Tuesday, May 21, 2013

Good news!

In my last post I wrote that we were expecting a 2-4 week extension of our time at SickKids because of the NEC watch and getting back to regular feeds.  Jake has now been off of NEC watch since Saturday, has finished his antibiotics and restarted his feeds.  Jacob has some issues with acid reflux, with is very common for heart babies, so we are going to try a different medication for the reflux starting tomorrow.  The Occupational Therapist thinks that it is the reflux that is preventing Jacob from drinking more than 30 ml at at time.  Jacob has had no NG tube since Sunday, and has been having his milk from a bottle while supplementing with TPN and Lipids through his PICC line.  Tomorrow we are going to try breastfeeding again - and I'm hoping that will go well because there is so much fuss involved with pumping and bottles.  This morning during the rounds Jacob's cardiologist said that if he continues improving his feeds, and can gain a little weight over the rest of the week then they will try to schedule an air ambulance to bring us back to the Janeway on MONDAY! 6 days! Praise the Lord!!! Jacob may have to spend a day or two at the Janeway when we arrive home, but we don't know that for sure yet.  The timing of our flight home is also dependent on the single air ambulance that services the east coast, so it's hard to say that we will actually get home on the day Jacob is discharged.  I am so hopeful that we will be home next week.  Hallelujah! God is so good.  If we get home on Monday than our journey with Jacob will have lasted 9.5 weeks in total, including 54 days at SickKids.  That is long enough!  


We are now taking daily strolls out of the room and around the hospital.  Jacob loves to sleep in his stroller, and I love the freedom of getting outside the four walls of our room on 4D.  The picture above was taken on one of those walks, and I think he may be going to have red hair.  For those of you who are praying, please direct your prayers towards Jacob's feeding issues and weight gain.  If the feeding issues are not resolving in a few days his NG tube will go back in, and we will bring  him home with a combination of oral and NG feeding.  Home! Oh to be there right now.  Georgia is running around our cul du sac playing with her friends right at this moment.  She went back to her daycare today and was so excited and happy to go that she couldn't get ready quickly enough this morning.  Thank you Lord for bringing us through to this point.  Let's get this baby home and surround him with love and attention for a few months before it's time for his Glenn operation in the late summer-early fall.  Woo Hoo!

Wednesday, May 15, 2013

It never rains but it pours...


Jacob had a rough night and a rough day today.  I feel the strong need to ask for more prayer, even though I know many of you are already praying.  Thank you so much for that, and please continue to pray.  I believe in the power of prayer, and I have have never experienced such an outpouring of love before.  The picture above was taken this morning of Jacob sleeping soundly with his two Bravery Bead necklaces.  Today we started a new necklace - there is always something to add to this.  The Bravery Bead program at SickKids is a great encouragement for children who are old enough to understand it, and I think by the time Jacob is old enough to understand it he will have quite the collection of beads.  Some of the procedures represented by these beads are: Bloodwork (or Special Poke as they call it here), CCU admission, Central lines, PICC line, morphine pain control, injection, iv starts, NPO (nothing passes orally), pacemaker, occupational therapy, physio, surgery, tests and scans, TPN, transfusion, transition StepDown, Tube/Catheter/NG and special accomplishment.  Jacob has been putting up with quite a lot, and typically smiles his way through most procedures.  It's absolutely amazing what this baby can smile through.

Last night it seemed that Jake was taking a turn for the worse - his colour was pale, his oxygen sats were dropping very low and he was extremely irritable.  We got very little sleep last night because the nurses and doctors were so concerned about him that there seemed to always be someone in the room.  At midnight he had a chest x-ray which showed fluid buildup in the air sacs of his lungs. This combined with his colour and oxygen levels led the doctors to fear that he was entering into congestive heart failure.  I thought I was going to throw up when the doctor said those words.  Jake immediately had another x-ray and a full echocardiogram to examine his heart's function.  At the same time, he also got his PICC line in today - finally! We had been waiting for this line since Monday.  It was supposed to be inserted yesterday but the IGT team were afraid to do the procedure on him after 5:00 without all personnel there.  This morning with Jake's vitals looking to have taken a turn for the worse the plan was for Jake to go into the IGT operating room for his PICC with a cardiology fellow standing by his bedside at all times.  In other words the doctors were so worried about his condition that they were sending a doctor specializing in cardiology to watch Jake have this routine procedure.  5 minutes before Jacob was due in IGT we got the results back from his Echo -  his heart function was good, it was not congestive heart failure.  The feeling of relief I got from hearing those words made me almost giddy.  Jake was able to go into the IGT room for his PICC with only his nurse staying by his bedside.  All went well there, although the procedure took longer than normal because of his tiny veins.

So in terms of the NEC diagnosis, the echo was positive, the x ray was positive, blood work has been positive, his bowel sounds good and is soft and he has managed to poop twice (and there was no blood!) Jacob's oxygen levels are still dropping, so he is being helped by the nose oxygen for a few more hours.  Also, his colour is not as pink as they want it to be - it's blue/white tinted which is an indicator that he is not getting enough oxygenated blood to his body.  For these reasons the doctors are leaning towards extending his time of no food and antibiotics from 1 week to 2 weeks.  I had said in  my last post that this likely added 2 weeks on to our stay here, but after talking to the nurse practitioner I realize that it's closer to 4 weeks before we can be released to Ronald McDonald House with him.  That realization is as hurtful as a punch in the gut would be.  But there is nothing I can do about it.  :(

Jacob is sleeping off the morphine given to him during his PICC line procedure, and I am absolutely exhausted too.  It's time to sign off of here and lie down while I can.  Please pray for Jake - he deserves to be well and go home for the first time in his life.  Today marks 8 weeks in Ontario for Jon and I, and tomorrow marks 6 weeks since Jacob's birth.  Please God, help us get home soon!

Monday, May 13, 2013

The Human Hug

Jacob has been under NEC Watch since Thursday morning, and on Saturday night we were told that he has the symptoms of stage 2 NEC.  This is a potentially very serious condition, which has 4 stages of severity and is common in babies with single ventricle heart defects because of decreased blood flow to the body (his lungs are taking too much of the oxygenated blood).  Stage 2 is normally manageable by withholding food for 5-7 days, and broad spectrum antibiotics.  Stage 4, is only manageable with surgery on the bowel.  So, my poor son has not been fed orally since Saturday afternoon.  It's now Monday morning and I'm finding myself so tense that I grit my teeth and I don't notice it until I feel pain in my gums.  The evenings and nights are the worst for Jacob, he is more settled in the daytime but around suppertime he starts to get very agitated and upset and screams until he is the colour of an eggplant.  It's like a physical pain for me to not be able to feed him or console him - he cries until he wears himself out.  Last night he managed a four hour stretch of solid sleep - that was wonderful.  They are giving him an iv infusion of a nutritional supplement (TPN and Lipids), but his belly is still empty and he doesn't like it one bit.  Today Jacob needs another ultrasound on his bowel, bloodwork, and a PICC line inserted into his arm.  The PICC line is necessary because they find his veins are very small and hard to work with, and TPN is hard on veins so they want to avoid unnecessarily poking him every second day.    

We are still in parent care, thankfully.  Moving back to StepDown has been mentioned as an option if Jacob needs certain types of medication that require constant monitoring.  I'm praying that this doesn't happen because I need to be here to hold him when he is screaming and inconsolable.  This new setback is adding at least 2 weeks on to our stay here at SickKids - it's unbelievably frustrating when all we want to do is take him home to our daughter and family.

This past weekend was Mothers Day, and while it wasn't ideal Jon and I made the best of it.  On Saturday a volunteer came to our room and gave us t-shirts and told us about Meagan's Walk which was happening at that very moment.  3000 people had walked from Fort York to SickKids and were forming a human hug around the building to celebrate Mothers Day and support the Moms inside the building.  Here's what it looked like:


I didn't get to see this for myself, but I cried in Jacob's room because of the kindness that I felt being passed along by perfect strangers.  At lunchtime Swarovski was giving out gifts for Moms in the atrium, and on my way back to Jacob's room I was in the elevator with an elderly man and a woman.  I was wearing the Meagan's Walk t-shirt and flip flops on my feet, and the man looked at me and asked if I had walked the 5 KM in flip flops.  I told him that I hadn't walked at all, that my son was a patient upstairs.  We spoke for a few minutes and he told me that he was Meagan's grandfather, and he hoped that we would soon be home with Jacob.  When we parted ways I got a hug and a kiss on the cheek and Meagan's grandfather told me that the human hug was meant for Moms like me, and that's what was important.  It was a very sweet moment, and I won't be forgetting it anytime soon!  Sunday I got a beautiful video from my girl wishing me a happy mothers day, and blowing kisses.  It was the perfect start to the day.  Lots of cuddles with Jacob got me through the rest of the day, and Jon walked through rain and hail to bring me my favourite meal of nachos and guac for supper.  Thank you, hon! 

Rereading this post it sounds like all I do is cry - but the majority of the day and night are good.  They are filled with sweet baby cuddles, coos and smells.  Even when Jake screams in my arms, he eventually gets tired and snuggles in and sleeps for hours in mine or Jon's arms.  God is good - even in the middle of all of this, I can find His peace.  I question Him and feel hurt and angry at God almost every day, and I know I'll never understand this, but ultimately I can find my way back to knowing that He is in control and that Jacob is His child too.  So, heading into another day - day 40 of Jacob's life and day 40 at SickKids - God, please bless Jacob and heal his body so that we can bring him home where he belongs.  

Saturday, May 11, 2013

Nothing half hearted about this smile!

Jacob moved to Parent Care on Thursday afternoon, and so I went back to Ronald McDonald  House and packed a bag for myself and for him.  I am now officially a temporary resident of Sick Kids hospital.  Key word = temporary.  I want to go home with my baby boy and big girl and snuggle with them all day long.  Jacob is a good little sleeper, he sleeps most of the night despite his hourly vital checks by the nurse which involve him being partially stripped down and prodded all over.

Starting on Monday Jacob has been having bloody stool bowel movements and overnight they started to transition to a more brown colour so the doctors are thinking it may be old blood now.  Two abdominal x rays, a bowel ultrasound, bloodwork and holding his feeds for 24 hours have resulted in no answers for us yet.  They doctors have him on NEC watch, and are continually assessing him to be sure nothing has worsened.  Jacob's vitals are great, oxygen levels are holding steady and they are otherwise happy with his progress.  They restarted his feeds, thankfully, but only breastmilk for now - to rule out an allergy to the formula.  It's 24-48 hours for lab reports to return, so we're still waiting on that as well.  Wait, wait, wait.  Wonder, wonder, wonder.  That's what we've been doing since Thursday morning.  And it's not frustrating at all - sarcasm intended :)



Jacob has been morphine free since Friday morning at 6 am.  He has been fussy and irritable at times, but this seems to be caused by his stomach irritation and trouble getting his poop out.  I'm hoping to close the book on the morphine withdrawal once and for all.

Today we are missing a birthday party for one of Georgia's friends at home, and tomorrow is Mother's Day.  When we first arrived I had hoped that we would be home by Mother's Day, but it's now here and the end is not in sight yet.  And that is ok - as long as Jacob is doing well, and we are making slow progress in that direction.  I'm going to do my best to make the most of Mother's Day tomorrow - because I know I am incredibly lucky to have my boy with me despite all he has been through.  Jon has promised me a meal of nachos - that gives me something else to look forward to.  On Thursday when I went back to RMH to pack my bag, the PAWs program dog was there and I sat down and had a cuddle with her.  The dog brought tears to my eyes, and all I could think about with Lukey waiting for me at home.  We're coming back big boy, don't worry about that!

Wednesday, May 8, 2013

4D StepDown


Jacob moved to 4D StepDown on Monday around noon.  StepDown is the stage between critical care and parent care where they ensure that your child is ready to be moved away from the constant one on one supervision, and they begin to prepare parents for caring for their child on their own.  The first day in StepDown I was feeling very unsettled, it was a new room and new atmosphere and much more relaxed than CCCU.  Mostly I was feeling unsettled because for the first time since his birth, Jacob didn't need to have a nurse focused on only him 24 hours a day - the StepDown nurses have two patients at a time.  Jacob's oxygen levels have been holding strong, and he had a complete echo to examine the function of his heart today.  The preliminary report of that echo looks great - we will have the final report tomorrow.  Jacob was able to come off the morphine when we moved to StepDown but had to be put back on it in smaller, less frequent doses because of showing withdrawal symptoms again.  In a few more days he should be finished with the morphine, hopefully.  I really don't like how drowsy it makes him.

If all goes well, parent care is looking possible for tomorrow or the next day.  Cross your fingers and say a prayer that we get there soon! The number one issue standing between us and home is Jacob's feeding.  He is still fed through the NG tube every 3 hours, a special mixture of breastmilk fortified with formula for calories.  Jacob tipped the 9 lb mark yesterday, so he is slowly gaining his weight now.  We have twice daily sessions with the occupational therapist to work on his feeding - bottle feeds first, and if we are successful with that then possibly nursing.  Right now, with a lot of patience and coaxing, if Jacob is alert enough he can drink about 15 ml from a slow flow bottle - any more than that and he starts to gag and may vomit.  The gagging and vomiting are a major issue, even if he is lying in an upright position in his bed for a NG feed that is stretched over an hour.  We have to do laundry every day because of his vomiting.  Thank goodness for Ronald McDonald House and their quick washer/dryer machines! The most likely scenario for Jacob is that he will go home with the NG tube in, and have a combination of oral and NG feeding.  Besides the gagging and vomiting the other major issue for Jacob's feeds are that working at a bottle tires him out quickly.  Heart babies do not have the stamina of normal babies, and this can be built up over time but for the moment it is a major ordeal for Jacob when he has to work to get his food.

