Today was a hard day for us emotionally. There was a bunch of unsuccessful weaning of medications, as Jane responded with higher heart rate, as well as dismal blood measurements. Blood is qualified using a test called “blood-gas”, measuring the pH, Carbon dioxide, and 4 other numbers. They draw blood approximately 4 times per day for “blood-gas” tests. This is the reason right now for her current blood transfusions, because she can’t produce blood as fast as they’re drawing it from her.
The nurse tonight had to remove one of Jane’s intravenous lines, which was run in her belly-button, 14 cm up towards her heart. The line began failing, so they decided to remove it rather than risk infection. The line came out without breaking ,which would have been a big problem. Thank God for that little plus for the day.
However, the problem with this is that the respiratory therapist needs to draw Jane’s blood 4-6 times per day for “blood gas”, and now that she doesn’t have the UA line, they need to get it with a needle. I hate watching it.
I was talking with cardiologists this morning about their ideas of a possible surgery, which they still want to wait and watch for a couple weeks. One of the possible procedures they are considering for Jane would need to be done by a heart surgeon specialist, that specializes in this specific surgery. This means CHOC would be putting us on a medical plane up to Stanford for this specialized surgery. This was just a thought brought up, we just HOPE it doesn’t happen. we really want to avoid/postpone surgery as long as possible.
One of the doctors paid me and Jane a visit privately, giving me much needed reassurance, and letting me know that they are trying their hardest. Apparently we are giving them reassurance and are making their job easier just by showing we care so so so much about Jane.
We were able to go out on a friday-night date, and it was a wonderful breather, just to get out, and try to take a brake from this mental drain. It was so hard leaving Jane though. And my mom got to babysit Jane for the first time.
In other news, today is Mark Beliakoff’s 29th birthday. Happy bday and congrats on a huge engagement.
Daniel and Elizabeth…we continueto pray for Jane and the both of you. It is good that you have chosen to go out on what you callef a date together. you are confirming Gods instruction when you married that two shall become one. and by bonding to one another in this difficult time you are strengthening each other and that too is what Jane needs. Hold each other up and just hold each other. We pray for Gods covering and protection on your sweet baby Jane and for Daniel and Elizabeth, who are ONE in Gods eyes.
I loved being able to watch Jane for you guys that is what grandparents do, so anytime you need to get out for a breather let me know. Im not sure if this is helpful or not but it has become more difficult each day to see Jane in her position. My heart just aches to see so many lines and meds going into her little body. I certainly havent given up hope I just want to see her little body in your arms. God what is your plan? help us to persevere.
Keep hanging in there. We know God has a plan…but its so hard to just be patient and see what that plan is. Im glad you got a chance to spend some time together alone and to breathe (although Im sure you were both thinking of her the entire time). We keep praying and praying to see another one of God’s miracles performed on your sweet Jane. Call if you ever want to talk… or need a baby sitter with Surrogate Mamas 😉 I can be there in 6 hours. Love you all so much, and cant wait to see you soon.