Preemie Hospitalizations

Keri - posted on 01/20/2009 ( 12 moms have responded )

51

10

4

Just courious if anyone else is in the same shoes that we are. Our daughter was born at 35 3/7 weeks old. She only spent 8 days in NICU. At about 2 weeks old, she was admitted into Cardinal Glennon Children's Hospital for about 1 week for not failure to thrive. She was then admited again at 7 1/2 weeks, 17 weeks, and finally again at 21 weeks. That's 5 times in the first 5 months of her life!! In the last stay we found out that she has Macrocephela, a slight case of Hyrocephalis, and her GERD has caused more damage than expected to her esphogus. The doctors had a social worker come and speak to us and she let us know that it isn't uncommon for preemies to be hospitalized several times within the 1st year of their life. Sometimes you wonder how much more can I take of this, but have to keep going. Has any one else gone through this?

MOST HELPFUL POSTS

Joyce - posted on 01/26/2009

9

9

1

Hi, my son was born at 28 weeks and his birth weight was 2 pounds and 12 ounces. He stayed in the hospital for 9 and a half months. During that time, he stayed off and on oxygen, and even had to come home with it. Like other preemies, he also caught a few different types of infections, back to back and I was even told at one point that he wasn't going to make it. He has had many surgeries, of which mostly took place within the stomach area. He also was not taking any food by mouth, and so they had place a G-tube in his stomach, of which he still has in to this day. There were countless times that he also had blood transfusions, during the time that he stayed in the hospital. As of today, my son suffers from seizures, and has been diagnosis with different things such as Cerebral Palsy, Developmental Delay, Autism, and Hypoglycemic. There are a couple more that I can not think of at this time. We have at least 10 clinic's that we follow up with at my son's hospital, not including his Ot, Pt, and Early Intervention classes. However; I am not only blessed, but happy to say, that with all that my son has been through. He has beat the odds, and just learned how to walk about a week and a half ago. No more braces for him! He will be 3 years old next month. He is also starting to eat a little better by mouth. I hope this helps!

Amy - posted on 01/20/2009

56

2

2

Hi my son Bailey was born at 29 weeks.He spent 47 days in nicu and has been re-admitted 12 TIMES.  he has had everything from blood transfusions to infections and bronchilitis and asthma and stopped breathing the list goes on. He is only 8 months old so he has spent half his life in hospital.  Although i know it's hard i find some consolidatation in the fact at least i still have him here things could be a lot worse hope this helps

Danielle - posted on 01/20/2009

9

0

1

Our son was born at 28 6/7 weeks and he spent 80 days in the NICU. A very healthy little man until we discovered he had a hemangioma cyst in his airway. The surgeon did a little laser trimming on it and 1 week later we were home. 19 days home and he just was not himself so we took him to urgent care where he proceeded to quit breathing, once he was stable he was airlifted to Mayo and spent 11 days. He was septic due to late onset strep b. On Dec. 19 he had a scheduled surgery to do some more work on the cyst. In the recovery room his airway closed up and they put him on the ventilator. He then had total open airway reconstruction surgery using some of his ribs to rebuild his trach. They kept him on the vent for 1 week and he did great the night he came off. The next day he quit beathing and his heart stopped. They got it going again in no time and he was back on the vent for a few more days in which he had 3 surgeries. One was to do more work on his airway, one was a nissen to protect his airway from acid reflux and the 3rd was to put in a G-tube (no oral feedings for awhile to protect his airway) We were discharged on a sat and the next day we brought him back to the ER and he was re-admitted and put back on the vent for possibly the next 4 days. We are currently still in the PICU waiting to see if some of the treatments help before we have to choose a different route. All in all we have spent more time in the hospital than we have at home since Tristan was born on July 13. So I hope this gives you some insight as to it is not uncommon for preemies to get re-admitted. Good luck.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

12 Comments

View replies by

Jill - posted on 01/27/2009

6

29

0

My daughter was born at 35 weeks and a healthy 5lbs, 4oz. She was in the NICU for only five days to help with respiration and be sure she was free of infections. Reading everyone elses preemie experiences truly made me so greatful of how well she is doing today. Besides normal gas and reflux she is very healthy. The 5 days she was in there was torture, I can't even imagine weeks yet alone months. Thank you for your stories as it puts into perspective how truly lucky I was, and I need to remember that when the going gets tough.

