child. On the other hand, this isn't the way it was supposed to be. Some people say that you have to grieve for the experience that you didn't get to have. And watching one's child struggle is torture. I can't tell you how many times I just wished it was me in the hospital and not my son. I would have gladly traded my health for his.


RE: "I can't help him."

Actually, you can do quite a bit, although it probably won't seem like it right now. There's a lot of great advice already posted.

First, it is IMPORTANT that you take care of yourself. That means you need to sleep and eat. And if you could get some exercise into your schedule, that would be ideal. Exercise has been empirically shown to minimize the symptoms of PPD, which unfortunately is A LOT more prevalent in NICU moms than full-term baby moms. It is important for baby's sake that you are in the best frame of mind possible (not than anyone expects a preemie mom to become Mary Poppins or anything).

Second, even hearing your voice softly matters to baby. Being a neonate, he won't react like full-term babies do (that comes more toward the due date for neonates), but he needs his mom there...even if you can't hold him yet.

Third, there will come a time when you'll be given an opportunity to do "kangaroo care" (also called skin-to-skin). In my son's NICU, we did that when he was about 3-4 weeks old, I think. A lot of NICUs like to wait until baby is off the vent. Our son tended to sleep better when he was on my chest or my husband's chest. I would kangaroo with him almost every day and my husband would do it at night. We believed that it helped a lot.

Wishing you and your son the very best.

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• By emmysmommy
• Posted October 9, 2009 at 8:49 am
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My daughter was born on June 18 of this year at 29 weeks and we finally got her home after 89 days in the hospital on September 15. I remember very well feeling like I had done something to cause her premature birth as I looked at her with all the tubes and machines. I felt so guilty. As a mother, that's your natural instinct to want to protect your child. We've all been there! Just remember that whatever happens with your precious baby, you have done NOTHING wrong and the simple fact that you're so concerned about your baby tells me that you're a wonderful mother! One of the hardest things that I went through was feeling like no one could relate to how I was feeling or what I was going through. I felt so alone. But Inspire is such a wonderful resource for support and inspiration. Just keep reaching out to all of us and I PROMISE you, you will soon have your baby home and then you'll be the one relaying your story to someone else, telling them that all will be okay! Good luck and GOD BLESS!!!

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• By AnneV
• Posted October 9, 2009 at 8:52 am
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My grandson was born at 25 weeks. He was intubated right from the start and was on the vent for many, many weeks. His condition could change rapidly from day to day and my daughter and I both shed a lot of tears. The weeks in the NICU seemed never ending. But a week or so before his due date, he was able to go home. He is now ten weeks adjusted, weighs over 13 pounds, is feeding well, smiling, and we have every hope that he will continue to thrive. My daughter could not bring herself to read anything about micropreemies because information about what could happen was too scary for her. She preferred to get her information from the doctors and nurses. I did read as much as I could and it was helpful for me. And the people here are wonderful. Whenever I turned to them on good days and bad, I always received positive responses.

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• By Johnsonx2
• Posted October 9, 2009 at 9:34 am
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I am going through the exact same thing as we speak. My daughter was born at 25 weeks on 9/22/09. She too was doing well in the beginning - so well that after a few days they moved her to the CPAP vent. Then this last Sunday she took a turn for the worse and went back on the oscillating vent at 100% oxygen. Her chest xrays were filled w/ fluid. The MD used the term "death" with this condition. They changed her antibiotics and her position (lying on her tummy now) and yesterday her chest xray was the best it has ever been. They've decreased her meds and now we are on the upslope.

Our MD told us that this will be one of many emotional roller coaster rides that we will be going through. I can definately say I feel your pain. Trust your medical team, ask questions, write down the drugs, procedures, etc. and do your own online research to educate yourself.

The thought of giving up has crossed my mind too. But stay strong for your son and your family. Stay positive and wait for the ride to start making the climb - it will happen! Hang in there!

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• By Owen24weeks
• Posted October 9, 2009 at 10:11 am
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My son was born at 24 weeks, 5 days on January 22, 2005. He weighed l lb 12 oz and was 12 in long. He had many complications, was hospitalized for 111 days, on the vent for around 2 months, and had a Grade II IVH. He left the hospital 5 days after his original due date, without oxygen or monitors and was only on medication for reflux. He is now 4 years old and, aside for being a bit on the skinny side, you would never know how sick he was when he came into this world.

