Merry Christmas

Well, it has indeed been a while since I've sent an update, but that means that Jacob is doing well!  We are just extremely busy with our normal day to day life!  Jacob is still gaining weight well and is nearing 13 lbs.  He is getting more and more active each day and really is coming into his personality.  He likes to talk and smile and coo and just be cute in general.

We are getting closer each day to his second surgery.  On January 9th we have a visit to Charlotte with the Cath Dr.  He will perform a catheterization on Jacob to check out his heart and all associated circulation to see exactly when he is going to need the surgery and if there is anything special they need to repair during the second surgery.  We expect to have surgery the 3rd or 4th week of January at this point, but we will see for sure soon.

Jacob had a Merry Christmas today and slept calmly while we opened his presents for him :).  He is excited to play with the wonderful gifts everyone gave him!

I hope that all of you have had a wonderful Christmas!

Two months Old!

Well, it has been much too long since we've had an update!  Just wanted to share a few updates about Jacob.  Jacob has been growing and gaining weight really well, and continues to bottle feed pretty well.  He is up to almost 10.5 lbs!  A week or so ago he celebrated his 2 month birthday!

Then

Now

It is hard to believe how much he has grown and how far he has come!

Friday he went to the pediatrician for his 2 month shots (4 of them).  Needless to say, Friday night and Saturday weren't a lot of fun, as he was feeling a little crummy.  But he is back to his normal self now and still managed to gain plenty of weight today!  He is on a every 2 week appointment schedule now finally with the cardiologist and every month with the pediatrician.  That makes our lives a bit easier!

We've had a nurse now for several weeks and she has been great.  She does an excellent job taking care of Jacob and will hold him all day if that is what he is in the mood for!  For now we are doing 8 hours a day until the end of the month.  Starting in December, we'll probably go to 4 hours a day so that we can keep the nursing for longer, hopefully till his next surgery.  Our current nurse will be leaving us at the end of the month, so we are hoping for another good one the next time!

Jacob is definitely developing well.  He is much more active during the day now, and coos a lot and definitely moves his arms and legs a lot.  He is a handsome little boy and loves to snuggle!

Thanks again for all the thoughts and prayers, Jacob sends his love!

Getting Bigger

I know it has been a while since I have posted.  My only excuse is that we are ridiculously busy!  It has something to do with having two little boys :).

Jacob is doing great.  We've been going to the cardiologist every week, and he is steadily gaining weight here and there.  He just broke 4 kilograms yesterday for the first time, so he has gained 1.1 pounds since he has come home!  Everything else is also looking great for him as well.

Our Little Boy

Ethan is also really enjoying having a little brother, despite the fact that he doesn't get quite the attention he used to.  He has really taken it all in stride and is doing so well.  It is just crazy to think how much he has grown up through this whole experience.  He loves his little brother a whole lot!

Big Brother

Big Kiss

Buddies

Jacob has been doing great on his feeds (obviously) and sleeping well through the night (except for when we have to wake him every 3 hours to feed him)!  The nurse started this week for 8 hours a day 10-6 PM.  She has been great and is a relief for Angie, especially knowing her mom is headed home next weekend.  Speaking of Angie's mom, she has been a huge help for us and we are really going to miss her!  It is going to be pretty crazy without her here, but we'll manage one way or another.  We are definitely thankful to have the nurse during the week so Angie can get a few things done and entertain Ethan.  Our dog and cat (Cody and Cashmere) came home this week, so we really have a zoo now at home!  We are happy to have everyone together though!

All in all, Jacob is doing great and progressing along.  We have a couple of more weeks of going to the cardiologist each week, then we'll be every other week which will save us a bit of driving!  Sorry again for the lag in updates, but he is doing well and thanks everyone for the thoughts and prayers as always!

Home!

Well, Jacob finally did it, he made it out of the hospital!

Welcome Home!

We are so proud of our little boy!  He had a great weight gain Thursday, so they decided to let us go on Friday (we didn't find out until 11:30 AM).  He also got to go home with no NG tube, which is a great thing!  It was a rush after that!  Between packing up at the hospital and the Ronald McDonald house, we had a lot of work to do.  We finally got on the road at 6:30 PM after a lot of work (Angie did most of it).  It was a relief to finally get home and Jacob did pretty well on the drive without fussing too much.

