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Jacob's Journey

JSJMOMMY - 10:23am Nov 4, 2009 EST

My son's story starts when I was told that he was at an increased risk of being born with Down Syndrome or Spina Bifida. At 19 weeks I had an ultrasound done to check for abnormalities and found he was 2 weeks behind in growth. At 28 weeks my son's growth was 5 weeks behind and was told that he would be stillborn in a few days and would not survive outside my womb being so small. He was delivered via C-Section on 07/08/09 463 grams 13" long and the sound of his cry was music to my ears. Today 11/04/09 he has been in the NICU for 120 days too long. He is now 1602 grams and 14" long. He has CLD from being on the ventilator for too long and liver damage from getting TPN for too long. He is on nasal cannula, continuous feeding to keep his blood sugar stable. He is also growing very slowly which is very frustrating and still in the incubator. For the most part he is pretty stable. If there is anyone who has experienced very slow growth with their micro preemie your words would be greatly appreciated.

Attachment:

jacob 10-26-09.bmp

imani'smom - Nov 4, 2009 3:19 pm (#1 Total: 6)

Congratulations on your beautiful son, Jacob!

I understand that difficult path you were on. We had several sonogram findings that lead our perinatologist suspecting our daughter had Edwards Syndrome. Subsequent testing in the NICU ruled it out.

My daughter was not a micro preemie, she did suffer growth restriction and was born about 4W behind where she should have been. It did take her time to gain weight, she spent 7W in the NICU and gained less than 2lbs in that time. She was also slower at learning to eat and maintaining her temperature, but eventually she figured things out. She is still pretty small (weighed 20lbs at 19M) but is very proportionate.

The NICU doctor told us right before I delivered that she may act like a 29W instead of 33W, and in some aspects he was right.

I hope your little guy continues to do well. Please update us as you can.

Take care,
Cathy

Brocksmom06 - Nov 5, 2009 6:25 pm (#2 Total: 6)

What a cutie pie!!! Although I don't have words of wisdom for you in your particular situation, I'm sure there are some folks on this site that will be responding soon

I CAN wish you nothing but the best!

Please keep us posted!
~Sarah

^Trinity's^ Mommy - Nov 6, 2009 4:38 am (#3 Total: 6)

Mommy to Jadon 34 weeker and Trinity our angel!

What a cutie! I havent been through this exactly but for your words it seems that you and your little cutie pie are fighters... please keep us posted on his progress!

Lots Of Love
~Samantha

Carson2005 - Nov 6, 2009 9:10 pm (#4 Total: 6)

Hi,

my son was small when he was born, he was 1020g after 90 days in the nicu he was 1935 grams, even to this day he is 4 and only weighs about 30 lbs. I think your son is doing well, for how small he was... his start weight to where he is now is a miracle, keep your chin up! My son has/had CLD as well and does fine. Just normal sickness and no asthma to date. Getting the RSV shots for 2 years after release helped ALOT! Lastly, My son also had to stay in the Isolette right up until a week before he went home, and I feel your pain, I wanted him in an open bed so bad, but they are safer from germs in the isolette so it may be a blessing, it jsut doesnt seem that way now. Anyway just wanted to share my similarities in hopes it may help you stay positive. That is the most important peice to your son growth! If you wanna know more of our journey, you can read my short story...Carson's Story of miracles...and if you have question, never hesitate to ask...or if you just need to talk....I am here for that too.

Kiss the cutie for me! Heather

momjessie - Nov 10, 2009 12:08 pm (#5 Total: 6)

First, I would like to say your son is absolutely adorable. My youngest child, son Dakota, was born at 30 weeks gestation and had quite a few difficulties. He has CLD from the ventilator and from his lungs being underdeveloped. However, Dakota is now 3 1/2 years old and is doing wonderfully. He was slow to grow and did not come out of the isolette until a week before he came home. He was supposed to be released twice before he actually was. We lived an hour and a half from the hospital, so he had to pass the carseat test and just couldn't do it. He could not even stay in the carseat for 20 minutes without his breathing becoming labored and alarms going off. It was a frustrating time. However, he is now healthy for the most part. He does get more lung infections and respiratory problems than my other children, but overall he is a happy, healthy boy. You and your son both seem like fighters. Keep your chin up and things will work out. Please keep us updated on how Jacob is doing.

[Last Editor: momjessie, Nov 10, 2009 11:09 am. Total Edits: 1]

JSJMOMMY - Nov 29, 2009 12:02 am (#6 Total: 6)

Jacob Update

Thank you girls for your words, I really appreciate it. It is nice to know that we are not alone. I have read several stories and blogs on here and my heart goes out to those who have lost their little ones and those who have had a lot more struggles. Today 11/28/09 is 144 days in the NICU. Jacob is doing pretty good so far (knock on wood), off the feeding tube (getting all his feedings by bottle) and finally in an open crib. It's been some time now since his last blood transfusion and infection. He still has to have his hernia repaired and get off the oxygen. He was at 27 cal milk to help with the weight gain and slowly coming back down to 22 cal milk. His current weight is 4 lbs 9 oz and 15" long. He has come a long way and I am so very grateful. It is hard having him in the NICU and not being home with us for the holidays. I just don't feel complete. He is growing but very slowly on his own curve. I am not sure if I should worry about his slow growth or just enjoy his progress. Any words would be great.

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