Faith in Darkness

Making a decision to keep your child alive when they have been through so much and are in such poor condition without a single doctor believing there is a chance is a test of faith and really a test of so much more. It is a little easier when the child is opening their eyes and looking at you when the doctor is telling you there is no light at the end of the tunnel. Is she trying to tell you she's still fighting, don't give up on her now or that she's had enough and just let her go? Our hearts are telling us if God wants her he will have to take her, we will not give her so easily. We know his power can perform miracles against the greatest of odds. We don't know how many miracles he will continue to show us.

After the last couple of days I decided I needed to call Jessica last night and give her the situation in case she wanted to come back a little earlier. So after a long day at Holiday World yesterday she made the trip back to Cincinnati. This morning when we got to Rebecca's room her doctor gave us the same briefing that he gave me yesterday. He said they really are just doing things to her and not for her. They are basically just chasing their tails with fluid and blood pressure. She is not getting any better, kidneys and liver are shot and has same infection in her ET tube as before but worse. Her nurse gave us the option of holding her if we wanted. They told us she may not tolerate it and could make things turn quickly. They also told us if we wanted to let her go they would completely support us in that decision, but are completely leaving it up to us. We decided Jessica was going to hold her but we just couldn't let her go, not while she's looking us in the eye. She has only opened her eyes a couple of days in the past 2 or 3 weeks. So, Jessica is holding her now and she is doing fine. We have had a visit from the chaplain and have prayed numerous times. The doctors may think were crazy but we will not live with regret or wonder if giving up was the right decision. What if we had given up on Joanna during the pregnancy and terminated her to try to save Rebecca? Only we can make those decisions the best we can as we go along. God has a plan and we will try our best to not intervene.

Puzzled Cardiologists

Rebecca has cardiologists scratching their heads here. From her echo Wednesday they are puzzled as to why her cardiac ventricles continue to thicken, therefore shrinking the chamber size. The attending on this week said he has never seen such rapidly thickening. Yesterday morning he and another cardiologist went back and reviewed all 20 prior echocardiograms back to her date of birth. They were just stepping back and looking at everything as a whole to see if they could notice anything. They notice the biggest difference in mid May. Today they are going to do some more cultures, and get genetics involved to see if there is anything that has been overlooked. With her ventricles thickened and chamber smaller the blood backs up in to the atrium. If it can't get into the atrium it backs up in the vessels and stays in the body causing the swelling. They continue to remove the fluid with dialysis which sometimes works and sometimes doesn't. Because of the inconsistency of the dialysis they are still considering a surgically placed PD catheter. They have had to back off on the amount they are taking off of her because of the small ventricular chamber. If they remove too much the chamber cannot fill like it needs to and her blood pressure suffers. Now they are just trying to take off as much as they are putting in. Yesterday and overnight she had to get several rounds of blood and other fluids to help her blood pressure. This may be partly because they stopped her epinephrine. They are doing a head and kidney ultrasound right now to make sure all of the blood and fluids they are having to give her are not going somewhere they shouldn't. At this point I would say she's hanging in there. She's obviously a fighter like her twin so we know she can do it. 

We met my mom near Louisville yesterday morning so Jessica could go home for the recital tonight. Ashley, Deacon, Katelyn and Kenlee all came along with her. Our rendezvous point was Dairy Queen in New Albany. We managed to avoid the ice cream... sort of. When I got back to Cincinnati I met Jessica's cousin Joey that came down from Indy for the day to visit. We both pulled into the RMH at the exact time, which was kinda weird. 

Little improvements

Little Rebecca continues to get rid of her excess fluid through dialysis. There are still some problems with this process but it is working ok for now. Although they aren't doing much right now there seems to be a lot happening today. They gave her a dose of lasix this morning to see if her kidneys were ready to work a little. She has had a little urine output, we didn't expect a lot yet. Her doctor is waiting to talk to the surgeon so see what they want to do about the PD catheter. They may choose to replace it again like they did Friday or they may choose to put a different one in a new location. Most likely they will replace the current one since that worked last time. They just stopped in to do an echo to check a couple of things. They will see if her ductus has closed completely yet and see if her thickening of the heart muscle is going down any. After the echo they will make a determination if she can start to receive some milk through a feeding tube again. It would be a very little amount, 1ml per hour. They continue to wean her vent settings, exciting us to get her extubated but know it may still be a while. One of the cardiologists pointed out today that she didn't get this way overnight and wouldn't get better overnight. Doctors are very cautious to show us any optimism, so we create it ourselves. They all say virtually any set back would be hard to manage in her condition. Out of curiosity, I asked her nurse to see how many X-rays and blood transfusions she has had. The tally blew me away with 93 X-rays and 28 blood transfusions to date.

