After doing another echocardiogram this morning, the doctors have decided that it is best not to have Cora’s surgery today. They think that perhaps the fluid around her heart is a bit less than yesterday (which would be a good thing), but also the risk of nicking her liver during the surgery is very high. So, for now that procedure is on hold.
So, what does this mean for today? Right now, Cora is being put on an oscillator, another type of ventilator that will inflate her lungs and hopefully increase her lung capacity so that she can breathe more easily and require less oxygen. Pray that she will respond well and quickly to this new device.
p.s. This is James again, and just so you know, whenever I make a post it’s because Joel and Jess need your prayers even more. Please be lifting them up today.
Today was probably the hardest day that we have had since we began this journey almost two weeks ago. We were awoken with a phone call this morning from my mother telling us that the nurses said that we needed to get up to the PICU immediately. With a pit in our stomachs, we hurried over to find out that Cora had had a rough night, and that they needed to put her on a more aggresive type of ventilator. Her lungs were collapsed enough that the ventilator that she was on was not getting enough oxygen to her body. As a result her blood oxygen levels had dipped down into the 20′s several times over night. For those of you who do not know, (as I did not a few days ago) that is really low. Normally it should be 95-100. Something had to be done to help her, and the doctors felt that this was the first thing that she needed.
However, before they put her on the machine they had to do several other things that were not possible once she was hooked up to it. One of those being an echocardiogram. On the x-ray taken this morning, her heart appeared to be enlarged. So, they decided to make sure that her heart was functioning properly before anything else. It turns out that there was fluid surrounding her heart and thus was giving the impression that it was enlarged. We were so relieved to hear that it was functioning properly though. The doctors also decided to put in an additional line so that they would have more IV access. By the time that all of this was done the doctors felt that Cora had improved enough to not be put on the other ventilator.(PRAISE GOD!!!) She continued to be stable and showed some very small improvements the rest of the day. My sister, who is an ICU nurse, said that it is a miracle that Cora is in the condition that she is tonight. When she arrived this morning she did not hold very high hopes for the day, and was actually very nervous about the whole situation. Tonight we are praising God for bringing Cora this far. We are also praising God for the thousands who prayed for her last night and throughout the day today. We know that God heard our prayers, and that they were answered.
So, where do we stand now? As I mentioned above, Cora has a lot of fluid in the cavity around her heart. Therefore, she is scheduled to have surgery at 8:30 tomorrow morning to drain that cavity, and hopefully bring some relief to her heart and lung functions. It does not seem to be a major deal, but when ever your baby goes off to surgery it makes us as parents quite nervous. If you think of us in the morning please pray.
Days like today are not easy on parents. It was just yesterday morning that the doctors said they were encouraged with Cora’s condition. That was quite an upper for both of us. Today, Jess and I felt as though our hearts were being ripped out of our chests each time we turned around. The emotional exhaustion of the day has definately taken its toll on both of us and we are weary. Please pray for rest, and that God would continue to sustain us throughout the coming days.
The scripture that I have written below is kind of long, but it really describes our day quite well. It talks about the many doubts that we were having, and the feeling of abandonment that we experienced. However, if you read on you will find that we serve a god, who is bigger than any of our problems here on earth. Tonight as we go to bed that is the truth that we are holding on to.
I cried out to God for help; I cried out to God to hear me. When I was in distress I sought the Lord; at night I stretched out untiring hands and my soul refused to be comforted. I remembered you O God and I groaned I mused , and my spirit grew faint. You kept my eyes from closing; I was too troubled to speak. I thought about the former days, the years of long ago; I remembered my songs in the night. My heart mused and my spirit inquired; Will the Lord reject forever? Will he never show his favor again? Has his unfailing love vanished forever? Has his promise failed for all time? Has God forgotten to be merciful? Has he in ager withheld his compassion? Then I thought “To this I will appeal: the years of the right hand of the Most High.” I will remember the deeds of the Lord; yes, I will remember your miracles of long ago. I will meditate on all your works and consider all your mighty deed. Your ways, O God are holy. What god is so great as our God? You are the God who performs miracles; you display your power among the peoples. With your mighty arm you redeemed your people, the descendants of Jacob and Joseph. The waters saw you. O God, the waters saw you and writhed; the very depths were convulsed. The clouds poured down water, the skies resounded with thunder; your arrows flashed back and forth. Your thunder was heard in the whirlwind. your lightning lit up the world; the earth trembled and quaked. Your path led through the sea, your way through the mighty waters, though your footprints were not seen. You led your people like a flock by the hand of Moses and Aaron.