Nana (my mom) was nice enough to go to the grocery store for us before we got home, so our fridge was stocked.  It is hard to believe, but it was 5 weeks since we had been home!  Needless to say, it was good to be here!  The first night went fairly well, though Jacob fussed till 1 AM :).  Nonetheless, today we are getting everything unpacked and reorganized for our new addition.

Ethan has been a great brother so far.  He has really taken it in stride which has surprised us and he is just happy to be home.

We are still waiting for Cody and Cashmere (dog and cat) to come home in the next week or so.  Cody has been fighting a pretty bad illness since we've been gone.  Our Vet initially thought it was a partially torn ACL as he was limping, then the next vet thought it was a tick borne illness after that and treated it with antibiotics, and then after that didn't work, he definitely has some form of pneumonia, which is appears to be fungal, which is being treated now.  Thankfully my mom and dad have been taking great care of him and he will hopefully be on the mend.

On Monday, we have a home health nurse starting who will be here 5 days a week from 9-5 pm for about 2 months or so as part of the Heartest Yard program (see link).  It is an awesome opportunity for us to get settled when I go back to work.  We are very thankful for it!

Angie's mom is still with us for a little while longer.  She has been such a great help, I can't even imagine what it would have been like without her.  I can't begin to express how much we've appreciated having her here.

So, this big first step of the journey is done. The next step, is still a big one.  The interstage time (between his first and second surgeries) is very critical.  We have to do whatever we can to avoid him getting sick, as his body would have a hard time with a respiratory illness especially.  There is still plenty of risk at this point and we will be working hard to keep him isolated for a while.  So no trips for him to Walmart (darn) or going out to any restaurants (like we would be able to with 2 little boys at this point!).  The good part is that now he is pretty much an infant like any other, just with a few meds.  He went home with a Beta blocker (for his tachycardia) 4 times a day, Zantac twice a day, Lasix (water pill) twice a day, and a quarter of a baby aspirin once a day.  The breastmilk he gets will still be fortified with formula as he needs more calories than a normal baby just due to the extra work his heart and lungs have to do and they want him big and fat before the next surgery (there is a ton of research that points to higher weight leading to a higher success rate on the second surgery).

Thanks to everyone for the thoughts and prayers that have helped us get this far.  It was a tough time that we are glad is behind us, and now we just get to deal with the normal challenges of having a 22 month old and a newborn for a while.  Jacob will be having weekly appointments with the cardiologist (in Hickory, an hour drive) and normal appointments with his pediatrician.  I'll keep the blog updated periodically to let you know how it is going!  Again, thank you for all of the support.  I'll leave you with a pic of the new family (minus me)!

Can't Wait to Go Home

First, sorry for the lag time between updates, it has been a busy week because Jacob is getting to be a busy boy!  He is awake a lot more and fussy a lot more like a normal baby should be :).

This week we've taken out his NG tube for a couple of days now to see how he would do without it.  He has done well with it out, just not quite at the full volume of feeds we'd like.  They were talking about discharging us today to go home, but he didn't gain weight yesterday (didn't lose either), so they want to see a couple days of weight gain before he goes home.  That is a big disappointment, because we are all ready to go home!  That being said, it is really important for Jacob to gain weight so that he is a healthy boy, so hopefully he'll be chowing down today and will gain some weight!

We've pretty much checked all the boxes off to go home training wise.  Angie was able to get him through the carseat test - he had to sit in the car seat for 1.5 hours straight without any of his stats going down.  The first two tries he screamed the first 30 mins, so she tried again, then the second day was the charm, he slept the first hour and she just had to calm him the last 30 mins.  Needless to say, the ride home should be interesting!

Here's a pic of him sans NG tube:

Handsome Boy!

We've also been able to take him off of the monitors during the day, so we can walk around the room now at our leisure without having him hooked up to something!

Today he is doing well on his feeds so far, so hopefully he'll be able to go home in the next couple days!!!

A Good Weekend

Jacob has had a good weekend overall.  He is improving on his feeds and taking half or more of them by bottle before we have to give the rest by NG tube.  Today he had a follow-up chest Xray and it looked great, there isn't any recurrence yet of the chylothorax so that is awesome!

