It's in God's Hands

Here is the complete rundown from yesterday morning.

Jessica called me yesterday morning about 10:30 and told me they were scheduling a special meeting at 1:00 ET to discuss a plan for Rebecca since they have had her for a week and there has been no improvement. She called me after the meeting about 2:15 ET and we talked with the doctor on speakerphone. She explained to us that all of the team in the meeting was in agreement that they needed to do her procedure sooner than later. Although it was very risky, they thought it was more risk to do nothing. Looking at the schedule for the surgeons and team, they would need to do it that afternoon or it wouldn't be until after the weekend and they didn't know if she would make it that long. We agreed to go ahead with that plan. I was at work at the time so I immediately left and headed home to pack. On the way, I called a friend of mine with connections to pilots and airplanes. I don't know if they would want me posting their information so I will just say thank you to the owner of this plane and the pilot that flew me there. By the time we left, flew 1 hour and got a ride from another special person from the airport to Children's, it was about 2 1/2 hours. Again, not much time savings but it meant the difference in getting to see Rebecca before she went to the OR. Also, I missed any potential traffic issue and the temptation to drive 100 mph. So I got to her room literally just in time to say a quick prayer and kiss her goodbye. The nurse actually got smart with the doctor because he didn't want to wait just a few more minutes for me to arrive. We went with her down the hall and told her we loved her again and she went in around 6:30. The next 2 hours we waited in a family lounge and talked with some other parents which helped keep our minds off of the time. They called us a couple of times with updates. They brought her back to her room around 9:30 to do a handoff to the nurses. This time we used to eat some lunch/dinner. The surgery went very well, they cut her chest open by about 1" to visualize the heart to place the catheter. They placed a 3mm catheter first followed by a 6mm one just to do it in 2 steps. Back in her room she was pretty stable the whole night only having to get blood a few times and some other fluids. I stayed the night here in the room with her while Jessica went to RMH to get some good rest. I got none.

This morning they started battling some low blood pressure and minor desats. We were told that now we just have to wait for her heart to get used to it's new plumbing. Part of her heart just below the valve they opened is thickened from the extra workload of pumping against a closed valve. This thickening is what is now limiting her flow from being excellent through her newly opened valve. It is much improved from zero flow but may not be adequate when they turn off the prostaglandins.

Jessica got here mid morning so I caught her up on everything. About 12:30 I decided to go to RMH to get a little nap. I wasn't there 10 minutes and she texted me that I needed to come back. She was having issues with her heart. I came right back to find that she had developed an intermittent rhythm where her right atrium and ventricle were contracting at the same time called JET. When this happens her blood pressure drops and she desaturates. She did this for a couple of hours until they decided to do something because it was getting worse. The first thing they did was to cool her by dropping the room temp and by putting a cooling blanket under her. Rather than wait they also gave her another medicine that the doctor said she has seen make kids go into cardiac arrest. The head cardiologist was sick but came in at the request of the attending doctor. They chose to give the medicine. It had no adverse effects but also didn't control the rhythm. At that point we didn't know if that was the last option or not. It almost seems like there is always another option. This time it was to stick something else in her. Oh yeah with the cooling blanket you get a constant rectal thermometer. So this time she was getting a pacing catheter placed in her nostril down through her esophagus which lies right beside her heart so they can control her rhythm manually. This went very smoothly just like a feeding tube. Then they set some numbers and made her heart pump beautifully. With this being controlled they decided to turn off her prostaglandins which she has been on since birth to keep her PDA valve open. Now that she has had her procedure she shouldn't need it open anymore. Here's where the problem is. When her PDA closes the new opening may not be big enough to get enough blood flow to the lungs. Then she may turn blue and downhill from there. The other potential problem is that they can only leave that pacing catheter in for a couple of days or it will damage the esophagus. They think her heart rhythm problem is a result of the surgeon going through her ventricle to place the catheter and it is irritated. If that's the case they think it should self correct soon.

So here is what has to happen for a good outcome. The PDA (ductus valve) will need to close as soon as possible but there is no definite time that will happen. Her heart rhythm will have to correct itself within a couple of days before they have to remove the catheter. And when the ductus closes she will have to have enough blood flow through her ballooned valve to her lungs to oxygenate her whole body. If not, her sats will be very low and she could turn blue. There are some options to those scenarios but not good ones. Her kidneys and liver have suffered and are damaged but could be reversible if everything else starts working. She has had no urine output since before her surgery but the dialysis has been working well today.

