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

What a day! To start with I finally got Cody talked into going to the doctor to see if he can get something antidepressants or something. He has just really been struggling with everything and I honestly feel like he is just depressed, the kids drive him crazy when they talk and he sleeps allot. I kept asking him if he wanted me to go with him and he said no, so with the risk that he would go to the doctor and say I'm fine, I well agreed to let him go by himself, come on I would have had to find a babysitter for the little girls and get up super early to go to town with him. So anyway Cody called me after his apt and says that the doctor gave him a 2 weeks perspiration and wants to see him right after that to see how hes doing but really feels that Cody should go to counselling and because it wasn't coming from me Cody agreed with him! Its funny that I'm exited but honestly I love my husband so much and I cant handle him being this way we are both such a mess but have such a different way of dealing with it. I tend to spend way to much time on the computer talking to other TTTS moms.

Anyway I just got off the phone and the phone rings.... Ok I guess I have to tell you a little more first to explain. back in June we decided to have our baby angels cremated because we couldn't get a funeral together we couldn't get anything together it took me forever to call the funeral home and tell them and thankfully they set a time for us to sign papers or we would have taken way longer, this isn't something I thought I would do and it makes me feel like such a terrible parent for not getting right on it and taking care of all my babies but I do honestly believe that they are in heaven and so their bodies are just that, bodies. So they told us it would be a little over a week before we could pick up their ashes. when the time came that we knew that they were ready for us we couldn't bring ourselves to go back to the funeral home. Ellina was still in the NICU and we were really consumed by her. Then when we got home I planned on picking them up when I went down to Missoula for appointments. It just didnt happen (again I feel terrible) come on its been 7 months! that's just excessive. So the other night I decided I would e-mail them and have the girls ashes sent to me. when it is late I am emotional and seem to be able to know exactly what to do, if I think Ill do it in the morning it doesn't always happen. Well Ive been waiting for a reply and not getting any. So today, I get this phone call, its the funeral home he said he just saw my e-mail and says I'm holding the urn right now. I had to stop for a second because I picture my little babies. He said no problem that I had waited and he would have it mailed right away. I got off the phone and well I just miss my girls I'm glad I will finally have their urn with me and now I need to find a nice urn for them and eventually have them buried at the cemetery.

We decided to do a small memorial service for them along with a baby shower for Ellina, we wanted to have both right away but Ellina wasn't able to be going out allot for quite awhile and now she will do fine if anyone would like to get her anything I am registered a little at both Walmart and Target