Reply
 
LinkBack Thread Tools Search this Thread
Old Nov 3rd, 2013, 21:36 PM   1
kellymassage
Trying to conceive (TTC)
Active BnB Member
 
Join Date: Dec 2012
Location: Navarre,FL
Posts: 276

Baby in NICU, having a hard time coping.


I had my daughter Friday evening, she was taken by C-section due to some issues seen in utero and the fact that I had severe polyhydramnios. She was born blue and not breathing. She was born at 35 weeks. She was taken to the NICU and intubated and was on 100% oxygen by the next morning she was down to a nasal cannula on only 6%. They ran several tests and so far what came back, came back normal. Then today they said they saw air in her stomach and she was not digesting her food and that they had to take her to surgery. Yesterday I held her for the first time and I was expecting everything to be better. Well never will I expect that again. After her surgery today, they said it went well but they were waiting on a part of her bowel to see if it was weak or something and that if it came back bad she may have to stay in there for months. This was crushing news. She also said that they were still waiting on results for all her tests to come back When I saw her tonight she was on a ventilator, from the anesthesia, and she looked miserable and in pain. I couldn't touch her and I just had to leave because I felt so helpless and I just couldn't take seeing her like that.

I am really hoping that someone who has been through this can shed some light on this for me. Does this ever get easier?? This has to be the hardest thing I have ever been through in my life. It kills me to see my baby like that and not be able to hold her to make her feel better. It kills me to think she might spend months in a plastic box without the loving touch of her mommy..

I really hope someone who has been through this can help shed some light..



 
Status: Offline
 
Old Nov 3rd, 2013, 22:34 PM   2
sunnylove
Mum (Mom)
Active BnB Member
 
 
Join Date: Aug 2012
Location: USA
Posts: 970
I have no experience with my preemie having surgeries, but my LO was born at 26 weeks and there were definitely hard times. I do have experience with the tummy swelling, even to a point where my son was spitting up blood (small amount) and needed a blood transfusion. The only advice I can give is to remember that it will end - probably sooner than you realize. I thought my baby's tummy issues would never end, and then he was fine in 2 weeks.

Know that your daughter is getting what she needs right now, even though it is hard for you to watch. And your daughter is at a great gestation too - only 2 weeks from being full-term. Imagine her struggles had she been born at 25 weeks instead of 35! I know that doesn't make your situation any easier to deal with, but just hang in there. It WILL end.



Status: Offline
 
Old Nov 3rd, 2013, 22:59 PM   3
vermeil
Other
Chat Happy BnB Member
 
 
Join Date: Oct 2009
Location: Montreal
Posts: 1,170
*gentle hug* Congratulations on the birth of your daughter. I think many here would agree this is the toughest thing they`ve ever been through.

I know it`s very hard to believe right now - but it *does* get better, a tiny little bit, every day. There will be setbacks (as you saw) and victories, sometimes in the same day. But your daughter will gently heal over time. Going to 6% oxygen overnight is very good!

That`s what these little guys need the most, just time to heal and grow. What helped me through the nicu is to keep telling myself 'it`s hard being separated but this is where my baby NEEDS to be right now, this is what he needs to heal.' At every setback (like being intubated for the xth time or the xth complication) I kept telling myself 'this is what he needs at this very moment to rest and get stronger'.

If you have any questions, please don`t hesitate to ask. Are you able to pump if you`re planning on breastfeeding? Do you live far from the hospital? Ask when you can do kangaroo care with your daughter. Ask LOTS of questions, take notes and remember to take care of yourself too



 
Status: Offline
 
Old Nov 4th, 2013, 03:35 AM   4
kellymassage
Trying to conceive (TTC)
Active BnB Member
 
