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.