Weight check

We had an appointment with Dr. Geddes to have Olivia’s weight checked.  She is 7lbs, 4 oz which is MUCH better than the visiting nurse had weighed her the day before (6lbs, 7oz).   I will call on Monday to set up Olivia’s 2 week checkup as our pediatrician has been on vacation this past week.

No spleen, gut malrotation

Olivia had her tests this morning (Upper GI/ultrasound). the tests found that Olivia does not have a spleen (as expected) and she does have gut malrotation, meaning the intestines are on the wrong side. This will require an additional surgery, but not at this time. Tricia was told that if it wasn’t for these tests this morning, THEY would have been released from the hospital already. Olivia is still scheduled to be discharged tomorrow.

Tricia was able to talk to a mom who’s 1yo has the same condition. I think that helped her a lot.

July 26: email from Arnie

Hello everyone,

Great news! Olivia is coming home on Tuesday!!! She will have her upper GI and ultrasound tomorrow to check for any abdominal abnormalities and as long as everything is ok, she will be coming home. She is now breastfeeding very well and is off all meds except antibiotics and aspirin. The only thing attaching her to any equipment are the wire leads monitoring her vitals.

Thanks,
Arnie

July 24: email update

Sorry I’ve been bad about updating. I hate being away from Olivia’s bedside for any length of time. Plus the room I’m staying in only has one phone line so I’m tying up the line if the PICU needs to reach me … so…

Olivia is doing fantastic. They are just trying to get her to eat more. We think she was taking about 15 ml (based on how much I get if I pump after vs. pump while they bottle feed her. For now I’m pumping and getting about 1 oz and she’s drinking about 25 ml every 3 hrs. They really want her at 40 ml every 3 hrs so we’re working toward that.

Today I was given a choice – BF and bottle or BF and NG tube (tube in her nose). The choice I took was BF and bottle. Today we’re going to work on getting her to feed longer and take more and we’re going to re-evaluate tomorrow. The lactation consultant isn’t in on weekends so I have to wait until Monday to see her.

Olivia’s last IV line (in her belly button) is scheduled to be pulled this afternoon.

Monday morning she is scheduled for an Upper GI (to determine stomach placement and rule out malrotation), a ultrasound (to determine spleen functionality / if there is one) and finally her hearing test.

Anywho, all is well. Miss Maddie came to visit today and is looking forward to her big sister coming home. The cardiologist on call this weekend told me this morning he’s anticipating we’ll be going home by TUESDAY but if not definitely by Thursday! I cannot wait to be a complete family again – I miss my Maddie Rose so much and I cry when she leaves at night

Love to you all

Tricia

July 23 feeds

5:30AM: Breastfeeding – hearing her gulp.

7:00AM: pump

She weighed in this morning at 7lbs, 4 oz

Dr. Megan said we possibly will turn down IV fluids today.

Another chest xray done this morning.

Nurse today was Kathy B. (yes, another Kathy)

Kathy called the lactation consultant and left message for them to stop by and confirm Olivia and I are doing this breastfeeding thing right.

Dr. Megan said: weaning her off dopamine. Turning off IV fluids and monitoring urine output. Olivia is on amoxicillian 2x a day. Scheduled us for Upper GI and Ultrasound for Monday morning.

Evening Nurse was Nicole until Midnight and then Marie.

At ~ 11PM Dr. Mel Collins ordered a potassium test. It came back a bit “low” (2.9) so they gave Olivia potassium orally with her midnight feeding. SHE HATED IT.

3AM: Breastfed for half hour (both sides). Pumped 14 ml after (at midnight pumped 30 ml – one ounce).

Completely off dopamine. She is getting slight IV fluids to prevent dehydration

July 23 updates, eating

Arnie called with an update…

Olivia took a bottle yesterday morning and has been breastfeeding very well since yesterday afternoon.

They are starting to wean her off of the dopamine (sp?) and will be turning off the IV fluids soon if she continues to eat very well and gains some weight. The cardiologist was very impressed that Olivia is breastfeeding already. Definitely a great sign! Olivia’s eat is the key to everything. She needs to start gaining weight.

Her oxygen levels have been terrific.

Monday, an ultrasound and upper GI is scheduled to check her organs, check if the spleen is there. They may start her on a low dose of antibiotics after this.

Olivia is still in the PICU because the NICU is still booked, and she may just remain there until she is released. Arnie and Tricia are hopeful that Olivia will be released on Maddie’s birthday, July 29. That’s less than a week away! What a wonderful birthday present that would be.

Notes from July 22

Nicole was her nurse last night. She weighed and bathed her and she was 7lbs, 8 oz (fluid retention).

