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.

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.

Little Changes, Good Story

Thankfully, there are no bad reports to make today. I'll start with Joanna today since Rebecca has been getting most of the attention. No real changes with her other than she seems to have started very minor desats during and soon after eating. They say this is a result of reflux sometimes. It usually only goes down into the 80's and sometimes high 70's but almost always comes back quickly on her own. Jessica has set a goal in her mind of July 1 for her to get out of NICU. I would say come home but we don't know yet if that will happen or if she will be staying in Cincinnati until Rebecca comes home. That's one of those logistical things that will just somehow work itself out.

Rebecca has gotten rid of very little fluid throughout the day so they are increasing her diuretic from every 8 hours to every 6. It sounds like there is an order of things that have to happen for her to get better. First her infection has to be weakened enough that her medicine will work to keep her fluid in her vessels instead of leaking into her tissue. Then the fluid can be carried to the kidneys to be taken care of. When the fluid decreases her lungs and heart will be able to operate more efficiently. All of that considered, by the end of next week she will have completed her 14 day antibiotics, all of her excess fluid should be gone and she should be in a condition to have her procedure done. That is everyone's goal. She has had a couple more of the desat issues today but nothing as severe as yesterday. The first time she just got irritated when they took her temperature and they said she clamped down and that is what dropped everything.

Jessica left this afternoon and traveled through some major storms around Louisville. She just made it home and has a fun weekend planned with the girls. The most fun will be Sunday when she brings them back to Cincinnati to see the twins. This time our plans are for Kenlee to get to see them also. We got pre-approval for this so it shouldn't be a problem with her age. Then I will take them back Sunday night when I go home.

I have to tell you about this story that Jessica passed along to me tonight. Granny Mary took Katelyn and Kenlee to the Holy Rosary Summer Social and they were walking around doing the summer social thing. They came across an unknown mother with her baby and of course the girls had to see, talk, try to touch you know all of that. Mary asked Kenlee if she thought the baby looked like Rebecca or Joanna. When Mary said that, the mother surprisingly said that she had been praying for those babies and following the blog. I don't know how many of those nameless people are out there praying for our babies, but I know we are sustained by those prayers so thank you.

As I am sitting here typing this, my Captain from work texted me and told me his mother passed away this evening. Please take a moment to pray for comfort for the Pauli family as well.

Seriously, what next?

Another miracle yet again...yesterday Rebecca's nurse and the charge nurse were talking about how the unit had no available rooms on the unit.  The charge nurse was actually contacting surgeons to see if any scheduled surgery's could be cancelled because the unit could not take any additional patients.  Our nurse said that we should be glad that we got a room the night before.  Thank God for the cardiologist who was following Rebecca in the RCNIC who just could not get rid of the feeling that Rebecca needed to be transfered to CICU.  It had to be the Holy Spirit tugging at his heart that Rebecca had to go to the CICU on that specific day at that specific time.  

One of my favorite moments up here so far was last night when Brandon and I went to see Joanna.  It was time for her to eat so we usually hold her while she gets her food.  She is always so awake so Brandon and I decided to have some fun.  We wanted Joanna to love music as our family does so we decided it was time for her to hear her first song.  We thought it appropriate for her first song to be "What Faith Can Do".  After enjoying her first song, we decided she needed to look at pictures and watch videos of her sisters.  She had some great expressions through this time and Brandon and I were cracking up at her.  It felt so good to go see her without worrying about her while we were there and truly having a good time visiting.

Now for today. When we got to Rebecca's room she had puffed up even more overnight instead of going down since starting her lasix drip. They decided to start her on another diuretic to get rid of some of the edema. She gained 500 grams or 1.1 pounds in 24 hours which was purely fluid. You cannot imagine how swollen she is. When they made this decision they said they didn't expect her to have negative fluid today only be less positive. This means her total volume intake of all fluids and meds minus her total urine output. She actually ended up being a little negative because she peed like crazy all day. We were very excited about this because in case I didn't mention it, she is very swollen. She looks pitiful. She had a blood test this morning that is used to gauge her degree of infection. It is called a CD64. on 5/13 her level was over 7 and today it was a little over 4 which means she looks to be getting over her infection.