She is in a very vulnerable state but the doctor still has hope and is clear to point out she may not make it. We're getting used to hearing that though. Very aware of her condition we place our trust in our Father and his plan. We don't know how much rougher this road will get before we reach our destination but we're holding on tight. Many of you have prayed the same prayer tirelessly over and over. God has listened and answered so far, why would he stop now?

Rebecca's Surgery Complete

I will give more detail when possible, but her surgery was successful. They opened her chest by about 1" to insert the catheter into heart. She did very well with no problems. She is back in her room now and doing fine. They warned us the next few hours will be rocky with her body adjusting to the change in her plumbing and the stress of surgery. Her right ventricle is thick because the muscle is enlarged. We will have to see if that is going to cause any problems when they turn off her prostaglandins that has been keeping her other valve open. Our God is higher than any other! He continues to answer prayer and bless us with miracles. Just wanted to get this out. Will post complete chain of events from today later.

Rebecca to surgery

It was decided at a meeting this afternoon to do her surgery today. I will elaborate more later. I made it here just in time to see her go to the OR. Please pray like you never have before. This is a very risky procedure but has to be done. God please protect our baby.

Lots going on...

First let's start with another answered prayer.  Joanna had a head ultrasound to follow up on the two level 2 brain bleeds and the dilated ventricles (risk of PVL).  Praise God both bleeds are completely gone and the ventricles are normal size. God is so amazing!!

Joanna got her first tub bath last night.  After the initial shock - she loved it.  

She also broke the 4 lb mark!!  

She is continuing to do well on the nasal cannula and if all goes well tomorrow morning in dr rounds, they will be moving her down to 3 liters.  I am so excited.  If I haven't mentioned it before, we can begin trying to breastfeed when she gets down to 2 liters!!  Here are a few sweet pictures of our angel.

Rebecca had lots going on today.  First the catheter for the dialysis was placed today at 8am.  In addition to what Brandon wrote this morning the drain was not draining.  They pushed 20 ml into her belly and expected it to drain out but nothing came.  They then pushed an additional 10 ml in with a syringe was going to pull it back out but instead got resistance.  They did an xray and found that placement was good (it was not up against a stomach wall).  Another physician pulled the cath out a small bit and turned it and then it began draining!!  According to her nurse tonight she is tolerating the dialysis well.  Because the surgeon putting the cath in thought he may have hit the cyst, they ordered an ultrasound.  It showed that the cyst is 1 cm X

1 cm smaller than before.  This may be because he punctured it - not sure but good news is that it is smaller.  

There is a level (lactade) that is checked on Rebecca that shows if her body is stressed.  The smaller the number the better.  She has been running around 3 but this afternoon she jumped up to over 7.  The attending physician didn't believe the number so she had them pull additional blood to test the level again and it was the same.  She then ordered them to pull additional blood an hour later to check it again and again it was the same.  After evening dr rounds, they decided to give her some blood in case when she was having her cath put in her heart became stressed because she did lose some blood during that process.  Soon after the blood began they pulled the lactade and it was down to 5 and then after the blood was all in they ran the lactade again and it was back down in the 3 range.

Rebecca and I had a good day today.  We listed to the local Christian radio station and I read her a children's book.  I sit by her side all day and talk to her about her sisters, the weather, what the nurses are getting ready to do, etc.  I want her to know that her mommy is there with her.  I also fill her with positive thoughts.  I know she hears the drs come in and tell me what is wrong with her but I don't want her to think they are right.  I tell her she will be fine because her and her sister are fighters and that God will heal them.

As Brandon said in the previous blog, we had a great time with our kids Sunday.  Here are some pictures of them with the girls.  It was so precious...Kenlee was waving to Rebecca and saying, "Hi Becca Sue!", she was so excited to see her; Katelyn was holding Joanna and patting the blanket saying, "Joanna, are you going to look at me!"; and Alexis just staring at Joanna as she held her and having Joanna hold on to her finger - all of these were precious moments we will never forget.

Update on Rebecca

The procedure part went ok this morning, but the results of it are not clear yet. The first attempt, the surgeon thinks he hit the cyst because a discolored fluid was drained. So, he tried a second time and went into the stomach. There was some blood in the stomach but they aren't too concerned, it may be a result of her blood not clotting well. Later, they came and put 20 ml of fluid into the catheter but nothing drained. Then they added another 10 and still nothing drained and they couldn't pull anything back. They thought maybe it was because the tube was up against the wall of the stomach, so they did an X-ray and found that is located in the correct place. The doctors are again scratching their heads to come up with a reason and plan. Keep in mind I am getting this from Jessica then trying to put it into my words so forgive me if I end up correcting some information later. She said in the last couple of hours her urine has cleared up and not bloody which is great. The kidney doctors said when looking at her chart they don't think her kidneys have been right since birth. We don't know what that means yet it may be not be that concerning since she has been urinating fine until recently. I will keep it at that for now until we get more definite answers or solutions. Rebecca is doing fine through and after the procedure. We are also awaiting Joanna's follow up eye exams and head ultrasound today. Will update later this evening. Thank you for keeping Rebecca in your prayers it has been a rough few days.

