frustration sets in

jacobsmommy
1 Recommendation

I had a sweet baby boy on March 13 born at 25 weeks.His name is Jacob and he is so amazing and strong. I was just wondering how long some of you had to stay in the nicu. Jacob has had 4 surgeries for ROP and isolated bowel perfs. We have been on the vent since he was born with pretty low settings for the last month. He has tried bubble cpap twice and could only maintain it for about 18 hours. He would get ahead a little and then a surgery would knock him back down. We started feeds again yesterday and that is going to go pretty slow once we get those running well we will try to start weaning off the vent. His due date was june 22 obviously he wont be going home by then. The nurses have mentioned to me about a traech but we have'nt tried any thing else yet he is pretty low on the settings. Has anyone had to deal with a traech do they grow out of it, would he be able to talk or make noise. How long did some of u spend in the nicu. We have been here for 3 months and I am so ready to bring him home. I feel so selfish.

16 replies

Birdie8fish

My last child spent almost 7wks in the NICU. Nothing compared to the time you've spent w/ your lil man. I can only imagine how difficult it must be for you. I hope he continues to make strides, eventhough they seem like there are far inbetween, there is progress.
No need to feel like you're being selfish...all of us at one time or more wished to have our lil ones home instead of the hospital. It just shows that you are a very loving parent. How is your parent support group in the hospital? If you arent taking advantage of it I would. It really helped me while my children were in the NICU. I hope that he continues to make progress and that he'll be able to come home w/ you shortly. If you ever need to talk...Im here to listen!!
Mel

tanya29

My son was in the NICU for 110 days then we went to a room on the seventh floor under the Gastro doctor's case- for a month before they let him come home, we were home for a week then had to go back because he got an infection in his CVL, spent 1 week there then came home again for another week and had to go back again for another week - again because of an infection in his CVL - this time we had him home for 2 weeks!! then we had to go back for his reconnection- take down of illestomy on May 14 - which went well but then had several complications and he ended up in the PICU for 3 weeks and now we are again on the seventh floor still recovering from the complications - do not know when he is coming home, we are at CHKD, Children's Hospital of the King's Daughter in VA.
I know exactly how you feel it is very hard to have our lil ones in the hospital - but not to worry - when you do have him home it is like nothing else in the world. I wish you the best of health for your son and patience and perserverance for you. Our lil ones are wonderfully blessed as are we for having them.
Take care,
Tanya - Kevin's mom

Elisa72688

i too delivered my son on march 20th but he was a 24 weeker...hes been in the hospital 88 days 13 weeks on weds. its been a long and hard road but hes come along...hes getting stronger day by day ...he was on the vent from march 20 till may 24th...than went on cpap for less than a week..now hes on a blender and we are trying to get him off that too and just be on str8 oxygen...hes had infections on and off in his belly..hes been on antibiotics must of his life....still his..hes just now for the past 2 weeks been stable with his feedings hes up to 30 cc every 3 hrs and pooping at almost every diaper change...he has the epesiodes where the desatts while feedings...but its getting better..sine hes been put on acid reflex meds...ive been very furtunate he hasent had any surgerys...hes got an inguinal hernia which will need repair down the road if it dosent resolve on its own...hes getting tested his eyes every week...but im crossing my fingers hes going to be ok...they say hes got phase 2 orders which means that once they had a spot on phase 2 he will be moved...but in the mean time they want me to take CPR classes and discharge classes...but when i ask when i will be able to take him home they cant answer me...he will be 37 weeks on wed. and they still havent tried bottle feeding him his resp. is still kind on the high side and they are scared he might asprired (sorry sp?) so thas another thing we are waiting on....my due date was july 10th but at this rate i dont think he will be coming home on that day...but me and hubby are both keeping our fingers crossed!! so dont give up the hard part is almost over...its been 3 months whats another month going to do...compare to what we have been trough already!!

Good luck with you baby...hope so hear good news soon! hang in there!

Feistylioness78

My boys were born 11/4/07 and one is still in the NICU. he has a traech. He is able to talk around it. He also had his PDA closed surgically. Had a double hernia repair, needs a G tube, may need open heart surgery for an ASD. He also has to have to surgery for Hypospadias. He cannot come home until he has 16 hrs of nursing care and there is a shortage. He is also withdrawing from fentynol which he was on because back to back surgeries. He is on a rate of 5 on the vent. He also has CLD and pulmonary hypertension and that is just the issues with one of my boys. The came home with issues too around his due date.

scottj

My son, Nate, was born April 8, 2005 at 25 weeks and he was in the NICU for 100 days. It's a long road no matter what, just try to take it day by day. Nate is now 3 and those days are a distant memory...someday they will be for you too. God bless.

Owen24weeks

My son, a 24 weeker, spent 111 days in the NICU. He was released 5 days after his original due date. He was on the vent for 7 weeks, was septic, and had PDA surgery, along with a host of other complications too numerous to add.

He is now 3 and wonderful.

Keep your chin up and focus on your baby and yourself.

drakesmom

My son was born at 24 weeks almost a year ago. He was in the hospital for 130 days. He also didnt get to come home his due date. He was on the ventilator for almost 3 months. He also has several trials of cpap never lasting longer than 24 hrs. We tried streoids to help him out but they had side effects and in case caused his BP to go too high so he just had to out grow it on his own. I remember that on one occassion one of his primaries mentioned a trach if my son didnt improve but fortunately he did. He came home on a monitor and O2 and still has them both. We have been trying to wean him off the O2 for a couple months now but I know he will come off when he is ready.