This late afternoon proved to be a little more exciting than we had expected. First of all I must mention that Jessica's aunt Sue and her Castrale Grandparents came to visit today and also Chris, a friend from church to do some video and still photo work. Chris and I went to see Joanna first and he took lots of video of her doing her thing, sleeping and eating. When we left there we were talking about the "status" of Rebecca as we were headed over there. I told him she was stable, but only as stable as you can be 2 days after death being mentioned.  I jokingly said we could walk in there and there be a bunch of people in there doing stuff. That didn't happen..... yet. We got to see Rebecca and she was doing just the same so he began his recording of her. Her nurse today was in training because she was kind of new to the CICU unit, so she had another nurse watching over her. She was telling us about how she was comfortable with pretty much everything except for when things crash quickly. We actually told her that wasn't going to happen in this room. Well Ms. Rebecca decided to put on a little show for Chris and defy us. He was in the corner camera rolling when she decided to desat a little down into the 70's. No big deal, the "mentor" nurse came in and asked if she needed any help and she said no, we were just suctioning her. Usually this is no problem and she comes right back. Not this time. This happened a few days ago too. Before we knew it, her sats were in the teens, her heart rate dropped, two respiratory nurses and a fellow came in and they were bagging her, putting a different suction down her tube into her lungs and trying to get her back up. It definitely got tense for a little bit, but Chris kept the camera rolling. We both kind of thought they would make him stop recording but they were a bit too occupied I guess. It was no time and she had recovered and back to normal. She had just accumulated a lot of thick mucus again that was clogging things up. Soon after that, we were told about an X-ray that she had gotten early this morning for her left leg. Seems there was concern Tuesday night about her leg being a little "floppy" around the ankle and there was some bruising. X-ray revealed a fractured tibia (larger of the 2 lower leg bones). I was immediately concerned about when and how this could have happened. We knew she was susceptible to fractures because of the medication she was on, but she had signs on her bed to handle her with care. None of the doctors or nurses could tell us what prompted this X-ray to be done. Did someone see something from another one of her X-rays of her chest, did someone mishandle her and suspected they fractured it by accident. We don't and probably won't know exactly what happened but we know the Fellow from Tuesday night ordered the X-ray because he thought her leg/ankle was floppy. It apparently isn't floppy from the fracture because X-ray shows it is not displaced. A couple of Orthopaedic Doctors were there to show us the X-rays and wrapped it in a cotton gauze-like wrap. They expect it to heal in a week or two with no problems. Just another day in our life of ups and downs. Jessica and I ended our night again with Joanna which is such a blessing to see that little angel growing and developing everyday. She was having some very minor desat issues tonight so we only held her for a little while then put her back into her bed to chill. Her nurse tonight was a new one for us. She has had Joanna before but it must have been a night we weren't there for her shift. We were showing her some pictures of the twins on blog when she saw the "The Twins" "followers". She said it was like the twins had disciples.

Looking Up Again

Rebecca's night last night and today was stable.  It is amazing to see how her numbers (blood pressure, o2 sats, heart rate) have improved since getting up to the CICU.  It shows that she has been moved to a place that can better treat her with medications they have up here.  You can tell that everyone knows what they are doing and really works as a team.  She is on room air and sat's are in the mid 80's, heart rate is in the 150's, and blood pressures are better than they have been in weeks.
  
The physicians are still trying to put together the pieces to figure out what symptoms started first, illness symptoms or heart failure symptoms.  We had one doctor this morning feeling that since her numbers have leveled out almost immediately after putting her on the medicines up here, that she is not sepsis but having heart failure.  Then we have another doctor that still thinks she has an illness but still uncertain at this time what that illness is.  The cardiologists will be talking to the surgeons to see when Rebecca is ready for her procedure.  The cardiologist feels that she really needs to get her procedure soon because of her heart failure.  That timing is somewhat dependent on her infection recovery.  He was guessing maybe doing it in the next couple weeks.  All of this seems good as we will hopefully be on the road to recovery but also very scary.  I learned awhile ago that the procedure is not just a regular cardiac cath but something more complicated since she has both pulmonic stenosis and atresia.  


