six

  Today Lucy is six weeks old and she went back to the operating room.  That makes four trips since she was born or one trip every ten days.  We haven't even gotten to the surgeries that are required to fix her heart defect.  Six weeks, it's hard to believe.  I can't really explain it but it has gone by fast and slow all at the same time.

  I'll back up a little, on Tuesday night Lucy spiked a small fever and the nurse noticed her incision was looking red.  To be safe they started her on antibiotics and sent a blood culture to see if there was an infection.  By Thursday the incision started to look a little puffy in certain spots and the cardiologist was sure there was some fluid underneath.  The culture came back positive, so they were just going to  use a small needle to drain the incision.  However, they were not able to tell how much fluid was there and decided the best option would be to open her up, drain and clean the infection.  Although this wasn't anything urgent, because the surgeon was there and the OR was open, it was better to do this sooner than later.  Lucy came back good, like she has done with every hurdle she has had to endure.  They did put the breathing tube back in, but it should come out by tomorrow morning.  Our hearts are breaking for all Lucy has had to go through so far and we can only hope the future surgeries hold very little unexpected issues!

  Aside from today's hiccup, this week has been pretty good, Lucy was down to one IV medication and has started back on her formula feeds every three hours.  We continued to hold her during the day and at night for bonding.  The therapists (physical and speech) are back in working with her and teaching us ways to help her cope and calm.  We have found that our voices calm her the best and a hand to the top of her head is the next best thing.  I think a lot of that has to do with her time in the NICU.  Since she was sleeping most of the time we would just talk to her or read her books.  We hope that she continues to progress and can eventually calm herself.  The speech therapist suggested we record books so they can use them when we are not there.  I hate my voice recorded so we'll see if that actually happens.  I guess if we can't be there twenty four seven, recorded voices is the next best thing. 

  To sign off on a happy note, we were able to dress Lucy in one of her onsies.  Thank you Jenni and Jess for the adorable outfit!

 

Back on track

  I apologize for the lag in posts this week but each day the progress was small so I thought it better to put it all in one update.  Monday the procedure went well.  They were able to close the sternum and remove the thoracic line without any issues.  All medicines and tubes remained in tact. She was on two heart medicines, one blood pressure medicine, pain, sedation and her HALIV (which is all the nutrients she needs since she is not on breast milk).  On Tuesday the doctors started weening her medicine and ventilator setting.  She managed to handle everything well and the surgeon told us she was doing great considering the trauma she went through.  She is one resilient little girl!  On Wednesday to my surprise they removed the dressing on her scar.  I promise it looks worse in the picture than in real life.  I also asked about the next three surgeries and if the scar would worsen.  As the surgeries progress, the surgeons will remove scar tissue and clean up the scar.

Lucy with the chest tube:

Lucy with the lung drain tube:

They also removed the chest drain tube.  On the x-ray,s some fluid was showing around her right lung.  They increased her lasix (medicine to help her pee) to see if that would help with the extra fluid.  It did not, so when they removed the chest tube they placed another tube on her right side to drain the fluid around her lung.  The doctors wanted the fluid gone before the breathing tube was removed.  When the fluid around the lung drained there was a milky white substance, called chyle, that drained as well.   We were told this happens when a thoracic duct is nicked, it's called Chylothorax.  Chyle originates in the gut and is carried into the gastrointestinal tract then travels to the thoracic duct before entering the vascular system through the nick in the duct.  To fix this Lucy has to go on a special formula for four to six weeks.  The nurse told us the formula is not really easy to get kids to eat through a bottle, so I guess we're lucky that Lucy has the NG tube for now.  The formula smelled awful (like rotten broccoli) but I figured if she has to eat it, I could taste it as well.  Luckily it did not taste as bad as it smelled, more or less like chalk water.  And no, I have not tasted my own milk....

  Friday was probably the best day in the last week.  In the morning, the surgeon came in and said the fluid around the lung has stopped draining so they would be removing the drain tube and the catheter.  Then later that afternoon her breathing tube would be removed.  Friday night I was able to hold her again with all the tubes being removed.  Hooray!  When I got to the hospital, Lucy was a little agitated from her assessment, but the minute the nurse put her in my arms she stopped.  It was the neatest thing!  She was awake for another twenty minutes before passing out.  We're back to just oxygen and can see her cute little mouth again.

