Cerebral Palsy Carrots

The good news this morning from Baby Girl’s latest marathon of medical appointments is that she has gained more weight!  She is finally gaining weight!  She weighs 10 pounds and 9 ounces, which is like a miracle after four months at seven pounds.  She is at 1 percentile on height and weight, but at least we finally made the curve!  Lots of PRS babies are diagnosed with failure to thrive because they can’t grow without having enough oxygen, specifically because it affects the growth hormones and REM sleep.  This was exciting, to be sure, to see her weigh so much!  We are finally out of preemie clothes, and now also finally out of newborn clothes!  She also got her next round of shots, as early as they could give them, because she can’t have any just before surgery.

But then with the neurological testing, we got some bad news that we knew was probably coming:  she has “cerebral palsy due to lack of oxygen from a medical condition secondary to drug exposure.”  She passed the intelligence testing (like her sister!), and most of the arm testing to see where it is impacting her.  But she failed all of the leg tests and all of the balance tests.  She has had her brain scans and other testing, and we finally know for sure what the developmental specialist had already told us she thought, and what the hospital had warned us. She can still move them some, and will even stand on them if you hold her up, but that’s all and the other skills have regressed.  So now we are in a fight to save her legs, too.  Sigh.

They told us we need to get her in occupational and physical therapy right away, but that we would probably have to drive to Tulsa because the local ones are so full.   The good news?  Our favorite one is already coming to our house every week for Kirk and Alex!  We are grateful for her, and appreciate her good care of our family.  She is the same physical therapist that also worked with the Elgrens, and we are all fans of Miss Rebecca.

The other news is that her airway is not growing as fast as she is, now that she is finally growing.  She is being followed with xrays and other testing, and we are watching it closely.  She has started snoring again, which was pretty funny in Relief Society, except that it made me want to cry because I knew what it meant.  I wanted to shake her and scream “Noooo!” but all I could do was laugh and apologize for the noise.  I wanted to hit a pillow or the ground or just punch heroin in the face.  When your baby is in crisis, it’s easy to need something to blame, but even being angry at biological mom’s choices doesn’t fix anything.  The baby has also started craning her neck like she used to, trying to get air sometimes.  It’s so disheartening, because she was doing so very well for two whole weeks.

The pediatrician and specialists today talked to Ohio, and I talked to Ohio, and they know what’s going on, and we have a plan to re-admit her quickly if we need to, but we feel a million miles away.  They talked to us about how at some point we may have to just move closer to one of the two children’s hospitals that even know about PRS: Cincinnati and Salt Lake, which other friends of PRS kids have mentioned as well.  Today is not that day, but we know that may be a season in our lives if she does not improve.  Regardless, we will be going back, but waiting as long as possible because it means her body grows more and that is better, but obviously trying not to wait too long.  In the meantime, the baby can’t roll over anymore, is starting to struggle to breathe, and can’t even practice half the sounds she is supposed to be making because her lip is still sewed to her lip.

But she’s still alive.

Allegedly, we are getting monitors back, but we are still arguing with Medicaid.  They told the caseworker we were just on vacation and stopped by the ER!  Can you believe that? I am not joking. They said they had no idea she was sick.

What about her being born in jail without half her face?

What about being life flighted from Hillcrest to OKC?

What about being in OKC the first 51 days of her life?

What about our calls begging for monitors, for oxygen, for feeding tubes?

What about the life flight to Ohio?

What about the six weeks we were there?

What about the surgeries, more than I can count on both hands, or the big ones like tongue graft, or tongue-lip adhesion, or distractors, or airway studies? 

I want to ask the medicaid denial person if they know what it’s like to do chest compressions on an infant, or what it’s like to physically run an aspirating infant across the street from Ronald McDonald House to the ER on the other side of the hospital, or what it’s like to spend three weeks alone with a screaming child who has metal in her face and needs suctioning every eight minutes like clockwork regardless of how exhausted you are.  I want to ask them how a suctioning machine works without tubing, or how oxygen works without tanks, or how a broken face is supposed to set without the bandages she has to wear when she isn’t up and around?  I want to know if they know what it’s like to try and give oral medicine to a baby who can’t suck, what it’s like to catch an ear infection with a baby who doesn’t have a whole nose on the inside and so doesn’t get runny noses to warn you, or what it’s like to hold your baby down and turn screws to break her face in order to save her life.

