15weeks early..............twins

Maggie - posted on 08/08/2009

Quoting Vikki:

Hi Emma, I had an emergency C Section 21st Dec 2008 to my twin boys Alfie + Ellis. Alfie weighed 2lb 5oz and Ellis 1 lb 9oz. Alfie passed away on Christmas Eve + Ellis spent 149 in NICU. He finally came home May on Oxygen as he has Chronic Lung Disease. We have a long way to go with him and another op to remove his inguinal hernias. I found the journey very scary and miss Alfie so so much. How is Jake now? Big hugs Vikki XXX

Vikki, I am so sorry about your loss .. Hope you have good support thru family, friends and the community! It must be v hard but if you are luckily in England you can get lot of support especially through organizations like Homestart etc.. I ve been through a struggling journey with Triplets but my experiences are nothing in front of yours! You must be a v strong lady and a beautiful mum to your Ellis! My prayers are with you x maggie x ( mum of 6yr old triplet boys:))

Vikki - posted on 08/01/2009

Hi Emma, I had an emergency C Section 21st Dec 2008 to my twin boys Alfie + Ellis. Alfie weighed 2lb 5oz and Ellis 1 lb 9oz. Alfie passed away on Christmas Eve + Ellis spent 149 in NICU. He finally came home May on Oxygen as he has Chronic Lung Disease. We have a long way to go with him and another op to remove his inguinal hernias. I found the journey very scary and miss Alfie so so much. How is Jake now? Big hugs Vikki XXX

Rachel - posted on 07/31/2009

I had my baby girl on Feb 23rd 2008 at 14 1/2 weeks early. She weighed 1 pound 9 oz and was 12 inches long. She was such a little fighter in the NICU for 5 weeks until she got too sick and tired to go on anymore. My daughter went home to be with the lord on March 30th 08. She had developed gangerine in her intestines and because she was such a micro preemie she never really was fully developed and had many problems. I'm very sorry for your loss and I know how hard it is for your baby to be in the hospital and you not be right there with him. I am now almost 36 weeks pregnant and it has been amazing how pregnancies can differ. My baby and I are doing well and she will be here in about 3 weeks! I'm here if you ever need to talk or need anything. Try to keep your head up and make some time for you and surround yourself with loving and comforting people. You will be in my thoughts and prayers. Take care, Rachel

Elizabeth - posted on 07/09/2009

thanks. We had very poor service. the ob/maternal fetal medicine had no idea they had it and competely overlooked every sign from the 1st uls when they couldn't find the placenta wall b/c it was stretched so thin to their heartrates being so different. We were told that they heart rates being different is b/c they could be fraternal and not identical. when I put on 10lbs in a week I was lectured about being on a diet when I've always watched my weight and ate very healthy. we requested an amnio at my 20th wlk to rule out any abnormalities which would have shown ttts. They said no b/c it was risky and if there was something wrong 'we would love the baby anyway'...My last appt the heart rates dropped from 15beats different to almost 30 beats different and the blood flow transverse. we were sent to a county hospital where I didn't want to go and we persuaded by telling me I could stroke out from my bp being elevated. 28hrs later and several drops in the heart rate, I was transported to a hospital 2hrs away and had an emergency c-section. Before being transported they did a doppler to check the heart beats and couldn't find Jonathon's but claimed for once their heart rates caught up and were the same. When they were delivered, jacob's was 40 bpm and Jonathoin couldn't be found. My fiance likes to not blame the drs as much by saying it's not their fault we had ttts. But it was their fault how they didn't handle it and stalled us for hours. thanks again. I'm gonna try to see his dr tomorrow morning and hopefully get some answers if he'll ever walk and his test results for neuro, ortho,etc.It's really difficult since our 9year old was really looking forward to not being an only child anymore and devastated with how things turned out. i feel like I'm in a hell of some sort. twins are so rare and almost everyday I see twins, hear someone's having twins, or something on the radio/tv and every celebrity now has twins...what's up with that? It's difficult to deal with. I'll keep you posted. :-)

Cindy - posted on 07/09/2009

Elizabeth, my daughter has tts, and is at 23 weeks. They did an amnio to drain amniotic fluid Tuesday. What was your treatment? She is on bedrest, high protein diet. I am so sorry about your baby's loss. Hang in there, I know you have been on a long journey. My daughter and her husband have moved in with us so I can help care for her. I am an OB nurse and know too much. Please let me know how Jacob is doing. God bless.

Elizabeth - posted on 06/25/2009

Hi. I have twin boys that were born at 26wks due to complications of ttts. Our one baby didn't make it and his brother is still in an aftercare facility far from our home. they were 1lb 10oz and 1lb 4oz. Jacob(1lb 10oz) has had numerous surgeries and all the worst odds against him. he's on a vent(trach)and has a gtube to feed as he won't attempt to bottle feed or use a pacifier since having the tube removed from his mouth. he gets round the clock therapy for speech, physical and occupational. he hasn't started to crawl but has shown signs this past weekend of rolling his legs around. he has a great fighter mentality and kicked his cardio surgeon really hard the day of his cardio surgery when he was 2wks old. the dr said he is a fighter and has a strong will to survive this. he's very low on his settings and we've been told that with his chronic lung disease he could be off the vent by 1 1/2yrs old 2yrs the latest. it is a very hard experience and I wouldn't wish it on anyone. when I was younger I thought all the preemie clothes were adorable and the cabbage patch preemie dolls were awesome...no one tells you how hard it is to have a preemie. they are fighters and will make it through the struggle. I think the hardest part will be when he gets older and asks about his twin brother since they have that bond. our twins were mirror image and Jacob's showing signs of the rarity of this type of twin...he prefers his left hand for everything when we'll all right handed and his eye color has changed several times. he also has birthmarks that are opposite from Jonathon's-classic mirror image twin trait. it sucks but it's the struggle that makes you stronger. we can do it. good luck!