We increased his feeds up a little more (10% more in volume) and added some more calories, up to 27 calories/ oz (breast milk is normally 20 calories per oz) in order to help him gain weight.  He still has yet to gain much weight as we are fighting a little bit with him vomiting some feeds (once a day or so) so that sets him back a bit, but is pretty normal (imagine if you had a tube down your throat, holding your flap slightly open to your stomach all the time).  So we are being extra careful to help try to prevent that.

Here is a pic of him sleeping:

Sleeping Turtle

Three of his grandparents came to visit him, as well as his brother today!  Ethan was scared of the hospital and I really don't think he even grasped what was going on!  But everyone enjoyed seeing him and hopefully Ethan will catch on a bit!

 

 

With his Nana

Jacob did gain 50 grams today, so hopefully that trend will keep up!  I'm hoping we'll be out of here soon and headed home for the next part of our adventure!

Light at the End of the Tunnel?

We are starting to see the light at the end of the tunnel!  It is a scary thought in some ways; going home without 24 hour nurse support, but Jacob is doing pretty good.  As I've mentioned in the last few posts, feeding has been tough, but he is starting to catch on.  The last couple feeds he's been able to take about half of them by bottle (just a few days ago he was gagging and hardly able to take the bottle).  He gets tired after about 10-15 mins and we'll feed the rest via his NG tube.

We switched to a different formula yesterday to fortify the breastmilk and he has done much better.  The output from his chest tube is minimal and we'll hopefully be getting it out today or tomorrow.  He also will get the last of his IV lines out tomorrow, so all we'll have left hanging onto him are a Pulse Oxygen sensor, some EKG leads, and his NG tube.  It will definitely make him easier to maneuver, though we've been able to hold him while feeding him and other times without a ton of trouble as long as we are right beside his bed.

The next things on the list are mainly feeding related, working up his calorie content of his feeds and being able to take more and more by mouth.  Angie and I also have to watch several videos here and there (Purple Crying (in his case it would probably be blue :) ) and CPR and some more training on drawing his meds and so forth.  I am really hoping that we'll be able to go home by the end of next week!  Hopefully I don't jinx us b/c a lot of things can change!

Keep praying for him to go home (and stay there :) )!

New Digs

Yesterday we did end up moving up to the 8th floor Progressive Care Unit.  It is a pretty decent change as Angie and I are meant to transition to more of the care.  They also do a lot of training for the parents on how to care for the children.  We've been paying attention, so it hasn't been a huge learning curve.

I spent the night with him last night and he slept well, luckily for me.  I did his 12 AM and 6 AM feed and the nurse did the 3 AM feed so that I could sleep :).

Jacob still has his chest tube in, they are still watching the output of the tube to make a determination on the chylothorax.  We are now supplementing the breastmilk he is getting with additional formula (was normal formula, now it is a special formula to help with the chylothorax) to increase the calories to make him big and fat!  In the next day or so, they'll remove the chest tube, so we'll have a little less to maneuver around with.

We also have a speech therapist who is helping with his feeding (bottle).  Believe it or not, even though he was feeding ok by bottle before his surgery, due to being intubated, his muscles lose their strength and make feeding tough.  He sucks the bottle well, but his swallowing isn't quite meshed with it.  It was really surprising to me, but it is very common to have feeding issues; I was just confident that wouldn't be the case!  In the meantime, we are feeding him via NG tube (a tiny tube that goes through his nose and down his throat into his stomach).

We also have a occupational therapist who comes by a few times a week to help with some developmental things.  Things as small as how he grips his thumb in his hand can be something we will work with him on.  Nothing too major though, just need to do a few things to catch him back up with the other babies!

Today he is struggling a bit with his feeds as we've changed him over to a formula to help with the chlye and his tummy doesn't doesn't seem to like it too much.  We are going to try to ease him into it in the hopes that it will work!

We also got a checklist of things we have to do before he can go home now, so we have a new goal to work on!

Progress!

