Text Box: Text Box: Because we knew of Gemma's condition fairly early on in the pregnancy, 18 weeks gestation, we had some time to do some planning for Gemma's birth and death. We did a lot of research on-line and got many of these ideas from the tips page on the Carrying to Term web-site. We modified from there Http://www.geocities.com/tabris02/ Her birth plan: Our biggest pre-occupation in preparing for Gemma was her birth plan which changed dramatically over time, as we would go back and forth from aggressive care to comfort care only. I spent a lot of time researching her condition and discussing options with doctors and other health professionals. The slight glimmers of hope are what helped us through such a tough diagnosis. Although we ended up choosing comfort care, we never stopped praying for a miracle. They do come, just not always in the way we would have chosen. We have a separate link for her birth plan if you would like to see our final copy. Gemma’s Birth Plan Things for Gemma: For Gemma, we bought two micro preemie outfits with matching hats which we ended up giving to her sister's doll. We only did this because we were told Gemma would most likely be born still between 20-30 weeks. We also bought her two pink blankets, one which I now sleep with, which I sewed a heart on, and the other with which we buried her in. We bought her three other outfits, all in a regular preemie size. (We used www.Dillards.com) Two of them were gowns with matching hats, one was pink and one was white (in case pink wasn't her color). The third outfit Terry picked out himself at a little local baby store right after we got the diagnosis. It fit her perfectly and she wore it to the funeral home. She was buried in the pink gown and never got to use the white one. We also bought two types of molds. The first was a molding kit that made a mold in the actual shape of her hand and foot. I found this at both Walmart and Michaels crafts. The other kind was much easier to use and was also at Target. No mixing was required, you just pressed her hand down into the clay and baked it for 30 minutes. You can also get the air dry molds which don’t need to be baked. The other thing we got for Gemma was a comfy cozy bear by Gund. http://www.teddybear.com/. Our three other children all have one and we only thought is was fair that Gemma have one as well. I sewed a heart on the front paw which says, Gemma Forever Loved. We asked a friend of ours to be responsible for getting her stuff out of the suitcase once we were in the room. She took Gemma’s Puddin bear out right away and Gemma snuggled with it in our arms, before she went to go play with the angels. I cherish these items, and as odd as it sounds they give me comfort and make my arms feel as little less empty knowing our little gem has blessed them. Our other children: We also purchased some items for our three other children. We wanted to have a “present” for each child that Mommy picked out when Gemma was in my tummy. We wanted to get them something that they could have forever to remember their sister by. I purchased matching fabric for each item and had embroidered hearts made with the logo, "To- _____ Love- Gemma". I then sewed the hearts on the items. Shane got a big Elmo, Ryan got a Comfy Cozy Lamb and Juliana got a topsy turvy doll. After sewing the heart on the little doll for Juliana, I decided that she needed something more durable that would withstand being played with and something that she could cuddle with when she missed her sister. I ended up getting her a Corolle doll only because I read numerous reviews on how well they held up. I’m glad I did, because she sleeps with her “Gemma doll” every night. I found the best deal at: http://www.kidsurplus.com/corolle.html We tried to include the children in the pregnancy as much as possible. One thing that we do each pregnancy which may sound bizarre is allow the children to color on my big belly with washable magic markers. The boys enjoyed participating in this as much as their big sister, and by doing this I felt that we were sharing the joy of a new life with them. Gemma loved her “pictures” and would usually kick up a storm! I’m not sure how much the boys understood how much was going on. Neither one was talking at the time, and honestly, I think they would have been more surprised if we would have brought a baby home from the hospital than a potted plant and lot of tears. I think what was the hardest on them was their schedule being thrown off while Mommy was recovering from the C-section. In the end we decided only to include Juliana in Gemma’s actual birth and death. This was mainly due to the fact that they were so young and would have posed a risk being in the recovery room after surgery. They were able to have me in a regular post-partum room immediately following surgery, but I was still hooked up to IV’s, monitors, catheter, etc. Since we were unable to include them in her birth, it didn't make since to include them in the funeral. Juliana was able to see Gemma right after she was born and she knew exactly what was going on to the capacity that a four year old can. During the pregnancy she would tell me when she had heard enough and she would give me cues as to how much she could handle. At first she was fine with Gemma going to Heaven, but as soon as I mentioned that Gemma may “die”. She looked like she was ready to cry and said, “No, No, Mommy, not like Jesus!” For a moment she thought that her baby sister was going to be crucified to cross because that was the only context she had ever heard the word “die”. I quickly explained to her that her little sister would not die like Jesus died, but I learned to be sensitive what she could and could not handle. The black dress Never in my worst nightmare did I ever imagine I would have to be shopping for a dress to wear for our daughter's funeral before she was even born, and never did I ever think I would ever have the strength to do such a thing. The truth of the matter is, is that I didn't. There were times during the pregnancy when I was truly being carried and this was one of those times. We (I) had decided that Gemma's funeral would be a celebration