Feel I Should Join...[infant loss]

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ArmyWifeNJ's picture
Last seen: 7 years 7 months ago
Joined: 04/16/09
Posts: 4
Feel I Should Join...[infant loss]

I feel like everyone around me has a normal healthy baby...and i get so jealous...i can't do anything but cry and put myself together again.

On March 30th at 9:14 am, after 30+ hours of labor and only 15 minutes of pushing, Jayden Nathanial was born in Newark Beth Israel, in New Jersey. on April 1st at 8:51 pm he died at the Childrens Hospital of Philadelphia.

My name is Shana I am 21 years old mother of an angel in heaven & a US Army Wife. My husband and I got married last April when he got stationed in Hawaii. In early June I had joined him in our new home...a very new place..to start a new life. The move was exceptionally hard on me, I am very close to my family..my niece and sister in particular. Sure enough as most young military wives do, I got pregnant after only 3 weeks of living on Island. I found out while my husband was training...after waking up feeling like i was about to die...i found out i was only pregnant...a semi relief...because here i was 5000 miles away from home..had no idea when we would fly back...and finances...psst i did not see how we would have the money to start buying baby things...my husband came home 2 weeks later, after almost losing the baby at 7 weeks [ found out at 6 weeks] I was on bedrest til about 3 months...with horrible morning sickness that lasted til 17 weeks....but it subsided we managed to start saving and had started coping with the idea our baby would be born away from our families.

at 20 weeks we found out it was a lil boy, at 25 weeks, they noticed a leasion on his left lung that started a course of additional scans...at our first fetal heart echo Jayden was diagnosed with Pulmonary Stenosis, a congenital heart defect. My husband was in denial...as i would read up about it..he kept saying we wont know until he is here so dont worry...by the 2nd it was certain. the army pediatric cardiologist had started the process of sending us back to the east coast to have the baby by 34 weeks we were on a plane...in Philadelphia they confirmed they same thing...but ironically the leasion on his lung dissapeared. now it was just his heart.

when he was born he was okay for a few hours, then he started to decrease...they put him on oxygen, first this box thing...then when they gave him some medicine they put a tube down his throat...by the 31st, the drs. had decided to send him to philadelphia incase he were to need surgery. at 1am the dr. called me asking for permission to perform open heart surgery to put a stent in help blood flow more evenly to his lungs. the operation went great..and he was doing better...around 11am the next morning i got another phone call asking if they could put a catherer in to take pictures because he had started to decrease...and wasnt able to fully oxygenate is whole body. when we got to philadelphia an hour later...we were told he not only had pulmonary stenosis, but also pulmonary hypertension....they believed he had acquired the PH the last 3 weeks of my pregnancy when a certain valve had closed, causing high blood pressure in his lungs. they tried everything possibly..but there was nothing anyone could do. my husband and i decided to let him go, to take him off the machines..and just as we were there the 2 days before brining him into the world...we held him when he left. I am not sure how i am coping...i cry alone to ymself at night...or in the shower...over the last 9 months he was my little buddy...i didnt feel alone with him inside me...now...i feel so empty...idk if i still even count as a mother...he grew under my heart and inside of it for 9 months...he came out of me...ripped me...caused me so much discomfort, i went through it all because at the end i was told it was great. and all worth it...and for that one day it was worth it. i'd do it all again to repeat that day with him...when we had hope.

i want to have another baby, i dont feel like i am replacing Jayden...but i feel like i wont love the 2nd baby as much as my first. and that makes me not want to. my husband wants to get pregnant again asap. we have a less than 1 percent chance of having another child with a heart defect, though i will be considered high risk for the future baby...

but thank you to anyone who read this...i just needed to speak to people who understand.

Last seen: 1 year 8 months ago
Joined: 03/16/15
Posts: 53852

I am so sorry for your loss. Of course you are a mommy!! Your baby just happens to be an angel, but a mommy just the same. What a horrible decision you had to make. I can not fathom how hard that must have been, but it is a showing of true love.
Please be kind to yourself and allow time to grieve the loss. We are here for you if you need to talk, any time. I admire your courage and that of your DH through these tough times. Hang in there.

Uropachild's picture
Last seen: 4 years 9 months ago
Joined: 08/09/05
Posts: 1176

Hi there. Smile

I don't often post here anymore, but i couldn't read your post and leave without giving you a virtual hug and telling you that i know how you feel. My husband and i lost our first son 36 hours after he was born at 41 weeks. We also had to make the heartbreaking decision to withdraw care after he had suffered seizures and cardiac arrests due to blood loss at birth.

My heart goes out to you and your family. I also wanted to tell you that it will get better, i promise. Our son grew wings on 17th October 2006 and each day since has meant that our hearts have healed just that little bit more. It's still the immediate aftermath for you and it will feel like you will never be happy again. Trust me when i say you will. It's only when you look back through the grief that you can see exactly how far you've come. The difference every day is barely perceptible, but you will slowly learn to cope and although you will never be the same again, you will certainly be happy again.

***living child mentioned***

We now have a gorgeous healthy daughter after suffering the loss of our son and a stillborn baby girl in 2007. I swear i never thought i would love another baby the way i loved my son, Zane, but then we got pregnant with Ada. Unfortunately she was stillborn at 25 weeks, but she taught us love and happiness again. In fact her name, Ada, means happy. And now that we have our daughter Lyric in our lives everything we have suffered over the past two and a half years since that day we held our son as he died has paled into the background. I still miss my angels and i will never forget them, but holding a living child has brought a whole new level of love to our lives that we never thought we would get to experience.

All i'm saying is don't worry about whether you will love another baby as much as your son Jayden, because you will. His brother(s) or sister(s) will heal you more than you can imagine right now.