Blargh.

It will work out, because we have good advocates on our side who are talking to them.  Ohio is even helping, saying she would have died if they left her here.  Eventually, upon adoption, she can be moved medicare instead, and that will pay for more than what medicaid is doing.  In the meantime, there are supplies she needs that we have to pay for, and so very much appreciate the help and support of our community in keeping this baby alive.  Our fundraiser link is HERE, and Nathan’s fundraising violin album is HERE (also available on Amazon), and we have other fundraising events planned – including the monthly “radio show” plays and an upcoming dinner theater event.  The most urgent besides current supplies is getting us back to Ohio again (and home) when she needs her next surgery, as well as expenses from lost wages (grateful to have been able to even keep our jobs).  Many thanks for those who have participated or helped in dozens of ways, truly.

That said, and as much as possible, we are making as normal a life as we can together.  For now, that means visiting caseworkers, scheduling termination hearings, and finalizing adoption names.  It means bottles and diapers and naps and finally sleeping through the night. It means drinking from a cup before you are five months old.

And it means trying carrots for the first time, cleft palate and all!


  

Mama’s Shoes

I worked hard the last two years, sorting through my mother’s things.  

I really have.

But the clothes, oh my goodness, the clothes.

When my mother was killed, we took two dumpsters of clothes to Goodwill.

I kept some things for maternity clothes, and then got rid of four bags of that last year when we found out it was Cancer causing the miscarriages.

That was hard.

Last winter I got rid of more of her summer things that I never actually wore or that didn’t fit, and that felt like an accomplishment.

But today I finally had a chance to go through the last of my favorite memory clothes… You know, the ones that don’t really fit and I am not going to really wear, but are ones I have specific memories attached with, even hugs that seem misty now.

It was time.

I was ready.

It stung more than I expected, but I finally dug out the last four bags of clothes that aren’t really mine and don’t bring her back.  Besides, I look like a clown when I try to wear her clothes.

I even got rid of her shoes, even the ones she was wearing that day, even the tennis shoes I always threatened to steal.

But they don’t really fit me, and they aren’t really mine, and she’s not here anymore, not like that.

Maybe that’s what makes it okay now.

I have a testimony now, that she is here, very much here, and she doesn’t need shoes to hang around.

  

Disaster Lecture

I spoke tonight in Norman about disaster relief, rescues, and emergency preparedness for FEMA and in behalf of the Mormon and Deaf communities, sharing stories about 9/11, Katrina, Joplin, Virginia Tech, and other disasters we have worked.  We spoke about minority communities, and how to educate them in emergency management and how to communicate with them during emergencies.  I shared about the home and visiting teaching programs and food storage in the LDS church, as well as our progress in the Deaf community with civil rights and things like the low frequency ambulances you can feel before you can hear or see, closed captioning for emergency broadcasts, and trainings during Deaf Awareness Week.  

I love these colleagues who have worked side by side for almost ten years now!  Bob is the emergency manager for Tulsa Public Schools, Sheryl represents the Muslim community, and my friend Tina hosts Temas en Tulsa and teaches at TCC.  Many thanks for the hard work of the Language and Culture Bank of Tulsa all these years!

   
 

Baby Girl’s Cleft Palate Cup

Because Baby Girl has such complications, including such a severe cleft palate, she has to learn to drink from this cup in the next three weeks, even though she is only four months old.

  

We started by just leaving it on her mat during playtime.  

As soon as she was able to pick up toys and put them in her mouth, we added a tiny bit of formula, because that’s how it works. She had to discover there was milk inside as soon as she got it to her mouth!

  

It has no spout because of the cleft palate (which means she can’t suck anything), and because of her upcoming repair surgery. They said because of the extra things they have to do because of her airway, she won’t be able to use a bottle after surgery.  That’s why we have to start so early practicing, they said, if we want to keep her off the feeding tube.

  

We want it to be easy and fun so that she is calm and comfortable.  Our speech path moved us two weeks ago from a sideline position to an upright 90 degree angle for her at home daytime feedings. This helped her get used to breathing and swallowing in that position before we moved to the cup.

