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

So we are home now and Ellina is doing great, she did really well with the surgery, came out of anesthesia ok it took about 5 hours till she was ok enough h to eat, poor baby she was all out of it but couldn't suck and hadn't eaten since 5 that morning, her surgery was at 9 am. Anyway we see the eye doc on Mon, as far as he could tell it went really well I'm thinking we will know for sure how she did with it when we see him again. It was nice seeing the NICU doctor again, she is the same doctor that had Ellina when we had to go stay in the Kalispell after we left Missoula and Ellina got sick again, she is a great doctor, but she worries so much, last time we were there it was just so hard for me to be back in the hospital after going home. This time it was great we were only there for one night but I could let her know all my worries, Why is she still on oxygen? What if she has brain damage that we don't know about? Anyway we did a chest x-ray and although her lungs look way better there are signs that she will still need a tiny bit of extra oxygen. So I feel much better with that. WE also did a brain ultrasound and it looked very good, I still am going to get a referral to a neurologist and see about getting an MRI to find out if there is something that didn't show up on an ultrasound.
Other then that we are doing pretty good, It was really hard on Cody when I told him that Ellina needed surgery I think we are both sick and tired of worrying about the our survive, I tend to obsess so much more then I did with my other kids.
I still miss my babies like crazy, sometimes nothing seems right, we are getting close to about a year when we found out we were having triplets and although I thought that the chance of them all surviving wasn't that high but at the same time I didn't really believe it, from that point on I planned that next year I would be crazy busy with three babies, my daughter Ellina is so adorable and I just know my girls are in heaven charming everyone up there with their smiles and cooing and talking their own language

So I am sitting here in the hospital waiting for Ellina to get out of surgery, yes its crazy and last minute but... I'll start from the beginning. Last week Ellinas eye doctor's office called me and said that even though he said he wanted her back in six months he realized that he shouldn't wait that long due to the fact that she was just so little when she was born. So they set up an apt for next month. Then this last Monday they called me and asked if there was any way I could come down, I said no is something wrong? no but the doctor would really like to see her asap, maybe Wednesday? I said ok and on Wednesday morning it was snowing like crazy, everyone is staying off the roads so i called and rescheduled, I'm not worried the nurse said everything was fine. Not long later i get a phone call this time from the Doctor, he asked if there is any way I cold brave the roads and come down. Explaining that there was a small undeveloped spot on Ellina's eye that he had thought was no problem, then had been rethinking so he did some research and came to the conclusion that until that resolved she needed to be followed every 4 weeks. And it had been about 4 weeks creeping on 5 weeks, he just didn't want to wait any longer. So i told him I would try and ended up braving the roads the next day, yesterday. the eye exam was pretty normal, except it seemed to take him a little longer, like he needed to take a second and third look at on e spot. When he finished he sat explained that he was ready to go ahead with laser. Mainly the one eye needs it because of the one undeveloped place was still the same and she has PLUS decease here's and definition of plus disease: PLUS disease is a complication of retinopathy of prematurity. In PLUS disease abnormal blood flow to the retina causes the blood vessels on the retina to enlarge and become twisted. PLUS disease is a sign that the ROP is worsening and may require treatment. .... So he decided to treat her and right away so they put her in the NICU (I know just a little old for that but her NICU doctor wanted to see her) last night just to get a baseline on her vitals etc and the had the surgery this morning, which the Doctor just stopped in and said it is done and looks like everything went well. they should let me go in in a few minutes so I have to get going but I hope that explained a little better.