I do know of a mom of triplets and one of her babies came home with a trach and home ventilator. He got 22 hr a day nursing. If I remember correctly she said he should outgrow the trach and vent by 2.

masons_mom

My son was born at 27 wks 5 days. He didn't have had as many complications as some other babies but was still in the NICU 87 days. He had PDA surgery at 3 wks and bilateral hernia repair the week before coming home. He came home on oxygen and stayed on it for a little over 2 months. He is now 17 mos old and doing fabulously. Have faith and try to be patient. We all know how hard that is, but it really is for the best.

c-m

my baby boy liam a 27 weeker was in the nicu for 4 months. most days i thought he would never come home. i also had a 4 year old at home which made it worse. my liam is now 18 months old and it seems like years ago in the nicu. i remember 4 days before he came home i just held him and cried thinking i would never bring him home and then a couple of days later the doctor said he would be coming home. just stay strong and know a year from now you will have forgotten the nicu journey. good luck to your family. the nicu roller coaster is the hardest thing you will ever face.

momof4frompa

Colyn was 24wks but as a real quick answer because I am tired 122 days and I had to beg for him to come home in reality he should have stayed and the other tests should have been done because now at a yr old we have so many delays due to these test's not being done sooner. Colyn is more level like a 4 month old and a new born in many ways as well.
I know its frustrating and ou want to be able to have your baby to your self w/o drs or nurses or moniters.
Trust me the first few weeks or so its not easy either because you are so use to the level of insuraty that a licesened dr or nurse is by his/her side.
Good luck to you and please keep us posted.

momof4frompa

Colyn was 24wks but as a real quick answer because I am tired 122 days and I had to beg for him to come home in reality he should have stayed and the other tests should have been done because now at a yr old we have so many delays due to these test's not being done sooner. Colyn is more level like a 4 month old and a new born in many ways as well.
I know its frustrating and ou want to be able to have your baby to your self w/o drs or nurses or moniters.
Trust me the first few weeks or so its not easy either because you are so use to the level of insuraty that a licesened dr or nurse is by his/her side.
Good luck to you and please keep us posted.

happybunny202

We've been there!!!

My son was a "relatively healthy" 28-weeker who kept having setbacks... 85 days in the NICU. I started getting extremely jealous of younger preemies who went home before we did.

I kept trying to put it in perspective --I think they were extra careful, because Joshua's twin brother passed away-- but I think it's human to lose patience.

All I can say is, let the feelings of frustration come; then take a deep breath, remind yourself how far he's come and how you'd rather take him home to stay then have him "bounce back" to the hospital.

--and keep "talking" here, because we've all been through it!

Wishing you blessings of peace,
Kyrsten

(Joshua is now 19 months old, doing beautifully, but I have never stopped appreciating having him home!!)

dannysmom

My son Danny was born April 11, 2008 at 31 weeks, and spend 35 days in the NICU but it felt like months to me. When I was discharged from the hospital without my baby, I felt so empty and I felt that way until my baby came home. At the time I wanted him to come home so badly that when the doctors decided to send him home at 3 lbs 15 oz I didn't question their decision. I thought since I spend so much time with him in the NICU and I was getting a handle on everything and with lot's of love, things would be ok. I know now that it's hard once they come home. In the NICU I asked a lot of questions about everything and I thought I was covered. Now, I wish I had the help of the nurses to tell me how to do everything. The NICU is the most valuable resource for you now. Take advantage as much as you can. Get lots of rest now because once your baby is home you need a lot of energy. I know it's hard without your baby, but he will come home so hang in there.

ezioevale77

Aurora, 24 weekr spent 126 days in NICU, and she came at home with out O2. ten days after the due date.

ezioevale77

Aurora, 24 weekr spent 126 days in NICU, and she came at home with out O2. ten days after the due date.

momofpreemie

Continuing to keep a Positive outlook is one of the best things you and your husband can do for your baby. Close your eyes and imagine all of you at home, Jacob in your arms sleeping so soundly. your husband having the two of you in a warm embrace. And if you have other children, imagine them there admiring how beautiful their little brother looks.

I recently learned something called "The Law of Attraction." I wish someone shared this with us while Mia was in the NICU. I recommend it to everyone, especially parents in the NICU. You can rent the DVD called "THE SECRET" to know exactly what I'm talking about.

Life in the NICU is so difficult for both parents and babies. Being separated can be quite an emotional experience, but if you only focus on the positive and imagine how wonderful Jacob's homecoming willl be, soon it will happen just as you imagined.

Little steps, are still steps in the right direction. Through this experience you'll learn the True meaning of Patience, Understanding and Unconditional Love.

We spent over 3 months in the NICU, past Mia's term date. She was born at 28wks, on 3/07. Mia has a tracheostomy tube. Children can grow out of it but each case is different. When Jacob's lungs become stronger, you can ask your pulmonologist for a Passy Muir (speaking valve), so you're able to hear Jacob make sounds.

I hope this has helped you in some way. I'm grateful to have been able to share this with you.

Please don't hesitate to PM me if you have more questions about tracheostomys....Roxanne

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