  

It was a daunting thing, to teach a four month old who aspirates how to drink from a cup.

But we worked on one thing at a time: got the ng tube out, got up to full four ounce bottles, moved to upright position, and then played with the cup.

Do you know what that little smarty pants did?

  

She figured it out on the first day!

How crazy is that?

It’s hard work for her, so we only do two rounds on the cup before finishing with the bottle, but now that she figured it out we can build up muscles and tolerance.

  

I am so relieved! It’s one more miracle, one more hard task she has accomplished that will help save her life. She continues to amaze us!

  

We love her so much!

She’s working so hard to stay alive!

Birth Mothers

There are lots of hard pieces about fostering, things like little girls acting out abuse in their dollhouses, and little boys taking out their grief on each other, and little babies who can’t get the pain medicine they need because their mother was addicted the entire pregnancy.  There are exhausting things, like court dates, and caseworker visits, and – in our case – more than 23 specialists in and out of the home every single week (not counting extra therapies they get at school on top of that).  There are crises like the tears after visits and the tears when visits are canceled, and crises like sibling groups who come in the middle of the night with lice instead of clothes, and crises like shady cars driving by in the night slowly enough to take pictures of us as they pass.  There are challenges like different cultures, different food preferences, and different faith practices.  There are terrible things that come out of the kids’ mouths, screams that come in their sleep, and rocky relationships neither of you ever quiet trust because neither of you know how long you will actually be sharing a house.

One of the hardest things, though, has been this phase we find ourselves in, where the group of kids we now have are never going home.  Rights are being terminated, adoption paperwork drawn up, and visits shutting down.  It’s a bigger shift than you might realize, and if we are going to be honest then we would admit that we breathe a sigh of relief as we are released from all that extra work that comes with caring for someone else’s child.

And it is true, that after caring for that child for six months, or a year, or two, there is even greater relief – in a most selfish but very natural way – to find out the child gets to stay.

There is joy, even, to think of becoming a family and settling in and being done with the whole world revolving around court dates and travel authorizations and notarized letters for haircuts.

There is peace in knowing the kids will be provided for, that they will be safe, that they will be healthy and happy and well-gifted with all they need to make their life some kind of success story.

But there’s another layer, too, a darker layer that stings, an ever-present shadow that doesn’t necessarily haunt us but isn’t exactly comfortable.

It’s the birth parents.

Every foster family handles things differently.  In our own experience, a large part of how we handle the birth family depends very much on them.  One of the triplets’ has parents who can’t stay sober, and so visits usually get cancelled because the parents are using meth again.  One of the triplets’ has a mom that can’t stop stealing, and uses her body to pay for people to get her out of jail.  One of the twins’ has no problem telling everyone she meets that her mom is still in jail “because she made bad choices and locked me in the trunk of the car and still is using bad drugs.”

Those situations make it really hard to connect with the birth families, no matter how much we want to support or mentor or stay connected to them.

But the boys’ family has been an exceptional exception.

Regardless of the domino events that led to the boys being put in foster care, these boys are the only ones we picked out specifically for adoption and didn’t actually foster at all (except for while waiting for the adoptive placement papers to come).

It gives a greater barrier, somehow, to the events of foster care that they experienced, to the reasons why rights were terminated, to the tainting that comes from experiencing visit dramas and treatment plan failures that all have to happen on the dark side of the court room long before the sun shines through the windows of adoption six months later.

All I know is that since the difficult day of rights being relinquished, this mom has gotten her GED, and held down a job, and the family of the boys’ always respond on the private page where we update them, and work hard to work together to stay in contact with the boys.  They support our parenting, they appreciate any updates we give, and they remain appropriate and safe during interactions with the boys.  It has built a lot of trust with us, despite the unusual circumstances, and that’s why they get more visits than the other kids.  We could visit more frequently, even, except that we need the boys to attach to us for a positive and long-term adoption scenario.  The best thing about this mom is that she plays so hard with her boys, and I love those positive interactions for them.  That’s why we usually meet at the park, and that’s what we did tonight.