Jacob had a pretty good weekend when all was said and done.  Friday he showed some collapse of his right lung, so they worked hard to open it up and by Sunday morning it looked much better.  His left lung had a lot of fluid on it however, so they decided to put a chest tube in to drain the fluid off.  They got 60 ccs of fluid initially (2 ounces).  If you can imagine that much fluid in a little baby's chest, you know he is breathing much better!

Today he is off of all breathing support, breathing great 100% on his own!  The new concern is that he may have chylothorax, which is a fluid that leaks around the lungs and is a somewhat common side effect of cardiac surgery.  Hopefully his lymphatic system will seal itself off and he can stay the course and get the chest tube out in the next day or so, but if not, he will have to go to a special formula to help control the output of the chyle and it should be controlled fine by that.  If that is the case, he'll be on the formula for 4-6 weeks and then can transition back to fortified breast milk.

Another big change will be that we'll be moving in the next day or so to the progressive care unit where Mom and I will be doing more and more of his care so that we'll be ready for the transition home.

Overall, he is doing well, and moving in the right direction.  Hopefully we are over the breathing hurdle now and will get this chest tube out in the next day or two.

A Good Day

Today has been a good one for Jacob!  We are working on taking him off of all pain meds completely (he is well past his dose due for Methadone).  He also had two of his IV lines removed (one in his neck and one in his leg); he now just has one IV line in his arm left!

He had another heart Tachycardia last night (actually two of them), but we were able to get it on the EKG so that the cardiologist could look at it (I about had my own heart attack trying to help and wanting to get it stopped - which it did once they suctioned out his nose - the "jolt" shocks his body back into his normal rate).  Based on their assessment, they said it was Atrial Tachycardia, which is not a huge deal and preventable with beta blockers (which he'll start tonight).  They shouldn't cause any major side effects, so hopefully that will be a bump we will be past shortly.  More than likely they'll need to tweak the dosage, so they'll be keeping an eye on it.

I got to hold Jacob for a while this morning for the first time in a long time, and Angie is holding him as I type this!

At this point, they are still really working on his lungs.  He just still has some area of his right lung that is really congested and needs to be cleared up in order for his oxygen to come down and the pressure as well.  Just a waiting game really and work on the respiratory team to clear it up.

In the meantime, his big brother Ethan is still having fun at the Ronald McDonald house and Angie's mom Rita is a life saver in helping to keep him entertained while Angie and/or I are at the hospital.  Ethan has adjusted well to the house and enjoys the play room, playground, and train set (Thomas!).  Getting him to eat is usually a challenge because he wants to go go go!

Hopefully in the next day or so his lungs will continue to clear out so that we can start bottle feeding him!  It has definitely been a waiting game.

Progress, slow progress

Tuesday, Jacob was successfully extubated and put on CPAP (think Darth Vader helmet).  He didn't like it, but he did like it more than having a tube down his throat!  He spent the afternoon and evening on CPAP, then early Wednesday morning, they moved him to high flow (basically your normal in the nose oxygen, just with a steady flow of 30% oxygen at a higher rate).  He's did pretty well, but had some withdrawal symptoms yesterday as a result of coming off of the pain meds and sedation drugs.








We got to see a lot of his eyes yesterday (which are for now a deep blue) and he was pretty active.  His withdrawal symptoms seem to have gotten better throughout the night and was able to rest last night.

Here is a picture from yesterday with Jacob a little happier and less sedated!

Happier Baby

Jacob did have a short period of SVT, which is an elevated heart rate (200+ BPM) that is a somewhat common side effect of the surgery.  They have him wired up to a EKG just to keep an eye on it in case it recurs, but his body was able to resolve it itself this morning.  It is a bit scary, but we were told of all the arrhythmias to have, this was the least concerning.

His next big hurdle is just getting the volume down on the air so that he can bottle feed (they don't bottle feed at high flow), but he is getting a small amount of momma's milk every 3 hours, so at least he is getting something for his tummy (he also gets nutrients via IV).

Keep him in your thoughts and prayers!  Hopefully we will keep taking steps forward over the next few days!

No tube Tuesday?

