Funeral, Momentos And grieving Time

Hello my name is Nicoletta (Nicki) and Im currently pregnant with di - di twins. (Separate placentas and separate sacks) One boy, Jeffrey Jr and one girl, Cadence Nicole.
When I was around 12 weeks pregnant Jeffrey got diagnosed with Cystic Hygroma (blocked lymph notes that causes fluid to build up under the skin, normally the neck area). Our son has a very severe case, the fluid is on his head, neck, back, chest and abdomin. His prognosis wasnt good. We then scheduled a CVS (where they take a piece of placenta through my stomach) at Magees Women's Hospital in Pittsburgh, PA for two days later. This was because with cystic hygromas chromosome abnormalities are common. My doctor had informed us that we probably wouldn't need to have it done when we went there because she thought by that time he would have passed away, and that was only two days later. When we went, our son was fighting still, strong heart beat and moving around well. The procedure went well and we returned home, stressfully awaiting the results. That Tuesday, a week after we got the initial news, we had another ultrasound. Jeffrey was still fighting, the problem was the fluid increased around his head and now there was fluid on his heart too.
At this point our doctor started to talk to us about having a selective reduction (a termination due to the health of a baby, where they Inject potassium chloride into the baby's heart to immediately stop it, then I would have to continue to carry our son, already dead, until our daughter was born). Although the overall survival rate for fetal cystic hygroma is only 10%, we didn't feel this was an option for us, after all, God is a miracle worker. With him on our side, all things are possible.
From then we awaited results. Our preliminary results came in the next week. Baby A was a boy, and they ruled out Spinal Bifida, Downs Syndrome and Trisomy 13, and baby B was a girl who was chromosomal healthy. As time went on, waiting got harder, our son continued to fight. At 15 weeks we finally got the call. The genetic counselor from Magee Women's Hospital said our son had a very rare disease called Tetraploidy. Normal babies have 46 chromosones, organized into 23 pairs. Babies with Tetraploidy have 4 on the 23 numbers instead of 2. Complete Tetraploidy babies have 92 chromosomes. Our baby has Tetraploidy Mosaic, which means it's only on some, and in our son he has 4 on about 20%. In essence, our child has too much DNA. Babies with Tetraploidy experience mental and physical retardation as well as multiple birth defects. Most fetuses diagnosed with Tetraploidy normally pass away in the first trimester of pregnancy.
This had made the doctors start to really focus on pushing the reduction. Although I was induced at almost full term with all of my children, I start to dialate real early, even as early as 4 months with my 6 month old. The doctors were afraid that bc the weight of one child made me start to dialate too early, and because twins usually come early, that the weight of two babies would make me dialate and go into labor so early that either neither child would make it, or so early that our daughter, the chromosomal healthy one would be severely retarded.
This news made me sick to my stomach. How could I choose that our daughter was more important then our son? I felt like everyone forgot that he's out baby too and that we love them equally. Even a small chance is worth it, and it would be small, considering only 15 babies were EVER born ALIVE with full Tetraploidy and the longest living was only until 26 months up until this point. I believe all the cases of our Tetraploidy aren't reported though because I just found out about a child that is currently 8. Since we are approaching the midway point, and we are padded the first trimester, our son could make it to birth, whether he survives it is another story. Im currently speaking with another mother with a beautiful little girl whose right over 2 years old, who has the same type of Tetraploidy as our son. She doing well and her parents were told the same things we were, and she's living proof that surviving this is possible. She was on life support for a while, to where the drs told her she needed to say goodbye but they had faith and she came out of it, was able to go home with no breathing help. She has had a surgery and g tube, but she's doing wonderful and has been a true inspiration to me and has given me hope.
We went to the doctors two weeks ago and my cervix had already thinned out 8mm. Both babies were moving and growing at just the point they were supposed to be. At the most recent doctors appointment, which was actually today, he told us that the fluid increased in his neck area and that i thinned out another 2mm. Im currently on weekly progesterone shots and nightly suppositories to stop my cervix from thinning out and dialating. Our son is also starting to lack physical growth, measurements show now he's almost 2 weeks behind on growth that where He should be.
Two weeks ago he put me on bed rest, although at this current time bed rest is almost impossible because both me and my husband have to work to take care of our 6 month old, and try to prepare for the twins and save up so we can take enough time off work when the twins are born to be able to spend every moment our child is in this world with him. I worked all the way up to the morning my 6 month old was born. He was in the hospital 5 days, I returned to work on the 6th day after he was born. My husband wasn't able to take any time off, thank God we got induced on a day he was off. We have worked very hard to give our son everything he needs and would like to be able to do that with our twins too, however with our current situation, we want more then anything to be able to take off enough time that we woulda get to spend enough time with our little boy.
Despite how I don't really like to have to ask for help, during this very trying time, I find the absolute need to. This is what we are asking for help with..... living expenses when our twins are born so that if/ when our son (hopefully I'll deliver late enough that our daughter won't have to be) is in the NICU that we are able to take ample time off work to be able to stay there with our son, though we have came to terms with the fact that this quite possibly will be fatal to him, one of my worse fears is that ill have to go back to work as I did last time and I'll miss his last moments on this earth. Supplemental help so that I can at least go down to part time to help prevent a too premature birth and our children both having issues or not making it at all. Im not asking for people to support me while im pregnant, as I have absolutely no problem working, but the amount im working right now really takes a toll on me, especially since im supposed to be on bed rest. Medicines that I need during pregnancy to prevent preterm labor, which currently isn't covered by insurance as well as any medication for Jeffrey that will not be covered. Help for any medical bills or elective treatments that could help or prolong his life that he might need that insurance might not cover. Help for child care for our 6 month old while we are sitting in the hospital with the new baby/ babies. Help with any equipment he might need to make his life more comfortable. Help witj traveling expenses for specialist appointments. And finally, which we know is inevitable, we are just hoping it isn't going to be for a while, cremation and funeral services should we need them as well as helping us with time to grieve. There might be other things we need along the way, we've never had to take care of a baby with disabilities, but I can assure you, the money raised, if any, will go towards the benefit of our twins, more specifically Jeffrey, so that we might be able to be there constantly to support, encourage and live him and to help him, hopefully live the most fulfilled and most comfortable and longest life possible.
Granted there is still a chance that he will pass before birth, but since we are approaching our half way point, and we made it passed the first trimester, I don't foresee this happening. However if it does, the money would then be used for his cremation (I talked to the doctor about whether we could have the remains or not in the event that he would pass before birth and I have talked to Kelley Robb funeral home who will be helping us once/ if the time comes either way), as well as toi give us time to grieve. It will also help with the medication to prevent preterm labor as well as helping me to ease up with the crazy extent im working at this time. If this happens, anything that was bought for our son as a result of donations will be then donated to a facility that will make sure it goes to someone who needs it.
This is one of the hardest things my husband and I have ever had to go through. The amount of crying Im doing on a regular basis is crazy. I talk to my babies, sing to them.... I love them both tremencely. My perfect son I have at home helps me get through days when I find it hard too continue, he's my rock. I think my husband hurts more then he leads on, I can see the pain in his eyes.
Any donations to help us on this journey are truly appreciated no matter how big or small. I will be opening a separate account just for money and donations to go that we receive, so that it is designated to only go towards what it's supposed to. If you cannot help in a monetary way, please.... PLEASE keep our twins and our family in your prayers. We need prayers more then ever. Thanks in advance and I will be posting updates as time goes on.