Since I obviously offended the nursing gods….allow me to clarify……….
I like an occasional daytime break from nursing.
Nighttime nursing is simply a heaven sent gift.
Tonight is the second night shift that has cancelled on us. Nighttime is painful. I, the sleep lover, crave sleep.
I repent. I am sorry. :)
Bella is still cute, even at 3AM.
Wahoo! And she stayed out of the hospital the whole time! Way to go my little strong one.
On Saturday we had our family picture finally taken. Jason’s sister is a photographer. Bella can’t go out and about, so the studio came to her. Marissa brought her big lights and background and we were able to finally have a complete Turpin family picture taken – yeah! Thank you Marissa! I can’t wait to see how they all turned out.
Sunday we had no day nurse. She called in sick. So we had the day (and Bella) to ourselves! We are very thankful for the nurses and their care. Jason and I are trained to take care of this little bug, but it is comforting to have a nurse here 24/7. On the other hand, we have to admit that occasionally it’s wonderful to just be the 8 of us – no extra strangers sitting around listening to every word we say and asking questions. We could not do this without them – make no mistake. We need them. Bella needs them. But for those 12 hours, we were a family – and it was wonderful!
Here is a little Bella for everyone to enjoy:
Notice her little hands working on the knots in her trach ties
Becca tickling Bella
I thought I would post a couple of pictures of our sweet girl and a little update. Last Saturday Bella got sick. She is still sick – but still home. So long as she is on Pedialyte, her tummy is OK. But she just isn’t ready to go back to normal feeds yet. Today she is acting like her head is killing her. I do understand because being the sweet thing that she is, she shared her sickness with her Mama. At least I understand what she is experiencing, so I understand why she doesn’t want to be held or isn’t enjoying her bath. Last night she remembered how fun it was to brady – a new way to worry this Mama’s heart. She is requiring more suction and breathing treatments than normal.
I’ve been asked why do we travel by ambulance. Well, her nursing agency has her condition listed as guarded. When we went to the doctor on Monday and had to go from the 17th floor to the 8th floor for an x-ray, the doctor wanted our paramedics to travel with us. She told the nurse that there is no such thing as too cautious with Bella. She is home, but she is a delicate little thing.
I’ve been asked if it’s easier to be home. It’s getting easier. It has been an adjustment – that’s for sure. It can be pretty intense around here.
Jason and I have big hopes for this little one. One day……. One day she will not be on a vent. One day she will not have a trach. One day she will run around the house. One day she will go to school with her sisters. One day. Until then, we just love on her and live for those sweet smiles!
The doctor was nervous at our appointment. We had viral tests run, some blood work, and two chest x-rays. BUT – we came home! I am so grateful!
What a strong little girl we have.
Bella has had two explosive – and I do mean explosive – blowouts and vomited twice in the last 12 hours. She is still afebrile. She goes to the doctor on Monday. Hoping, hoping, hoping.
But she looks happy.
Today is 11 days since discharge – the longest we have EVER been out of the hospital – and this is our girl…..
I think we just might make it!
There are still a million things that I am freaking out about and still trying to figure out, but the important thing is Bella is doing well! Way to go little one!
Today we went down to our follow-up appointment with Dr. Louis. She is our new doctor in the Special Needs Clinic. As I was told, she is wonderful! I love how she listened to me. We spent a lot of time going over her medical history. We got a million new prescriptions to fill for next month. Bella had a CBG and Chem 7 done. We were there three hours.
But it’s little things like going to the doctor’s that are such big deals. We travel by ambulance. I call and sent up a time for the Ambulance company to come and pick us up, then we spend hours getting all the equipment, meds, papers, and general stuff ready. ( I am assured that it’ll get easier to pack up and go – time is a great teacher. ) It is nice, though. My hour to hour and a half commute to Texas Children’s Hospital is reduced to forty minutes when you are in an ambulance! :) I am surrounded by one EMT, one paramedic, and one RN. This girl is in good hands.
My poor neighbor, though. He was coming down the street and saw the ambulance. He hastily parks his truck, and comes running up our driveway as we are coming down on the gurney. I quickly reassure him – this is how we roll! Poor guy! He thought she had tanked already. No, no. Bella is doing well. Jack, you have a heart of gold!
Bella is doing well. Everyone is hoping….and crossing their fingers…..and knocking on wood….and praying that she stays well. We love ya little one!