Rebecca Needs Prayer

On March 31, I blogged that Joanna needed your prayers. Now Rebecca finds herself in that position as well so I ask the same for her. When looking back at the last 7 days that she has been in the CICU, the doctors haven't seen the results that they had hoped for. Their plan was to get her past her infection and be in a place to have her procedure in the next few days. Instead she is still full of fluid and they can't get it off her like they want. Her urine has turned to pretty much blood. They have backed off on the lasix to give her kidneys a break. There have been kidney teams and liver teams in to see her today. They are going to take some blood to do some tests on her liver later today. They have also decided to put her on Peritoneal Dialysis  to help get rid of some of her fluid and are doing that in the morning. The amount of fluid she has is beginning to take its toll on her organs. The cardiologists have scheduled a special meeting to discuss their options for her procedure. Ideally, they would wait until she was back to herself but she may never get there without the procedure. It's a catch 22 so they may elect to go ahead with the procedure soon.

Now for some happy and funny news.

First, all three girls came with Jessica to Cincinnati yesterday to visit. Alexis and Katelyn got to hold Joanna so that was cool. Kenlee got to see both Rebecca and Joanna for the first time which was special too. The visits were very short because they hadn't had naps and were a little uncontrollable. Children's Hospital is very accommodating to families with children there. They have Child Life staff that is their job to help families in any way they can. All of us were able to be in Rebecca's room at the same time to visit and get a picture together. University Hospital is a different story. They have a strict 2 visitor at bedside limit. It really sucks because Jessica and I can't both be there with a visitor, not even our other children. We have dealt with the rule until yesterday. I asked if we could all go back for 10 seconds to get a picture. The nurse in charge was  apparently an enforcer because she wouldn't let us. So, one at a time, I took Alexis, Katelyn and Kenlee back to visit. Then Jessica did the same. They said if one of the other families saw us then they would want to. I guess they wouldn't have been able to see it was just for a picture. Anyway, there will be a complaint or suggestion coming. We then went to Ronald McDonald where we played outside and ordered pizza. The time flew by so they got quick baths and we headed home about 7:00. Alexis' last day of school is Thursday and wanted to know if she could go back that day when she gets out.

Joanna continues to do very well on her cannula at 4 L/min.

Jessica wanted me to tell you about her breast milk experience this morning. Somehow, she managed to throw 10 bottles into the dumpster at Ronald McDonald when she threw the trash out. She places a very high value on breast milk in case you didn't know. So, she went in and asked them if she could get a ladder so she could go dumpster diving. A guy there brought out a ladder on a golf cart and went in for the retrieval.

Knowing Urine Love

That's right, I've never been so happy about or followed so closely how much someone has pee'd. The first 16 hours today Rebecca has output 50 ml's more fluid than she has taken in. This is what it is going to take to get her swelling down. The doctor told me this morning that he wouldn't be surprised though if she begins to show that they are pushing her too much and they have to back off on the lasix and diuretics. So far though all of her numbers are looking great. She has desat episodes occasionally, but is usually corrected easily by suctioning and increasing her oxygen temporarily.

Joanna had a little big accomplishment today. She got her high flow nasal cannula lowered to 4 liters/minute from 5. The goal is to lower her 1 every few days. When she gets to 2, she can begin trying to eat from a bottle and eventually from the source of milk, if you know what I mean. I gave her a bath for the first time tonight. It was just a wipe down with a wet rag in her bed but it counts for me. It's great to actually start handling her like a baby some instead of feeling like she was untouchable. Her weight tonight was 3# 14 oz. With her rapidly approaching 4#, I expect her to be at the same weight as Rebecca in the next week or two. Rebecca weighs roughly 7# right now but they are dosing her medications at about 4 1/2# which means she has about 2 1/2# of fluid weight to lose.

I ran into a woman in the elevator today that made my situation seem pretty easy. Nothing more than a 10 second conversation and I found out she has been caring for someone in the CICU for 2 1/2 years. Although I am not happy to be in this situation, I am grateful for the the things I am learning and the people I am meeting through it. Tons of people just like you and I, mostly unnoticed at least by me, go through far worse life happenings than I, and I hope this little nudge will leave me a little more appreciative and empathetic.