Winter update

I am doing fantastic! I feel like a normal person, like myself. Recently, I have enjoyed sleeping through the night :D, cooking dinner for friends, making peppermint marshmallows, neighborhood runs, wearing red lipstick & heels, wine nights with girlfriends, taking the girls to see Christmas lights, & caring for OTHER people! After about a year hiatus (because I was so sick/tired/bedrest through my pregnancy), I have finally settled into a doable weekly cooking & cleaning routine, and that feels amazing. I feel like I can do my life & then some :).

Audrey is so fun. Everyday is a new skill. She is close to crawling, & is always on the move! She loves to giggle, loves her daddy, & loves bananas and sweet potatoes.

Evangeline is precious. She loves people & loves to smile. She squeals with delight when she gets excited. Her favorite is to watch momma dance :). She looooves her sister, loves touching her, loves watching her; Audrey doesn't take much notice of her though, it's cute. Developmentally she is behind, far behind Audrey. It's really become apparent in the last 6 weeks. We are working on rolling and sitting everyday, but she just doesn't have the strength at this point, which was my fear. It's all relative, right? I'm just so thankful everyday that she is alive, and while I'm disappointed that all her complications really are effecting her development, it doesn't bother me too much. I figure she will develop skills slower, but eventually get there, and if she doesn't, we will love her just the same. We have a developmental therapist coming to work with her every month, and I work with her on skills everyday. She is still eating well and happy as a clam. She is growing slowly, and I have accepted that she will probably never, "take off", as her doctors told me she would. Her body can't take on too much too fast, and so she will likely never grow like Audrey's body can grow, but that is what is GOOD for Evangeline :). It's hard for me for my identical twins to be so different, because I know it's because of that damn TTTS. At the end of the day, I rest in the sovereignty of a good, loving & personal God

...(which I am just realizing may sound confusing/idiotic in light of the recent tragedy which is on all of our minds, and I wrestle with it too but would be honored to talk more about that elsewhere if you're interested in theology).

 Happy Holidays!

7 months

Daddy says, " they look nothing like you, but I think they get this look from you" :/

beginning the road to recovery

 Yes- I love my girls, yes- I'm thankful, yes- it has been the most dread-filled and dark year of my life. Recovery from the trauma of one's story is the most important/ significant part of the whole thing. It is important to me to post my complete and true story so that my other ttts/nicu mom readers can feel less alone/ crazy in their journeys to recovery.

 I have been treading water/drowned for the past 6 months, and feel like I can just now, maybe, come up for air and begin to do some much needed self-care. I have been functioning out of trauma for too long, and am so thankful to finally have some of the mental/emotional/physical space to begin to face it. It was an UGLY summer, I mean you're lucky I never left the house ;). I have been angry, QUITE angry about it all; hypervigiliant, hyper controlling, hyper anxious, crazy, mean, hopeless, helpless, lonely, terrified, confused, and never so stripped of coping skills- depressed & traumatized. I have never seen myself pushed so far, so hard- it scared me. The sadness is coming...it is always under the anger. It is much easier to function with anger than sadness though, and man have I had to be high-functioning, no time to collapse in tears!  It is time now to grieve, engage, reflect, and accept my pregnancy story. It will impact me the rest of my life, most tangibly in my and Ryan's decision about a future pregnancy.

As a trained counselor, I believe that grief/feeling is my road to freedom, primarily feeling the loss and sadness in order to move toward acceptance. Aside from counseling, and journaling, I think returning to the hospital is an important piece of my healing. It puts a knot in my stomach to think about entering those sliding doors. I spent every day for 3 months at Baylor All Saints (ante-partum and nicu), so it is the most tangible symbol of my pain/trauma. When I think about the room, the window I stared out of, the chair I sat in, the smells, the sweet nurses, the halls I paced, the popcorn machine downstairs, the garden I walked in, my daily tv shows, going to bed alone, the sounds of the monitors, I tremble in fear and feel literally sick. If I can go back "in the light of day", I think it will become less scary for me.

Looking at pictures is another point of avoidance for me. There are pictures of Evangeline especially that I cannot look at for more than 2 seconds. I think spending some time with the pictures and allowing myself to feel what comes up when I see them will be an important piece of moving toward acceptance as well.