Michelle asked about church – she doesn’t go. When she can travel by car and people can be around her without being covered in sanitizer, then we’ll think about it! ;)
We are home! What an exciting day! There are so many wonderful people to thank! Thank you for loving my baby. Thank you for keeping her alive and helping her to heal.
The ambulance came at 10AM! I was so excited and mildly terrified!
Home in her own bed.
Hey Daddy! I’m home!
Tomorrow between 9 and 10 is our anticipated discharge! So exciting! So thrilling! Now there is so much housekeeping to do. Most of her meds are ready and waiting at our neighborhood pharmacy. 4 month shots are scheduled for tomorrow. I brought my little medication spreadsheet over to rounds and we realigned some of her meds so she’ll only get meds six times a day, rather than 10 – easier for me. OT and PT company has been identified. Nursing will start tomorrow. Supplies are supposed to come today. I received my final training on all the equipment today. Wahoo!
She looks fabulous! The doctor says she looks like a normal kid. She had them all cooing as she smiled her melt-you-heart smile this morning. :) My prayer is that we stay out of here for a long time! They reassured me that Dr. Penny Lewis, who will be her Primary Care Physician, is excellent. She used to be an Intensivist herself. She actually trained our current Attending. They saw a huge need for a PCP for kids with multiple medical needs and so the Special Needs Clinic was born. They tell me that she is really good about working with parents to keep them out of the hospital and doing as much as possible at home. Fantastic!
Happy 8th Month Birthday little one!
We are going to miss so many wonderful people here. People keep stopping by to wish us well. Bella has been here a long time.
What a busy day it has been! I can’t remember such a busy day! People in and out giving us forms and setting up so many follow-up appointments. Here she is having her car seat test.
I have been cleaning up her room. I want to take home as much stuff as possible tonight.
Her room was definitely bright and cheerful!
Till tomorrow….thank you for your prayers.
OnFriday, we convinced the nurses to let my little brother come into the unit and meet Bella. (No kids, except siblings allowed. Nathan was here to pick up my sister from her surgery on her femur.)
This is how I found Bella this morning. :) At least she got to wear her 4th of July outfit, but what’s up with that hair? They must have partied hard up here last night – she has slept all morning. :)
Then later in the bouncy chair after her bath and care . It’s always slow up here on the weekends, but this is a holiday weekend – even slower. :) Bella is doing well. We are still go for Tuesday! I figure every uneventful hour is just more time for her to build up her strength. I want this trip home to last this time – more than just a few days like before.
We had a very busy day yesterday and I didn’t have time to post. Sorry. Bella is well.
But what really kept us busy was my sister broke her femur on Wednesday night. They went to the local ER, and were then transported down here to TCH. Mandy had to have surgery to put a pin in her bone. While she was waiting during the 3 hour surgery, my Mom came up and visited with Bella. Here are Jessi and Mandy after the surgery.
That brings us to today. This morning I brought up the car seat. She needs a car seat test to get out of here – just like the NICU. Considering she can sit in her tumble form chair for an hour and do well, the car seat test will be fine. PT does the car seat tests and they are off until Monday. So that will be our last thing on Monday to do before our checklist will be complete – yeah!
This morning after her bath and care. She just loves her kisses during bath time. :) I thought we would try a head wrap. They are still a bit big on her. That is one finding of the MRI – small head. She isn’t disproportional, she’s just a little thing. But her biological mother and sister have petite frames, so I’m not worried. The MRI showed no abnormalities that would account for the eye movements. So I’m expecting the eye doctors to simply say, “we’ll watch it.” One more thing to follow up with outpatient. We’ll see for sure on Monday when everyone comes back to work. We will lose our PICC line today. The doctor has also increased her corn oil – they want her to grow, grow, grow! Her sildenafil has also been increased. Still looking for Tuesday!
The results – borderline normal on the right and mild hearing loss on the left. Alright. We will come back to clinic in three months to follow up.
Her eyes (nystagmus) – they scheduled the MRI for today at 5:30, but it also requires sedation and they do not, by policy, sedate a child twice in one day. So we are going tomorrow morning.
I am learning more and more about our follow-up care. It is going to be intense! Sounds like we might be down here once a week. Big sigh. There is going to be some serious coordination involved with these next few months.