Join Date: Dec 2012
Location: Navarre,FL
Posts: 276
Thanks guys, this really helps me feel better. I wish the hospital offered a support group for other NICU Mom's. You are right that going from 100% to 6% is huge! I guess in some ways I am being selfish worrying about my own bonding with her, and etc. This is what she needs right now and I am just thankful she is alive. Things could always be worse. It's just so hard to not be able to touch her and to see her suffer and not be able to do anything about it. I have been pumping and bringing down my milk, right now I am still in the hospital. Last night things seemed to really be turning around then her sudden surgery this morning was a huge setback for her. They had to put her on the vent all over again. I did get excited that I finally got a little milk in and since she can't eat they have been using it for her mouth care. That makes me feel a little better like even if I can't do a whole lot for her at least I am helping her. They also have been giving me her blankets to sleep with and bring back to her so she will have my scent. Ultimately the nurses have been really great and that's been very helpful to me and to my husband. He has a hard time with it also.

I live about an hour from the hospital and here they have a Ronald McDonald house where families with babies in the NICU can stay to be close, but I have two other kids at home, so sadly I won't be able to do that. I plan to drive up to see her twice a day and pump at home and maybe eventually when she is ready I can breast feed her up here. I want to so bad. And yes I am very thankful she made it to 35 weeks, I just hate that she is so sick. It was so unexpected ya know? My husband saw her when she was born and said she was blue and not breathing. He said that the NICU Doctor looked at him with shear terror in her eyes and he had to pretend everything was okay for my sake because they were still doing surgery on me and he was afraid I would jump off the table and run to her (which I would have) I never imagined having a sick baby! She was so healthy throughout my entire pregnancy and just took a turn for the worse at the last minute! She has a colostomy on her tummy because they said her bowel had perforated in utero and part of it was infected and they had to take it out. They also said it seemed like a part of it didn't have a nerves so they had to send it to get a sample and that if that was the case she would have to have more surgeries and be there for possibly months.. You know, you just think about having your baby and bringing them home and the thought of your baby being essentially growing up without you In that box its horrifying!

Anyways, I want to thank you ladies for listening to me and you have helped me to feel better. It feels better just to even get it off my chest because people who haven't actually been through it don't really get it.. I can't imagine having a 25 or 27 weaker! When I look around the NICU there are some truly tiny babies! It breaks my heart! The NICU is so overwhelming, you know?

Thanks again ladies!



 
Status: Offline
 
Old Nov 4th, 2013, 03:36 AM   5
kellymassage
Trying to conceive (TTC)
Active BnB Member
 
Join Date: Dec 2012
Location: Navarre,FL
Posts: 276
Also, how long were your babies in the NICU?



 
Status: Offline
 
Old Nov 4th, 2013, 06:19 AM   6
sunnylove
Mum (Mom)
Active BnB Member
 
 
Join Date: Aug 2012
Location: USA
Posts: 970
My 26 weeker was in the NICU for almost 15 weeks or 103 days. We were lucky he had virtually no issues except his prematurity and the main reason he was there so long was because of feeding issues. He started feeding by mouth at around 36 weeks and didn't get it down until about 5 weeks later. You will find feedings to be one of the most difficult parts of the whole NICU journey because when they can go home is completely dependent on how well they ate that day and it can be so emotionally draining. I think I cried more those last three weeks then I did when he was first admitted!!

Your little girl will be just fine, hang in there mama! I felt the same way about pumping - it felt like it was the only thing I could do for my little guy and I am so thankful he has only ever eaten my breastmilk since his birth!



Status: Offline
 
Old Nov 4th, 2013, 13:40 PM   7
kit10grl
Mum (Mom)
Chat Happy BnB Member
 
 
Join Date: Jul 2011
Location: Scotland
Posts: 1,709
My LO had to have open heart surgery at 8 days old. I totally get how horrible it is to not even be able to hold them, to see them on ventilators etc. My biggest comfort while we were in PICU with her was that while she was on a ventilator (almost 2 weeks) They kept her sedated and relatively unaware of what was going on. She wasn't in any pain.

I know you said you are worried about your bond with LO being affected. Anyone who has seen my baby with me could reassure you that despite being in hospital for months there is no way our bond was affected. She knows who I am and will often only settle for me. If I am in the room she follows me round with her eyes and twists to see me.