At evening rounds they decided to continue the antibiotics because they still think she was/is infected with something. They are doing another blood test tomorrow that gives a pretty good indication if she is infected. The last one she had was the 13th and it was a pretty positive indication. They also decided to begin a lasix drip that will make Rebecca pee the tissue fluid out which will make her look much better.


Joanna is doing so well.  They took her feeding tube out of her mouth and put it with the nasal cannula.  You can now see her entire face.  Here are some pictures we took tonight.  Notice she has a dimple in her chin - just like her daddy!


Thank you all for the prayers.  I am confident that we will pull through this and she will continue getting better.  My sister-in-law shared this verse on her blog, "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours."  Matthew 11:24  I will not allow negative thoughts to enter my head.  My girls will be coming home with me!!  


Both grandmas came to visit the girls today and got to both hold Joanna for a while. They of course loved the experience. They also hauled a ton of breast milk back home like a couple of moonshine bootleggers, hidden in coolers in the back of the vehicle. I forgot to tell the guys at the station, that is what my mom has been using to make those cookies we love so much! - (Brandon)

Skimming the Tree Tops

There was so much that happened today I will never be able to regurgitate it all but I'll try. It started when Jessica called me while I was mowing the yard first thing this morning. She was crying and I couldn't understand what she was saying. Eventually I got that she was scared and the doctors kept referring to Rebecca as "a baby this sick". I knew it was time for me to get to Cincinnati. She soon called back and told me they were moving her to the cardiac ICU. There she will be able to be monitored better for her heart. From what I understand, the cardiologist that has been following her pretty much demanded she be moved. I quickly got cleaned up, packed my bags and left town. The 3 hour drive between Evansville and Cincinnati gives plenty of time for every possible scenario to run through my head. Every time I started to think negative I just stopped and said God you are not going to let this happen. I arrived to find Rebecca in her own huge procedure room. There was a stand with more IV pumps than you have ever seen. Her bed and body is a tangled mess of tubes and wires. They were trying to get some more access to her veins/arteries for everything she has to get. They started with her left arm and couldn't get anything. Then they tried her right thigh for femoral vein access but no luck. To our surprise they took her off of the oscillator and put her back on the conventional ventilator. They said it was mostly because the oscillator was making it difficult to get her lines in because of the movement it causes. She transitioned wonderfully back to the ventilator. They were giving several heart medicines to control her blood pressure. It's not just as simple as her BP though. Her vessels are "leaky" meaning the fluid is not staying in the vessels throughout her body it is leaking into her tissue making her very swollen. The complexity of the problem has to do with the amount of blood going to her lungs through the valve they are keeping open and the amount of blood going to the rest of her body. Basically her body is wanting to send too much blood to the lungs and not enough to the body. So they are trying to correct with several medicines. They feel this is all being caused by an infection or sepsis although they have not pinpointed it. The plan is to keep her stabilized with medicine until the antibiotics can wipe out the infection. They had doctor rounds at 5:00 here and that is when we met the overnight attending Doctor. He is amazing. He can be completely in the cardiac zone one minute, be personal and tell us what's going on the next, ask a nurse how she is doing, back to the cardiac zone and then talk baseball with me. They completely know how to handle her situation. Right after rounds all of the doctors and RTs and a couple of nurses came back to Rebecca's room. Their plan was to change her ET tube to one with an inflatable cuff because she was leaking and it wasn't ventilating her adequately. Then they were going to try her left thigh for femoral vein access and at the same time get another line in somewhere for arterial access. They tried her foot first with no luck. They ended up having to do a "cut down" which means making an incision in her wrist to see the artery then put a line in it. This line allows them to monitor her blood pressure in real time so they can make medicine adjustments on the fly as needed. They still didn't have a vein accessed but she was actually kind of stable. About 7:00 he told us she is very very sick and could die. He said she was just "skimming the tree tops". We suspected this, but to hear a doctor say it verified it. Although we don't put our trust in doctors telling us our girls aren't going to make it, we were very happy with his complete honesty. He then said he thought she was going to be ok. A couple of hours later he said we are now trending in the right direction. They decided about 9:00 to go for her vein in her neck. They knew they were going to need it to give her fluids through the night. It went in pretty easily. So just to summarize, she has a PICC in each arm, a venous line in her neck and a arterial line in her right wrist and that's just the IV's. She has a catheder in down below, ET tube, NJ feeding tube in nose, oxygen monitors on her forehead and back, heart monitors, temp probe and O2 sat sensor. Tonight she has 2 nurses assigned solely to her and has had most of the attention the whole night. It is now 11:00 and they have her settled in and stable. I did finally get Jessica to leave and go see Joanna around 8:15 for a couple of hours. I knew it would be good for her to experience something positive for a change. They moved her feeding tube to her nose so she can see what it's like to have nothing in her mouth for once. This hopefully one step closer to feeding normally. 