We don't have a time frame on when she will go back to the NICU.  The cardiologists are being a little more cautious to make sure all her vitals are good and breathing on her own is not causing more stress than needed.  As always, through the trauma, we want to look for the silver lining.  What we learned from one of Lucy's nurses is that during the episode last Thursday her lungs and heart worked exactly as they were supposed to function.  It was the extra blood that didn't allow her heart to beat.  So we are grateful that the episode wasn't a result of her heart and surgery.

Another procedure

  This weekend was a good one considering all that happened on Thursday. She looked really good with all the swelling gone by Sunday night.  They still have her on pain and sedation and are monitoring the doses based on her agitation.  Saturday afternoon she just slept.  Sunday was a different story, when we got there she was asleep.  But the nurse came in to check some of her vitals and she woke up and just looked around for about thirty minutes.  Mike said it was the most awake she's been since she was born.  It was good to see her eyes and watch her track our voices.  She coughed a couple times letting the nurse know she needed to be suctioned (there's a lot more saliva with the breathing tube).  About ten minutes after being suctioned, she was out cold.  We decided to leave and let her get as much sleep as possible for the week ahead.

 As you know tomorrow Lucy is having a small procedure to have her sternum closed (it was left open during the emergency procedure that was performed after removing the thoracic line).   When everything happened on Thursday, the doctor had to put the thoracic line back in so that all the medicine she needed to go back on could be administered.  To us, this was a huge deal because eventually they would need to remove it and the same thing could happen.  When we spoke with the nurse, we asked about removing that line and how the risk could be lowered.  The best way to lower the risk is to remove the thoracic line when her chest is already open.  With the chest already open any bleeding that happens can be immediatly removed and there would be no risk of cardiac arrest. On Saturday, we spoke with the cardiologist and asked what the possibility of removing the thoracic line while Lucy's sternum was being closed.  Dr. Nater said that it was the best scenario but ultimately the surgeon would make the decision.  The other thing weighing on that decision was how many medicines are needed for her to stay stable (they need a certain number of ports and the thoracic line gives them three ports).  In order for the surgeon to remove the thoracic line, they would need to put another line in (most likely in the groin).  On Sunday morning the surgeon called (my heart skipped a beat seeing that 708 area code) to get consent for a line in the groin.  He had decided that removing the thoracic line while they were closing the sternum was the best case for Lucy.  We are so relieved that this all happening at the same time.  We hope that the recovery will be quick and then a majority of the tubes can be removed.  Then we can start back on our feeding plan so she can put on some weight and come home.

One step forward, two steps back

  As of Thursday, Lucy was doing great and we were steps away from going back to the NICU.  They needed to put in a PIC line (which is pretty much an IV) and remove the thoracic line (which is a port with access straight to the the heart).  Below is Lucy on Wednesday

  As I was getting ready to leave to visit Lucy, I received a call from the hospital.  The nurse told me that during the removal of the thoracic line, Lucy coded.  She was currently stable and the surgeon was currently monitoring her vitals.  I called Mike and let him know what happened.  When I got to the hospital the nurse came to let me know what had happened so far.  When the thoracic line was pulled there should have been some bleeding outside of the body.  However the bleeding ended up around the heart placing pressure on her heart and Lucy went into cardiac arrest.  The team started chest compressions immediately and then the surgeon had to open her up to suction the blood.  Once the blood was suctioned her heart started beating again. The team then closed the sternum and started stitching her up, then her blood pressure dropped.  The surgeon had to open her back up and leave the sternum open in order bring her blood pressure up.  Mike and I just sat watching as all this happened.  It was devastating walking into the hallway of Lucy's room seeing so many nurses, doctors and surgeons in scrubs walking in and out of her room.  Mike said he counted twenty two people.  All of this took about 3 hours.  We were able to go in and see Lucy around eleven.  When all was said and done Lucy was hooked back up to all the machines and medicine when she came out of surgery 10 days ago.  The last thing they did was keep her at colder than normal temperature to slow her metabolism which is supposed help with any damage to the brain, liver and kidneys that could have been sustained during the cardiac arrest.  That was the last straw for us, we couldn't stay and watch her shiver.  We decided it was best to go home and try to get some rest.

