8 Months old still in the NICU on vent

Brittany - posted on 12/27/2009 ( 30 moms have responded )

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My son Mathew was born at 24 weeks he was 1 lb 7 oz and 11 in long. He is now 8 months old he is 16 lbs and 24 in and still in the NICU. He has had PDA Surgery, grade 4 brain bleed on right side, BPD, Pulmonary Hypertention, Grade 2 ROP in both eyes, hernia. He is still on the vent, on nitrous, just got off of Folan, on viagra, bociten, and many more. He is prob. going to get a trach but the doctors cant decide because he has been off the vent for 2 months befor the pulmonary hypertention happened when he was 4 months old and he can ventilate great he just can't oxygenate. I just wish he would start getting better now its been so hard. I know he will be fine I just can't wait for him to be better, and I don't mind waiting on him to come home I just want him off that stupid vent and all those meds.

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Cristy - posted on 11/24/2012

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Hi my name is cristy and I'm going through all the same things.. my son is almost six months and still in the ICU.. he is stiill on a vent of 100% and N.O. all kinds of meds and the drs. Are telling me I need to start thinking about stopping treatment.. I'm so scared and confused.. he is in collmers children's hospital. In Chicago. But they don't sound to prommising.. any suggestions. On a Dr. Or hospital that is good and wont give up on my baby.. he was only 1lb.3oz. And still fighting I'm not ready to give up.. please help

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Tammy - posted on 01/28/2010

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Brittany~!!! You are an AMAZING woman!!! I see where Matthew gets his fight from. He is so blessed to have you and you him!! Im sending a little prayer your way and I cant wait to read the next update~!!!

Brittany - posted on 01/26/2010

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Mathew got his Trach on Jan. 20 2010 and is doing very well. Maybe just a few moew months and we will be home.

Sarah - posted on 01/10/2010

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Wishing you and your son and the rest of your family the best of luck! Wishing you a wonderful 2010 to celebrate your son coming home one day soon!

Donna - posted on 01/03/2010

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my son was born at 27 weeks he is eight now when he was born he had all the prob. of a micro preemie all the surgeries ect. due in part to an infection he had, it took a while for him to come off everything but he did he is now on two meds for epilepsy o2 when needed and he has a feeding pump, just keep remembering he was really little and sick when he was born and its just taking him a little extra time to figure out how things work out here i no eight months is a long time but it will work out just hang in there

Christelle - posted on 01/01/2010

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I'm sorry to hear that he has had so many challenges. Just remember he was meant to be here even if it was at 24 weeks. They are stronger than anybody could ever imagine. Good luck, and best wishes.

Andrea - posted on 12/31/2009

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I ALSO HAD A BABY AT 24 WEEKS. HE WEIGHED 1LB AND 10OZS AND WAS 12 INCHES LONG. HE HAD A GRADE 4 BRAIN BLEED, PDA LIGATION, HIS LUNGS HAD A BLEED IN THEM, HYDROCEPHALUS, CHRONIC LUNG DISEASE, AND HE IS STILL ON OXYGEN. HE HAD PROBLEMS OXYGENATEING HIS BLOOD TO. HE WEIGHS 11LBS AND IS 22 INCHES LONG. AFTER 4 MONTHS IN THE HOSPITAL HE GOT TO GO HOME. HES HAD SEVERAL SURGERIES AND GONNA HAVE ANOTHER IN JANUARY. HANG IN THERE AND DONT GIVE UP. EVERYTHING WILL BE OK AND YOU WILL GET TO GO HOME. I THOUGHT WE WERE NEVER GONNA GET TO GO HOME AND I ALMOST DIDNT BELIEVE THEM WHEN THEY TOLD ME WE WERE GOING HOME. WEVE ONLY BEEN HOME FOR ALITTLE OVER 2 MONTHS NOW. JOSH IS STILL ON MEDS. HANG IN THERE THINGS WILL GET BETTER.