I miss Georgia so much, it breaks my heart.  I think about her constantly and tell Jacob about her constantly.  The Sunday is Mothers Day, and I am incredibly blessed to be sharing it with my son who has made it through unbelievable hurdles in his first 34 days of life.  But it will be my first Mothers Day without Georgia.  It's going to be a tough day for this Momma.  More than anything I want to bring my boy home, and have my family all together under my own roof.  Is that so much to ask?

I'm trying to focus myself on the little victories that Jacob is marking each day, and holding on tight to anything positive that the nurses and doctors have to say about his progress.  Sometimes I get ahead of myself and want to be in parent care NOW or home NOW, and then I have to step back and once again realize that this is not a normal infancy for Jacob.  He's a very special boy, with an incredibly complex heart, and nothing since his birth has been "normal".  On my good days I feel like we can just create our own version of normal - and a day filled with baby cuddles and kisses is a great day even when it takes place inside the walls of a hospital filled with sick children.  Jacob has taught me the value of life, and of living for the moment.  I am longing to show him the world outside of his hospital room.

Jacob's night nurse came in with a Superman shirt on today.  I shared with him the story of the superman symbol on Jacob's open sternum after his first surgery, and how it has become a symbol and nickname for my baby boy and his strength.  I hope that my own strength is enough to give Jacob all that he needs to grow and be a healthy, happy boy with half of a normal heart.

Good night Georgia and Jake.  Sweet dreams.  Momma can't wait to be able to spend the nights with both of you, and to be able to check on you whenever I feel the need during the night.

Saturday, May 4, 2013

May the 4th be with you. Happy 1 month, Jake!

My last post about the highs and lows of this journey was all too accurate because the day after that post Jacob had another low.  Jacob's white blood cell count rose and overnight he had be put back on the Sipap oxygen because he was having difficulty breathing on his own.  We had 36 hours of Jacob on Sipap, and the doctors made the decision to activate his Pacemaker at 120 bpm.  After a day with his pacemaker turned on, Jacob was once again off of Sipap and the lab cultures showed no signs of infection.  Now Jacob's team of doctors is divided - should the Pacemaker be left at 120 or set to backup at 70? As Jacob's Mom, all I know is that when his pacer was activated it helped him recover from his low point, and he has been very stable ever since.  The pacemaker doctors keep telling us that there are major risks associated with having a pacemaker from birth.  I have no idea what the right decision is - but God does.  Please pray that the doctors make the right decision for Jake and his future - most likely the decision will be made by Monday.

As of right now, Jacob has only one iv remaining in his left leg, and they have just turned off another medication.  This iv is for blood samples, and for administering morphine.  Jacob is on a slow wean for morphine, because he was showing withdrawal symptoms when they tried to wean him at the normal rate.  It's been really hard for me to accept that my less than one month old baby was showing some of the same symptoms that drug addicts show when they are cut off from their drug.  In Jacob's case it was mostly gagging, sweating and coughing...with the slower wean process he is still gagging occasionally but it is very minor.

Apparently we are headed to Step Down on 4D on Monday.  If that happens then Jacob will have spent 33 days in the Cardiac Critical Care Unit.  I'm hearing mixed reviews about 4D from the other Moms around me, but it is still one step closer to taking my baby home.  Every day now I get to give Jacob a bath, dress him and do all of his diaper changes.  Either Jon or myself are holding him for most of the day, as long as no procedure needs to be done on him or any of the other children in the room.  It's so nice to finally be doing normal baby things with him.  But at the same time they are not really normal baby things because of all the lines coming out of his iv, his feeding tube, and his many monitoring stickers that are stuck all over his little body - changing his diaper can be quite daunting with all those wires coming from his upper leg.  But I'm doing it - sometimes I can't believe it :)

Yesterday they switched Jacob from his Enox blood thinner injections to oral doses of aspirin - so it looks like we may be able to take Jacob home on aspirin instead of twice daily leg injections.  One less painful thing in his life is something to be very thankful for.

Thank you to everyone who has been praying - I can feel  your support and I know that God has been protecting my baby boy throughout this journey.  It's incredibly frustrating when the doctors have no answers.  Jacob's condition has been described to us as "unique", "a puzzle", "extremely rare", and so on.  The fact that there is very little medical guideline for treating a baby with a single ventricle heart defect and complete heart block is terrifying.  Even rarer is the fact that Jacob's heart block developed in utero, and was not a complication of open heart surgery.

I also want to say thank you to those who have written messages, sent gifts and visited with us at the hospital.  Last week we even had a visitor from Twillingate :)

Heading back to Sick Kids now - here's a quote shared with me recently by my very wise and beautiful Mom:

"I believe that tomorrow is another day, and I believe in miracles."
                                                                                                 - Audrey Hepburn.

This quote is now written on the chalkboard beside the door to our room here at Ronald McDonald House.