Since our pathology report of the placenta was inconclusive, both of the twins have had DNA samples sent to the lab to determine if they are identical or not. We should have the results in a couple of weeks.

Joanna continues to pack on the ounces. Last night she weighed 4# 15oz. With this trend she is sure to weigh 5# now as I am typing this. Unbelievable since she was 1# 10oz. just 2 months ago. She has been experimenting with breast feeding but will need some more time to get the mechanics figured out. She got her 2 month immunizations a few days ago which she didn't really care for. It had been a while since she had an encounter with a needle. It is the most wonderful thing to go see her and hear her just grunt and make noises. With each day she is becoming her own self and developing her own personality.

Since I flew here and we only have 1 vehicle here now, I will take Jessica to Louisville in the morning to meet my mom and the girls so Jessica can go home for a few days. This way I will get to see them for just a bit too. Friday night is Katelyn's big dance recital and Thursday night is the rehearsal. It's a big weekend that I will unfortunately have to miss.

Jessica was able to make it to her hair appointment last night she scheduled here a couple of weeks ago. She made one of those drastic changes this time with a short hair cut. She had been wanting this style for a while. We actually got pictures of a hostess at a restaurant Sunday to copy from. We both really like it, and yes I told her that.

When I was home last I got this picture of Katelyn and Kenlee. Every time I looked at it I just kept thinking of an album cover, so I emailed it to a friend of mine because I knew he would think of something clever to do with it. Thanks, Jeremy Secrest for your imagination and creativity.

Still Going Good

Things are going well for Rebecca again today. Most importantly she has continued to stay in the correct rhythm and is taking off fluid. For the 24 hour period ending at 6am this morning she had lost 71ml more than she has taken in. She has had a couple of her meds turned off today. One of them was because her heart rate got kind of low so they turned off one of her sedative meds and it came back up. The other one was one of her meds controlling her blood vessel dilation. They turned it down this morning and she tolerated it well so they turned it off this afternoon. Her blood tests have also been looking good throughout the day. Her doctor reminded us that she is very very sick and has a long way to go. Infection is the thing now we have to keep away. An infection now would be devastating to her. She is still on the 3 antibiotics which would hopefully fight any infection. They also started her on a fungal medicine because she has a lot of skin moisture and didn't want that to develop into anything. Yesterday in addition to having her chest tube removed, they took out her pacemaker wire and her NJ feeding tube out of her nose. Just a couple more encouraging moves. Taking things out of her body is much better than adding more. 

Thanks to our visitors that chose to take their day off and spend it travelling to Cincinnati and hanging with us for a while. Jessica's brother came in last night and my brother and his wife, and our friends Drew and Jessica and their little boy Mason came to see the twins. 

Here is a pic for AT&T if we just had Rebecca and Joanna in it

 Joanna smiling while uncle Josh was holding her

 Rebecca getting her CT Scan on Friday

Praise God!

We wanted to get this out so everyone could rejoice with us. If you haven't read the last blog you may not know what this means, but she has been in normal sinus rhythm since 2:45 this morning. You cannot imagine how good this news is. Again, it is one of those things that we take for granted on a daily basis but when it isn't working like it should it is very concerning. Last night around 11:00 when they did night rounds the doctor chose to remove the medicine that was supposed to be helping her rhythm because they thought is was just suppressing her heart rate and not actually correcting the rhythm. During the night her nurse warmed her a little and she also had to receive blood. It is not known which of those if any helped get her into a sinus rhythm. Also, her dialysis is working great with one minor hiccup overnight where the tubing was kinked and wasn't flowing. She is taking off more fluid now than she is getting. We left for 15 minutes this morning to go get something to eat and while we were gone they did rounds on her. They removed her chest tube on the spot. It was in place since her procedure but wasn't needed any longer. Also, they took her off lasix since she his getting rid of most of her fluid by dialysis. She has a little urine output but it is minimized by the help of dialysis. They also decided to cycle her dialysis ever 45 minutes rather than hourly to increase her fluid removal. They just replaced her IV pump tree and she actually got rid of about 4 IV pumps. All of these are very encouraging signs of improvement. God is revealing his healing power and answer to all of our prayers.