This part is hard but it will end eventually and you will be just as close as you ever could be. They kept DD in an open incubator after her surgeries and that allowed me to have a little more contact with her. They would let me place my hands on her forehead so she would know I was there. Also I would take kiddies story books with me as I often felt I couldn't think of anything to say to her especially with nurses around etc. The books gave me a script to follow so I could keep talking to her and she could hear my voice.

The only other advice I can give is don't be too hard on yourself, no one expects you to be at her bedside 24/7. u just had a baby and u have other kids who need u to be strong for them too. Take time to take care of yourself as well. You are no use to anyone if you aren't sleeping and eating well. Take regular breaks and don't give yourself a hard time about needing to do that.

wishing your LO a speedy recovery x

ETA: it might not be straightaway but let them know that as soon as possible you would like to be shown how to do your LO's cares. It might be the only time you can really get near baby for a while so even if they will only let you do tiny things it will help you feel like you are doing something. They let us start by wiping the sleep out of her eyes with cotton wool, then changing her nappy etc. But we had to ask to be shown how as sometimes its easier for them to just get it done, they forget that it feels really wrong to have a baby and not be able to do the basics like change a nappy.



 
Status: Offline
 
Old Nov 6th, 2013, 07:37 AM   8
4 boys
Mum (Mom)
Active BnB Member
 
 
Join Date: May 2013
Location: Uk
Posts: 278
Hi I'm sorry to hear about your little one .
I had a 26 weeker he is now 3 1/2 year old now and what a long hard road it was,so your not alone..
About a week after he was born he was very ill on incubated for 11weeks and had septicemia lots of infections everyday. After many X-rays& scans they noticed he had NEC and had emergency bowel surgery as it was blocked and damaged, they removed part of his intestines and stitched him up to recover. But after a few days he was just going down hill still not pooing after feeds etc then we noticed poo was leaking from his tummy scar where they'd cut him open again he was rushed to theatre as his bowel perforated again. This mainly happened as he was on high ventilation and also steroids for his lungs this was hard as we had no choice. The affects of steroids is bowel perforation but it was either steroids or he stay on a ventilator but we left the steroids for his body to recover and a few weeks later we risked the steroids and he managed to recover from both NEC bowel surgery and off the ventilator.
So he's had 2 bowel operations and the second time removed his appendix so hopefully he won't need more surgery his little tummy is a mess been cut open twice I so wanted to take that pain away from him.
After months of constant watery poo in nicu and discharge to home we did many test and finally got positive for lactose intolerance .
There is hope talk soon



Status: Offline
 
Old Nov 6th, 2013, 09:47 AM   9
vermeil
Other
Chat Happy BnB Member
 
 
Join Date: Oct 2009
Location: Montreal
Posts: 1,170
I have no qualms telling anyone that my son`s 100+ days of nicu did affect our bonding. It took a good six months of him being home until I felt fully bonded. He became the center of my world. But those first few weeks, I loved him and took care of him because obviously I had to. But I didn`t feel that intense bond right away.

Without going into the details his nicu stay was full of dramatic turns. The first time I saw him he was in cardio-pulmonary arrest - only flat lines on the monitor - with a team of 5 trying to reanimate him. It took 3 hours to finally stabilize him. This happened multiple times. He had septisemia, NEC, brain bleeds and all of the nasty complications preemies can have. To resume, he had all of the complications, without any long term effects! So we were lucky, in a way.

thinking of you and your daughter.



 
Status: Offline
 
Old Nov 6th, 2013, 15:20 PM   10
peachymomma
Pregnant (Expecting)
Active BnB Member
 
 
Join Date: Jul 2012
Location: USA
Posts: 140
It's called the NICU rollercoaster! There will be good days, and bad days. My daughter was a 29 week premie, with kidney disease, and hydrocephulas. Learn to do as much as you can for her while she is there. It helps the bonding process, and makes you feel useful.



Status: Offline
 
Reply



Bookmarks

Tags
baby , coping , hard , nicu , time

featured articles


Thread Tools Search this Thread
Search this Thread:

Advanced Search






SEO by vBSEO