of her life and that in celebrating her life I would ask everyone to wear pink. I took Juliana with me to the mall to look for a dress about two weeks before she was born, once we already had the date planned. I barely squeezed into the dress which was 3 sizes bigger than my regular pre-pregnancy size and I still wasn't able zip it. I ended up exchanging it the day before the funeral for the same dress, two sizes smaller. Luckily my milk had dried up by then. I found a black dress with pink bows and a black dress with white polka dots and pink ballet slippers on the collar for Juliana. We even found a pink tie for Daddy which we got him to wear! We used this as an opportunity to have a fun little outing while Gemma was still with us. We shared hot pretzels (a very special treat) and saw the high school football game on that way to the car. It was Juliana's joyful nature that keep me going at times. At this particular moment, I had forgotten that our baby was going to die as, Juliana exclaimed, "Mommy, look at the Circus! I guess she had never seen a high school football game before! A letter to waiting friends and family during delivery: We also wrote a letter which was read to family and friends while Gemma was being born. About two days before she was born, we decided to put something together because we had no idea what the outcome would be and we desperately wanted all of our family to know that we wanted them there to celebrate her life, even if she had already passed. We knew this would be hard on our folks and I felt incapable of verbally expressing this before she was born and was unable to admit out loud how short our time with her may be. The Letter C-section vs. natural delivery: This was a big issue for us and the final decision was based upon our ultimate goal of a live birth. We wanted to do everything we could to have Gemma born alive and spend as much time with us as possible so we spent a lot of time researching, asking questions, and praying for God to give us clarity on this issue. For quite some time this was not a clear cut decision and there were initially reasons for attempting a natural delivery. We didn’t know how hard to fight for her to be born alive and we didn’t know whether or not we wanted to put me through major surgery to achieve this goal, or whether or not it was even necessary. We believe in a merciful God who loves all of his children, however we believe that there are special graces given through the Sacrament of Baptism and we wanted desperately to witness our daughter receive the Sacraments and we wanted to hold her while she was still alive. I had read one study in which babies with trisomy 13 and 18 were attempted to be delivered vaginally, 50% required a c-section, but the other 50% who didn’t have problems with the attempted natural delivery, did better after birth than those born via. C-section. This makes sense because babies born vaginally have the advantage of having fluids pushed out of their lungs when they go through the birth canal. Typically c-section babies need to be suctioned and some babies can have respiratory issues at first and need special treatment. Since time was so precious to us, this was one reason why we considered a trial vaginal delivery with monitoring. We prayed hard about this one and at the end our answer came very clear. It was actually delivered via US Postal Service after we joked about how we just needed God to send a letter. A man that we didn’t even know felt the need to send us a copy of the importance to “go to any length to ensure that your child is baptized,” for us this meant having a c-section. We also got confirmation from both the OB and the perinatologist that this was the best chance for a live birth, and if her kidneys were to rupture it could cause problems for both of us. This is a tough decision that many families with trisomy 13 and similar diagnosis have to face. My only suggestion is to pray for clarity and God will reveal to you what is the best for you and your family. Regrets: Now, almost five months later, I can honestly say that I have few regrets, most of which are pretty minor. My biggest regret is not being more clear to the nurses in the hospital about our desire to relay information to waiting family and friends. Apparently everyone was in the surgery waiting area on pins and needles and when they asked what Gemma’s status was (whether or not she was born alive) they were told that we would tell them ourselves. I do not blame this on the hospital staff, but rather on me for not being more clear. I did say at one point that I didn't want them to bluntly state that Gemma had “died” in front of Juliana and the nurse responded by saying that she would just let them know that we would tell them. I assumed she meant that she would only do that if she died, but either way I wish I would have told her to tell them what was going on, which was that Gemma came out with a faint cry and a very faint heart beat, but at the time she was alive. I do regret having an amnio. I have now heard of quite a few women loosing healthy babies because of this invasive test. We would have had just as much information with repeat level two ultrasounds if not more information, because we would have seen a fetal cardiologist. It was also painful and simply not worth it. I also wish if someone would have told us that you are suppose to wait 6 months to a year to conceive another child after a C-section. My jaw dropped when they told me this upon discharge. I even found some sources on-line that suggested waiting 18 months! Some doctors however recommend three months. I also didn’t know that I would have to wait two weeks to drive (none of these things would have changed our decision, but they would have been nice to know.) Also, multiple c-sections can be dangerous. Our doctor has done five and I have heard about someone having eight, but unless we have a VBAC our chances of having fourteen children are slim. We still hope and pray for as many children as God will bless us with. There is truly no greater gift. Another thing I regret is not practicing the hand molds. They turned out OK. Terry and the nurse did a good job, but