A few positives

We have some things to be happy about today so I am going to go ahead and blog about it. Jessica and I both stayed here with Rebecca last night as we will tonight. Jessica in a room down the hall in a bed and me in Rebecca's room on a chair. It was another night of little sleep, not because anything was necessarily wrong but just the anxiety and fear to go to sleep. We were both up around 5:00 because we thought the plan from the night before was to run the medication for 12 hours and pace along with it then we would have to come up with a new plan. Nothing really happened in the morning. The doctors would come in and look at her but never seemed worried about the pacemaker or her medication. They rounded on her later in the morning and went through everything because there was a new fellow coming on shift. The surgeon was at rounds but it was decided since they were able to take fluid off by syringe successfully all night they would not put another dialysis catheter in. They were going to try to hook her back up to the automatic fill/drain method instead of using syringes which is a huge infection risk because the have to break into the line every time to fill and then drain every hour. This time the attending from nephrology was at rounds I think because there has been some frustrations with the clowns they have been sending down. By late morning they had not shown up to hook their lines back up so expressed my concerns over the last few days where we just keep waiting on nephrology to show up. Our nurse also made a phone call and the fellow from the night before came down again but this time with the attending doctor. This time they got it all hooked up and it filled successfully and then drained successfully. So, after the syringe method all night and morning then the correct way this afternoon she  has still taken in more fluid than gotten rid of but tons better than getting nothing off. I think she is +55ml at this point today and yesterday she was nearly 200+. She is taking in 10ml per hour of fluids and meds and giving off about the same now finally. The hope is to start increasing the amount they fill with, therefore increasing the amount they are able to collect and drain. We would like to be even today or possibly tomorrow then start being negative.

Around noon we were tired of wondering so we asked the fellow and attending doctors what the "plan" was. We thought they were going to stop the medicine if they didn't see any signs of improvement and we knew the risk of prolonged pacemaker use. They said they talked to Dr. Nelson and he said they could go up from 10 to 20 on the medication for 12 hours and see what happened. If still no change they could go to 30 which would be at midnight. If no change after 12 hours of that dosage they would stop it. With the increased dosage there was increased risk of other arrhythmias or even cardiac arrest. This is another one of those moments you don't know the answer you just go with your gut. We decided to increase to 20 and see. Since she had shown some positive signs like urinating and getting some fluid off we knew we had to keep trying. The pacemaker was likely already doing damage but just a few more hours may be all she needs.

Early this afternoon they did a quick echocardiogram to check and see if the ductus had closed any more. It was about the same as Thursday. At 2:30 I stepped out for lunch just as the new fellow showed up to re-tape her pacing lead that is in her nose. Before I left I asked him how often they were going to turn off the pacemaker to check her actual rhythm. He said maybe every 8 hours. I responded abruptly with, "what". He said then said they could do more often and it wouldn't hurt, which I already knew. I asked him to do it now. If her heart could sustain a comfortable rate and blood pressure, even if the rhythm wasn't 100% sinus (correct) it would be better than having the probes doing more damage to her esophagus. We were told this morning again that this type of pacing hasn't really been used for prolonged (>24 hours) so they don't have data on when the damage begins and how bad it gets. We just know she couldn't survive without it. When I got back from lunch they were still messing with the pacing lead in her nose. It got out of place and they couldn't get it to "capture". I don't know what that means but it wasn't pacing correctly. I just sort of convinced him to turn it off and see what she would do. Now, 5 1/2 hours later she is still off of the pacemaker. She's hovering at the minimum acceptable blood pressure and heart rate of 100, but is managing ok. They could have to turn it back on, but any break from it is that much less damage it is doing.

As I was eating lunch in the family room I sat near another family that was arranging a chaplain to administer last rights to their child. I don't know the circumstances or what medical challenges they face, but all I could think is that their baby was still alive, why were they thinking about last rights? There is time for that if and when they pass. We have discussed absolutely zero plans about if Rebecca wouldn't make it because that is not our focus. There may be a time for that but it is not now. Jessica and her mom are now over visiting with Joanna. Poor girl is getting neglected the last few days/weeks. We hope if she notices that she understands her sister needs us right now. We love "Our God" and that has become our song in these days. It is Chris Tomlin's newest song. There have been 3 times it has come on the radio here in Rebecca's room that have been at just the right moment.