Sheera - posted on 01/27/2009

1

95

0

Sorry to hear that, I have not gone through that myself with my daughter and she was bon at 28 3/7 weeks. I am not going to pretend as if I know what you are going through but the only advice that I can give to you is to tell you just keep the faith your daughter is a fighter all of them are. Just try and hold out and look at all of the POSTIVE that she has brought to your lives. WHen I had my daughter I didnt know what to expect cause Im a first time mom. I was scared, I tried to hide it but that only made it show more.She was born in Oct. 2008 and came home in Jan. 2009. There are still some things that we are working on with her, But remember KEEP THE FAITH NEVER DOUBT IT NOT EVEN FOR A SECOND. She a STRONG BABY, you and your family will be in my PRAYERS!

Keri - posted on 01/27/2009

51

10

4

I agree with you both.  This is the hardest job I have ever had!!  My niece is 3 weeks younger than my daughter and it sounds like they are having an easier time than we are.  I do have to say, everytime we go into the hospital my daughter is getting more and more comforatable with other people taking care of her rather than just mommy.  It's still hard on me seeing her go through the pain and then getting poked all the time.  One good thing is that she just learned how to roll from her tummy to her back this past weekend.  She is trying so hard to do different things.  I have to keep telling myself that she is 5 1/2 months corrected but only 4 1/2 months developmently.  so different raising a preemie vs. a "normal" child.

Danielle - posted on 01/26/2009

9

0

1

Joyce,

My heart goes out to you in every way. You are such a strong woman and I know that you and your son draw strength from eachother. I am new to motherhood and being a mom to a preemie has got to be one of the toughest jobs that I know. It is so good to hear from another mother going through rough times and still sound so positive. No one really ever told us that we could possibly have such a tough road ahead of us, but we are blessed to have such a strong little man. I say it is the toughest job I know but at the same time it is the easiest and most fulfilling and rewarding. I hope your son keeps improving, it sounds like he is a very determined little guy. Best of luck to you, your son and your family.

Keri - posted on 01/24/2009

51

10

4

Yes, please tell.  I wouldn't want to take my daughter there if it was the last place available.  Thanks for all of your stories.  Makes me feel a little better knowing that it is "normal" for preemies to be back and forth from the hospital their first year.



If any of you are ever in the St. Louis area, the best hospital to take your child to would have to be Cardinal Glennon Childrens Hospital.  They actually include the parents during their rounds and give you options as to what can be done so that you can be involved in your child's health care.



Are there any moms of preemies in here that are in in the St. Louis area by chance?

Tabitha - posted on 01/23/2009

4

18

0

I think we would ALL like to know what hospital treated your daughter terribly! Do tell!!

Danielle - posted on 01/22/2009

9

0

1

To Jaime,

Just wondering what hospital was your daughter 1st at if you don"t mind me asking?

Jaime - posted on 01/22/2009

20

21

1

 our daughter was born at 24 weeks and spent 248 days in the nicu.  she spent 155 days on the vent.  it was the hardest thing that i have ever went through in my life.  a lot of the time i thought that we should just end her suffering.  she was so sick at one time they told us that there was nothing that they could do for her but put her on morphine for the pain and just wait and see.  she was transfered from the hospital that i hated to the hospital that saved her life.  the first hospital she was in was neglectful, when she was transfered to the other hospital they found that she had e-coli, from poop in her breathing tube, she was septic, had a broken leg, and broken ribs, under fed, and her breathing tube was not giving her the oxygen that she needed she was only getting 10% and it had a 90% leak.  when she finally left the hospital we still had a lot of problems with her lungs and her development so to have to keep going back to the hospital was ok as long as she was ok.  anyways thanks for listening.

Kimberly - posted on 01/21/2009

3

0

0

Hi, my daughter was born at 26 weeks.  She remained in the NICU for 5 months before we were able to bring her home.  Two weeks before we brought her home they place a G tube as she was not eating enough to sustain her self.  She came home on monitors and oxygen for the first year of her life.  In the first two years of her life we felt much as you do.  We were back to the hospital for an infection in her stomach a week after her original discharge, then it was pneumonia multiple times, then it was procedures for damage to the vocal cords from being intubated for so lng.  I have to say it is getting better my daughter will be three next month and knock on wood it has been five months since the last time she was in the hospital again the last was for pneumonia.  As they get bigger and stronger it does get better, hang in there and remember on those days that times see tough and you don't know how you can possibly handle anymore how special and lucky you are to have such an miracle in your life. 

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms