Thursday, November 29, 2012

9/18 - Kate's Glenn and Valve Repair Surgery

Kate went back for surgery early in the morning and it was another very long day for mom and dad.  We finally got to see her around 7pm and she looked how we remember from the last surgery...lots of meds, open chest and pale.  Her surgeon told us things were technically perfect in the surgery, but it would still be a long first night.  Her oxygen saturations were very low, which is expected right after the Glenn due to the change in circulation.  Her saturations were in the 50s (he said 55-65 was good for first 12 hours).  So we waited and watched her heart rate and saturations.  Around 1am, Kate went into JET again (did this after her Norwood), where her heart rate shot up into the 215 range (she was 160s out of surgery)...so we thought for sure she would be put back on ECMO...but this time her incredibly fast heart rate was not affecting her blood pressure.  So they gave her meds to slow her heart rate down and we waited.  She was not in normal sinus rhythm, but her surgeon told us that once her heart rate went down, she should go back into normal rhythm. 

Over the next couple of days her heart rate actually slowed too much due to the meds and they used a pacemaker to keep her at a constant 140, to keep blood pressure up and try to help her saturations.  She eventually went back into sinus rhythm and was able to come off the pacemaker.  Her oxygen saturations did not improve over the next few days...we would get excited to see some 60s and even low 70s, but they did not last long.  By Friday night, everyone was worried about what to do next.  Her saturations were in the 50s and by this time they should have been in the 70s.  The next day, Kate went to cath lab to figure out what was going on.  They found no blockages, but did balloon her left pulmonary artery.  Right after cath, her saturations were in the 70s, so we prayed that corrected her problem.  But throughout the day Saturday and into Sunday, she was back into the 50s.  I went home Saturday night to see Jacob (had not seen him since Monday night).  When I returned Sunday afternoon, Kate had gotten even worse.  Her head was swelling and her saturation was 40.  Dr. Fiore told us that he wanted to re-open her chest to see if that would help, and she would probably be heading for surgery again very soon.  At this point I sent Craig home with Jacob to drop him off and come back for another round of surgery.

As I sat in the waiting room staring at the picu doors, I saw the dreaded machine go through the doors...yes ECMO was back and I knew it was for Kate.  Everyone feared she would not make it through the night if she was not put back on.  We had hoped and prayed we would never see that machine again, but I knew it was our only option to get us back to the operating room.  Opening her chest did not help, so Dr. Fiore put her on ECMO for the third time.  The nurse later told me that when Kate was put on ECMO, her saturations were 27 and they immediately shot to 94.  Deep down, I truly believe Kate would have not made it another hour if she wasn't put on ECMO. 

We were told that Kate was not tolerating her Glenn anatomy and the plan was to take down her Glenn shunt and go back to Norwood anatomy.  We felt totally deflated...we had waited months to get to this surgery to hopefully get home, and now we were back tracking and putting Kate through another surgery.  At this point, we knew we had no other options, so we went to surgery on Thursday 9/27.

Monday, September 17, 2012

The wait is almost over

Short and sweet post for our Kate:

Mommy can't sleep, can't eat, is beyond scared, but ready for tomorrow...it is a necessary step towards bringing you home.  Kate will be having her Glenn surgery with a tricuspid valve repair..she goes back before 8am and we won't see her until late afternoon.  Please keep Kate in your prayers...we love you more than words can express, Kate!

Monday, September 10, 2012

Stop Scaring Us Miss Kate!

September 8, 2012 - 12:30am

When the phone rings at this hour, things are not good..this was the case again this past early Saturday morning.  Kate had coded again.  She did not lose her heart rate this time, it was low, but still there.  She went into respiratory arrest and required 3 minutes of compressions.  She came back though and when I arrived her vitals looked similar to when I had left earlier that day.  They decided to start her on more sedatives and keep her paralyzed to give her body a rest. 

Around 3am, she started having some arrythmias and episodes of dropping her heart rate and oxygen saturations.  This continued on and off on Saturday.  They decided to change out her breathing tube and found that it had an obstruction, so she was not get all possible air flow.  They suspect that was the major cause of her code. 

Sunday was a better day for Kate...arrythmias decreased and no major heart rate drops.  They did a head ultrasound and thought they saw something suspect, so that had us concerned.  She seemed like herself and was moving all extremities, but if something was going on with her head, that would keep her from surgery. 

Monday was a normal day for Kate...she had no arrythmias, no heart rate issues, no oxygen desaturations and her head CT came back with good results..bleed was getting better, not worse!  So surgery is still on for next Tuesday as long as Miss Kate cooperates this week and stops scaring mom and dad!

About 36 hours after her code

Sweet dreams for baby Kate

Friday, September 7, 2012

Acceptance and Answers

The rest of August was a month of acceptance for us...Our sweet Kate was not coming home until after her next surgery.  We didn't know when that surgery would be, and would it be a valve repair, a valve repair/2nd stage surgery (Glenn), or just the 2nd stage surgery.  We just knew that our main goals now were to keep her stable on the ventilator, work on her feeds and monitor her brain bleed.  She needed to grow to at least 5kg (11 lbs) for her Glenn surgery.  The weeks of August moved slowly, but Kate did well for the most part.  She had her ugly moments, but overall the doctors were pleased. 

Kate had a CT scan of her brain on August 20th and it showed that her bleed was significantly smaller and was barely visible on the scan.  Prayers were answered and she was cleared to have heart surgery.  We still don't know the long term impact of the bleed, but it was so great to hear that it was resolving, there were no more seizures and she was awake, alert and moving all extremities!

We received some answers when Kate had her cardiac catheterization on August 30th.  This involved threading a tiny catheter up her groin artery to her heart and injecting various dyes to measure pressures in the arteries and veins around her heart and lungs.  They also examined her leaky tricuspid valve.  The results were positive from the cath.  She would be ready for her Glenn at 12 weeks old and her tricuspid valve was more of a mild leak, not a moderate leak.  Kate's surgeon informed us that he would not do a valve repair unless he feels it necessary on the day of her surgery.  The will do an Echo of her heart when she is back for surgery and make the determination at that point. 

Kate hit her goal weight of 5kg in early September and is now scheduled for her Glenn surgery on September 18th at 12 weeks old.  She is getting big and looks the best she has ever looked.  She is tolerating her feeds and is much more aware of her surroundings.  She loves to listen to her music, watch her mobile and even watches a little TV!  Please pray for Kate for a smooth surgery and successful recovery!








Monday, September 3, 2012

August 3, 2012 - Another close call

Kate had been seizure free all week and was doing much better...heart function was good despite her leaking tricuspid valve and we were working on weaning down the vent again.  On this day, she seemed off to me though.  I couldn't put my finger on it, but I just wasn't feeling as positive this day.  I left the hospital around 8:30 that night to get some sleep before morning rounds.  At 11:20pm, a PICU nurse called me explaining that Kate was coding again.  What?!  I remember getting instant chills and my heart was pounding so fast as I threw on any clothes I could find.  She goes on to tell me that Kate was ok after 5 minutes of compressions and that her heart was working on its own.  The heart surgeon got on the phone and says that something happened with her breathing tube, causing shock to her system and the cardiac arrest..

The nurses couldn't believe how fast I got to the hospital that night..I had to get to her as fast as possible..she had to be ok..her brain couldn't handle another stint on ECMO...when I arrived she was pale, not too puffy, but had a high heart rate in the 190s (normal for Kate at this point was 160s).  I sat in her room all night praying for her heart rate to come down and to not see any seizure activity.  My prayers were answered...Kate fought through and her heart rate settled and we saw no new seizures. 

This incident, along with Kate's previous arrest, provided the doctors enough experience to see that Kate's ventilator was still necessary...her heart was too fragile in this Norwood physiology along with her leaking valve to handle the extra work load of completely breathing on her own.

Kate earlier in the day

Sunday, September 2, 2012

July 27-30, 2012

Kate successfully came off of ECMO only 48 hours after her code.  By no means was she out of the woods, but it was a huge relief that her heart tolerated coming off of ECMO so quickly.  But she was still having seizure activity despite being on anti-seizure medications.  They told us it was to be expected for a few days from the first seizure, but they could be causing the bleed to spread, so they needed to be under control ASAP.  Once we were at 48 hours of seizure activity, the doctors wanted to insert a pressure monitor (called a Codman) into her brain.  As if things weren't bad enough, now they want to make an incision in my baby's head, drill into her skull and insert a catheter into her brain..the incision was not huge...but freaking scary.  This stayed in her head for a few days, but she never had increased pressure, thank goodness.  She stopped having seizures after 4 days and her bleed was not getting any larger.  Her EEG showed brain function and she was responding to touch and moving all extremities. 


EEG leads on her head and poor left arm with seizures

Looking drunk

Codman incision

July 26, 2012 - The 2nd Day that Changed Our Lives Forever

Craig and I thought our baby girl was going to leave us..

She had been stable on ECMO all night, but then at around 8am, she slowly lifted her left arm bent at the elbow and started moving it rhythmically...it didn't even register to me at first that it was a seizure.  Immediately the room turned chaotic as they called for EEG monitoring of  her brain and a head ultrasound.  Within 2 hours we were being told that Kate had a major brain bleed with frequent seizure activity.  The bleed was most likely caused from the trauma her body endured with the code, but it was being worsened by the blood thinners they need to use with the ECMO machine to prevent clotting of the cannulas.  We needed to get her off the ECMO machine as soon as possible.  She had just coded 24 hours before...how could her heart be strong enough to do all the work again so soon??