Thank you everyone for the prayers the last few days. Jessica had to bear most of the burden here alone and she appreciates it. Thank you also to the wonderful co-workers at Methodist Hospital for dedicating a time to collectively pray for Rebecca. Also, I don't know how, but my shift at work tomorrow is being taken care of so I can stay here - thanks!


I know these pictures of Rebecca aren't the most pleasant but it gives an idea of what's going on. Joanna is loving life on her new cannula.

Rebecca's Worst Day

The last couple of days have not gone well for Rebecca. She continues to show no improvement from whatever it is that is making her sick and the doctors cannot find what is causing it. They originally thought it was the Pseudomonas but the antibiotics for that are not making her better. They are now also treating her for a fungus although they haven't gotten the results from the test yet. It takes several days to get the results so they went ahead and started the medication. She is in the worst condition she has been yet. Her blood pressure fell to 44/12 late this afternoon. They were going to give her epinephrine but they took it again and it had came back up to 49/29. She has required a lot of oxygen supplementation today to keep her sats up. They have put her on a morphine drip to keep her sedated and comfortable so she doesn't pull the ET tube.  This drip seems to not be enough for her so they are also giving her morphine as needed and verset.  At one point today Jessica texted me and there was the attending doctor and 2 each of Cardiologists, RN's, Respiratory Therapists, Residents, and Fellows at her bedside trying to figure out what is wrong with her and how to treat her. She was requiring 60% oxygen and her sats were still only in the 50's (she needs to be 74-84).  They moved her into some different positions to see if she just wasn't comfortable but nothing was working.  They then suctioned out two nice size thick spit balls out of her ET tube.  After those where out she started improving.  Jessica has had some very rough days with Rebecca as you can imagine. Thankfully, Joanna is doing great and is windowing on her high flow cannula with no problems. Hopefully, she knows why less time is being spent with her the last few days as we are with Rebecca. Jessica's father and sister went to visit today but I'm sure the visit wasn't as enjoyable with everything that was going on. We pray God will take her sickness away and put her back on a clear path to recovery and her procedure. She is so swollen and looks nothing like she did in the pictures from a few weeks ago. This type of sickness can be very concerning if not identified and treated in time. We trust that the doctors are doing everything they can and God will answer our prayers and turn yet another dip in this roller coaster into more good days ahead. Thanks for continuing to follow our girls and pray for them. These are the woods we knew we weren't out of yet.

Thankfulness

It's hard to find the words to express my feelings when it comes to accepting favors and gifts during all of this. There have been several times where Jessica and I just weep in response to the goodness that God undeservingly gives us. I actually become more emotional about the good than the bad. I would say we deal fairly well with the anxiety, fear, frustration and even sometimes anger. When it comes to the other end of emotions - joy, gratefulness, appreciation, it's a bit overwhelming sometimes. The support during something like this is really the backbone of the entire situation. It is delivered in obvious and tangible ways and in ways that we may never see or know about. We just know that each day there are people that genuinely care. It is ultimately faith that carries us though. Just before getting that call from Jessica on my way home early Saturday morning I was listening to K-LOVE and they read this scripture. I'm sure I received and processed the news differently than I would have if I hadn't just heard this. How do parents receive news that their 7 week old girl just had to have chest compressions and be intubated for the 5th time and not completely fall apart. I'm here to tell you it's not without this faith.