This is Uncle James again. Joel and Jess just finished meeting with the doctor this morning, which leads me to ask you to pray for several specific things. Cora was put on the ventilator last evening, but she still had some difficulty in breathing in the night. Her oxygen levels dropped pretty low about 5 different times. Today the doctor has decided to put her on a different sort of ventilator which will help to inflate her lungs a bit more. Parts of her lungs are deflated and even collapsed, so this new machine will hopefully help to restore some of her lung capacity.
As Cora goes on this new machine, there are a number of serious risks involved. Please pray that she will be able to tolerate the transition and that the ventilator will help her to regain ability to breathe well on her own. She will be on the machine for at least several days.
In addition, Cora’s heart is somewhat enlarged. She will be receiving an echocardiogram this morning to ensure that it is still functioning properly, but this is obviously a big concern as well, so please pray.
These many setbacks are so difficult for Joel and Jess. Remember to keep lifting them up too.
It’s hard to rephrase all that the doctor said to us just now, but just know that this is such an important time for you to pray for Cora.
This rollercoaster we are on is SO hard. The past few days have been good and we felt like Cora was making some progress. Like we were on our way to getting our little girl back. We even felt comfortable enough to both leave the hospital to go out to eat. Joel’s mom stayed with Cora while we were gone. When we were on our way home from dinner we got a call from Joel’s mom saying not to panic but we needed to come back to the hospital. Both of our hearts sank. Cora had been fighting her C-PAP all day and pulling her feeding tube out. She was a tired little girl and just wasn’t breathing like she needed to. The doctor decided to put her on a ventilator. He said Cora needed to rest and she was working too hard to breathe. It is so sad to see Cora hooked up to all those machines again. It feels like we are moving backwards instead of forwards. Cora will probably be on the ventilator for several days. The doctor is hoping that as Cora rests her body will be able to recover more quickly from the surguries and chemo. So, this is how we left our little girl tonight. Joel’s mom is staying in her room tonight so that we can try to sleep.
We continue to be amazed by all the people that know about Cora and are lifting her up to our Heavenly Father. Please continue to pray for our sweet baby. It is so easy for us to get discouraged and feel consumed by this cancer. Especially after a day like today. We don’t know how we would get through a single day without Jesus right beside us. As Joel and I talked about the ups and downs of today these are some truths that we are resting in tonight.
“You will keep in perfect peace him whose mind is steadfast, because he trusts in you.”
“Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness.”
Today is only day 11, however, it seems like a year ago since we rushed Cora here from her doctors appointment. The day was long and we still have not received any news on the type of neuroblastoma that she has. This along with the emotion of the whole experience has seemed to weigh heavily on all of us. Jess is still not feeling very good, but she did get a lot of good rest in today.
Cora showed some small signs of improvement today. They started weaning her off of the oxygen that she was on, and she seemed to do well with that. They also gave her a feeding tube through her nose so that they could get some nutrition into her stomach. Her incision continues to seep, but it has slowed down a lot today. Yesterday they found that she had an infection in her body some where. Therefore they put her on a very strong antibiotic since her immune system is very compromised from the chemo right now. We are really praying that we seem some definite signs of improvement soon, as it is so hard to see our baby in this condition.
It is after days like today that we ask why. We do not understand all that God is doing through this, or what all He is trying to teach us. As we were talking tonight we were reminded of the verse in Proverbs that says, “Trust in the Lord with all of your heart and lean not on your own understanding; in all of your ways acknowledge him and he will make your paths straight.” We can not forget that God is in control, and that he is bigger than the cancer or any other problems that we face. Here are a few things to pray for.
-Cora’s abdominal measurement is continuing to decrease.
-Her incision is not seeping as much any more
-For the thousands of prayer warriors that she has
-That her infection would go away
-That we would get some results on the type of cancer
-That the results would be positive
-For rest and health for Cora’s family (especially mom)
-That we could hold her again soon