This is right after my c section, I hate that I had such minimal contact. Their skin was underdeveloped and so it is actually painful for them to be touched.

Growth restricted babies have that freaky alien look because all the blood goes to grow the brain before the rest of the body, it really scared me. 

I remember thinking her head was the size of a small apple, I was worried I would break her if i sneezed.

I think she had 5 needles in her when she was sick with NEC, I wasn't sure she would survive.

I thought she looked dead sometimes and had nightmares about it often

God comforts the broken-hearted. In order to survive, I have not been broken-hearted but angry and demanding toward Him. An angry and demanding person doesn't leave much room for dependence on God, and so we have been quite distant. In my humanity, it has been very difficult for me to believe that God is present and loving, and see his grace toward me. He always gives us a choice to chose Him or not, and I have chosen, not. Thankfully, His commitment to me is not based on anything I do or don't do (but is based on Jesus), and so He has not left me, and has still been merciful and patient. As I am thawing and moving closer to a place of broken-heartedness/ sadness, I hope to move closer to Him and desire Him more.

I would love to be able to use my experience "give back" and care for other nicu moms in some capacity- maybe lead a support group.

I hope this post encourages other nicu/ttts mom to engage in their stories and move toward healing. It does take take time & energy, but it is worth the freedom from depression & trauma. I also hope it helps other mom to feel less alone in their struggles.

Thank you for letting me share with you!

evangeline then and now

then

Diagnoses:

- Twin to Twin Transfusion  Syndrome

- Intrauterine Growth Restriction

- Prematurity

- Extremely Low Birth Weight (SGA)

- Necrotizing Enerocolitis 

- Severe Anemia 

- Oral Aversion

Follow ups: 

- Sacral dimple ultrasound, Hip ultrasound, Opthamologist, Feeding Therapy

now

Diagnoses:

- Tiny & perfect!

Follow up results:

- Normal!

ugh. i literally have a physical response when I look at those pictures. i am just now beginning to have the hope, time & emotional/mental energy to begin to recover from the tidal wave that was my pregnancy and post partum experience. however, I am SO thankful to be here and not there! Evangeline whose name means good news/gospel has revealed nothing less as our friends all over the world watched and cheered for this little miracle. today i am so incredibly grateful for how far she has come! i truly cannot believe how well she is, and i am so proud. God has been so kind to our family and shown us so much about His grace and faithfulness (as i bucked & wrestled with Him, i might add) through Evangeline. He has blessed us through you, thank you for checking in and thank you for your prayers and love! :)

6 months

God's faithfulness

Ryan baptized the girls today, which was so special. It was such a sweet reminder that they are in the hands of Jesus and they are His children first. We are so thankful to God for his revealed faithfulness to the girls in utero, in infancy, and his promised faithfulness to them in the future.  

Audrey's dress was made by Ryan's mother for her granddaughters.

Evangeline's dress was made by my grandmother, Audrey, 30 years ago for me and my siblings.

Heading home with our heads held high

The Anderson family is returning home new and improved! We entered St Louis in a state of crisis, but are leaving with a renewed sense of hope and calm.

We spent our 6 weeks here getting feeding therapy for Evangeline at Children's Hospital, and counseling for mama! It has all been a huge success- I cannot really believe it. Evangeline has vastly improved. Her treatment consisted of giving her positive feeding experiences in order to help her unlearn her association between feeding and  pain/discomfort. It worked. It took about a month to really extinguish the old behavior and replace it with the new learned association/behavior. Now the kicking and screaming is a distant memory :).

The biggest things we did to give her more positive experiences were to reduce the nipple flow to the slowest flow out there, which is Dr. Brown's preemie nipple- this helped her to feel a bit more in control. We also limited her feeding time to 30minutes (I was spending at least an hour). Additionally, whenever she started resisting or fighting the feed, we did not engage in the power battle, but just stopped. This was terrifying at first because she was not eating nearly enough (in terms of what the nutritionist said she needed), but the feeding therapist was focused on quality, not quantity (so scary and hard to trust she knew what she was doing!!). After about a week, she started picking up her ounces, growing again, and learning that feeding was maybe ok after all. After a month, she was feeding smoothly sometimes in only 15minutes! She went from doing 13-15oz/day to 20-24oz/day. Im so thankful for our feeding therapists at Children's!! I hope this can help other moms out here!

