Author: Sarah

I haven’t prayed much throughout everything.  I don’t know why that is.  Well, I do know why but some things should stay personal.  I cannot thank everyone enough for all of their prayers, wishes, thoughts, vibes, everything positive.  Right now I do need to pray several prayers.  I am a very worried mother and I’m sure I will be for the rest of my life.  Please join me in prayer, however you pray.  I need to meditate on these words and this will help ease my mind to get a few hours of shuteye…

Dear God, please guide the surgeons, nurses, assistants, and specialists.  Guide their hands, heads, and hearts.

Dear God, please don’t let tonight be the last time I tuck my son in to bed.  Please don’t take him from us.

Dear God, please give Evan back to us just as happy and full of smiles.  I want my happy baby boy back.

Dear God, please don’t let this weekend be the last time Evan hangs out with his baby friends.  Let them grow up together as children.

Dear God, please give Evan a full nights rest so he will be in the best form to go into surgery tomorrow.

Dear God, please allow this hospitalization and procedure to go without complications.  Please cut Evan a break.  I will gladly take it if you can spare him.

Dear God, please fill my heart with patience and understanding when people tell me, “Everything will be ok.”  Please quiet my tongue from saying, “So then do you want to change places with me” and know that they just don’t know anything else to say.  What do you say?

Dear God, please lift the load of worry from my heart and let me release in my trust into you.

Dear God, please help Evan’s father just as much as me.  Provide comfort to extended family and friends as well.

My family celebrates more on Christmas Eve so we loaded up the car with baby stuff, gifts, and dogs and headed on up.  First stop was Grandma Nan’s house.  We got there early and beat the rush of ~20 people who would be showing up.  Cousin Morgan helped to open Evan’s presents while Aunt Kate got to get in some cuddle time.  Sadly we could only stay for a short time due to our schedule needs and we proceeded onward.

 

 

Next stop was Holly Wood… ‘s house.  No, really, my Grandma Jo named her daughter Holly Wood.  Cool, right?  Ok technically she is Holly Wood Webber but details… Evy received even more wonderful gifts and mostly just sat there and took all the sights in.  He is definitely one to observe first, analyze data, and then act.  As you can see, we had more fun opening them than he did.  Next year he should be able to go bananas.

 

 

Christmas morning had me dressing Evan in a ridiculous outfit and I got one of the funniest “Woman, are you for real” looks he’s ever given me. Ahahahahahaha.  I just really love BabyLegs and have a couple pairs.  It is hard to get Evan to wear onesies due to the mickey button.  So if you don’t wear pants, it makes it easier.  Besides, who doesn’t want to see those sweet (albeit purple 🙁 ) toes and chubby little thighs.  Evy also checked out his first candy cane.

 

 

 

 

That afternoon Will’s family came over to celebrate and feast.  Evy opened his gifts from Mom, Dad, Nana and Papa.  And by opened I mean that he slept in his swing while we opened them for him.  Even as a child, going through this pile would have taken some time.  You think he is spoiled?  Nah…. just loved a whoooooole lot.

 

 

 

Uncle PJ and Grandma Nan came down to eat with us as they had a limited amount of time the previous day.  It was so nice for Evy to meet his uncle as he lives in Florida.

 

 

 

 

 

 

And finally here is Evy modeling the hat and pants Grandma Nan gave him while getting ready to go visit some friends.  Baby Gap in need of a model?  Because I’ve got one cutie pie on my hands here.

All in all we had a very tiring few days but absolutely worth it to give Evan the best First Christmas possible.  It is only the first of many to come!  Thank you everyone for your help, understanding, generous gifts, and love.

We have a 4 month old people!  Can you believe it has been that long?  Seems simultaneously like an instant and yet forever ago.  I’m honestly forgetting what my life was like before little man arrived. Or maybe it’s that once he came, my life truly began.  He is an amazing spirit and a wonderful little person that I love getting to know more and more every day.  We love you Evy, more than you will ever know!

