Nurse Ann and I took Bella out in the back yard for a little while. It is a process and definitely takes two people to get her out back. But it was fun. She enjoyed it and liked watching her sisters jumping on the trampoline. Joy never left her side.
Yesterday we checked in with our Special Needs doc. She has lost a pound in a week. She was retaining fluid, pulmonary edema. She got her first H1N1 shot and a big girl car seat. The doctor said, “She’s looks good. Get her out of here.” Yes Ma’m!
Happy Halloween everyone!
This is my Bell! Wahoo!
She has been on room air the whole time we have been home! I am giddy! Yeah for drugs!
One more chest x-ray and then we are free to go! Wahoo!
We see the pulmonologist next Wednesday and we need to check in with our Special Needs doc, but we will sleep in our own beds tonight!
Her cheesy grin face and her too cute face:
She is down to 1/2 a liter of oxygen. We haven’t seen this in a while. I’ll take it! Bring on the ambulance. We are out of here! :)
What a night! I forget the joys of sleeping in a hospital, of never getting more than 10 to 20 minutes sleep before being awaken by yet another alarm.
On the other hand, as your baby hovers with a blood pressure of 40s over 20s, and three nurses are poking her with needles, I wouldn’t be anywhere else but here doing my best to comfort my baby.
It would appear Bella’s not ready to jump to a full dose of Sildenafil, so we’ll play with the amount today. Oh well, guess we won’t be headed home today.
I have been…..I think the PC word is ……advocating in Bella’s behalf. A lot and often. And fortunately things are happening. Good things.
I had to go home last night. This admission wasn’t planned (are they ever?) and my babies weren’t prepared. When I came in and did my inspection I could tell her IV was gone. That was her third. They were lasting about 12 hours. She just doesn’t have much left and what she has is hidden under all the chub. :)
As the Kangaroo Krew was searching her body for any vein to use, we decided that she really doesn’t seem to have any infection, although she is growing a couple of things in her trach. No access was therefore required – yeah! I told the doc I could kiss him. Bella’s veins were saved! The conclusion is that this is pulmonary hypertension. She outgrew her meds. So this is a pit stop to re-tune everything. The beautiful thing about being in the hospital is you get multi-disciplinary care. The bad part is you have to be in the hospital to get multi-disciplinary care. Oh well! We are getting that tune-up and I’m grateful for it. Her med increases are starting today. Here’s hoping for no reactions!
One thing I did ask was how close do we need to watch her weight? Obviously, this was too long to go without seeing her pulm. doc, and yet it was only 2 months. And now I know, whenever she starts needing us to turn up her oxygen, I’m to call her pulmonologist, not her PCP. We talked about the fact that often doctors want to see if the patient is getting better and can just out-grow their meds. My problem with that is that she had to tank to get everyone’s attention. I see their point, there is no crystal ball. But the doctor said, Bella has declared herself. They won’t be trying to wean her for a while. We are also thinking about a big girl formula and getting off the preemie formula. Her birthday is coming up, and we don’t need to worry so much anymore about gaining weight. :) Every single doctor that has come through the door has told us that we need to cut calories. (shaking my head) It’s not like she’s sneaking chocolate cake at night. Oh well, we’ll get it right.
I am grateful that we getting answers to some of the questions that I have had. Some things are still unanswered, like the vomiting. She has a continual drain on her tummy right now. There is a significant amount there. But she is still gagging and trying to vomit, there just isn’t anything to vomit now. At least she won’t aspirate on it! :) Poor thing.
Pulmonology and the intensivists agree that her story is classic of pulmonary hypertensive crisises. They want an ECHO. Besides looking at the heart function, it can help measure pulmonary hypertension. As a guideline, sildenafil is 1ml per kilo. Our sweet girl has gained 3 kilos in the past 3 months. So, some adjustment seems to be in order.
We need an ECHO. They don’t do ECHOs on the weekends, unless you are in ICU. We are not (thankfully!) So we wait. In the mean time, we are going to get a dose of Lasix (yeah). We have had our EKG and a bunch of labs. It is always our luck to come here on weekends and holidays. :)
A good thing, though. Gross and beautifully simple. After she threw up for the third time, the nurse asked me if we vent her stomach at home. Vent her tummy? Ah! I am an idiot. Of course. We hooked her up and there was gas and tons of bile. Poor sweet thing. I am hoping this will really help in the vomiting department. Do you know how many doctors I have talked to about this? Anyways, I remain hopeful and grateful to our nurse.