I know everyone is different, but for me, i found that trying again was the thing that helped me cope the most. I needed to feel like i was getting back on track. When we'd lost Zane i'd had to have a crash c-section and because of that we weren't allowed to try again for a few months so that i could heal. I remember saying that i felt like we'd been knocked back to "square minus 1" and that my life was on pause. The only way i could get past that paused feeling was to be actively trying again.

You are in my thoughts sweetie, and i hope you continue to post here as you need to. I don't come here often anymore but this board helped so, so much.


Sarah. x
Mum to angels Zane & Ada

Holly_Anne618's picture
Last seen: 3 years 6 months ago
Joined: 04/03/07
Posts: 1271

I am so sorry for your loss and the decision that you had to make. It takes a strong person to be able to make that decision :bigarmhug: Of course you are a mom and you'll have a special little angel looking out for your every day from here on out. I hope you can find peace and healing. When the time is right, you will be blessed with another precious little baby. Sending many hugs your way :bigarmhug:

Last seen: 2 years 10 months ago
Joined: 01/25/02
Posts: 2023

welcome and I am so very sorry that you lost your sweet Jayden! Sad You will never forget your sweet baby boy and the happiness that he brought you, but you will go on to love another child. I think every mother worries that she will not love a child as much as she loved her first, but your heart grows bigger with each child. Hugs and prayers, and please vent or cry here anytime!

ladixon501's picture
Last seen: 6 years 3 months ago
Joined: 02/26/08
Posts: 1

I want to let you know that you are not alone. I have gone through the same thing, with the stenosis being on the Aortic valve, causing further problems with the mitral valve in my son's heart. I wasn't due to deliver until the end of March 09, but in the middle of January, I was sent to the hospital for what we thought was premature labor. During the u/s there, they discovered my son, Patrick's, heart was to big. Because of the aortic stenosis, the pressure in his heart had caused the heart to grow to approximately 1/2 the size of his chest. We were sent to Children's national Medical Center, in Washington DC, and ultimately, that's where I delivered.
We didn't know how Patrick would react to being delivered, so I was constantly monitored, and after 3 weeks, it was decided that I needed to deliver. His heart stopped at birth, but one of the many docs that were there (approx. 30+ people were in the delivery room...) was able to perform CPR, and brought him back. We honestly didn't believe that he would live, but they were able to perform a catheritzation procedure to open his Atrial Septum (I think that's what it was called...), and he stabalized. Unfortunately, the trauma he sustained from the CPR and the cath procedure caused severe swelling.

The docs put him in the Cardiac ICU, and hoped that his swelling would decrease so they could do surgery, but it never did. 10 days after I delivered, my husband and I also decided to remove his life support, as we didn't want him to suffer any longer.
I greatly admire your strength in you being able to hold him and be there when he passed, as I was not able to do that. I wish I could've been that stong, but I knew that I would never be able to let them take the machines down.

Its been 2.5 months since he was born, and I think I'm starting to do ok. It is still very difficult for me to sit here and write this story- more difficult than I thought it would be. My husband and I have said that we will try again, and I honestly would love to go ahead and try now, but I know I'm still not quite ready for that. We will only be trying one more time, however, as this is the 2nd loss within a year. I truely hope that the next time will be successful. My son was beautiful. Even through all his swelling and tubes, he was adorable. I can't even begin to imagine what he would've been like.

Anyway, I just wanted to share my story, as there aren't a lot of this kind of story out there. When it all happened to me, and I started reading these boards, I felt like no one had the same experience. Know that you aren't alone.

When you're ready, if you'd like to talk, pm me. I'll be happy to try to help you in any way that I can. I know its tough being away from family- I was active duty military, as was my husband.

Patrick William Dixon
2/5/2009 - 2/15/2009, born at 33wks.

Last seen: 1 year 8 months ago
Joined: 03/16/15
Posts: 53852

^^^^ hugs^^^

beckastar's picture
Last seen: 5 years 5 days ago
Joined: 01/09/08
Posts: 120

Shana -

First, lots and lots of hugs :bighug:

Losing your baby is the hardest thing in the world. But, I promise you, it will get better.

My daughter Gabrielle was born prematurely in October. She did really well in the NICU for a while, but developed an infection. We too had to make the heartbreaking decision to remove her life support, as her kidneys were failing and she had perforated her bowel. She was 6.5 weeks old.

I didn't think I would ever feel better. I wondered if I was really a mother, sine my baby had been taken away. I wanted to try again, but I was scared, and had to wait any due to having had a c-section. My DH didn't want to try for a while.

As each day has gone by, we have healed. Some days are better than others. Some days are bad. Most days are good now.

My heart aches for you. Please PM me any time if you need to talk.

HopefullySoon's picture
Last seen: 4 years 10 months ago
Joined: 01/31/08
Posts: 163

I am so sorry for the loss of your sweet Jayden. I am so sad to hear this. I also have lost a child, I was full term when I lost my daughter, Zara, during a difficult delivery in Dec 22,2007. The first 6 months following were so tough, but at the same time it seems like that time is such a blur right now to think back on. My only advice is to take care of yourself and be kinder to yourself than normal. Life may never be like it once was but you will get back into it and the lonely empty feeling that comes from living without your son will not be as intense as time passes.
These next few months are going to be so hard, but you will see, you are stronger than you realize. I have found that my strength far exceeds even my expectations at times.
I think you are a good mother. Your next baby is going to be so happy when you give him a little brother or sister. I think Jayden knows your heart and will be so happy to see you happy again.
Take care and lean on the ladies here. This place has always been exactly what I need Smile