Thanks to everyone for all of your support, prayers, well-wishes, and offers of help.  Evan is doing better today. His attitude is better and he isn’t as fussy as yesterday, but still more fussy and pissy than normal.  There are fewer incidents where he is crying uncontrollably, but they still happen where he is inconsolable and the nurse gives him a hit of morphine and he calms down and does much better.  This seems to be on par with his previous behavior too.  It seems familiar to me that when “typical” kids would do fine taking dose X of a painkiller, Evan would like a little higher dose please for a little longer.  He isn’t a “wimpy” baby and is very happy so I believe him when he wants a little extra meds for his owie.  He isn’t turning into some baby addict that’s for sure and most places are very cautious about handing out the goods as well.  We still haven’t gotten a smile out of him, which is rare because he smiles a lot, so we can see that he is still uncomfortable.

He is still carrying extra fluid so they gave him an IV dose of Lasix becasue it does work better than just taking it orally, which he does once a day.  So hopefyully with that we will see some heavy diapers as we work to get rid of the swelling and puffyness.  I rememebr this being an issue at UofM as well – Evan likes to hang onto his fluids.

We got another EKG today as well as an Echo to check out heart function.  Both tests show everything working like it should.  Evan is still wearing the cannula with an O2 flow because his sats (O2 blood level, pulse ox, etc.) are lower than we’ve seen still.  Our normal weekly cardiology appointments check his O2 and it is usually in the mid to low 80s (heart healthy folks are 99-100%).  Today it has been in the high 60s to mid 70s.  Our nurse has orders to turn down his O2 when his readings are in the 80s and so far that hasn’t been allowed to happen.  The levels that we are getting are within the range for babies with his anatomy (having a BT shunt) so it is only low because it isn’t his typical level.  He does look a little bluer in the face and not his normal pinky self.  Ah cyanotic circulation…

I guess I didn’t really understand just how close we were to losing Evan yesterday morning.  In talking with the PICU doc (same one from yesterday too) he was explaining the different tests that were performed and the results given (we already knew most of this but it was kind of a recap).  He said based off the EEG findings, nothing was found that would indicate some trauma suffered in the brain from “going down” yesterday.  His assumption is that Evan wasn’t down long at all, which was also reiterated from his blood gas (he was not acidic).  He also said that in his experience with kids with single ventricle defects, especially those with BT shunt prior to the Fontan, that once these kids go down they don’t come back.  He said their anatomy is so tenuous that the disruption to their normal flow can rapidly spiral out of control.  He said that very quickly the vasculature can close up and the little babies just don’t come back once their hearts stop.  I can’t even go there – to think of the what ifs and ponder at not having our little boy.  We are so fortunate we received the outcome we did.  We continue to appreciate all of your prayers regarding Evan’s complete complication-free recovery.

Well today has been an interesting one, that’s for sure.  Many lessons were learned today, the biggest one being that there are no minor procedures.  There is nothing routine and especially nothing that can be expected.

We were supposed to arrive at the hospital at 6 but got here at 6:45, heh… enough time for them to call and be like – uh are you coming?  We never had very good directions nor didn’t ask for any clarification prior to this morning so we ended up going to the wrong building.   After checking in, we waited a short time before going back to the pre-op room and meeting with various individuals who would be taking care of Evan throughout surgery.  Dr. Downing talked to us again about the procedure.  We asked him where the button was going to be placed and he felt around the pacemaker and was a little irritated with the lack of space.  I’m sure when putting the pacemakers in they have a reason for putting it on the left side but it leaves little room for other interventions when needed.  Because of the close proximity to his pacemaker and its pocket, they called to have a rep from Medtronic reinterrogate his device, even though we just sent a transmission on Halloween, just to make sure that nothing changed.  There was a small chance that if a cauterizing tool was used it could impact the pacemaker settings.  We were also told that if necessary they would call down for an echo to check to see where the leads were in relation to where the g-tube was going to be placed and how the orientation of his stomach was going to change.  We met with anesthesia as well and they talked to us about their procedures and their role in his operation.  We gave our kisses to our sweet happy baby and were told to wait about an hour for everything to be done.

After an hour, a nurse(?) came by and updated us of his status.  She was only passed along the information and we couldn’t really ask her for any details.  She told us that they had a difficult time getting an IV started but that they eventually got one in his leg and that they did call down for an echo.  So, after an hour they were just getting started with the actual stomach surgery.

