As we come to an end on the third day we are both exhausted, yet filled with peace. After our move to a private room today Jane had a MUCH better day. She was able to rest and get away from all the distraction and unnecessary stimuli. She stayed calm most of the day and her oxygen saturation was very stable. (her O2 sats are just one of the critical numbers we watch closely) Jane visited all day long with all the people who came to see her and surprisingly she held up her strength, although being the Mom I had to step in once in a while to remind people that her new “suite” is a hands off and whispering only room.
Daniel and I were reminded today of Christ’s promise that we don’t have to do this alone, nor will He let us walk this alone. We have continued to witness His truth and love over and over again. I think I’ve pretty much cried all day just reading the beautiful words that you all have shared! We both have been so uplifted!! Although this is her first great day (and can’t be expected everyday) we are holding on to the moment and praying that we start to see more positive trends. ***even healthy babies face a HUGE transition period from utero to the “real” world–Jane justs gets to start off running a marathon without having trained for it. At this point, I still have not been allowed to hold her but I ask everyday in hopes that sooner or later I will get a YES!! I’m dying for that moment….
Anyhow- a few notes about visiting hours. Visitors are only allowed between 7:30am & 7pm. Please try your best to stay within those times. The nurses require their privacy during shift change and they need time to evaluate and assess Jane. We want to keep our nurses on our good side and keep the glares away. Occasionally, they will allow visitors between 8 & 9pm, but ALL visitors must be gone by 9.
Peace and blessings to you all….
Jane has started off with a good day again. She is calm and resting. Her oxygen saturation continues to be stable overall, even though she has a few dips here and there. After rounding with the cardiologist this morning she told the staff that they don’t need to be so eager to ween her off of the oxygen they are giving her. She said it is normal for babies like Jane to have high pressure in the lungs and we want to slowly help reduce the pressure by giving oxygen rather than ween her completely.Lets see if I can explain this so it makes sense— all of us breathe in 21% of oxygen from the atmosphere. That is normal. Because Jane has problems with her lungs she is on a ventilator that helps her to breathe and she is given oxygen as a medicine; she is given more when she needs it and less if she can tolerate breathing normal air. There have been times that she was breathing 21% oxygen, which is great because that means she is able to breathe normal air like you and I. Other times she has been on 100% oxygen. So, the cardiologist was just letting us know that although weaning her down to 21% is ideal, it is perfectly ok if she is given a higher concentration for the time being. Not sure that any of that makes sense without going into all the whole medical explanation with you.
Other than that, her heart rate, blood pressure and respiratory rate all look pretty good. Her blood tests came back looking good with the exception of her platelets so they will be transfusing platelets today. The nurse just finished doing “cares” on Jane and she was a ROCK STAR!!! (cares: suctioning, changing her diaper, taking her blood pressure and temp). She is getting a good stretch now and relaxing! Still no talk of surgery or feeding her food yet. If she continues this positive trend then they will re-evaluate in a few days.
On a different note, I saw the light of day for the first time today since Tuesday. I had no idea it was cold and rainy outside, or was it sunny? I forget… Haha!
Today has been a blessing, my little girl is alive, and we’ve had mostly an uneventful day. It’s been delightfully boring! Her O2 has been mostly steady, blood “gas” (pH, CO2, etc.) has been a little up, little down, but all-in-all, our hearts and emotions have been at ease. I’ve been getting overwhelmed with one painful minute after another for my baby– especially when I see her grimacing in pain, and can’t cry. So today, thank you God for hearing our prayers.
There is going to be a meeting with all the surgeons and cardiac specialists Wednesday to formulate a plan for the operation…a necessary evil that scares the begeezers out of me.
Little disclaimer, the specific numbers that we see and tell about are a focal point of a vastly bigger piture of Jane’s health. So, I try not to pay too much attention to little details.
Dr. Kukreja asked me tonight if I was doing my job by talking with Jane, and if I was praying with her, and of-course I told him yes. These brilliant doctors really believe that we are a big part of keeping our baby alive…
So much that she opened her eyes for the first time yesterday for mom, then off to you later for me when I was talking to her. this is really just killing me, I love her so much.
Someone gave me this when I was esparate for comfort, he was once in my shoes, “I sought the Lord’s help and he answered me; he set me free from all my terrors. Look towards him and shine with joy.” -Psalm 34: 4-5,15