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33

 "Thank You" seems so petty to say to some of these things. When we say "Thank You" to God every day, we wish there were some other words that meant Thank You but to another degree. Until then, we will continue to say "Thank You" and mean it from the depths of our hearts. 

We have so many people that have done so much for us and continue to give and ask to help. Here is another example of that where my brothers from my other family have organized a BBQ sale. 

Rebecca again extubates

Jessica started this post then I added to it.

Joanna is continuing her windows off of CPAP. During the windows she is so awake, looking around and taking all of the sights and sounds in. You can tell she is really trying to focus on things. In order for her to go home she has to be completly off oxygen and eating from the bottle or breast. When holding her and seeing her looking around everywhere and focusing on us trying to figure all of this out, I think back to all of those doctor visits where we were told she wouldn't make it, and that first couple of days when things looked pretty bad. It's truly a miracle of God that we are able to experience these joys of her precious life.

Rebecca has had a few set backs. I got a call from the doctor around 5:30 this morning that she had turned her head again and gotten her breathing tube out again. Brandon was on his way home for work so I had to call and give him the wonderful news. This time her heart rate dropped into the 60's during this so they had to call a code and begin chest compressions in addition to bagging her. Being on the oscillator is pretty uncomfortable since it is breathing so many breaths into her so most of time she is kept sedated. As the medicine wears off she begins to get agitated. It has been decided that for her well being she will be given sedation medication as she appears to be getting uncomfortable. Throughout the day her settings on the osillator were brought down. Brandon got a call this afternoon from her nurse that said she had a fever of over 102 but it has since gone down. Overall the doctors feel that all of her issues (billi levels up, swollen, fever, lung problems) are all related to this infection. They got positive results from her ET tube culture for Pseudomonas, the same infection she had before. They think she didn't completely get rid of it with her 10 day antibiotics. This time they are running it at least 14 days. They are checking now for fungi.

Brandon and I decided to go on a date Friday night! We met up with Brittney and Eddie (co-worker of mine) at the Reds/Cardinals game. They stayed the night in town and visited the twins today.

Rebecca Continues to Challenge

I arrived at Rebecca's Pod this morning to find her getting an X-Ray. This was ordered to check the growth that they found on her ovary. She also was to get several blood cultures taken and a urine analysis. Soon after they finished her X-Ray at 9:15 she had to get her eye drops to dilate the eyes. The Ophthalmologist came around an hour later but one eye had not dilated so they gave her another drop and came back a little later. In this time her nurse and another nurse were working on setting up her IVs to be able to take her to get her MRI. They had redo the setup because they had to have 30' of tube because the pumps couldn't be in the MRI room. The eye doctor returned and he said she went from a zone 2 stage 1 in one and a zone 2 stage 2 in the other eye to both eyes being zone 2 stage 2. Still no big concern, but will check again next week. He explained the worst case scenario to me but I won't bother with that now. Her first field trip was down to the first floor to radiology at 1:00. She received a dose of sedation before she left her pod so she would be still during the MRI. Her nurse and I stayed in the room with her to watch her vitals and more importantly her O2 sats which usually fluctuate. She actually did surprisingly well through the whole thing which lasted about 40 minutes. When we got her back to her Pod and got her settled it was around 3:00 and I hadn't been to see Joanna yet.