Eventually Dr. Downing came by the waiting room and talked to us about the procedure.  He told us that there was an issue with the intubation.  When putting in a breathing tube, they like to obviously go below the vocal cords and into the trachea but want to stop short of putting the tube into either branch of the lungs.  In babies, the area is maybe 2-3 centimeters in length.  Even if placed properly, if a baby were to move they can push the tube into one of the branches, and usually it is the right one.  If air is being pushed into only the right lung then obviously the left lung isn’t getting any air.  And with heart babies especially those who are shunt dependent for blood oxygenation, the slightest obstruction of airflow can quickly cause things to spiral out of control. Evan’s heartrate dropped to 55 bpm, but that this was just the intrinsic value of the pacemaker.  In actuality his heart stopped beating.  The pacemaker was sending the signal but the heart wasn’t responding.  So Dr. Downing did chest compressions for 1-2 minutes and then listened and heart his heart beating.  He suspects the beating resumed while he was in the process of the compressions, meaning that it could have been after 15 seconds of compressions or 1 minute.  It is suspected that it wasn’t very long because they pulled a blood gas and the levels were just as perfect as they were prior everything getting started.  If the heart had stopped for longer then his blood acid levels would have been higher and he would have been in acidocis (he had acidocis when he had his stroke so we are familiar with that). They called Dr. Dommer and had her come down to the OR to do an echo and check his heart function.  It looked great and they decided to proceed with installing the g-tube.  Because of where the pacemaker is located Dr. Downing had to place it a bit off where he would normally but he had anticipated this.

Dr. Downing only gave us a little bit of the above information and we digested the big details but were pretty much in shock at the activities of a “routine simple procedure.”  They brought Evan up to the Pediatric ICU (PICU) and extubated him (removed the breathing tube).  He started coming out of sedation and began to exhibit some stiff posturing and irritated crying, except the crying of an extubated baby sounds like come crazy cat torture because of the brief irritation to the vocal cords.    We were sitting in the PICU waiting room when Dr. Dommer walked on by, coming to check on Evan.  We called her in and she helped explain more details given above.  She could sense that we were pretty inquisitive so after leaving us and checking on Evan she brought Dr. Downing out to talk to us more and go over things again. He said that Evan might not have any lasting effect from the morning’s activities but that he himself was surely impacted.  Probably going home with a couple more gray hairs than yesterday.

We finally got to go back to see Evan and he didn’t look good.  He looked pale and ashy and bluish.  The bottoms of his feet were pretty purpley.  He had his awful cat torture cry and I forgot just how terrible it sounds.  Because he was upset and crying he wasn’t breathing deeply so that helped add to his pale and purple look.  The more the sedation wore off the more pissed he became.  They had given him some fentanyl in the OR and it works great but wears off quickly.  Evan kept exhibiting stiff arm and legs posture.  He would arch his back, arms stiff but flailing, skreechy screaming cries.  It was awful and very upsetting for Bill and I.  He had a temp of 101 in the OR so we couldn’t really swaddle him or anything for comfort.  We looked at his little hands and between the two there were 7 pokes from attempts to get an IV started, with 3 more in his legs where they eventually found a vein.  At first we weren’t sure what the source was given that he had just come out of surgery and was just waking up.  Was he hungry?  Was he in pain?  Was he just pissy and irritated?  They were reluctant to give him some pain meds right away, which now looking back in my opinion this decision was insufficient for the situation.  They asked us what was normal behavior and we said this was highly abnormal.  They thought perhaps he was hungry and tried to give him some food.  When putting in the g-tube, they fill the belly with air.  I don’t know if they took this air out but when attempting to feed him an ounce of food there was a large air release from his tummy.  Maybe this was the source and now he was just pissy in general?  The feeding didn’t have any impact on mood.  Eventually they decided to give him some Ativan to remove some of his anxiety and calm him down. It did work, but he still had some stiffness and his little hands were clenched into tight fists.  When we said again that this was still abnormal and that we think it is from pain, they gave him a morphine bolus.  The issue with narcotics is that individually they might not do too much but they can easily stack.  Another issue is that they can quickly impact blood pressure, breathing rates, and oxygen levels so the oxygen in his cannula had to be adjusted by the nurse to maintain his levels.  His O2 stats were in the 60s after the procedure whereas normally they are in the mid-80s. So far I am not very happy with their sense of urgency in regards to pain management. Maybe they are just being cautious but I vividly recall a time when Evan was clearly in pain at U of M and the nurse literally ran down the hall for the meds and within less than 2 minutes Evan was being given a dose of morphine whereas today we listened to him scream for at least 15 minutes before they decided to give him something for pain.