[deleted account]

It brings back so many memories reading your posts as well as others. My daughter was born at week 24 and weighed 11/2 pounds and 12 inches long. She's now 14 and I still call her my miracle baby. She's doing great. Many things that they listed would probably happen didn't. The one thing that worked for me is that I wrote to her everyday in a journal about what was going on. It was as much for me as for her. I wrote every day even after she got out for a long time and now I still write in it occasionally. I plan on giving it to her when she is 16. The other thing I did was I kept one hand on her (or her visitors did) the entire time I was there. Maybe it just made me feel better but I think it helped her too. We both wish you the best and are sending you positive thoughts and prayers.

Brenda - posted on 12/30/2009

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I hope to God that your baby gets better soon and that he will be home with mommy happy and safe.

Cynthia - posted on 12/30/2009

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My son Andrew was also born at 24 weeks. He weighed 1 lb 1 oz and was 10.5 in long. My heart truly goes out to you! My son dealt with many of the same issues your baby is now dealing with. Andrew is now 12 years old, and mainly his vision was affected by ROP. He's been wearing glasses since he was 8 months old. Please have faith that God willing your baby will soon get better, and be home. The doctor's can only do so much, that's what they even told me when my son was in the hospital. My prayers are with you and baby Matthew! I wish you all the best for the coming year!

Shaunda - posted on 12/29/2009

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My prayers are with you and Mathew. I know it seems hard but things do get better. My daughter was born at 23 weeks and she weigh 1lb 10oz and she had 5 major surgeries and she was on the vent and now she is16 years old. My second daughter was also premature and she was 1lb and I also remember the doctors saying she wasn't gonna make but she did she is 13 years old and she only has a little hearing lost. I will keep you and your baby in my prayers.

Brittany - posted on 12/29/2009

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Oh, and Mathew has actually only been ventilated for only 4 months now. He got intabated on his 4 month birthday. He was only 2 days away from his day to come home and BAM! back on the vent overnight. He got an infection, which was a blessing, that may sound bad, but it was. If it wasn't for him getting the infection we never would have found out he had pulmonary hypertention which was making his heart fail. It got so bad that the doctors called us at home one day and said he wasn't going to make it the night, which was 4 months ago!. The doctors exact words were " there is nothing else we can do , it is up to Mathew and God now." I should have known then he would be fine because Mathew is a fighter and God is a healer.

Brittany - posted on 12/29/2009

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Thanks everyone for the comments just reading them helps. We found out today that Mathew is really 17 lbs now and 29 almost 30 inches long, They miss measured.I was wondering why he was so short and didn't grow in like 2 months or longer. Well he is still on the vent at 100% O2 but sating great he is off most of his meds and getting 33cc an hour because its easy on his tummy that way. We still havn't heard anything about the trach yet so still just waiting to see, but they say he is doing pretty good to be so sick.

Christy - posted on 12/29/2009

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Dear Brittany,
My prayers are with you for a quick end to all of these seemingly endless complications. Please know that God is with you and with your son as well. The way I believe is that God will never give you more than you can handle , so he must think an awful lot of you. Keep your chin up and God will be faithful, it's hard to see it now, but there are overflowing blessing in store for you and your son.
God Bless You,
Christy

Nicole - posted on 12/29/2009

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May you continue to be blessed. Your on the NICU rollercoaster. My words of wisdom to you all all moms of preemies and handicap children is take it one day at a time and on the bad days take it an hour or a minute at a time.
I too had my babies @ 24 weeks. One of my daughter's passed away after 4 days. My other daughter, Colby Raine, was 1 pound 9 oz and 12 inches long. We were in the NICU for 6 months and 1 day. So I know how discouraging it can be. My girls were born in June so I watched as others were discharged that came after us and as the holidays went by. There were days that I thought I would loose my mind but then I would look at her and... she would melt my heart.
Colby went through a lot too. She had the PDA ligation, a grade 4 brain bleed on both sides, developed hydrocephalus and has a vp shunt. Her retinas were grade4 and detatched. She has stents in her heart, etc. Our road was a long one but she is such a little fighter and your little guy is too.
Colby is 4 1/2 years old now and I wish that I could say that all we went through is a distant memory but it isn't. Everytime I read a story like yours my heart aches that another family is feeling the anxiety and pain we did. Although Colby has deficits, we feel triumphant. She is here with us and the happiest little girl you'll ever meet.
You, your family and your little fighter will be in our prayers. Keep the faith.