April - posted on 02/08/2009

I'm so sorry for your loss. I have twins (Edwin and Annabelle) who were born at 28 weeks. They were in the NICU for 62 days. Luckily, mine were fairly close by. I can't begin to imagine what you are going through with your loss. It was very hard for my husband and I to deal with everything that we went through. My daughter has been the luckier one of the two with only a hernia to repair. My poor son has had many health problems, resulting in a trach, g-tube, many other things. He is very healthy now. The trach is out and the g-tube is next (Feb. 20th). At the time, it feels like you can't possibly deal with everything, but you do. You somehow get through it all and it makes you more stronger and wiser than you ever could have imagined. You will get through this. Be strong. I will pray for you and your family.

Emma - posted on 02/04/2009

thank you to all your answers ..................... i have a page set up please pray for jake ....its on facebook please join it xxxxxxxxxxxxx

Danyelle - posted on 02/04/2009

Emma,

My heart goes out to you!  I am so very sorry for your loss.

I am the mother of twins Cora and Ayla who were born 15 1/2 weeks early at 1lb. 14 oz. and 1 lb. 11 oz.   I was flown two states away from home to try to stop the labor....but the girls were so sick they were delivered emer- C- section.   It was a very difficult way to start out motherhood!  I did not get to hold them for the first time until they were 6 wks old.  They were still on a ventilator. 

Five years later, much to my surprise I gave birth to a singleton son who came 14 1/2 weeks early as well.    After my long two journeys  in the NICU world I would certainly have some words of advice that I hope can help light the tunnel for your journey.   The first two things I suggest are to help yourself so that you can help your baby.

First - take the time to grieve your loss......the loss of your pregnancy and the loss of your sweet baby. You have a right to feel your emotions.....let them out so you can move forward.

Second - If the hospital offers you a councilor to speak with, take the time if you can, it is a blessing to get things off your chest to someone who has heard and understands the complexity of your situation.   Also go to parent support groups if you can, this is a great resource to ask questions and regain hope that the day will come that your life will be normal again.  Remember your partner if he is involved.  It is easy to feel alone in this pain and worry.  Lean on eachother as much as possible.

Don't forget to eat and drink, try to sleep when you can.   Spend as much time as possible with your baby.  Always remember you are his mom, the doctors and nurses and machinery do not own him, you do!   Do anything and everything they let you, change diapers, take temperatures, make his bed, bring in your own soft fuzzy clean baby blankets, sleep with them first so they smell like you and he knows you are near him.  Sing, read, and cuddle him against your bare skin like a baby kangaroo if possible.  If you can provide breast milk, the antibodies and nutrients will speed his growth and development faster than anything.  If you beleive in a god, pray, pray, pray.   This helps create miracles and passes the long hours of desperation when the days seem to pass like years in the hospital.   Don't let everyone see him, if he gets a cold, virus, bacterial infection, this can be life threatening.  Visit www.caringbrigde.org and set up a website to keep everyone who loves  you in the loop, it is a great way to give updates and avoid time consuming phone calls.  If possible stay at the hospital or Ronald McDonald house so that you are able to be at the hospital every day.  This is your new job......it will not be forever this way but do the best you can to keep putting one foot in front of the other and know that in three months you will be home loving this baby in the privacy of your real life.   Beleive this!   If someone offers you help, take it you need it right now.

Be your sons greatest advocate.  If you feel the need drive the doctors and nurses crazy with questions so that you can understand what is happening along the way. 

I wish you all the best! It is fabulous to see you holding your son, and that he is already on a c-pap machine taking his own breathes!

many hugs~

Kimberly - posted on 02/02/2009

I am sorry for your loss. Although I didn't have twins, my son Danny was born 12 weeks early, weighing 1lb 3ozs. 11 inches. It's a long tough road, but every day things get a little better, even though it might not seem so now. Things do get better.

Samantha - posted on 01/28/2009

i am sorry for your loss and you will always be a twin Mommy. Just take your journey day by day and you will get through it.

Amy - posted on 01/28/2009

Emma-

I have not been through your situation, but I have friends who have. They lost one of their twins to complications from his premature birth in July 2008. Their daughter required care in a city over 100 miles away from home.



They created a web site in honor of their son: www.gradysdecision.com. You can contact them through it if you like. They are a giving and loving couple who enjoy connecting with other parents.



I will keep Jake in my thoughts and prayers.

Linda - posted on 01/27/2009

I hope all gets better soon and I am so sorry for your loss. My son was born almost 12 weeks early. It does get better, I will be praying for you and Jake.

Emma - posted on 01/27/2009

I forgot to write.......... Max birth weight was 1lb 7oz and Jake 1lb 12oz xxx