Jane, Jane, Jane…..isn’t she something? Well, she seems to be recovering nicely. Janes kidney and liver numbers are back to her baseline prior cardiac arrest and they continue to improve. Her swelling is going down, as well. One of her set backs is that her lungs are a bit more stiff. This is due to leaky capillaries and fluid build up. This should continue to improve as she becomes less swollen. From a cardiac perspective her heart still looks good.

The overall plan is to give Jane time to recover from another major event and just give her time. The great news is that Jane won’t remember any of this. But what she will know is how big her God is!!!

Click on the link to hear the song created for Jane by her Ts. Piklz

Jane is Back!

So about 6:30am I woke up with an anxious feeling that I needed to call the hospital right away. When I called I was told that the nurse was busy…..hmmmm that seemed weird. (usually at that time the nurses are wrapping up for the day and settling out) I called back 15 minutes later and was told Jane had just had another episode of bradycardia and de-satting. About the same time that Jane was having her episode the dr walked by her room. Wow- talk about perfect timing!!

The Dr and nurses were all impressed and amazed at my timing. I don’t know what to say about that except… Wow, that was really neat!

Today Jane is 6 weeks old…my gosh how time flies!

Jane appeared to be recovering well from Saturday and then decided to get us back on our toes this morning by dropping her heart rate and oxygen saturation. The Dr told us that small babies can do these things because of immature brain function, but they don’t know for sure if it is that or a mechanical issue with her breathing tube. Her airway is so small that a couple of millimeters can cause the tube to be too far in her airway or extubate her by being too far out- its such a fine line. Even a shift of her head can re-position the tube. I’ve really come to hate breathing tubes.

Overall, with a few set backs here and there, she is still making micro steps forward. Her liver numbers have dropped again as of two days ago and her kidney dysfunction remains stable. Her heart still looks great and her lungs are starting to look a tiny bit more compliant. Her clot has not grown in size but there is still a lot of concern because they think there is a connection that formed between the aorta and IVC (inferior vena cava, the great vein that sends blood back to the heart) Again, it is a simple procedure to fix that, but not a simple procedure for Jane given her critical condition. So, they will keep their eyes on it.  Besides her early morning event, she is looking pretty good today. She is on IV pre-digested nutrition and they are also going to start her back on a very small dose of formula to get her gut working again. In the meantime, they will continue to wean her ventilator settings as long as Jane tolerates it and continue to discuss transferring her back to CHOC.

Pray that these days be shortened so that we can all go home together. Pray that her lungs heal and get strong and that her heart can keep up with the demands of her lungs so that we can get that breathing tube out of her.

As of today Daniel and I have been in Palo Alto for one month. I haven’t been home for 6 weeks; this is by far the longest vacation I’ve been on (and I can’t say it’s been a fun one, adventurous, but not fun). 

Jane had a pretty decent night. She dropped her sats a couple of times but with re-positioning of her tube she was fine. She is so sensitive!! So far this morning she has been doing well. We have started her on a daily dose of Ativan to take the edge off and she has responded well. She is no longer on diuretics and is still peeing well. Her lungs continue to need time to recover but are making slight improvements. Her liver and kidney numbers have become elevated over the last 2 days. We think it is due to starting her on TPN but that is one of those things that we have to find the right balance between. She needs nutrition because she is malnourished and can’t tolerate food, but when we give her TPN it is rough on her liver. So…. do we let the liver suffer a little while we get her stronger?? These are the things the docs have to figure out and weigh the risks and benefits. The next issue on the table is her high blood pressure. Her tiny, cute body won’t be able to tolerate a high blood pressure for long so she will have to get that treated soon. A high blood pressure causes the heart to become enlarged over time and takes a toll on the body. 

We have come to realize that every organ in Jane’s body, with the exception of the appendix, has been affected. (we should probably just remove it before it becomes a problem, haha) This is to be expected given that the heart is the primary muscle that controls the body and has an effect on all the body systems. Isn’t God amazing….how this coincides with scripture so perfectly!! I can’t handle how perfect God has created life. He is remarkable! It boggles me to know that their are unbelievers walking this earth. Our bodies are so perfectly and intricately put together with our physical (and spiritual) heart at the center of it all…wow, wow, wow!!! In order for us to have life everything in the body has to be working perfectly and in unison: the heart pumps blood to the body, the blood carries all of the nutrients to feed the body and carries all of the toxins to the organs that excrete the toxins, the blood supplies oxygen to the lungs, and in the background the brain is telling every organ and muscle how to respond and I can go on and on—its perfectly amazing! The team continues to be amazed at how Jane is doing. One of the NP’s told me that Jane is remarkable given everything that she has gone through. I think so, too 🙂

Jane and I had a very nice flight. She slept the entire time and I stared at her vital signs until we landed. She did so well! Our ambulance ride from John Wayne went smooth, as well. As soon as we got out of the ambulance at CHOC Jane decided to drop her heart rate and blood pressure. At the same time the amount of oxygen in the tanks on her gurney were running low…. Ahhhhhhh!!!! Her flight nurse and respiratory therapist helped Jane recover and we wheeled her right up to the NICU. I guess Jane was just trying to say, I’m baaaack! She sent my heart racing….we were way to close for something crazy to happen.