The weekend was pretty uneventful for our little Jacob.  He has been weaned off of just about all but a sedation drug and had a steady weekend.  We haven't been able yet to take him off the ventilator yet, he still has had some stuff in his lungs (that we would normally cough up, but he can't with a ventilator) that has kept them from taking it out (we are being extra cautious so we don't have to go through it all again).  Otherwise, he is doing awesome.  His heart function looks great and everything else is pretty much going as it should.  The ventilator is a big hurdle though, and we are definitely hoping that it can come out tomorrow so he can get another step closer to coming home.

Once he comes of the ventilator, he'll go to the NCPAP machine so that he'll still have plenty of help to make sure he is successful.  They'll work to wean him off of that so that he can go to oxygen through is nose and then we'll be able to feed him.  Each day is a new day, and a step closer to being able to hold him again!  Soon enough, he'll be there, we just have to let things go at his pace!

Two Steps Forward, One Step Back

Cue the 80's music...  The title is appropriate though.  Wednesday, they extubated Jacob (took him off the ventilator), took his chest tubes out, and removed his pacer wires and catheter.  Needless to say, he had a few less things dangling off of him!  After the extubated him, he struggled with his breathing a bit throughout the afternoon and night and was a bit fussy (I would be too).  They put him on a NCPAP machine (an anti-apnea machine some adults use, just a lot smaller) to try and help his breathing early this morning, but he was still struggling.  After a chest X-ray and some deliberation, the team decided to reintubate him (begrudgingly).  It was the right decision as he was just not quite strong enough to breathe on his own yet.  His right lung was giving him some issues due to some congestion that caused it to collapse a little bit.

Once back on the ventilator, this morning, his lungs looked great.  He is definitely more relaxed breathing now and will hopefully be able to have a couple of days to relax and then will be able to come off the ventilator on Sunday or so.  Everything else has been looking very good for Jacob and his heart is working well.  We'll be excited to be able to hold him and feed him again and hope it is sooner rather than later!

An Exciting Day

Jacob has made a lot of progress from the last update.  The first critical 48 hours passed without any real concerns, and he has been steadily progressing.  Over the last day, he has been diuresing well (getting excess fluid off of his body) and is getting back to his normal cute size.  He has also been opening his eyes a bit from time to time; his eyes are blue from what I can tell, but may change later!

Last night they took out the line going into his belly button and performed a pressure test to see how well he could breathe on his own without the ventilator.  He did great!  They also removed his dressing from his chest.  He will be able to proudly show his scar to the ladies down the road (waaayyy down the road) and make up all kinds of cool stories :).

Today they are now planning on extubating him (removing his ventilator).  They will also be removing his chest tubes (which drain excess fluid off of his chest) and pacing wires (which he never needed).  A bit later on today, they will be try to feed him by bottle.  This is important as it will be key to getting weight back on him and recovering before he can leave the hospital.  He still seems to have a strong sucking reflex, so hopefully he'll do well.  Needless to say, it is going to be an exciting day!

He started back on feeding through a feeding tube two days ago and has been doing well, digesting his food well.  Jacob is definitely growing stronger each day!  He thanks everyone for all of his thoughts and prayers, they are obviously being heard!

I'll post some pics up in the next couple days, wish him luck today!

Success!

Jacob went into surgery this morning around 8 AM to be prepped.  Surgery began around 9 AM.  My mom and my brother David were both here with Angie and I (Angie's parents were taking care of Ethan a few minutes away) in the waiting room getting occasional updates on his progress.  Around 2 PM, surgery was finished and Jacob was moved back to his room.

Surgery was a success with no surprises.  To put it in the words of one of the surgeons, he was a "textbook" case.  So far, so good.  I am sitting with him as we speak, and he is stable and recovering slowly.  The next 36-48 hours are especially critical and will tell how he will do in his near term recovery, so keep him in your thoughts.

The care here at Levine is awesome.  Now that he is out of surgery, he has one nurse on him 24 hours for at least the next couple days (then at some point he'll go back to one nurse for two patients).  All of the staff here is extremely knowledgeable and helpful and even after being here 12 hours, they are always upfront, honest, and energetic.  It has been a great experience from that standpoint.

I'll save pics for another day, needless to say he has a ton of tubes going in and out of his body at this point (all of which are normal at this point).  He is on a ventilator and is still sedated.  He will slowly come of his sedation a bit, but will still be mostly sedated until he comes off of the ventilator.  He does have pain killers to help deal with any pain he may have as well (pain is indicated by an increased heart rate or blood pressure and irritability).