Olivia’s first night off the vent – she did fantastic. her Oxygen levels did did into the high 50’s but her blood gases were better and she extremely comfy.

They are giving her the Lasix (diaretic) very slow.

She’s on tylenol for pain management.

8:30AM:

Tom is her nurse again today with Diane (who I want to call Kathy all day)

Dr. Heller (Cardiologist) stopped in. She said Olivia is looking GREAT.

Dr. Heller said Dr. Mello oftens says “unique anatomy” when the heart isn’t “textbook” and she said nothing is different than what we knew before.

We’re waiting for the chest tube removal along with possibly the IV in her belly (“pace wire”) prior to feeding. Dr. Heller feels we should get Olivia eating asap as she’s rooting.

Tom put Olivia on “blow by” Oxygen this morning since her levels were dropping into the high 50’s again. This is just a small tube placed in her bed blowing oxygen near her.

9:00AM: Dr. Mello stopped by with Dr. Leopold (cardiologist). They decided to remove the pacer wire so I had to leave for about 20 minutes. Arnie showed up at the hospital during this time and could hear Olivia screaming in anger as he walked down the hall toward her room.

9:35AM: They removed pacer wire “one on ventricle, one on atrium”, the cath, common atrial line and the chest tube. OLIVIA IS WEARING A ONESIE AND DIAPERS FOR THE FIRST TIME!

9:55AM: Lisa and Melinda from xray came over to do a chest xray.

12:30PM: First feeding of expressed breast milk. They defrosted 5 ml and she took 4ml. She was given aspirin (1/2 baby tablet dissolved in water) and a dose of Zantac.

4:45PM: Our first breastfeeding session. She ate for 10-15 minutes on the right side. After she fell asleep and her oxygen levels hit 100%

Dr. Eric is on tonight.

Dr. Megan (resident) said no upper GI until after Olivia’s adjusted to being off all the meds and she is “more stable”.

Medications: They will start to wean her off the dopamine tomorrow. She is still on IV fluids “9” per hour which is the minimum she needs.

9:30PM: Another breastfeeding session.

Real clothes, moving to NICU?

Tricia called and said that the nurse put in orders to have Olivia moved back to NICU. She must be doing great. Also, Olivia is wearing a onesie and hat, REAL clothes. She talked to the doctor and he said not to worry about Olivia’s unique anatomy. Tricia sounds like she is just beaming.

2 days post shunt

Olivia has been doing fantastic. Yesterday she had two nurses dedicated to her care – Tom (in training) and Kathy. When I was released we walked over here and they were “rounding” about Olivia. Each child has their own room (and own nurse) in the PICU. The room was FULL of doctors which startled me at first.

They spent yesterday weaning her off the vent. By noon she was doing 2/3 of the breathing and her oxygen levels were in the 90’s which actually they considered to be possibly too high.

She is on the following meds:

Dopamine for BP regulation

Milrinone for “cardio” – decreases the pressures in her major vessels.

Morphine for pain – but it’s not a drip. Olivia is on a very light dosage but she seems sensitive to it.

Sugar water for fluids.

They were giving her Lasix yesterday morning for diaretic but had to back off when her oxygen levels were all over the place.

Around 4:15pm, her BP was 95/56, oxygen levels 89%. Blood gasses were showing an oxygen level of 75% which was what they wanted to see.

They made a decision to remove the ventilator around 5:20. There were two respiratory therapists and two nurses present. It went extremely well and she was FIGHTING MAD! She has done FANTASTIC off the vent and her breathing has been BETTER without the vent than on it.

Nicole was Olivia’s nurse last night. An aside, the nursing staff here has been nothing but fantastic. Very helpful and I’ve had no complaints.

Olivia had a very good night. They just gave her a bath and weighed her. She smells SO SWEET! Not that she didn’t before, but even better now. Olivia weighed in at 7lbs, 8 oz which is probably a water weight gain. She’s not terribly puffy and Nicole commented that she is doing better than they normally see.

Olivia’s oxygen levels dropped into the high 50’s last night but her blood gasses were great and she hasn’t been struggling. She’s extremely comfy and very aware – She was WIDE awake at 2AM when I went to see her.

The family rooms here are very nice – SMALL but nice. I have a TV with DVD/VCR combo, a small closet, a desk and a trundle bed. There are two bathrooms and a common area (including full sized fridge and microwave) that are shared by the wing of bedrooms – there are 6 bedrooms total and only 3 families here right now. Everyone is very quiet and no visitors are allowed in this wing so it keeps things quiet and clean.