Last spring, my little guy played on a soccer team with a little girl that had been in the NICU with him. It brought tears to my eyes every game to remember the time that those two were in the NICU together, struggling for life - he on a vent and she on a trach- and four short years later, they were running down a soccer field together. It was amazing.

Just remember, it's okay to cry and it's okay to be angry. In fact, it's perfectly normal. The preemie journey is a very difficult one and most people just don't understand what you are going through. Allow yourself to grieve for the pregnancy that ended way too early and the fact that your entire world has been turned upside down.

Take care and don't lose hope.

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• By LovemyBeanie
• Posted October 9, 2009 at 2:45 pm
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I know it seems like this is the worst part of your life, and u feel very guilty. my daughter was born three months early and was also breathing on her own. at about three days she needed some help and i felt like the small silver cloud we had was gone. but all u can do is remember this to shall pass. as soon as i changed my attitude she completley changed. they can tell if u are afraid. be positive. the fact that he was even breathing on his own at 24 weeks is amazing! that is huge! lookaround u the next time u are in the nicu, look at all the other 24 weekers who have always and wil always be on a breathing machine. look at the ones that need help every day, and look at the ones that will never make it. your boy is obviuously very strong, fluid in preemie lungs is very common and none of this is your fault. be positive, talk to him and tell him how proud u are, and he deserves to be tired. after he rests he can try again. but seriously, 24 weeks and breathing on his own? that is amazing.

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• By momof24weeker
• Posted October 9, 2009 at 3:15 pm
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TreMommy,

I totally understand how you feel and when my daughter was in the NICU, I was desperate to find positive stories too.

My daughter was born at 24w 5d. She was 1lb 6oz and spent 105 days in the NICU.

Here is the information for my CarePage. I wrote a post for each week she was in the NICU. It describes our journey, all the ups and downs.

www.carepages.com
CarePage name: charlottesweb

Today my daughter is a happy, healthy, thriving three year old! She is truly a blessing and a miracle. It is a long, long road and you and your little boy are in my thoughts and prayers.

Melissa
http://pregnancyafterpreemie.blogspot.com

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• By lijn
• Posted October 10, 2009 at 2:52 pm
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Congratulations mommy!

Our son was born at 24 3/7 on October 18th 2008. He is almost a year old and despite some issues (he has a g-tube in his tummy through which he eats) he is doing amazingly well. He was intubated for almost 5 weeks and received breathing support until week 38. He just had his first cold and recovered from it without any problem, in fact, he handled the cold better than I handled mine. He is almost crawling, usually very happy and he loves to discover toys by shaking, turning them around in his hands, chewing and banging them together. He looks just like any other baby (but then of course extremely handsome to us ;-)

The NICU days, which lasted 4 months, were scary and intense with lots of ups and downs. However, he overcame every single one of them.

24 weeks is very early, but the fact that your baby was able to breath alone for 3 days is absolutely amazing. It is also normal that babies do best the first 5-7 days after birth. At our hospital they called this the honeymoon period. Be prepared for a rough ride but try to maintain your hope. It truly helps your baby!

Much love to you and your family!

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• By babygirls24n2
• Posted November 4, 2009 at 12:28 am
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Oh, the rollercoaster that is the NICU!! Hang in there! Our daughter has been there for 12 weeks now (born 24w 2d), and it is a LOT of ups and downs. They said that preemies have a honeymoon period - some for a couple of days, ours was for her first couple of weeks - where they do great and then suddenly it catches up with them and they need help.
You will make it through all of this! Just keep breathing through the dips and enjoy every 'good' day. Be there as much as you can, doing 'kangaroo care' or skin-to-skin as often as possible. Studies have shown the amazing benefits of having someone there loving on them daily - be it holding when possible or just talking to them. Bring a book and read it aloud.
Ironically, they warned us at the very beginning that we would go through some hurdles, but would end up thinking the worst part was the end when we were just needing her to eat on her own. You don't believe it at the time, the hurdles seem horrible - but now we are finally at the point of trying to get her to bottle so she can come home and its way harder! She's so close :)
Your day will come - enjoy every moment that you have and take a lot of pictures :)

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