All of his vitals and many more numbers will be monitored very closely around the clock to ensure he has whatever he needs.  I'll post up another update in the next day or so to keep you up to date.  Again, please keep him in your thoughts and prayers.  As always, we appreciate all the support we have received!

The Big Day

Today started out as a pretty normal day for Jacob.  He was able to enjoy some sunshine and work on his first baby tan:

Getting a Tan!

Later in the day, he got to spend some more quality time with Mommy and Daddy, as well as meeting his Uncle Dave for the first time.  Nana and Pops were there to see him again as well.

In the middle of the day, we found out that Jacob is going in for surgery tomorrow.  It was looking like Tuesday, but due to some changes (nothing bad for Jacob), his surgery was pulled ahead.  The surgeon spent some time with Angie and I and reviewed many of the statistics for what to expect and walked us through the surgical procedure itself.  The procedure, called the Norwood, will take approximately 6 hours or so.  Jacob will head down for surgery around 7-7:30 tomorrow morning, with surgery starting around 8:30.  This procedure is the riskiest of the 3 surgeries that Jacob will be receiving, so we'll definitely be needing everyone's thoughts and prayers!

We were able to get Jacob baptized this afternoon as well.  The hospital even provided a gown for him!  He was very cute (as always) dressed up in his gown for the baptism and did well while Mom held him.

Jacob in his Baptism gown

Jacob being baptized

Dad (me) got to hold him tonight and feed him for the last time for a little while (he won't be able to feed until at least several days after the surgery).  Feeding can be a big issue for these little guys after surgery, so we are grateful to get every feeding that we can so that he'll have the process ingrained in his memory come time to do it again.

It is really tough to see him now, as a seemingly healthy little newborn, knowing that he is going into a major surgery tomorrow.  But the reality of it is that without it, he couldn't survive and the sooner he gets it done, the sooner we can take him home!

Please keep Jacob in your thoughts and prayers tomorrow.  The first 48 hours after the surgery are critical, so please keep them coming!  I'll be sure to post an update soon!

Getting Used to the World

Mr Jacob has been doing pretty well all considering thus far.  Since his arrival, he spent a couple of days in the NICU where we had the chance to give him his first feeding and change a poopy diaper (no pics of that).

First Feeding

Mommy also got a chance to hold him for the second time while feeding!  All the grandparents have gotten a chance to visit at least once, and super-mommy has been discharged as well.  His brother was jumping for joy when Mommy came back (that and the fact that he has a little brother!).

Jumping for Joy!

Angie is also making plenty of milk for Jacob so he can be big and strong and ready for his surgery.  At this point, they are saying surgery will be Monday or probably Tuesday, but we'll know for sure Sunday morning.  Yesterday afternoon (when Angie was discharged), Jacob was moved to CVICU (Cardiac ICU) in the Children's Hospital.  This is just normal protocol prior to surgery so the nurses and us (the parents) can get acclimated to everything and each other.  It is nice b/c Jacob now has his own large room.

One thing I haven't had the chance to mention is that the staff here throughout the hospital have been awesome.  There are a lot of knowledgeable, energetic people here and everyone has taken great care of both Angie and Jacob.  When Jacob was being delivered, there was something like 8 people in the room (other than Angie and I) and they all worked together well and

We are all getting settled back down in the Ronald McDonald House now that Angie is out of the hospital and sharing our time between Ethan and Jacob (which is quite a challenge).

Snuggle Bunny

With Mommy

 And of course, Mommy couldn't resist a model shoot today.  Jacob played his part well!

Little Brother

I am a Miracle!

Thank you to everyone for your support and prayers, we are doing our best to stay positive and definitely appreciate it all!  We will continue to keep you updated.  Keep Jacob in your thoughts especially as next week rolls around.  We will have some tough times ahead, but with the Lord's help, Jacob will come out on top!

Welcome to the World

He's here!!!  Jacob was born yesterday, September 10th and 9:10 AM (9/10 at 9:10!).  He weighed 7 lbs and was 21 3/4 inches long (just a little longer than his brother was).  He came into the world quicker than expected: all Angie needed to get going was the "ripening" medication.  The contractions got going quickly later that night around 2 AM.  Around 7 AM we moved to the delivery room and Angie quickly progressed to being ready to deliver.  5 or 6 pushes later, Jacob was out!  He was ready to be in the world and had a great start!