Im doing better too! Really for the first time, I have hope that we are going to make it through this. I have been working through some PTSD and PPD with my counselor and it has helped so much. At 6 months, I finally believe that Evangeline is okay (just tiny)- man, it took a lot to get here!

I still have infant twins, and so it is still hard, but much more manageable. The clouds are finally parting! Thank you for checking in and praying for us! Thank you to my parents for hosting us and making it all possible to get the help we needed!

5 months

Evangeline- 7lbs 15oz

Audrey- 12lbs 141/2oz

oral aversion

I am so thankful to finally be getting some help and intervention for Evangeline.

The poo hit the fan around their 4 month mark as the girls were each getting stronger, & more opinionated against feeds. I was spending at least an hour battling each girl to eat 5+ times a day and losing my mind. E was barely growing, maybe an ounceish every 10 days and I felt she needed immediate intervention.... something had to change. All three of us needed help, so we decided that the best option for us was for me and the girls to go back to my home to get second opinions, and help from my family (and my dad who is medically connected) so that I could catch my breath and we could put a plan together for the girls.

We went to Childrens Hospital to get a second opinion from a team of feeding therapists. After observing her, they agreed that it was most likely an oral aversion, a psychological/relational issue- perfect.

We also got a second opinion from a GI specialist, who after listening well about her history and EVERYTHING I had already tried, agreed that it was not a medical/physical issue. She wanted to do a swallow study, take some x-rays, and do some blood work just to be sure we were not missing anything and everything came back normal.

Come to find out, long term NICU babies are at risk for oral aversion because of the oral trauma they experience immediately after birth and throughout their stay. Evangeline had continuous negative oral experiences in the NI. She was intubated for 6 days after birth and then again for 1 day with her infection. Her infection presented as a huge swollen gland on her chin that drained through her mouth. Additionally, she had a feeding tube in her mouth for most of her stay. I have exacerbated the issue by force feeding her because I am desperate for her to grow and thrive. I hated this but felt I had no other choice. Here is a chapter on oral aversion.

SOOO... we will be staying in STL a few weeks because we have a great treatment team here. We will be doing intensive feeding therapy several times a week and may have to give E an NG tube if things don't pick up quickly because she cannot afford to lose or not gain...

Audrey is also having the same feeding issues, she is just not as critical so she is less of my focus. I am hoping that I can use the help we receive in therapy to treat Audrey as well....If need be,  I'll have to start therapy with her too...

The girls reached the dreaded 5lb difference. I don't know why this number is so agonizing to me. Each pound feels like defeat, like TTTS is still winning. ugh.

Jesus help us! Im so tired of it being hard, but thankful to finally be getting the help I have been wanting for months!

...I hope this post can be helpful to my other TTTS/preemie mom readers who can't figure out why their babies won't eat!! Stop force feeding before its too late.. :\

4 months

First time noticing each other

more prayer for Evangeline..

Evangeline is really struggling to eat and grow. She is 6lb 5oz and 31/2 months old. If she continues at this rate, she will be so developmentally behind. She struggles through almost every feed. We have been trying to figure if the problem is neurological, mechanical, GI related, reflux, taste preference, over stimulation, nipple type, personality, etc. We are constantly troubleshooting and trying new things to help her to thrive, only to be disappointed over and over. Additionally, we are having to start partial formula because my supply cannot sustain them both at this point- and she HATES formula (I have tried several types); screams, kicks, and throws it up. I have had all kinds of people out to evaluate her, and at this point no one really can identify anything definitively. Some say that it is just her body after all she's been through, and there is nothing we can do. Others say that there is a missing link in her care, and if we figure out exactly what her body is needing, then she will take off. At this point, she is cognitively and socially on target, which we are so thankful for! Please pray for wisdom for me to know how to care for this tiny girl, and that she would just freakin eat and grow!

Audrey continues to coast through life like it ain't no thang.

You can imagine how I'm doing after the past 7 months, pray for me.

If you have had experience with this, or have any thoughts, please let me know! I am seriously desperate enough that if you told me to bop her on the head 3 times with a wand before every feed, I would probably do it. Thank you thank you!! I'll keep you posted on her.

3 months

Audrey- 9 1/2lbs

Evangeline- 6lbs