it was trickier than expected and her little fingernails were left out, although you can see every knuckle and every cute little wrinkle. I also wish if we would have not waited to do the moldings. Her hands became very stiff and hard to open up. I wish I would have given instructions to the funeral director NOT to wash anything. I wanted any blood stains to be washed out by me if I decided to do that. He took her blanket to the cleaners and they got everything out 100%. I wanted even a small stain, to remind me that she was placed in the blanket right after birth. I have also heard horror stories of babies being cremated in their clothes with their stuffed animals, so it is always best to write out what you want the funeral director to do with your child’s things in advance. I wasn’t at all prepared for what would happen to our little girl’s body after she died. So many people encouraged keeping her for as long as we could, yet never explained what it would be like. All I can do is relay our experience. For us, after Gemma died she was no longer there. We were left with a very sick little body which was hard to look at. We could never have prepared ourselves for looking at her omphalocele, which thank goodness we didn’t do until after she passed. I don’t regret studying her little body or keeping her there for five hours after she died. I just wish if I would have known what was going to happen to her. She quickly became hard, cold, stiff, and very purple (I guess I forgot that from science class). Her body was lifeless and she was NOT the cuddly little newborn I was hoping for. For some reason I was expecting her to become like a doll, instead she just seemed very dead. We were told it would be very difficult for the funeral director to come take her body. I was actually relieved when he came. I had waited to call until a friend got off of work, but we were ready much earlier. We visited Gemma several days latter at the funeral home, and I’m glad I did because it made it clear that she was too sick to live and that she was now longer with us. One last thing I wish I would have done was to print out or order her prayer cards myself. I did the funeral program and really liked it, but just picked out prayer cards from the funeral home and they made a mistake and made up ones with a baby and a teddy bear. This was a very small thing, but it would have been nice to have the picture and prayer I wanted to give out rather than our daughter’s info and a photo of a baby. Things I wish I would have known or glad I did: There were some things that I learned after Gemma died that I wish I would have known and there are things that I am glad that I did know. One thing that I’m glad that I did was ask for a 4D ultrasound on a DVD. The peri’s office has a service for $300+ or so where they create a DVD of your baby for fun. I just called and asked and told them my situation and they billed insurance! :-) It was beautiful and I’m glad I have it. I didn’t know at the time that I could have held Gemma at the funeral home. I could have, but I guess I was scared and just thought that I wasn’t allowed. Looking back, I don’t regret not holding her, I just wish I would have known that it was an option. All I would have had to do was ask. There was a rocking chair in the room and they prepped her for us to view her, so there was probably no reason why I couldn’t have. I don’t know how that would have been, or what I would have chosen at the time. At a SHARE (infant loss support) meeting, I learned that we didn’t have to have her buried in a plastic casket. We were told at the funeral home that was all they had for infants. Supposedly you can order anything you want on-line and they have some really nice wooden ones in Atlanta, GA. You can have them flown anywhere you want. I don’t think we would have wanted the added expense, but I would have rather made the decision myself to have her buried in a plastic casket. I also wish I would have know how bad the bill was going to be for the obituary in the local paper. The funeral home took care of everything and sent us a bill. Their services were free, we just paid for things we purchased like prayer cards. We knew the obit would be on there, but we weren’t prepared for it to be our biggest expense besides the plot and stone. I believe it was about $250 and heard they are around $850 if you add a photo. We wouldn’t have changed anything, but I would have rather not been surprised. Someone in the SHARE group also shared how they brought a infant car seat into the hospital room and the father placed the baby in the carseat and walked with the funeral director out to his car. They wanted to know that their baby was going to be treated with dignity and respect and they wanted know how she was going to be transported. To this day I have no idea how Gemma was transported. I think I would have felt better had she been privileged to ride in the same carseat as her siblings, as silly as that may sound. I wish I would have created a list in advance for the funeral director of things I wanted him to do or not to, a sort of “death plan”. I focused so much on the birth plan, even after knowing she was going to die and just one quick visit with the funeral director. One visit was more than enough, but he could have used our wishes in writing. The Funeral: We didn't do much preparation as far as the funeral itself is concerned. We did meet with our priest a few times and it was actually his advice not to dwell on it while I was still pregnant. We tabbed a few pages of the bible looking for appropriate reading. I thought of making Holy Cards of St. Gemma to set out for people to take at her funeral, but never got around to it. I wish if I had. We picked out what we wanted from their fairly limited selection at the funeral home several days after she died and we didn't get what we ordered. The other thing I did in advance was prepare a letter for family and friends to read at the funeral. I had worked on the letter using a sample from a Carrying to Term which I can't seem to access anymore. The original letter was written by Brianna's parents. Letter for Family and friends Preparing for Gemma