Jacob scored 9 and 9 on his Apgar, so he looked very healthy and strong.  Here he is right after birth with his proud parents!

Happy Momma

Proud Daddy

New Addition

 After we had our few minutes of snuggling with Jacob, he made his trip down to the NICU to get stabilized and started on prostaglandin (which is a medication used to keep his ductus open - which allows him to be stable until surgery).  They then proceeded to do a cardiac echo.  During the echo he stopped breathing due to apnea caused by a side effect of the prostaglandin (they just had to jostle him to keep breathing), so as a precaution, they intubated him (put him on a ventilator) so that he would be able to breathe without worrying of apnea bothering him.  So he then got settled in the NICU.

Our Little Boy

Well, Jacob is a fighter!  He did so well once he got settled down, that they took him off the ventilator after a few hours!  All of his stats are looking good, his O2 saturation levels importantly are good as well.  Hopefully we'll find out something when surgery will happen today.  I'll leave you with a picture from last night, after the ventilator was removed!

Happier Boy

The Start of the Journey

Well, I won't go into gory details, but it all started about 9 and 1/2 months ago; Jacob Riley Kuhlman was conceived!  Somewhere in those first 8 weeks of development, something didn't go quite right in the development of little (and I mean little) Jacob's heart.  His aorta, a blood vessel feeding the left side of his heart, or something else wasn't as big as it should be, and as a result, the left side of Jacob's heart didn't grow proportionally to the right side.  Jacob has a condition known as HLHS, or Hypoplastic Left Heart Syndrome.

Angie and I found out just before Memorial Day weekend.  Needless to say it was a shock like we have never had in our lives to find out first, that we were going to have a little boy, but then second, that this little helpless baby had a major medical condition.  All we knew at this point was that there was a serious structural defect with his heart...  We'd have to go to a specialist a week or so later to get an exact diagnosis.  It was a trying week to say the least, but we made it to the next appointment.  Angie's doctors in Rutherfordton were really supportive and caring, but the week still dragged on.  Once the appointment day came in Asheville, we went hoping that nothing was wrong, that maybe they were just mistaken.  Unfortunately, it was not to be.  The specialists confirmed after a couple long hours of scanning the diagnosis we are now very familiar with.

HLHS, if you haven't already read or heard about it, is a fairly rare and severe heart condition that affects about 1 in 5000 kids.  In a child with HLHS, the left side of their heart, specifically the left ventricle, is undersized and cannot properly pump blood to the body.  If left untreated, the child would not survive past their first 5-20 days of life.  Thankfully, over the last 30 years a palliative treatment has been developed that helps to manage this condition and enable children to live fairly normal, healthy lives if all goes well.  The treatment consists of 3 surgeries performed at birth, around 6 months, and last 2.5-3 years of age.  The goal of the surgeries is to reroute the circulatory system so that the body can be run with only the right side of the heart.

So, we then had to cope, and we coped fairly well all considering.  There were good days and bad days, but we've made it through.  More appointments, and a plan was made: we are going to deliver in Charlotte, where Jacob will have his first surgery.  We are very fortunate that one of the best Pediatric Cardiologist surgeons was right at our back door (Dr. Peeler at Carolina Medical Center in Charlotte).  As I write this, we are sitting in the Ronald McDonald House (yet another blessing) anxiously waiting Angie's induction which will begin tomorrow night.

I couldn't begin to describe the emotional roller coaster we've been through.  Just having a child is enough of a change to throw most people for a loop, but this is something we would have never expected, something you don't think would ever happen to you.  Yet here it is!  We are definitely excited to be bringing another little boy into the world and wish to no end that we could just take him home after a couple days.  Instead, it will be a longer wait, not quite the beginning we'd like, but nonetheless, we still are planning on bringing home a little boy ready to meet the world!

This blog will be a way for us to keep our friends and family up to date on this journey of ours.  In the end, we can't wait for you all to meet our wonderful son!

Here's a preview - Jacob at 36 weeks!