Eventually Evan calmed down and went to sleep.  He must have been exhausted from being so upset for so long and the meds were making him groggy as well.  He needed the rest.  Due to all of the stiff posturing after the surgery and due to his previous history of seizures due to strokes, a 20-minute EEG was performed just to make sure.  The results ended up being fairly normal, nothing too unexpected or a cause of concern.  All of the examination made Evy wake up and he was instantly fussy.  After crying for a few minutes, he got another dose of morphine and calmed down.

We’ll also be adding something completely new to our “medical résumé.” Daily injections. 😥 Dr. Dommer has requested that he go home on the anticoagulant Lovenox which is only available as an injectable. We don’t yet know how long he’ll be on the drug but Dr. Dommer wants to make sure that Evan does not have another stroke issue like we had in Ann Arbor. Lovenox is a low molecular weight Heparin but unlike Heparin it is not necessary to check certain factors in the blood following dosing so it’s easier for patients to go home on or so we’re told. 😉 Sorry Pfizer.

Lessons from the day:

• General hospital stuff for Bronson is at the South Campus.
• G-tube surgery requires intubation, even for adults but especially for children and babies.  I guess I didn’t really put 2 and 2 together or think that it would be a big deal.  It is.  Go to a Children’s Hospital if you need this procedure because they work with little bodies every day.  Heart babies are fragile and can spiral out of control in an instant.
• I only want to go to UofM for all procedures from now on, especially if they involve intubation, no matter how minor.  I don’t ever want to come back to Bronson for anything like this ever again. It’s not that we feel Bronson did anything wrong, not at all, it’s just that if “S” hits the fan U of M is better suited to deal with Evan because of his heart condition and their vast experience with these babies.
• If you have a child with a complicated and lengthy medical history, write out your own synopsis.  No matter how many sources have your info, you will be asked again and again.  Know your dates.
• Bring your med list.  Even though the cardiologist provided our med info, we were still asked by 3-4 nurses and doctors for the information.  Even with this, his PICU nurse had his med list and it was wrong.  If you can bring the bottles so they can check for themselves that is even better.
• Breast feeding moms get free meals and unless you’ve tested negative for HIV in the last 90 days you are not allowed to store your milk here.

This past weekend some members of my family came out to visit Evan.  It was the first time Grandpa Phil got to hang out with Evy since Ann Arbor and the first time meeting Great Grandma Jo and Sharon.  Of course no one put the baby down the entire time and Evy got lots of hugs and kisses.  It also gave mama some time to practice taking pics of her little man.  Can’t wait for the ng tube removal just so that we can see his sweet baby face and not a bunch of tape. 🙁  Then we can have baby model photo sessions. 🙂 And thank you Dad and Sharon, GGJo, and Aunt Holly for the awesome jammy jams.  Very generous, very thoughtful, and very much what a growing boy needs.

Keeping this short and sweet.  Went to the cardiologist today and received some good news.  Evan has gained weight, the most in a visit since coming home.  He now weighs 11 lb 2 oz!!  Yay big boy!  He gained almost an ounce a day.  The nutritionist was giddy with excitement.  He is also still growing tall – I think she said 26 inches…. That would be 5 inches since birth.  Dang Evan.  An online growth chart says that he is in the 3rd percentile for weight but the 92nd for height.  Can you say string bean???

We can all say Go Evan Go!!

 

 

 

 

 

 

 

 

Happy Birthday to my Daddy, the bestest daddy I could have asked for!  I am so glad you shared your birfy day with me.

Love,
Evan

Holy cow!  We have a 2 month old!  And that is something we are so impossibly grateful for.  In one sense it seems like it took forever to get here yet it was just in the blink of an eye, truly.  We love you, Evan.  Thank you for the past 2 months, and especially the past 2 weeks at home.  Life is good… and very busy.

On Saturday, Evan got to meet his cousins Jacob and Morgan as we hung out with Aunt Kate at the Kalamazoo Air Zoo.  Plenty of rides for the kids to run around like idiots with a really big expansion of wartime memorabilia.  Of course the pricing structure changed so it will cost at least $8 instead of free but still a good deal, especially in the winter or on rainy days.  We later took the kids to a “big fancy restaurant” known as Chili’s and absolutely devoured some chips and salsa. Thanks for making the drive to hang out in the ‘zoo!