  In the month that we have been blessed with Lucy, I have to say that was the hardest day.  I'm not sure if it was the phone call stating she had coded, watching so many people in her room getting her stable or just the thought that this simple procedure has pushed us back to square one.  She is one strong girl though as the doctors did tell us about five hours after stitching her up, they were happy with how she is recovering.  When we left the hospital Thursday night, the nurse stated that they would have a better idea of how Lucy handled the trauma after the nightly labs were run.  Here is Lucy after Thursday

  On Friday when we arrived at the hospital we found they had lowered the doses of the medicines she was placed on.  The tests and scans showed there was no damage to her liver, kidneys or brain.  She was supposed to be really puffy from the all the fluids but looked a lot better than anticipated.  The team is going to continue to lower all her medicine and Monday they will go back in to close the sternum.  The recovery from this should be a lot quicker than surgery so we hope they can start to remove her from all her machines and get back on track to getting her to the NICU to grow so we can bring her home.

We ask that you pray for a quick and clean procedure when the team closes her sternum.
Strength for Lucy as she deals with this trauma and a healthy recovery
Strength for Mike and I as we deal with each day as it comes.

What a difference a week makes

Let's see, where did I leave off....Lucy was recovering well from surgery, she was still sporting the breathig tube, catheter and chest tube along with the pic line for any medicine.  On Wednesday night the breathing tube was removed and replaced with just oxygen.  Here's Lucy without the breathing tube. It's the first time we were able to see her mouth and hear her make sounds.  Her cry was so precious (even though she sounds like a duck).

  

  They waited a day to take out the catheter to make sure she was peeing enough and that all the excess fluids were being removed.  She was still a little puffy, but that was mostly in the abdomen.  While her recovery is going very well, her coping skills need work.  Anytime she is unwrapped for a diaper change or assessment she goes nuts.  She cries hysterically, her heartrate jumps to over 200 beats per minute and she gets bright red.  The physical therapist said she is over sensitive and showed Mike and I some things we could do for positive touching to encourage her to calm herself.  Some of the exercises are just touching her face with a finger for five seconds in multiple places around her mouth and chin.  Another is unswaddling her partially so she gets used to it without the negative impact.  Wednesday, Thursday and Friday she was pretty agitated so they put her back on some sedation medicine and added some pain medicine as well.  She mostly slept, which is fine as that will help her not expend any extra calories.  Mike and I were both able to hold her again.  This time with less blankets and we were able to finally get a sense of how little she is.  Mike can almost support her whole body and head with one hand and part of his forearm.  I mean a normal size pacifier is almost half her head!

Sunday night we were back at the hospital and to our surprise the oxygen and chest tube has been removed.  It was like she was a different baby, the agitation had disappeared.  We unswaddled her and changed her diaper and she didn't make a peep. She just layed there looking around.  Nurses said the chest tube could have had something to do with it.  

Anyway, with the oxygen gone, they started her on breast milk.  Right now she is getting it through an NG tube (which is a tube that goes through her nose straight to her stomach).  This allows her to get all the calories without exerting any though the eating process.  The cardiologist also told us they will be sending her back the to the NICU because she no longer has a cardiac issue and the NICU is best suited to help her grow.  We still don't have a discharge date, but with all the tubes out and most medication stopped we're hoping to see a light at the end of the tunnel.  Here's one more picture with only the NG tube.

Surgery Day and recovery

  Sunday night we decided to stay at the condo to get one last good night of sleep before picking up to stay in Oak Lawn for an undetermined amount of time.  So we were up Monday morning at 4 am to get to the hospital.  Lucy was to be the first case, so we needed to show up about two hours prior to be able to spend time with her.  We each got to hold her before walking her down to the operating room.  Mike of course let me hold her for almost a half hour.  I almost didn't want to give her back to the nurse.