She is all settled in and resting now. The staff here at CHOC was expecting us today so they called Ronnie Mac in advance and got us a room. I am overwhelmed with joy to have arrived safely!! That plane ride was nothing glamorous. Thank God for a safe arrival…and to be back home. The plan is to keep Jane comfortable for the night and then work on a plan of attack tomorrow.

Round 2 cardiac arrest

Jane is in very critical condition today. The team of docs have been in here room all morning and afternoon making sure they are keeping her comfortable and safe while they work on stabilizing her. The doc told us this morning that safety is the number one concern right now. Once she becomes stable and recovers from her code in a few days then they will begin to make further plans for her care. But, right now the focus is to treat her symptons and keep her vitals stable so that her body is able to recover. In the meantime, Jane’s TWO nurses have been working non-stop today. During rounds the Dr. kept hammering out questions for all of the team….poor girls were so nervous and stumbling over all of their answers. Even the fellow was questioning her knowledge. BUT- I’m glad they are focused and serious about taking care of my daughter.

The CHOC team has welcomed us back “home”. The docs are ready to dive into her records and fight this out with us and with Jane. We’ve gotten so many complements from all of the staff of how involved and knowledgeable we are about Jane’s history and condition. In fact, one of the docs said I gave him more information about Jane in 5 minutes than he would have received if he called the staff over at Stanford. I’m so proud to be Jane’s mom!!

For starters we couldnt have asked for a better doctor here at CHOC. Dr. Cleary is on top of his game. He is no BS kind of guy—precise, focused, informative, careful, exact…definitely a Godsend at this point of time. He is so precise that he was making sure the nurses are drawing their blood gases consistently. Drawing blood gases is something nurses do second nature, but he is so exact that he wants to make sure all draws are exact so that they dont treat something based on the wrong lab numbers.

After rounds this morning it was decided that we will continue to make forward steps as Jane allows. Yesterday Jane was put on NO (nitric oxide), a gas that decreases the resistance in the lungs. She was at 80ppm (parts per million)—a dose that the nurse and respiratory therapist have NEVER seen before all their time working here. The nurse said that when she gave report to the night nurse on Jane and told her she was on NO of 80 the nurse questioned her and said, Did I hear you correctly, 80??? Since then we have been able to come down to 20ppm which is the normal therapeutic dose used. So far Jane is tolerating the move. Her chest xray this morning shows a very small improvement in her lungs from yesterdays xray. Overall, there arent very big plans for today. Jane is so critical that any big move can cause her to fall in either direction so the team may make a wean on her life support and then give her several hours to see if she tolerates it. Slow……………..and…………….. steady…………..

The overall consensus this morning is that they dont know what the exact issue is with Jane. They arent even 100% sure that it is an infection causing her to have major lung issues now. What they DO know is that Jane has a very critical and rare heart condition. All of her other complications are made worse because she has such a sensitive heart. If a healthy baby had an infection in her lungs they would start antibiotics and most likely see improvements in the next 24-48 hours. Not the case with Jane…it takes much longer. If a healthy baby has liver disease they would treat it and see improvement quickly….not the case with Jane. In addition to all of her complications she has this underlying heart condition that adds to the mystery and severity.

We have not lost hope….she is the STRONGEST baby I know.

After we buried Jane a wise woman told me and Daniel that burying Jane was the easy part….the worse was yet to come. Our first response was, “Wait….really? How can it get any harder??” Well, she couldnt have been more RIGHT! It seems like each day we sink lower and lower and the only thing that has kept us from burying ourselves are the emails, text messages, phone calls, cards, visitors….those dropping by just to chat, drop off food, clean my house, get me out bed, sing to us…whatever it may be. One of the best feelings I have experienced so far is the afternoon after we buried Jane. A handful of friends and family came to our house to pray with us and as they sang the last song to finish up the prayer our house was filled with rejoiceful singing, calling out to our Lord and praising him. I wasnt in a “rejoiceful” mood, but I felt as if the singing was lifting me up and keeping me from crumbling to the ground. I just stood there aching but at the same time allowing the words and the spirit to cradle me. At a time of complete confusion and feeling completely lost I’m relying on God (and only God) to carry me through. I’ve realized that for the first time in my life I have NO IDEA what to do, how to be, whats to come…clueless. My life is 100% changed and I’m nervous and scared of what will come of it. Will I wake up in 6 months and find myself still lying in bed all day or will I have answers from God and resting in His peace? I’ve been encouraged to do whatever it is that I need to do to mourn, grieve and move forward in life. That is what I have decided to do. I dont know what that is going to look like, I have no road map or formula to plug in for an answer, but I’m taking each day and each emotion as it comes and embracing it. Many, many people have recommended that Daniel and I take some time to get away and re-connect. In fact a very dear couple has offered to send us away where ever we wish to go. For those of you who know me, traveling is one of my favorite things, but this time its not the same. Daniel and I dreamed of taking our next trip with Jane and showing her God’s land and all of His creation. As nervous as I am, I think it is going to be really positive for us. I’ve spent the last few months with Daniel by my side, but our focus has been only Jane. All we have talked about are TPN, heart defects, what the blood gas readings were….medical stuff.

Daniel and I are continuing on this journey of “life” and will begin to create and experience a new normal as parents. Although Jane is not with us physically, we will continue to walk the Good walk, to seek the Lord in all we do as if she were here watching us and looking up to us as her Mama and Papa. Jane will forever be our daughter…and I am still so proud to be the mother of a perfect child.