When I got to see Joanna she had just finished assessment so I got to hold her for about 2 hours. While I was holding her they moved her isolette out and replaced it with an open top bed that has a warmer above it. She isn't needing the warmer but they didn't have a regular bed available. They also moved her down one spot because she got a next door neighbor that was just too close for comfort. They put her back in bed while I stepped out for shift change. While I was out I called Children's to find out about the results of the MRI. The doctor in RCNIC couldn't really tell me anything more than what we already knew. She wanted to let the surgery team look at it and discuss the plan tomorrow at rounds. After shift change I went back in and decided I might as well hold Joanna again since it is so easy now to get her out of her new bed. About 8:20 Children's called but I couldn't get it because I was holding her and you're not supposed to use your phones bedside. I figured they were just calling with some more information about the MRI. About 9:45 they called again. I was getting ready to leave anyway but now I knew something else was up because they wouldn't have called twice unless it was something significant. I put Joanna back in her bed and went to call them back. Her nurse explained what had just happened. Apparently, some time after I left there, she showed some respiratory issues. They pulled a blood gas and her CO2 was 130 which is extremely high. They also had a chest X-Ray and she had a lot of fluid on her lungs. They were going to give her sedation to help relax her so she wouldn't fight the ET tube. They also were going to give her lasix to get rid of fluid. I left UC and went to Children's. When I walked in there were about 6 people around her bed, again, not a comforting sight. Worst of all there was a big, ugly, loud machine called the oscillator chugging away beside her bed. We are very familiar with the oscillator since Joanna spent several days on it. The doctor met me and said the attending doctor that was on call decided this was the best for her. They had maxed out the normal ventilator settings and it was not correcting the lung issue. They are running all types of tests to check for infection again. Proactively, they are treating with antibiotics, again. Seems like I use again a lot. They did another blood gas and chest X-Ray about 30 minutes after being on the oscillator and her CO2 had dropped into the 70's which is still a little high but much better. Also, her chest X-ray showed improvement. Things seemed to be headed in a better direction when I left around 11:30 with the only issue being a low blood pressure which is a side effect of the oscillator and pulling off the fluid. They were going to talk to cardiology to see what they suggested if it continued to stay low or drop even further. I pray I don't get any calls tonight.

Now to clarify the heart procedure issue that came up yesterday. At rounds with Rebecca this morning I counted 18 people. There are usually 13-15 I would say. They went through their usual routine then cardiology got to explain the plan. They described a miscommunication on their part, with too many communicators not communicating. The whole explanation was about a 20 minute conversation but basically the plan has always been to do the procedure when she is around 2.5kg or 5.5lbs. More specifically, the plans is to wait as long as possible while at the same time trying to get her extubated. When she gets to the point where she is ready to be extubated they will do the procedure then. During this conversation, the senior cardiologist said he expected this to be late next week or the following week. That was until tonight's episode, which is sure to affect that schedule.

Interesting Day

Today was a big day for several reasons.
1. Joanna had her liver ultrasound done and found that the spot that they had been calling hemangioma is now half the size it was last time. Therefore, it can't be an hemangioma because they don't shrink, but a healing bleed. So, back a few weeks ago when her blood counts were low and the thought this may be the problem it probably was but they mis-diagnosed it as a hemangioma.

2. Joanna also had her echocardiogram today. It was funny because the girl that did the ultrasound saw Joanna's last name and she told me she met another couple recently that had that last name but pronounced it . She recognized the name because her name was Barnard pronounced . Then we both realized that we had met each other when she did Rebecca's echo a few weeks ago. I assured her I didn't have any other infants at any other hospitals. The results of the echo showed she still had the PDA open and now showed another "hole" called a PFO. This is a "hole" that connects the top two chambers by design while in the womb. It is also supposed to close by a flap at some point but hasn't yet. The Dr. said it wasn't an issue now because her blood pressure in those chambers was still ok. They will follow up with another echo in a few weeks. I am unsure if they missed it in her last echo or if they just didn't mention it because it wasn't a worry.

3. The spot in Rebecca's abdomen was not clearly diagnosed by ultrasound so they are doing an MRI tomorrow at 1:00. They think it is a cyst and they said it was lymphatic. They originally thought it was on her ovary but may be on her liver or small intestine. At one point this morning, between 3 different surgeons Jessica got the impression they were going to do surgery today. They decided to do the MRI to get a better picture.

