Sitting on the couch today watching TV, with the kids and husband, its times like that when my baby is content on my lap that it'll hit me. I turned to say something to Cody and ended up bursting into tears instead. To me I know my girls, they are in heaven growing just like Ellina, only I missing out on it all. I know they are happy and in good hands I just wish I could be part of it. The things that keep hitting me now are questions, Eliza is 19 months and is really loving talking to and "helping" with Ellina, I have to wonder if she would have been able to tell the girls apart. Would she have just been confused? And Gareth, he would have understood that there are three of them but would he have been able to know who was who? I don't know, I find myself having days that I obsess about everyone else's babies, I have a few triplet mom friends and I sometimes look at their pictures and cry, and then I almost feel like a bad person trying to get an idea of what I am missing by using someone else. I obsess over pregnant women, even though I don't think pregnancy is a good idea for us right now, it doesn't change how much my mind says being pregnant would help me heal. I don't really think it would but knowing that doesn't seem to help.
I look at Ellina and she is such a great baby, such a miracle. She was born at 25 weeks, behind in growth, and yet she breathed on her own and never got sick and just did amazing. That shouldn't even be possible, my theory was God knew I couldn't take any more. But then I see these families that took more and more and then I just feel, I don't know, afraid to mention how blessed I was that Ellina has done so well? I pray endlessly for my fellow TTTS moms, mainly that God will help them through this because I know its very difficult.
To my girls Emmalin and Ellianna, You family misses you and will always love you.

Hi, So I guess I'm just crazy busy all the time, The lat month was well insane. My daughter Eliza, is 18 months and got RSV, here Ive been so worried about Ellina getting it so I kept her home most of the time, and Eliza gets it, so when I took her to the doctor they wanted to admit her into the hospital, do breathing treatments etc. it was supposed to be overnight assuming she would be on the mend pretty fast. Well he just kept getting worse, as glad as I was that she was in the hospital through all this it was terrible, I couldn't bring Ellina into the hospital room and so I had to go out to breastfeed her, problem was we couldn't leave Eliza or Ellina alone, so we needed a third person with one of them as we switched, it was fine until one morning all the nurses were busy, they said sorry we don't have anyone to sit with her so you cant leave. Thankfully they finally found someone but not before I started to freak out that either my baby was gonna stave or I was gonna be turned in for leaving my 18 month old daughter unattended. And then their was the challenge at night. the first night I thought it was a given, I had to be home with Ellina so Cody had to stay with Eliza. Well all night long I didn't sleep at all, when I had left Eliza was struggling so hard to breathe and nothing was helping, I have already been told that sorry your babies didn't make it and I just kept thinking it was going to happen again. I kept calling Cody and when he didn't answer, (yes at 2 or so in the morning, why was he sleeping???) so here I was at home feeling helpless. And no sleep for me. So after that I just stayed with Eliza and got up in the middle of the night and went to Ellina, it was awful but it worked. The day Eliza got sent home, Ellina started having trouble, the next day she too went to the hospital, but only over night, we decided that the synagis shot to help prevent RSV, must have helped because she had to be on higher oxygen but other then that no fevers or anything, so we went home the next day...


But now, Three weeks later we all seem much better and I think its safe to say..... Ellina is done with oxygen!!!! yes it feels very weird carrying her around without an attachment but she is doing great, at home I have her monitored and I don't stress it so much when we go places because she is doing so well. So I'm really hoping that she doesn't catch anything and have to go back on.


Anyway, I took Ellina to Physical therapy yesterday, she did an assessment and thinks that the reason Ellina cant roll is because of her smaller leg, she kicks it like crazy but tires easily. So I was given a few exercised to do with her ore then once a day and she said I don't need to see her more then once a month. normally someone would be relived to hear that but for me I was disappointed I finally told her, actually I need help, I am too busy to stay on top of this every day and I just need a little help. So she agreed to work with her once a week. She thinks Ellina is doing actually very well, she is ahead in some things but has what they call gaps, because she can do some things but not the things in between. but we are hoping very soon she will figure out, given the things I was given to help her along

The Boys really love their cousins!!!

Sometimes a little too much!!!! But they tolerate it really well!!!