We had a standard follow up appointment with Pedi. Surgery today. We talked about her vomiting. She decreased her calories again. The poor thing has gained another 3/4 pound in one week. We talked about options for her poor GI track. Mostly options for the future.
Then as we were packing up to go home, Bella decided to have another episode. She has been having these more and more often. She desats and we turn up her oxygen. Eventually, we turned down her O2. But the trend has been disturbing. She has gone from being on room air to being on 2 liters of oxygen about all the time. Well, today she was requiring 4 liters to maintain sats in the low 90s. Instead of going home, I decided we would go upstairs to the Special Needs Clinic and visit her doctor. Poor Bell. Long and short of it, Dr. Louis, her nurse, the EMT, the paramedic, the home health nurse, and I escorted Bella to the ER where we ran more tests and were then admitted to our home away from home, the PCU. We were once again greeted with open arms. I love the people here. They are so kind to our sweet girl.
I’m hoping we can figure this out. It’s not what I had planned for my weekend, but I’m so hoping that we can get to the bottom of this. Is it her heart? Her pulmonary hypertension? Or something new and fun that I know nothing about? Here’s hoping for a quick and informative stay!
Bella works so hard in therapy! This was her best ever! Pushing up on her arms and standing and then resting with Mom. She hasn’t done this well in a while, but she still tries.
I felt like Bella would enjoy a TV in her room. I know, I know, but I did it anyway. There is only so much to do when you lay in bed all day. Jason installed this shelf and she was ready. Here she is enjoying Winnie the Pooh (Becca’s favorite when she was little). I won 11 Baby Einstein videos on Ebay, so we are all set. Something else for Bella to do.
Aunt Kathie got to come and meet Miss Bell.
Finally! We got Bella some leg warmers. I have been wanting these since our ICU days. They were a gift from my friend Emily. Thanks!
Becca introducing Bella to baby dolls.
My sweet, adorable, and chunky little Bella. We love you so!
Bella and I are home again after spending all day at TCH. It’s always an adventure to travel with that many people by ambulance. At least I don’t have to worry about the traffic! And since she’s on a stretcher, she’s usually taken back faster.
http://www.lds.org/topic/hope/
I found this on hope. It is beautiful and touched my heart deeply.
My friend Lacey wrote about her kid’s names on her blog. Jason and I have been thinking about Bella’s name a lot lately. We are making big steps towards finalizing Bella’s adoption, then she will have the name we have chosen for her.
Arabella Michele Hope Turpin
Arabella – the name her parents, the people who gave her life and gave her to us, gave to her
Michele – my name and her biological mother’s name
Hope – I chose this name a long time ago, but I had no idea the depth of meaning of this word – and how much I have learned about hope this last year. Hope. Hope for Bella. Hope for life.
The girls and I saw this yesterday on a plate. I almost bought it, but the colors were all wrong for Bell’s room.
Learn from yesterday,
Live for today,
Hope for tomorrow.
It’s perfect for my girl. I have fears, deep fears, about my girl. About her constant need for oxygen, about her lungs, about her heart, about all the sleeping, about losing her. I was talking to a lady at church today whose husband has weeks left in his life, maybe, hopefully more. She said they are just grateful for every day they have. Yes, we are grateful for every day, but we hope for many, many more days, weeks, months, and years to come. We love you Bell!
Look at the chunk on our sweet girl! :)
Playin’ – She is doing well. She is only vomiting around three times per shift now. Ever since her last admission in August, we just can’t seem to get off the oxygen.
In OT we got the OK for therapeutic tastes. That allows her the tiniest tastes so that when we finally do eat, it won’t be such a shock. Here she is trying sweet potatoes. She has also tried some gravy from a pork loin and pickle juice as well as banana, salty residue, and the spray tastes of strawberry and lemon. I try to be so careful that she gets nothing that was made with gluten because her biological mother and sister are sensitive to gluten.
Look! Look! She was doing well enough that we brought her into the living room to watch a movie with the family! We had some friends over for dinner and a movie that night …and Bella got to join us!!!! Wahoo!!!
And finally her latest trick. She is a smart little cookie! She has figured out how to get the pulse ox sensor off her foot. She pulls at her sock till she gets that off, then she starts in on her sensor. Silly baby! We have to use so much tape these days! :)
My sweet little girl works so hard in all that she does. Look at her sitting up in the Bumbo seat! She can do this for short periods of time – wahoo!
Becca and I decided today that Bella needed a hair cut. Her hair had gotten so long, but it was so stringy and crazy. So we trimmed it up. 
Little Miss did not appreciate having to sit up for that long.