Craig and I spent a couple of hours in the waiting room just crying and praying...she needs the heart and the brain to survive but both were sick..her surgeon kept telling us that he felt her heart would be able to come off ECMO...all I could think about was that it was over and I would be saying goodbye to Kate soon..

July 25, 2012 - The Day that Changed Our Lives Forever

After dropping Jacob off at a friend's house for the day, I was driving to the hospital to see Kate.  I was excited since I had gotten to hold her the day before and work on her pacifier with her..I was hoping to do the same again..Then I received a phone call from the nurse practitioner telling me that Kate was being re-intubated due to respiratory distress and oxygen saturations in the 30s.  I couldn't believe this was happening to my baby and drove so fast to get there to see her. 

As I ran into the PICU unit, I came around the corner to her room and saw a huge amount of surgery gear carts, purple people and Barb...instantly I felt sick..I knew it was not good.  I could barely focus on what Barb was telling me..that Kate had coded, needed compressions, but was still alive and was being put back on ECMO.  Barb had called Craig right after I talked to the nurse practioner on the phone to inform him of Kate's code so he was on the way..

I was taken to a private room to wait for Craig and Dr. Fiore to complete the ECMO procedure..the only thing I remember about those moments I had alone, was crying and shaking uncontrollably.  How could she be fine the day before and near death the next??   The doctors had no answers to this question immediately either. 

We finally got to go see her after a few hours..she looked nothing like the girl I was holding the day before..VERY pale, extremely puffy and the 2 ECMO cannulas were coming out of her neck this time.  We could see where they had done compressions on her chest.  It took 62 minutes to get Kate onto ECMO from the time she coded.  Now we had to wait and see if any of her major organs would be affected.  We were even more scared than her surgery day.

July 3 - July 24, 2012: Recovery

Kate was on ECMO for 5 days after her surgery...but she came off of it with the first wean attempt so prayers were answered.  It was a grueling 5 days filled with worry, many tears and stress beyond belief, but she was proving to be quite the fighter.  The next steps in her recovery included closing her chest, getting off the ventilator, weaning drugs and starting feeds.  Closing her chest was completed a few days after coming off ECMO and feeds were started at a slow rate.  She did well at weaning off the ventilator for a while, but hit another road block that next weekend.  With the feeds increasing and her vent rate being decreased, it was proving to be too much work for her heart. 

Kate seemed to need to take things slower, so that's what we did.  After another week, she did come off the ventilator, weaned off many of her meds and was eating on and off..I even got to hold her finally, and we both loved every minute.  We finally felt her recovery was moving along and there was talk of moving her to the "step down" unit of the hospital..one step closer to the front door.

Just off of ECMO





No breathing tube!


No nose cannula!

Holding my sweet girl




July 2, 2012 - Norwood Surgery Day

We arrived at the hospital early that morning to spend some time with Kate before surgery.  She had already been moved to the PICU when we arrived.  They let us hold her for about an hour before the purple people (surgery team) came to get her.  Craig let me hold her the whole time, and I'm sure I cried the whole time.  Holding your child, knowing you are sending them into a major open heart surgery, was even more heartbreaking than I ever imagined.  We were so scared and had no idea the emotions we would endure on this day.

They took Kate from us around 8am and told us we wouldn't see her until that evening.  We waited in the general surgery waiting area, but quickly asked to be moved.  Seeing people in there waiting for their kids tonsil surgery and many kids running around, made the wait even more difficult.  I wished we were just there for a "simple" surgery.  We were moved to a more private waiting area, where we waited for our hourly updates from our surgeon's assistant, Barb.

There were many hours of prep time, putting Kate under and getting all of her lines in before incision was even made.  Barb finally told us that incision was made around 11:30am and she was being put on the bypass machine.  The bypass machine does the function of the heart and lungs, while the surgeons stop the heart for surgery.  Her heart was stopped for approximately an hour while he worked.  The surgery took all afternoon but she only had to be on the bypass machine for that hour.  She came off of it fine and surgery went as planned.  We were told it was completed around 5:30pm.

They settled her back in her room and we were allowed to come back to see her around 7pm.  She looked so pale and her chest was still open but covered with a plastic cover.  We were relieved to see her, but we only got to stay with her a short time.  Within that hour, we were back in our waiting room because Kate was not doing well.  Her heart rate was very high and her blood pressure was very low.  They monitored her for hours with very limited updates for us. 