The team called up and said they would be taking her around 7 am.  So we were able to just wait in the NICU and then we would get to walk down with her.  It's weird that even though it's all said and done and we know she is recovering well, I still can get emotional thinking about it.  About 7:30 am we walked Lucy down to the catheter lab with about seven to nine people.  Yes, it takes that many people to transport her.  I believe there were three nurses, anesthesiologist, respiratory, surgeon, fellow and cardiology (and probably others I missed).  Once we got down there we got to kiss her and then we walked with the doctor over to the waiting room.  He said the first hour would be all prep work, so it would be a good time to get food and coffee.  About nine o'clock the nurse came over and told us the procedure had started and Lucy was doing well.  About 45 minutes later, the nurse called and said the bands on the pulmonary arteries had been placed and they were working on putting in the stents.  The stents took another 45 minutes.  The doctor came to the waiting room to let us know the surgery was finished and they were just stitching her up.  He went over some x-rays to show us what was done and said Lucy did awesome.

  We were then walked over to the children's hospital to wait while she was in recovery.  About an hour later the cardiologist came to get us to see Lucy. She was still quite out of it from the anesthesia and really puffy from the extra fluids.  After surgery, she still had her breathing tube and her nose tube.  Then a chest tube to drain extra fluid from her heart, a catheter to be able to measure her urine and multiple IV lines for her different medicines.  She is on a lot of medicine to start with, but the doctors are working immediately to ween her off everything she eventually doesn't need.  Right now, she is on pain and sedation, a medicine to help the heart contract, a diuretic, heparin to make sure there a no blood clots, oxygen and food.  Here is Lucy right after surgery.

  She was quite puffy that morning on Monday, but when we went back to visit on Tuesday there was a significant decrease in swelling and she was starting to look like herself again.  She even opened her eyes for our evening visit and stayed awake for about another hour.

  The fisrt two things the doctors are looking to remove are her breathing tube and catheter.  The nurse told us last night, she is breathing on her own and the respiratory tube and machine are just there to assist if she forgets to take a breath.  We are hoping today the tube will come out along with the catheter.  It would be the first time we will see her without a breathing tube, so we cannot wait.  It will be exciting to see the doctors removing tubes and IV's.  It just means we are inching closer and closer to bringing her home.

Surgery has been scheduled

  Just breathe.  I really thought I was ready for surgery.  Turns out, I was wrong.  Twenty weeks of knowing she would need surgery was not enough time to prepare.  Actually, I don't know if any number of weeks would have prepared me.  She is scheduled for surgery Monday morning.  Doctors have said it should take about three hours, then they'll move her into the Pediatric surgical heart unit (It's called Pshu.....sounds like, pee-shoe).  This weekend has already been a little rough, so I can imagine Monday is going to be quite emotional.  I'm thankful to have Mike, he's been my rock through all of this.

  Anyway,  enough about me.  Let's get to the important stuff....Lucy.  As of Friday night, she has surpassed the four pound mark at four pounds and three ounces.  I spoke with the cardiologist on Friday morning and due to her growth they will be doing the entire hybrid procedure at once.  They were originally planning to do it in two steps.  We are very happy about this because it means only one recovery.  Average recovery time is roughly ten days, so we're hoping she doesn't need much more time.  Monday morning we will go in a couple hours before so we can each hold her.  Then we will walk with her over to the operating room.

  Friday night she gave us a treat and was awake for a full hour while we visited.  It was amazing seeing her eyes and watching her look around.  Mike said that when I spoke he could see her trying to find me.  I guess reading to her has paid off.  We are lucky she finally closed her eyes and fell asleep because I know we wouldn't have been able to leave.

  Saturday morning was a little different.  Aunt Erin came to visit and meet Lucy for the first time.  However, Lucy was having a rough morning.  The nurse told us her vitals were not stable (oxygen levels and respiratory).  Also, since she has started to be awake more she is aware of her breathing tube and hates it.  Due to both of these, they decided to sedate her. They gave her some morphine and later in the afternoon started her on a morphine drip.  We were told that Lucy is quite the atypical hypoplastic baby as most are sedated almost immediately after birth.  She has been a trooper through her first two weeks!  They also said that the changes are her way of telling the doctors she is ready for surgery (at least one of us is ready).

If we could ask for specific prayers as surgery approaches:

-strength for Mike and I as we wait through surgery

-God's watch over the cardiologists and surgeons as they perform the hybrid procedure

-For Lucy's strength and quick recovery

-God's hand over the entire process