Anxiety in a man's heart weighs it down, But a good word makes it glad. Proverbs 12:25
I was feeling anxious last night. Eliana had started to spit up (a lot) after some of her feedings. This is unusual for her. I remembered after the second time that it happened that the cardiologist mentioned that this might be a sign that she wasn't tolerating the increased fluids. It had happened only after bottle feedings. Last night at midnight it happened at the bottle feeding and again at the tube feeding. I was starting to feel anxious and also thankful that we had an appointment already scheduled for today. Just reflecting on this verse though reminded me how very much a word of encouragment can lift the weight of anxious thoughts. How cool is it for God to give me this encouragment! I'm also very thankful to have many friends to speak these words to me!
On to today. Eliana had an appointment at 10:40. A time carefully chosen to work around her feeding tube schedule. Two of the younger boys had eye appts - also this morning. Roger took off from work and took the younger boys to their appt. The two older children came with Eliana and I.
First on the agenda was a weight check - 10 pounds 2 ounces!!! Yippee! She is still gaining. This is a 7 ounce increase from last week.
Next we are waiting in the room and then are told that the doctor won't be able to see us for another hour! That really messes up her feeding, but I think it's important to see him. So we wait. I decide that when her feeding time comes that she can take what she will from the bottle and I won't worry about it. We walk around some, sit in the large lobby area, talk and then get the phone call to go back to the exam room. (Don't you love having cell phones?!)
The cardiologist (Dr. C), listens to her heart and says that it is "galloping". Like Dr. L (our ped) told me last week, there is an increase in fluid there too. He ups her meds to try to get that under control. This may cause her to lose some weight. He then tells us that she can probably be kept comfortable for another 2 to 4 weeks. It is just a cycle now - trying to balance her medications, the fluid levels in her heart/lungs and the work of her heart. It's time to look at the calendar and pick a date for her surgery. *sigh* I knew this was coming, but it is still hard to hear and imagine what is before us. We have until mid to late April at the latest.
Roger and I need to sit down with our calendars and do some praying and planning. We need to begin looking at arranging care for our children and support for us while we are in the hospital. Dr. C said he expects Eliana to be in the hospital for at least 10 days and possibly up to a month.
That is a very long time! He did say that since we are comfortable with the feeding tube that this would probably get us home sooner. Even up to a week sooner. That's really good news! I'm hoping that this is a "worst case scenario" and know that it is better to be prepared for a longer stay than a shorter one.Recently a friend asked what I've done to prepare for surgery. Honestly, not much. I tend not to like to think about it in the concrete. I decided to ask for information on a heart loop that I'm on and I've started reading some about open heart surgery - and it's hard! The pictures are even harder. I know that this is done often and that it isn't an uncommon surgery. I know that the results are usually good. I know that we are at a very good hospital. That doesn't change the fact that this is our first time and that my baby is having very major surgery!
We will be meeting with the surgeon(s) the day before the surgery and will also have the option of meeting with them up to a week in advance. We aren't really sure if we need this meeting or not. It's so hard to know when everything is just so foreign to our experiences.
Please pray for these things:
1. The date - Wisdom in choosing what will be best for Eliana, the rest of our family and our support system. Wisdom in arranging a schedule for all of us while Eliana is in the hospital.
2. Eliana's health - If she gets sick it would delay her surgery. Dr C said he would want her healthy 2 weeks out from being sick. Please pray that our whole family remains healthy. I'm hoping that the worst of this winter is behind us now.
3. Family field trip - We are scheduled to go out of town with friends soon on an extended field trip. This was planned last summer when I expected it to be a piece of cake to travel with an infant. I'm just not sure that Eliana can make the trip. Or even if it would be wise to take her. She is not difficult at all - it is the managing of the feeding pump! The thought of missing out on this time with my family is hard too. Dr C encouraged us to have some good family time before the surgery as it will be difficult on all of us - with a lot of separation to come. I'm not sure if this would be good family time - or just a lot of challenges. Pray for wisdom as we make decisions about this trip.
4. Good communication - That Roger and I would be able to talk about all of the things we need to discuss. That we would make time to do this in the midst of an already very full schedule. Also good communication with our children in addressing their fears and concerns. This will be a challenge for all of us and I want us to be as prepared as we can be heading into the unknown.
A dear friend that has walked this road shared with me that she thought the time before surgery was the hardest part. And I've heard that the day before is a huge struggle. It helps to know that. This is hard. Very hard. I expect that it will get more so and hope and pray that I can learn to give up my anxious thoughts and allow God to carry me and fill me with His peace.
As always I am thankful for your support, love, prayers and encouragment.
With love,
Leslie
PS As an aside, I "let" Eliana pull out her feeding tube today. (Tape was getting loose and needed to be reattached. I didn't reattach it and as she was playing with it, she pulled it out.) Her tape was irritating her face a lot. Dr C gave me some duoderm to put on her face. I decided that I needed to switch sides as her cheek was too irritated to put more adhesive on that side. This side (that we switched to) is just difficult. I'm not sure why. It took me at least 5 tries as I kept hitting the gag reflex and it just felt "stuck'". This is the same side I did when Christopher was helping and it took multiple tries then too. Thankfully it is in. I'm definitely becomind more comfortable with it. I'm up to 7 times now.
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