About 1:30am, Kate's surgeon came to update us.  He told us that she did not look good and he felt it was time to put her on the ECMO machine to give her heart a break.  Her blood pressure was dangerously low so he wanted to be very cautious and get her on the machine before she could potentially code.  I have never cried so much in my life or felt so helpless.  Why was this happening to our baby??  Being put on life support??

Putting her on ECMO took about an hour.  It is something you never want to see you child on...2 large cannulas (plastic hoses) attached to her heart through her open chest with her blood cycling through to a machine that oxygenates her blood and pumps it back into her body.  She was so pale and puffy b/c her kidneys were not working well.  At this point, we were scared and exhausted. 

So at the end of this day we had an 11 hour and 8 hour stretch of not seeing our sweet baby Kate...and she was on life support.  I never knew it was possible to feel as much despair as I did that day. 

ECMO machine

Tree of drugs



Sweet Kate

Tuesday, August 14, 2012

Before surgery

I was in the hospital recovering from my c-section, so I didn't see her much until I was released.  It was extremely difficult to be away from her.  At Mercy, they put me on a different floor from the nursery so at least I didn't have to hear crying babies.  That would have been pure torture for me.  I already missed her so much and just wanted to hold her and someone to tell me that they made a mistake and she didn't have this terrible heart defect.  Unfortunately no one ever told me that.

Kate spent 6 days in the NICU awaiting her Norwood heart surgery. She was stable, but they decided to intubate her while doing her heart cath.  Kate ended up with a meconium plug, which caused her belly to become very distended and blue.  They did an upper GI on her and eventually the plug cleared.  This issue meant that we couldn't hold Kate.  Very difficult, but we knew it was best for her.  They did all of these tests on her for various conditions that are associated with meconium plugs.  We were already stressed for her looming surgery and then they were throwing around scary thoughts like CF.  But she tested negative for everything. 

Kate had visits from Grandma and Grandpa Price, Aunt Stacy and our good friend Erin while in NICU.  Erin even helped us out with a little photo opp with Kate!  They finally let us hold her after 5 long days!

Hair!




Mommy snuggle time


Toes



Chest with no scar



Daddy snuggle time

Kate's Arrival



 Kate Elizabeth
 Born on 6/26/2012 at 7:56am via c-section
 6 lb 8 oz and 19.25 in long


After arriving at Cardinal Glennon at 5am, getting prepped for surgery, and receiving the sweetest spinal ever, we were ready to meet our baby girl.  Being awake this time was so much better!  They kept telling me that I would feel tugging, pressure and pulling, but I felt none of these.  I didn't even know she was out until they told me!  She came out screaming (sassy from the very beginning) and smaller than I imagined she'd be. 

For a moment, I forgot all about her heart condition.  Just a moment though.  Until they swiftly took her off to evaluate her heart.  Her atrial septum was intact, but she was getting blood from the left to the right side of her heart via her coronary sinus.  Very good news for her - no immediate work was needed.  The doctors did decide to do a heart catheterization on her though to get a clear picture of what her heart was doing.  Afterwards she was taken to NICU to await surgery on Monday.

Tuesday, June 19, 2012

Baby Kate...1 week and counting

In just one short week, Kate will be born!  It has been a long and emotional 9 months and we are ready to start this journey of our lives.  Kate has been looking great at her doctor appointments and they even say I look great, even though I don't feel it most days.  The heat has been terrible and I have to applaud women who have August and September babies!  We will be spending the week finishing up our freezer meal cooking, cleaning the house, and spending some quality time as a family of 3 (as long as it is indoors or in a giant sprinkler). 

The only information we know for sure, as far as next Tuesday's schedule, is that we have to arrive at Cardinal Glennon at 5am and the c-setion is scheduled for 7:30am.  I will be transferred to St. John's around midday, after knowing what is happening with Kate and hopefully seeing her. 

We finally finished Kate's bedroom last week and can't wait for her to be able to enjoy it!  Jacob's already been trying to enjoy it, but we told him that he only gets one room!





Wednesday, June 13, 2012

Kate's Baby Shower

Last Saturday, my friends and mom had a baby shower for me and Kate at McGurks in O'Fallon.  It was a fabulous lunch with a cute and yummy cake and lots of presents!  Kate received many awesome gifts to wear, read and keep with her forever.  I also received a gift card for a massage and Craig and I got a care basket with great snacks, disposable camera, lotion/hand sanitizer, crosswords, tissues, and a book to read to Kate for our extended hospital time.  The gifts were so wonderful and we greatly appreciate all of them!  Thank you to Erin and Jamie for planning the shower and everyone for celebrating Kate:)