We called into the NICU this morning and got an update. Zoe’s oscillator settings are slowly being weaned. Her blood gas is good. She is getting another blood transfusion and more platelets. I asked the nurse last night for a count, and she figures Zoe has received 18 transfusions so far of blood and platelets. I’m sure it is a higher count now. Juliana continues to be stable. They think her ductus is almost closed which is good news. They upped her oxygen to between 24-27% but she is doing well. I feel when I look at her that she is incrementally bigger. Maybe just my imagination.
Last night, Jen didn’t feel too well and it turns out she had a fever. They took her upstairs and drew some blood, examined her, and then told us to watch over her. She won’t be able to go back into the NICU until she has 24 hours of normal temperature. They don’t think it is H1N1 or anything like that. We have a dear friend who is letting us stay in his condo by the harbor, so we are trying to rest while we can. Thank you for the continued comments and encouragement.
We took these pictures yesterday. Please just view them here and not repost them to FB, email, etc. Click for bigger pictures.
This is Juliana.
This is Zoe.
Today’s update from the NICU:
Juliana had another echo to check on her ductus. It did not close during the first round of medication, so they will probably do another round. She has received no new blood, is off dopamine, is breathing room air with no additional oxygen. Yesterday, Jen used a digital voice recorder to record One Fish, Two Fish, Red Fish, Blue Fish and several Bible passages. The night nurse played the recording for the girls.
Zoe had some of her osillator settings lowered and her oxygen increased to about 94%. The advantage of an oscillator as opposed to the respirator is that it is very gentle on the lungs and can achieve much greater oxygenation. She had good blood gas and is peeing well. One concern is that a little of her stomach contents came up her tube in the night. They are doing a belly x-ray because there is some concern the bowels are not moving well and they want to check if it is anything more serious. Her abdomen is soft and normal-sized so that is a good sign that it is not anything major.
Both Juliana and Zoe were stable yesterday and through the night. Juliana received her second dose of medicine to close her Ductus arteriosus and is scheduled to receive the next dose shortly depending on her platelet count and other indicators. Once her ductus is closed, her heart and lungs will work easier and more efficiently. Zoe has improved her sodium and potassium levels and is able to have her oscillator settings slowly weaned down. She is fighting well. Jen has been discharged today and is feeling much better.
I got a chance to talk to the attending neonatologist this afternoon about the girls. Juliana has ended her “honeymoon” period. Usually when a baby is born premature, they have a few days of extra high activity and strength, and then they get tired. For Juliana, it just means her ventilator rate has been increased to make it easier for her to breathe so she doesn’t get too tired. She is also on approximately 24% oxygen. The air you and I breathe is 21%, so needs minimal help to keep her oxygenation at a good level. She did receive the 3rd dose of the medication to close her ductus and they did an electrocardiogram to check if it worked. The results will come in tonight.
The neonatologist also talked to me about Zoe’s brain hemorrhage. She said that 30-40% will resolve themselves, while the remainder can have some of the neurological damage typical of a brain injury. Her settings are slowly being weaned and she is responding well. They are giving her every chance in the world to survive.
Jen had some fun in the unit this afternoon. Jenny, the nurse for Juliana, let Jen change Juliana’s diaper and take her temperature. She was thrilled.
Thank you all for your comments. Jen and I have read every single one and have taken great strength. Tonight I spent an hour in the NICU and met a couple who has twin boys set up next to Juliana. They are 10 weeks old, but were also born at 24 weeks under similar circumstances. Their one son has grade 3/4 hemorrhaging. Encouragement and love just poured out of them as they recounted a similar situation with their son as to what Zoe is experiencing right now. They said there will be many terrifying moments to come, but not to lose faith in the strength and resilience of Zoe and to each other. Zoe will be a fighter.
Juliana and Zoe are both in the most critical condition. 24 weeks of gestation is about the youngest a baby can be and potentially survive. Here is their current status:
Juliana: She is stable. Her ventilator settings are low, which means she is breathing well, just needs a little assistance. They were able to start a drug to close her ductus so that her body can more efficiently use her oxygenated blood. The nurses call her a little superstar because of her progress. Despite her progress, she is still categorized in the highest category of critical condition and requires constant adjustment of her medicine.
Zoe: She had a life-threatening event on the morning of the 27th, but the NICU staff were able to stabilize her. She is on an oscillator for breathing and they are trying to rest her body. She has received several blood transfusions and is on different medicines. From the event yesterday, the head ultrasound has shown some serious cranial hemorrhaging. She is getting another ultrasound this morning to check again. She is receiving the maximum amount of care available and is in as precarious a position as one can be.
4:30 PM Update:
Juliana: She continues to be stable. They gave her the 2nd of 3 doses of medicine to close the ductus in her heart. Once the ductus is closed, her body will more easily be oxygenated. They are constantly adjusting her medication to keep her stable.
Zoe: The bleeding in Zoe’s brain has continued. She now has what is considered a grade 4 hemorrhage. If she survives, she will almost certainly be a special needs child to a high degree.
Our 3 girls were born on October 25, 2009 by emergency C-section after 24 weeks and 4 days of gestation.
4:22 PM – Juliana Skye 1 lb. 5 oz.
4:23 PM – Zoe Janine 1 lb. 2.5 oz.
4:24 PM – Eden Aurelia 1 lb. 3 oz.
Eden was born with a tracheoesophageal fistula and sustained a catastrophic brain hemorrhage the next morning. She passed away in our arms October 26 at 10:40 p.m.