Doing really well

 

I like this picture because of what it represents – a Daddy’s love.  Jason was introducing Bella to a friend he hasn’t seen in years.  I love how happy and proud he is of our Bella girl.

 

Our version of some tummy time:

   

Playing around:

Bella is doing really well.   She has been able to come off the vent for a minimum of four hours a day.  Yeah Bella!  I want so badly to be free from the vent.  To be able to take her places with us.  I have so much guilt.  When we take her off the vent, she works so hard, her respiration rate is so high.  She pulls and works.  This would never be acceptable in another kid.  But her heart rate and her stats stay good.  I guess she’s just used to it at this point.  I wonder if she’ll ever slow down her breathing or if she will work for every breathe for the rest of her life.  When she is off the vent, she also loses her voice.  All she has left is this grunt sound she makes in her mouth.  I feel guilty that I steal her voice.  She is doing so well, though.  She is happy.  A sweet little one named Presley is fighting in the PICU, sedated and on the vent with pneumonia.  It reminds me of our days there.  It makes me sad for her Mama.  I pray for their family.  It makes me want to grab my girl and love on her.  It makes me so proud of her and all that she has fought, conquered, and lives with.  I love  you sweet girl!

Our family went to Splashtown yesterday (without Bella – more guilt).  I looked around at all of the stairs and the pavers and all the people and thought there is no way I could bring Bella here.   Our family is going to Morgan’s Wonderland in June.  We are going to celebrate Joy and our cousin’s birthdays there.  I am so excited!  This is a place I want to support.  I so want to take Bella.  I want her to be able to do fun things with the family.  I’m hoping, hoping, hoping she will be strong and well enough to go with us.  I’m a little scared.  We have never taken her over night anywhere without medical personnel.  We’ll see.  I’m hoping…..

Scared

Things like this scare me. Click here for the article.

Doing so much better..

This week Bella has been on the mend.  It took all week, but she is back to normal – yeah!  She was even able to do three HME trials yesterday.   I love it when she is off the vent, but we have to suction so often.  Oh well.   The bad news this week was that I had to change her trach twice due to mucus plugs – that is too much!  After talking to the doctor, she started mucamist – I love that drug!  After xopenex and mucuamist, her stats have been terrific!

Jason has been playing around with the camera to learn more and his favorite subject is Bella.  Enjoy the pictures!

   

One Year Later

One year ago sweet Bella had her trach/fundo/gtube.

Right after surgery one year ago:

Bella today:

Mother’s Day

It’s been an interesting Mother’s Day.  There was no breakfast in bed surrounded by adoring children handing me cards.  Instead I woke on a couch (hooray that it’s there!) and hoped that we would go home today.  I spent hours waiting for an ambulance.  I held my baby.  We got home and I briefed Jason on Bella’s new orders.  Then I threw on a dress and rushed to church.   The girls were supposed to sing at church for Mother’s Day.  We didn’t make it – they sang to me in the car instead.  :)  We came home and I headed off to the pharmacy for Bella’s new meds.  Of course, they didn’t have it.  So off we headed to find these drugs.  I came home and checked on my baby and am now, finally, eating.  But I’m not complaining.  Today I was told a million times “Happy Mother’s Day!” from the doctors, the nurses, the EMTs, the pharmacists, and my beautiful children.  I held and kissed my babies.  What a blessing!  Today I am grateful for the mothers of Joy and Bella.  I get the recognition for being a mother, but they gave them life.  I get to hold them and kiss them, but their arms are empty.  Today my heart is full.  Full of gratitude that I am a mother.

Back Home!

Shelly and Bella got home so they could enjoy Mothers Day with the rest of the Turpin family.

Welcome back Bella.

I will let Shelly post more on everything else.

--Jason

Hospital Pictures

Some pictures from our stay.  My sweet Bella.  This is the first time her monitors have ever said Turpin!  Those are some fabulous numbers!!  Can’t ask for better than those.  I let her play in her Bumbo in her crib.  She looked so good sometimes!

Admitted

On Monday Bella started with a runny nose. On Tuesday she started needing a little O2. On Wednesday the coughing was bothering her (and me), so I called pulmonary - can we get something for the cough? Sounds viral, he says, just keep an eye on it. On Thursday the desats started. On Friday the secretions were yellow and thick. I called again. He didn't like the hours long recovery from the coughing, nor the 4L we had to use, nor the 69 we dropped to. ER, he says. What? I did my little pouty dance and then called and made agreements for the girls, packed Bella and I's bags ( I don't go NEAR the ER without a change of clothes - learned that the hard way!), and then called the ambulance. Of course pulmonary called ahead of us, so they were ready for us. I started talking about going home before they were even done ordering tests. I have learned to get that goal firmly planted in the forefront of every conversation. Bella just has to be wheeled in and she's an automatic admit. Sigh. I almost had the ER docs convinced that we really could manage this at home with some antibiotics, but unfortunately for me, pulmonary was managing this one, so they had to defer to them. So Friday we ended up in PCU on two IV antibiotics. Gaining access was terrible. The sweet thing had to be stuck and stuck. She knows exactly what those blue elastic bands are for. She feels them on her skin and the tears start. Poor baby. By the time we made in out of ER she was bubbling with green secretions from her trach. I think part of that was all the crying - it really helped to move things up and out. She had a good night though. Her CBC is already improving. It did show that she was fighting an acute infection. So I am glad that she is getting the meds. It looks like, though, that I have convinced the attending and the fellow that we really can manage this at home. I can turn up and down oxygen as well as the next person. I can give xopenex. My nurses can handle the IV antibiotics - so we MIGHT be going home tomorrow - Mother's Day. It helps that both the attending and the fellow are women and are mothers and they understand that I really want to be home tomorrow. I want to be with all my girls tomorrow. They also know that I wouldn't do ANYTHING to jeopardize my sweet baby girl. If I thought she was beyond what we could handle at home, I would be the first one to call the ambulance.

A couple of observations from this stay. I have changed so much in the past year. The first time Bella was in ICU, sedated, on the vent with an IV, the nurse asked if I wanted to hold her - and I answered no. I was so scared. I didn't know HOW to hold her. Where should I put my hands without hurting her? Today I held Bella on my hip with her circuit, her leads, her feeding tube, her pulse ox, and her IV while I changed the linens on her bed. I just had to smile. It's amazing what we can get used to, what becomes the norm.

The resident in the ER was one of the residents in cardiology a year ago when Bella was waiting to be repaired. Every time we come here, people remember us. Everyone remembers beautiful Arabella, but when they remember me, I wonder. :)

Happy Mother's Day! I hope we get to celebrate it at home :)

18 Months Old!

I can’t believe it – time is flying, but this is a milestone to celebrate.  At church you are officially old enough for nursery.  I think we’ll wait a day or two for that!  :)

 

Our Outing

Jason and I are hoping to take Bella on more outings now.  Her finalization has taken away a very tangible layer of worry.  Today we went to one of our favorite parks.  Her O2 needs were actually worse at home than while at the park!  We think she really enjoyed her outing.

Bella’s Blessing

What a special time.  Bella wore the same gown that Becca, Sammi, Jessi and Lizzy wore.  My Mom made this dress years and years ago.  Bella looked so beautiful – like an angel!  Congratulations Arabella Michele Hope Turpin!

Our Bishop came to the house to help with the Blessing.  Grandma and Grandpa Turpin watched over Skype  - a good day!