Within a year, our local group of friends all had children.  Our fun group which would get together for karaoke contests and bonfires now all have a little baby friend to contend with.  How great it is that they will all grow up together but how much more rare (at least at this stage) will our get-togethers as a group be. 

And that’s not even counting Round 2 of babies.  Now THAT will be quite crazy. Evan is the baby of the group and since we round it out, Bill wanted to get everyone together for a big breakfast.  12 adults and 6 babies.   We wanted to walk in with all the carseats and watch the waitstaff freak out.  He went and reserved a section on Wednesday for 11 am Sunday breakfast.  Mental note: even if you are in line by 11, if there is a large group ahead of you who didn’t make a reservation but threatens to walk, the hostess will give your section away – even if you tell her “hey that’s for our group – we are all coming” she will just look at you and say “oh but they are going to leave” and pass it along.  Que?  I had zero sympathy watching them scramble to put a section together for us.  They wanted to split us up but the whole point is to be a ridiculous group.  And we certainly were.

Back row: Natalie (Dec 2010), Joel (Aug 2010), Kathleen (Oct 2010)
Front row: Logan (June 2011), Caleb (May 2011), Evan (July 2011)

 

We also had a cardiologist appointment on Monday.  His weight was 10lb 7oz (but with pants and a full diaper on) and his length was measured at 23.5″. Eavy was very cooperative and didn’t barf all over the place unlike last week.  Small victories. 🙂  Evan started having some rather juicy-sounding coughs on Friday and we went to the Pediatrician on Saturday who said his lungs sounded clear so don’t worry.  Well, we mentioned this to Dr. Fountain-Dommer on Monday and she said that Evan could be aspirating some of his food.  This could come from when he is eating or during some reflux episodes.  Not something we wanted to hear.  Does that mean he will need to go back on the tube?  Ugh.  So she scheduled a swallow study for next Thursday, prior to his next cardiologist appointment.  From there, they will be able to determine what exactly is going on.  I also turned in some additonal breastmilk samples so hopefully I am still making some Grade-A quality milks.

Visiting nurse came by on Wednesday and weighed Evan at 10 lb 5 oz (with only a clean diaper).  I’m a little irritated with the Home HealthCare services.  The past 3 of 4 visits have not been when they said they would be, and it stinks to wait around at home and anticipate the call only to hear nothing.  Last week they said they were coming on Tuesday, but Tuesday came and went with no call, no show.  Wednesday morning they called 1.5 hours before they wanted to show up (it kinda works like Comcast –

they give a day they are going to show up and then on that day they call 10-90 minutes ahead of time to give you a heads up.)  It’s kinda annoying and I really don’t know what the point is but whatever.  Anyway, after a massive barf Wednesday night, we decided to give Evan a bath.  Evidently it was a truly terrifying experience.  You just have to watch the movie.  He never cried, but his eyes screamed sheer horror.  Clearly it was baby torture time.  Wednesday was also Evan’s 2-month birthday.  Happy day, bud.

Thursday was our 2-month well baby checkup at the Pediatrician.  This time Evan weighed 10lb 1.5 oz nekkid.  I know the scales are inconsistent so I’m not sweating those numbers but it’s like why collect the data if you can’t properly compare, you know?  With that weight, it puts Evan at the 10th percentile.  Yucky.  His height is in the 75th percentile (y’all know baby boy is going to be tall) and his head circumference is in the 15th percentile.  Which I think is funny because we haev a hard time finding hats to fit his noggin.  We have a long thin baby on our hands.  Come on little guy.  Fatten up like a big ole turkey.  I want triple chins for Thanksgiving!  Dr. Dodson listened to his lungs and agreed that they sound clear (not crackly) but that there was a little bit of wheezing so she gave Evan a nebulizer treatment.  He seemed to take to it very well (after some additional baby torture eyes) and is blood oxygen levels improved from 80% to 89%.  He seemed to be able to cough material out easier as well.  We went home with one and picked up a prescription and have orders to use it when he has a coughing fit or appears to be using more effort to breathe.  We go back on Monday for a follow-up.

Meanwhile, Bill’s family is on their way moving up to Kzoo from Florida in order to help us out with Evan.  Don’t worry Nana!  Pretty soon you will be able to see your little bear as much as you want.  Here’s to a busy weekend of moving!