LL Cool Baby

LL Cool Baby was hard to care for and hard NOT to fall head over heals in love with.  He came to us at 2 weeks (after NICU).  By 4 weeks he was re-admitted to the hospital with a major UTI (into his bladder and kidneys).  And by 6 weeks he was starting with upper respiratory and reflux issues.  Yet he was growing and developing (slowly) and just look at those cheeks and the twinkle in his eye.  He had us all wrapped!

Unfortunately, his health didn’t get any better as the girls started into school for the Fall and I started chauffeuring to after school activities.  Development delays were in full bloom.  (He was born at 35 weeks.)  I kept thinking surely it would get better. WE (the Doctors and I ) would figure out what his underlying health issues were and fix him up and we would move on down the road.  But that didn’t happen.  Instead it was a constant stream of Doctors appointments and ER visits.  Medicine prescribed and failed.  Virus they would say.  Breathing treatments.  And through the entire time, he kept getting worse.  He sounded like Darth Vader on a good day.

The baby that could be soothed if distracted or held, couldn’t be soothed anymore.  He would go into fits of rage and be inconsolable.  This would happen several times a day for up to an hour each time.  The baby that we would get smiles from, who was close to rolling over,  was grabbing at toys and swinging with Gregg, was miserable.  And the worst part was that I didn’t know how to help him.  Medical professionals were throwing out theories but nothing was helping.  His oxygen level would look normal when tested so he must be just a ‘fussy baby with a virus’.  ARGH!

Then one day in early December I had a revelation.  LL and I were finally at the Pulmonology Clinic. (2 months wait list) Of course, when we arrived at the Pulmonologist, everyone was concerned about his breathing.  (duh…me too) Medical professionals are swarming around us to get him a breathing treatment and take his puls ox.  And then I made the fatal mistake…I told them he had Rhino Virus.  And then all they could think about was Rhino.  We were in that examination room for 4 hours.  Two things came out of that exam room:  a cool nose sucker and my realization that I had to let LL go.  He had become 100% of my time.  And while I loved him and wanted to advocate for him and help find a diagnosis, I was neglecting myself and my family and I needed to advocate for LL in a different way.

There are different levels of care within the foster care system.  (Basic, Moderate, Specialized, Intense)  We are ‘basic’ level care home.  

LL had exceeded the basic level of care and needed to be moved to a moderate (preferably medical) home.  When we got home from the specialist office, I called the caseworker and yelled ‘calf rope’.  Then I proceeded to write and email to formally request his removal and re-location.

calf-rope:  to give in, surrender

When i was little, my dad would play tickle monster with me.  He would be the ticket monster and the only way I could get him to stop tickling was by saying ‘calf rope’.   Well, I hated to say ‘calf rope’ because it meant giving up.  I wanted to be able to wiggly out and away and ‘beat’ the tickle monster.  I never want to surrender.

That’s when the really hard stuff started.  I requested he be moved within 7 days.  The things I learned about levels of care after requesting removal:

  • The state legally has 30 days to re-locate a child unless said child is inflicting harm to themselves or our family.
  • In order for his level of care to be changed, paperwork has to be submitted with medical backup and then approved by directors.
  • CPS only supports basic level homes.
  • In order for a child to be labeled medical they must have a machine hooked to them 24 hours a day.

I began to unravel.  Did I mention it was Christmas time?  Or that Chase had moved home and then to NYC?  Or that Mitch and Liz had moved home?  Or that LL was crying ALL the time?  Or that G was traveling?

When I submitted the formal request to remove LL, I felt like I was saying ‘calf rope’.  I had spent every last bit of energy and effort and I didn’t have any more to give.  So after a visit with LL’s caseworker telling me that there weren’t any homes and that he might have to come live in her office or be taken to a shelter, and 10 days out from the request, I called our FAD caseworker.   I pleaded with her to find someone.  She called back with her Supervisor and that is when things got ugly.

A lecture about the ‘quality’ of children in the foster care system and my ability to care for them would not be received well at any time.  But a lecture from OUR FAD workers Supervisor on a day when I am more than overwhelmed sent me over the edge….to the ugly cry/rage.  To inconsolable disbelief.  To calling G.  To G and I getting on the phone with the Supervisor so that he could clear things up because to say ‘I lost it’ was an understatement.

Fourteen days into the request, I got the call they had found a placement.  It was a Wednesday and they were moving him on Friday.  Great!  I had just left to take Landen shopping and we would have enough time to pack him up and say goodbyes.  About 10 minutes passed and the caseworker calls back.  They have to move him today by 5pm, should she send a transporter or do I want to bring him to her office?  So much for shopping.  Landen and I headed home to pack.