So day before yesterday we took Ellina to see a neurologist. I had asked for a referral about a month ago for more then one reason, Ellinas leg and foot that is way smaller then the other one was one reason and the fact that she is 5 1/2 months and still not rolling over, or showing much progress. When I brought her in I was allot less worried, she still doesn't roll but is getting the fine motor skills down well, she grabs at stuff shakes her toys, jabbers and at least tries to do the things that she is supposed to be doing.
The neurologist visit was very informative. I hope this doesn't sound offensive to anyone but I thought it was really neat that the doctor was deaf, she asked us to look at her while talking because she lip read. To me that is just amazing that even without being able to hear she could be a brilliant doctor.. Good for her! But anyway, she said that we not only have to adjust Ellinas age to her due date making her 5 month now, but we also need to realize that every hospital stay is a setback, being in the NICU 3 months, and then back for a week with pneumonia, and then back for 2 surgeries, (heart and eye). So putting those set backs in consideration she is actually not behind but doing amazing, she has great head strength and is just working away on the other stuff, although we agree that physical therapy is still a great option for her since it never hurts to help them learn stuff we do think she is ok. Also she does want to do an MRI to check for brain injuries from TTTS and being early, but wait till she is a year so that she can handle anesthesia a little better, I plan on playing that by ear.
Big relief there, my Ellina is just doing amazing, she coos and laughs and is just so beautiful.
Cody and I are doing ok, we still have quite a few bad days, I am friends with alot of other TTTS moms and sometimes its gets really hard, I don't know what I would do without them but I am exposed to more and more loss, it just kills me how many babies are taken by this terrible decease. So for my friend and family when you think of me please say a prayer for all the families that have lost and those who are still fighting for their babies.

I emailed her back and this is what she said:

I will talk to Dr. Walker & Paek and see if they have any insights. We are all very sorry for your loss and to know that you are struggling with the lack of answers. Perhaps there were deeper connections we couldn’t see that were to blame? Perhaps there was something else going on? It’s so hard to retrospectively piece the puzzle, especially when we didn’t do the ultrasounds.


I feel much better now, had a little time to cool off too and think. I know TTTS took my girls I also know that from the start my placenta wasn't healthy maybe caused by TTTS..? The girls cords were inserted wrong and were obviously still connected had they not been Ellina would not have been in so much trouble after their passing. I will always miss my girls and I will always search for answers, not necessarily because I should but because that is just me, how I am.
Emmalin and Ellianna, Mama misses you and will always love you. YES I have 5 kids I have a set of triplets and always will

patholagy report

I finally emailed the office that did my surgery to see if they could give me the report on their study of my placeta, I always just assumed there were connections that were missed, this is the email I got in reply:

Hi Mishael,

I have a copy of your pathology report and would be happy to mail it to you. The main reason we ask for placentas is to see if there are open connections, via air injection and see if there are any open connections—which in your case would demonstrate where the issue was that contributed to the reversed TTTS. However, no open connections were found. Triplet A was found to have 30% of the placenta, Triplet B 40% and Triplet C 30%. No obvious reason by inspecting the placenta why things worked out the way they did. If you want a copy of the report—just let me know where to mail it to…

I feel sick, I feel that I need answers ASAP, I wish I hadnt been so out of it and had them do autopsies. If the surgery did its job and my girls still had TTTS issues is there something they or at least I dont know about TTTS? Im feeling lost

Ellina

Just also wanted to say about Ellina, She is doing very well, still not rolling over so still behind but kicking those legs like crazy and pulling her pacifier out so she can look and talk to it=), or just so that she can cry so i will come and pay attention to her. She is definitely a fussy baby, but its ok I'm adjusting and so is she, we will probably be starting physical therapy for her within a couple weeks so hopefully she can get more strength in her shoulders and of course her little leg. She is probably gonna need oxygen for quite awhile still but its cool at least I know she is getting nice clean air all the time. other then that she is amazing, and love her more and more every day.
My son Gareth was in the store for me today and grabbed so bigger sized clothes saying that weren't they cute? i said yes but who are they for? he replied Emmalin, It breaks my heart but also warms it that my four year old wants so bad to include his sister that he never met in our family