Baby in NICU, having a hard time coping.

[kellymassage]

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..

 

[sunnylove]

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.

 

[vermeil]

*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

 

[kellymassage]

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!

 

[kellymassage]

Also, how long were your babies in the NICU?

 

[sunnylove]

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!

 

[kit10grl]

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.

 

[4 boys]

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

 

[vermeil]

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.

 

[peachymomma]

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.

 

[holdontohope]

My daughter was born at 35 weeks also. I had a difficult pregnancy and my water broke at 35 weeks, there was no more stopping it. She was born 36 hours later, blue and not breathing also. With help, she did start breathing on her own but would just get tired and stop. She was transferred to another hospital about an hour away and when I released a couple hours later I went immediately to see her. She was sedated and placed on a ventilator for a few days because her lungs were so immature. She ended up making a quick recovery and came home 2 weeks later. But she didn't need any surgeries, the only issue she had was her lungs.

It doesn't get easier in the NICU for me, it got worse. I was numb at first... Then when the numbness wore off, I was so emotional. I stayed with my daughter 12 hours a day and cried 80% of the time. It was heartbreaking for me and I didn't handle things well. But you just kind of get through it.... I still made it there everyday no matter how hard it was to see her like that. Then when I brought her home I was still emotional and started greaving the birth experience I so desperately wanted, but didn't get a chance to have.

message me if you need to talk and good luck on this long but very worth it journey!!!

 

[kellymassage]

I want to thank everyone. I have my good days and my bad. I have been in bad pain from my csection. I had never had a csection before and had no idea how difficult it was healing from it! Violet is doing much better, so I have no complaints! She is a trouper. I usually only spend about 4 hours a day up there because of our two other children. I feel bad but that's honestly all I can manage right now. She came completely off her oxygen a few days ago and has been doing really well. It was very hard the first day when I posted this because she was on a vent and had a billion tubes and I couldn't touch her, she was in pain and all I could do is look at her and cry. She is doing so much better now. They are just supporting her nutritionally right now. She is on TPN she has a colostomy. They should start feedings today or tomorrow, then go from there. I pray it goes well and she does well on the feedings. I am able to hold her now. I could sit for hours and hold her. She seems much more content now. I am sad that it happened this way. I wasn't expecting this at all, but who does right? You go through expecting a normal healthy pregnancy of course but I am just thankful she is doing well and thriving. I am so grateful. Your stories give me so much hope and they are so hard but it shows me how strong we women and mothers are. Its incredible the strength we have. Thank you for sharing your stories with me. I will keep updating here. I can't wait to have her home, but more than anything I just want her to be healthy and it looks like we are on the right track

 

[sunnylove]

That's great to hear Kelly! I had my good days and bad days too; it was completely dependent on how he was doing that day in NICU! Also, I love the name you picked for your little girl. That's the name we were going to use if DS was a girl. Hang in there, it is so great to hear Violet is doing much better! Remember, it will all end soon!

 

[4 boys]

I'm so glad your baby is getting better they will always be good and bad days and you never know what to expect at each visit ..
I hope you recover from you c- section just try take it easy your little one is well looked after and she going to need a strong healthy mummy when she's ready to come home.. It's difficult with other children I totally understand but days will get better even with them it will be good & bad days as they go through the changes and pick up the vibes..

I have had 4 premature babies and I've been through so much but the memories will never go from the nicu journey but slowly you and your family will move on.
Good luck with everything shel be home soon and keep us posted how you& little one are doing

Sunny love ..I followed your story on incompetent cervix stitch etc.
So glad your doing well also where is all the old mums probably busy with little ones you all had a long journey.
I'm hoping to post my story I just got my hands full at the moment..

 

[kellymassage]

Thanks ladies! They are going to start feeding Violet today. I am praying that it goes well. They will eventually have to do another surgery to re-connect her bowels. She has an ostomy right now. I am not looking forward to that, but just taking it one day at a time. She looks really good! I am starting to feel human again after my C-section too! I appreciate the replies! 4 preemies! Wow, that must have been very difficult I hope they are all healthy and thriving now??

 

[jandksmommy]

I've been away from the forum so just read this thread and wanted to say congratulations! I am so glad things are looking brighter for you and Violet.

 

[4 boys]

Hi how are you and your baby hope things are going ok