We had him packed up within a couple of hours and then G and the girls helped us load up and I took him to South Dallas to the caseworkers office.  It was hard but I knew it was for the best.  We got to the office and she was’t ready and needed to finish paperwork.  So I sat and played with him and tried to feed him.  They were going to move him to a family in Henderson, TX.  I didn’t know where that was and I really didn’t question anything about the placement because I expected that CPS would be placing him according to what was best for HIM:  A moderate level home that had a lot of medical experience and had the flexibility to take him to all of his specialist appointments.

There are certain looks that kids can give you that can break your heart.  When their eyes show fear and are looking for you to comfort them is one of the worst.  When I got LL loaded in the caseworkers car to head to his new home, he gave me that look.  The look that he knew he was being separated from the momma he had known for 6 months and he was scared.  It can actually rip a part of your heart I think.
I wailed.

I was so relieved when the caseworker texted later that evening to say that the foster parents were both nurses.  Yea God!

The evening was spent snuggling my girls and gregg, eating pizza and watching a movie.  The next day I was doing pretty good.  I was cleaning out baby stuff to lessen the clutter.  I really felt (still feel) like God had his hand in moving him to an unofficial medical home.  And I was moving on with the girls.  Reece had a friend over and Landen’s friend was headed over.  I was going to take all the girls to ice skate at the Galleria.  Everyone was excited as we headed to Dallas.

And then, LL’s caseworker called. The caseworker had taken LL from his parental visit and was headed to ER.  The new foster family had been up all night with him and were very concerned about his major respiratory distress, but they were headed to a family event.  So the caseworker decided to take him to the ER and ‘not leave until she had answers’.  Of course, she didn’t know anything about his medical history so she called me.

One of the hardest things as a foster parent is letting go.  No matter how long the child has been in your care, it is hard to let go.  It’s even harder when the child is sick and you have been in the trenches with them for 6 months.  So when the caseworker called, I immediately wanted to head to the ER and comfort LL.  He had been with strangers for the past 24 hours and he was still physically feeling lousy.  But I was on track with my kids to go Ice Skating.  I was torn.  While the caseworker had said I could come to the ER, I had talked with Gregg and Julie and they discouraged me from going.  Julie said that the hospital wouldn’t let me in see him because I had no legal rights and Gregg said I needed to let go.  And I’m pretty sure a bit of my heart ripped deeper.  So a 6 month old baby in a strange place with strangers, feeling horrible and wondering where did my momma go?

It still hurts to think about it.

I stayed with the plan to ‘play’ with my girls.  Ice Skating didn’t work out but we managed to salvage the afternoon by making a mess in the kitchen.

The next morning I received a call from the new foster family.  They had not intended for the caseworker to take LL to the ER or for the hospital to keep him.  They thought they were coming to Dallas for a visit and family event.  So they didn’t have my number but called as soon as they could.  Bonnie is a pediatric nurse and her husband is an ER nurse.  They have 5 children and are adoption motivated.  THANK YOU GOD!  When they accepted placement of LL they were told he was healthy with one specialist and up for adoption.  Once he came into their home, they learned the truth.  They are 2.5 hours away from Children’s Medical and realized that this kid has lots of medical needs.  They immediately submitted for him to be relocated.

Why on earth would CPS place a medically needy child so far from the best medical care in North Texas?

So LL was admitted to the hospital on December 22 and didn’t get out until the evening of the 24th.  Doctors said he had the Rhino Virus again.  And CPS changed their mind and wouldn’t let me visit.  And all I could think about for those 48 hours was…a 6 month old baby that is in the hospital AGAIN, but this time with out his ‘momma’… Instead he is being ‘monitored’ by a stranger.  Even without his new foster parents because they are 2.5 hours away.  And I felt like my heart might actually burst.

Bonnie, the new foster mom, was able to pick him up the evening of the 24th and take him home with her.  He remained with her until January 6 when he was moved to another foster home.  During his brief stay with Bonnie, she was able to get him to breath better.  She regulated his breathing treatments and got him into a pediatrician that was actually able to remove and dry up some of his mucus.  She figured out that depending on how he was positioned determined his oxygen quality level and she was able to start him on a new asthma medicine.  She also knows the new foster parents and they have another child that has respiratory issues so they feel very comfortable caring for him.

I don’t doubt that God has been in LL’s life from the beginning.  I don’t doubt that he continues to comfort him and care for him and guide his path.  And I believe He is with our family as well in this fostering journey.  I do wish it wasn’t such a painful process.

We all loved LL Cool Baby and still do.  He is a special little boy.  He is sweet, cute, loving and strong willed.  I will pray for him always.  He has a piece of my heart forever but I am still healing from his departure.