Lisa - posted on 12/29/2009

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Stay strong, my Meagan was 24 weeks, 1lb 13 oz and 12 in long..she was vented for 2 months and had many complications during her 5 month stay in the NICU. We had weathered the storm with some of the issues you are experiencing with your son so just stay strong, he is in the safest place he can be right now. BTW - Meagan will be 18 in April with no residual effects of her prematurity - Ill be praying for Matthew!

Stacey - posted on 12/29/2009

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My son came home with a trach after being in nicu 5 months...I had him at 23 1/4 wks, 1 lb 3.5 oz, He was able to have the trach removed about 1 yr later...Its rough, but stay positive! There is light at the end of the tunnel, somehow there always is! My boy is 10 1/2 now with lasting effects of prematurity!! Good Luck! If you need to talk, msg me.. I went thru my son having his trach all alone, so I know a lot about it!

[deleted account]

Gosh I am so sorry you are going through this. I am a Grandmother to a 28wk Preemie. She was on the Vent for a while after birth and spent 11 wks in the NICU. I can only imagne having to stay on one that long and being in the NICU for an extended period. I have had both my grandbabies in the NICU after their births.I know there isnt much I can say, however I did want to let you know that you are not alone, we are all here rooting for you and your little one. Please keep us posted on his progress. May God Bless you and your child. Best Wishes!

Chris - posted on 12/28/2009

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It will happen before you know. Once he gets that small tast of freedom fromw thigns he will Fly!!!

Angela - posted on 12/28/2009

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My heart goes out to you the nicu is rough but your little guy is adorable and not so little my preemie twins were 1lb 15 oz an 2lbs 1oz and now are 9 months and still 115 and 16lbs so im glad your guy is growing so well

[deleted account]

My son was a 25 weeker and was vented for 2 months - we were told that was a long time for a baby to be vented (I can't imagine 8 months). We were also told that because he was vented for so long that he would end up with asthma and would need puffers any time he got sick. Guess what, he doesn't - no signs of asthma and he's never needed a puffer (fingers crossed). He'll be 2 in a couple of weeks.

Your little guy is obviously a fighter, he just needs a little more time. Best wishes to you and your Matthew.

Shonene - posted on 12/28/2009

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Brittany,

You must be an amazing person for God to go through all this with you. I know it might sound "hokey", but after having 2 premie babies and watching them grow (at times against the odds) I can say God gives us those little darlings for a purpose. Love him, touch him, and cherish every single minute.

He looks so precious...Happy New Year to you! I will say a prayer that your little guy comes off of the vent and the medications...

Shonene

Emilie - posted on 12/28/2009

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Hugs for you. The NICU is tough. As you already know, most of the list is very typical and probably won't cause any problems when he grows up. One of the things I think moms of very premature babies learn early is patience. I hope that your "lesson" is over soon and he gets to come home.

Karla - posted on 12/28/2009

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my daughter was born at 26wks at 1lb and 5oz. she developed nec a month after her birth. it was very hard on her lil body but she made it. a few after that she had eye surgery, it was a success. she stayed in there for 4 months. everytime one of her lil friends would get discharged we just kept positive even though its very hard. mathew is a fighter!!! he is just vacationing there for a bit. he will be home sooner then you think. when we got maya discharged,it was unbelievable. we could not believe it. i know that will be you soon. prayers are going out to you and lil matthew.

Marika - posted on 12/27/2009

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you poor thing its so frustrating being in the nicu anyway let alone being there that long be positive you have a little fighter i wish you all the best

Andie - posted on 12/27/2009

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I know how you feel. Four of my children have been on the vent. I don't have any great words of wisdom for you but I will be praying for little Matthew. Keep us posted on his progress.

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