4. The biggest and most upsetting news today was what transpired during doctor's rounds with Rebecca. Yesterday, Jessica was told by cardiology that they were going to try to get her scheduled in the next couple of weeks for her procedure. Today, the cardiology team was at Dr. rounds which is a first that I know of. Out of the blue they changed the plan to hold off on her procedure until she was near being discharged as long as the reason for her still being intubated wasn't because of her heart. Jessica said it clearly caught the medical team off guard. We have 2 issues with this decision. First of all, why are they changing their plan when they have been saying all along between 1.5 kg and 2.5 kg. She is 2 kg today. The other issue is, we have been questioning her intubation for weeks ever since Joanna was extubated. I didn't realize it until I just went back and looked, but Joanna was extubated at 9 days old. They are now 44 days old. Joanna had much worse lungs mostly because of her lack of fluid and more prematurity. Today we are told that her heart condition is not contributing to her still being on the ventilator and they will start weaning her from it aggressively. Needless to say we are quite upset and I will leave it at that until we get more answers tomorrow. After Jessica and I left, cardiology came to meet with us so we will meet tomorrow. As soon as I got here we did talk to her attending doctor and it sounds like they were planning on the procedure being sooner rather than later so they elected to leave her intubated until after the procedure. If they had known cardiology was going to put it off they would have worked on getting her extubated long ago. Anyway, I expect some clear answers in the morning and hopefully it all makes sense.

Aside from all of that, believe it or not they are doing very well. They are both keeping their oxygen saturations up relatively well and seemed to be resting comfortably today. Please pray for an MRI that shows nothing to be concerned with, that Rebecca will transition off of the ventilator quickly, and that their doctors and other staff are providing the best care possible.

Special Mother's Day

A few weeks ago when I noticed Mother's Day was approaching I realized a logistical problem. I knew Jessica would be in Cincinnati based on my work schedule but I didn't like that Katelyn and Kenlee would be in Evansville. My solution was to load up and go there for the day but Jessica quickly reminded me of how the last one day trip was for the girls. Basically, the time we would be there would be the time they should be napping, which means not the best for having fun. She suggested meeting at Holiday World. The nurses commended Jessica for her doing that for her kids on Mother's Day but she had to testify that it was just as much for her. I took the girls to Church which was odd without Jessica on Mother's Day and Jessica spent the morning with Joanna and Rebecca. Coming from someone that dreads every trip to Holiday World, we had one of the best days ever. We all had an awesome time mostly because the crowd and weather was perfect. We rode several rides over and over without having to get off and Katelyn was happy to learn that she had grown enough over the winter to qualify for a few more rides. Granny Mary and Dave spent some time with Rebecca and Joanna while mom was away.  It was a special Mother's Day for Granny as she was able to hold Joanna for the first time. 

Here is what has been happening with the twins the last few days. I'll start with Rebecca. When checking her blood they found that her glucose was in the 20's and it is usually in the 60's. They increased her feeds which corrected her glucose and grew some cultures from her blood but resulted in nothing. Saturday was another one of those days where we just wonder what will be next. Jessica called me upset because while she had left the pod for Dr. rounds on the other babies, Rebecca had extubated herself again. She went in to see her and they were in the process of getting her re-intubated. It all went smoothly, but the whole event was pretty draining for her (Jessica). Today her heart rate has been pretty low so they are watching that. She had one of her PICC lines removed so her other one with her heart medicine is being shared for other fluid. Jessica related her heart rate decrease to about the same time they started sharing her single PICC. Could be a coincidence but they are going to just watch and see. Jessica noticed a couple of days ago that she looked swollen in her face and neck. She had a chest X-ray when they replaced her tube and it didn't show any fluid around the lungs.  It may just be a place where she is collecting some excess fluid but they will continue to watch it.  Also, her bilirubin level was high today which has them interested in the liver. She had a scan done of it tonight and the liver team is going to be looking at it tomorrow.

Joanna had her share of problems too Saturday. Her red blood cell count was low so they were considering another transfusion but that hasn't been necessary yet. The last 2 days she has been on room air 21% pretty much all the time and her sats have been in the 90's. Today she had her eye exam and it was very good. It was a Zone 2 Level 0. Because of her red blood cell count they are going to do another scan on her liver tomorrow to make sure the spot that they think is an hemangioma is not changing. She is also going to get another echocardiogram tomorrow to see if her ductus valve has changed.  She has started the process of getting out of her isolette and into a "big girl" bed.  As long as she keeps gaining weight and keep sher body temp up she will be moving soon.  With this "cot bedding" process she is able to wear clothes!