She took little moments with them, and she played hard with them, and it made my heart so happy to see them so happy and enjoying themselves… They truly appreciate these very sacred moments, and are careful not to waste them.


They played so hard!  They made me laugh so hard!

 

 


  

Kirk even showed off his physical therapy progress, and blew mom away by climbing the chain ladder!  All by himself!

It was a late school night, but I couldn’t bear to break them up.  I just played on the swings with Anber and let them keep going as long as I could, even after the sun had set.

 

Because what I understand is that there is a small gap between us, not a detrimental gap, but just a gap that just is, a gap that none of us can do anything about, really.

It’s the gap in our relationship where I am the wrong mom, even though they call me mommy now.

It’s the gap where I had other babies who didn’t live, even though I raise them now.

It’s the gap where they remember her, and think of her, even while they hug me sometimes.

It’s the gap where I remember our babies before they lived, even while I kiss these kids sometimes.

It’s the gap where our grief resides, contained now in healthy ways, but always present, even if not over-flowing.  We don’t pretend it’s not there, but it doesn’t really drown us anymore.  We have learned not to try and force it to go away, but also learned we don’t need to breathe it in freshly every moment.

Because it’s good and right and as it should be, that gap.

I think we would have fostered even if we didn’t lose our babies, because we had already signed up.

I don’t think we would have adopted, though.

So the loss of our babies was a gift to bring us these babies, really.

Do you see?

And without birth mothers, even the ones in jail, we wouldn’t have these babies.

So the mothers may all have their own stories, and all their stories are different, but there isn’t a day that goes by when they are not in my heart.  I think of them, and pray for them, and send them pictures.  I wonder about them, and check on them, and ponder what premortal connection we must have had, to work together the way we have done to birth and raise these babies.

That’s why we got the boys’ mother a gift last Spring, even if we are only just now able to give it to her:

 


It’s a necklace, and it says Birth Mother, because she is one, and it has the boys’ birth stones, and a little circle with the first letter of each of their original birth names.

 

She cried.

I felt shy, and forever awkward, and not wanting to be in the way of her relationship with the boys.

So I just stood back until my arm was on fire, and finally I put my arm around her to just hug her.

How do you thank someone for the gift of a child?

How do you love someone who has every reason to resent you?

How do you find paving stones to weave a path between hearts, to offer peace and hope of sealing, to deliver sincere gratitude for a gift no one else could give?

How consecrated is it to give up your child so they can have a better life?

How humbling is it to think that’s supposed to be with me, when all I see is chaos and failure and meager attempts at motherhood?

How can you love someone while taking away their child, when you understand the feeling of being willing to do anything to have them back?

We want her to know she is loved, and appreciated, and real to our family, and that we will help the boys honor her place in their lives, and that we take very seriously the gift she has given us.

Because her deepest pains are, to us, are two of our greatest joys: little freckle-faced miracles.

Anber Wins

Anber has gone a week without hitting or screaming, and did not run away when the triplets told her to (thanks, guys), so we got to have an Anber party (with a tiny snow cone) while they were grounded!

  

Cleft Palate Sippy Cup

Because our baby has a cleft palate, among other problems, she cannot “suck” – her bottle is a special cleft palate bottle by the Dr Browns people, and it has a valve in the nipple.  She bites it instead of sucking on it, and that’s how she gets her formula.  It’s one step ahead of an ng tube!

When she has surgery to repair her cleft palate, she cannot use a bottle afterward while it heals.  That’s bad news for a baby!  But they want to keep her off the feeding tube if they can, and so we have been ordered to get her started drinking out of this crazy cup with no spout:

  
It has a special cleft valve in it like her bottle, but a special rim to the cup as well.  So when she plays with it and puts it in her mouth like everything else she plays with, milk comes out!  They said we have five weeks to teach her – a four month old – how to drink from the cup.  How wild is that?

When the lid is barely touched, it opens the side and tiny drops of milk come out:

  
We have spent the last two weeks feeding her at a 90 degree angle sitting upright, so she could transition to a cup drinking position.

We were supposed to spend the next two weeks just letting her play with the cup like a toy, but have a tiny bit of formula in it just in case she figured it out.

And she did!

Right away!

It was crazy!

We will try to get a picture of her using the cup so you can see.