Near the Crossroad

I want to warn you, trying to recap today and make sense of it is not easy to do. Things may have not came out in order so bear with me.
Jessica allowed me to sleep in a little this morning to catch up from my sleepless night the night before. When we left Rebecca last night her sats were in the 90's. When Jessica arrived this morning they were in the 80's. An echo was done and it showed that the ductus had begun closing, which was what we wanted to happen. She was adapting to this very well with good saturations in the 80's. So, the first of 3 problems seems to be working well. She drained nothing during the day because something was wrong with the dialysis catheter. The people from nephrology came to work on it but couldn't get anything to drain, only to go in. This obviously wasn't good. It kind of got put off the rest of the day for a couple of reasons. One reason was Dr. Nelson wanted to get a CT scan of her brain to see if there was any bleeding or damage. He said this may be helpful in making decisions on how much more to help her. What he was saying was if she showed bleeding or signs of damage we may not want to do much else to intervene and start letting her go. The CT scan was ordered around 1:00 and they brought a mobile one to her bedside in less than 20 minutes. The scan took only a couple of minutes but we waited until around 5:00 to find out that she had nothing concerning going on with her brain. This left several options open for treating her,,,, we thought. After these results he was able to talk to the surgeon to get his opinion on placing pacing wires on her heart. The surgeon told Dr. Nelson that she couldn't handle this procedure. They would go back into her incision in her chest to do it but the problem is when he was stitching her heart together after her last procedure the sutures basically exploded back open because her tissue was so weak. They described it as like a kleenex. He had to put a ton of sutures in to get it to hold together. So, he was not comfortable in doing another procedure to place pacing probes. They decided to put her on yet another medication that is sometimes helpful in correcting the rhythm problem. They were going to do this along with continuing the esophagus pacing for 12 hours. The other reason her dialysis got put off was because Dr. Nelson was hoping the surgeon could work on it when he was finished with his other surgeries but he was too exhausted. He agreed to do it first thing in the morning.

At 7:00, several people had converged outside of Rebecca's room. There were liver and kidney people plus all of the doctors and a surgeon from cardiology. The liver doctors came in and explained to me that her liver was critically ill based on numbers from blood tests. There is nothing they can do to make it better it is all dependent on the rest of her getting better. Then Rebecca's nurse told me the doctors would like Jessica to come back (she was at UC with my parents and sister seeing Joanna) to meet about a plan. We both just thought this was to tell us they were going to fix the dialysis tube and get her to surgery to place pacing probes directly on her heart through her incision (we hadn't found out this wasn't an option yet). We quickly found out this was not the topic of discussion. The head of cardiology, attending cardiologist and since it was shift change, both day and night nurses were in this meeting with us. He explained to us that they were really to the end of what options they had for her. He thought they could still possibly do something to correct the dialysis catheter to get some fluid off. He also wanted to get our feelings on when was too much as far as medicating her to maintain blood pressures and such. He told us most of the team was questioning when we were going to stop and that enough was enough. He said he and the attending both were kind of the outcasts and have a little hope left and were willing to keep trying the limited options that were left.

I asked why this certain surgeon was the one that had to do this catheter in the morning. Wasn't there another doctor that could just move this one a little to see if it corrected the drain problem. That is all that happened last time is they twisted it a little and pulled it back and it started working. Dr. Nelson said yeah ok we can check if there is a general surgeon that can do that. Apparently there wasn't, so at 8:00 Dr. Nelson decided to try to correct the catheter himself. He put a wire in the original one and removed the tube, then fed a new tube back in over the wire. They were able to put fluid in and take back out easily. We thought this was the solution but nephrology came to hook her up to dialysis and the fluid wouldn't feed in or out by gravity but worked fine by syringe. They decided to just put it on drain overnight and let out whatever wanted to drain by gravity.

Around 10:00 I decided I was going to see Joanna for a little while since it was her birthday - Happy 2 Months. Jessica decided to go with me then I dropped her off back here at Children's while I went to RMH to get us a few things to stay the night with Rebecca. We got a sleep room with an actual bed just down the hall that one of us or maybe alternating will stay in. When we got back from UC they had decided to manually do the dialysis with syringe instead of just doing nothing overnight. So, every hour or so they will put 20cc in the catheter then let it set before pulling it back off with additional cc's. So far they are getting more off than they are putting in. This is great but it's a big mountain to climb, hopefully it will get us until the surgeon can place a larger tube in a few hours.