People who inspire us

Rebecca is still having some breathing issues but she usually can come back up on her own without needing any oxygen help.  The cardiologists are scheduled to have their weekly meeting tomorrow at 2pm.  They will be discussing Rebecca and ensuring that they are all on the same page with the plan for her surgery.  Brandon and I were told last week that Rebecca is more prone to bone fractures because she is being given Alprostidil (heart drugs) and TPN (nurtrition).  These two things by themselves make the bones weak so she has double the chance of having bone fractures.  These fractures can occur during any type of movement that we do with her.  As much as Brandon and I love to see her dressed in clothes we decided to ask not to have her dressed in clothes and to be swaddled.  As soon as she is off of these her bones will be back to normal.
Joanna did two windows yesterday and began acting worn out again so they are stopping the windows again for a few days.  She is doing very well, most of her days not requiring any extra oxygen.  She is getting very close to getting out of the isolette and into a somewhat normal bed.  The next bed she will go to is one that is open but still has a warmer above the bed incase she needs a temperature boost.
Thoughout this journey I have come to realize how much the nurses who are caring for my babies mean to me.  Don't get me wrong there are those who got into this profession for all the wrong reasons but when you get a nurse whose heart is in her job, you know it.  I can't imagine going through this without trusting the people who are caring for my twins.  I want to acknowledge a few and what they have done to stand out in my mind.  Lindsay (Joanna's primary nurse) is very personable, talking with us as if we have been friends forever; she is always so gentle with Joanna and makes her look so comfortable; she tucks the cloth that I have my scent on up to her face or has Joanna hug it - I love seeing that, it makes me think she and I are loving on each other that way.  Jodi (a night nurse of Joanna's) and I hit it off right away.  She has triplets herself who were in the NICU so she knows what we are going through.  The first night she had Joanna I shared with her Joanna's story and she was so touched.  She now signs up to have Joanna each time she works and says she loves this little girl - funny thing is I know she really does love her.  Chris (Rebecca's associate nurse) has been fantastic with Rebecca.  She has been her nurse more than any nurse we have had .  She knows Rebecca so well and that gives me a sense of peace when I am not with Rebecca.  She is so knowledgeable about the policies and procedures and knows what she is doing.  Thank you nurses for the work you do and please know that you are touching lives every shift and we do not forget you - even when we are home, you will always be a part of our lives.  Happy Nurses Day!!
I also wanted to take just a moment to thank each and every Child Care staff member who has loved my kids their entire lives.  Each one of you have been so good to my kids and have made this time in their lives so much easier for them to accept.  As I was getting Katelyn in her class Ms. Lori came into the room and needed me to sign a paper for Kenlee.  As I was leaving she let me know that Kenlee, who was crying when I left her, was just fine and she found the smallest babydoll they have and was carrying it around and calling her Becca Sue.  Ms. Nancy has sent us emails periodically letting us know that the girls are being taken care of that we should not worry about anything.  Ms. Nancy and Ms. Lori felt that the need to tell me this because they care for our family - thanks again we love you all.  Happy Teacher Appreciation Day!!
I know this is a really long post but I would like to share two more stories that really brought me back to reality.  I met this mom today at University Hospital who had twins, a boy and a girl, at 26 weeks.  Her son is fighting a good fight and getting better but her daughter passed away 6 days after being born.  I can't imagine having to continue going into the NICU where your child passed away at day after day to see your other child who was still there.  Even through her loss she found the blessings in her situation.  Her baby girl's water broke at 23 weeks but she was able to stay in the womb for an additional 3 weeks which gave her brother a good chance at life.  You see at 23 weeks all the research says the chances of a baby surviving is slim to none.  She also said that this whole experience has brought her closer to God than ever before.  My heart goes out to her.  Earlier this week the NICU was preparing to get 24-week twins but I learned today that neither of them survived.  These stories bring me back to reality of how blessed our family has been through this.  Thank you for all of the prayers and please keep these two families in your prayers as well.