October 2015

Time seems to pass extremely fast lately so I now have a new goal of updating my blog once a month.  Hopefully I can be better about that!  October was great and we were able to create many fun memories!  It's amazing how much faster time passes when things are going well! The first few months of Austin's life felt like years but now I'm having a hard time believing that he's six months old! I'm happy to report that we avoided the hospital since my last post and Austin is doing extremely well!

Just checkin out our new Harry Potter books!
(October 4th)

Starting to love his Bumbo
(October 5th)

5 Months old!  At 5 months Austin weighed around 11.5 pounds and had just started rolling over.  He officially acquired a nickname--Tin Man--from Uncle Blake.
(October 9th)

On October 10th we were lucky enough to fly to Minnesota to visit my brother and his wife and kids.  They have lived there for over five years now and we miss them like crazy!  Logan had never been to MN so I made sure we went during the most beautiful time of the year!  We had such a fun time and wish we could go more often!

Authentic Chicago pizza--it was amazing!

 

October 20th

Austin had two amazing primary care nurses at PCH, Jane and Jordan, and they have both moved away now unfortunately.  We were lucky enough to meet Jordan for lunch before she moved home to Florida.

October 26th

We hope this boy loves basketball as much as his mommy and daddy!
(October 27th)

For Halloween Austin was a sock monkey!  He hated wearing the costume so I'm glad we didn't spend much time or money on it.  We went to my parents' ward Trunk-Or-Treat and spent some time with family but other than that we had a pretty low-key holiday.  I'm sure we'll be more exciting next year when Austin is a bit older. 

I can't believe October is already over and we're almost halfway into November!  Now that Austin is healthy the time flies by and we are soaking it up as much as possible.  School and work are going well for Logan and we're really looking forward to Thanksgiving!  We had our first snowfall today so it truly feels like holiday season now!

As of Late

I really hate going so long between updates! Not only for anyone who reads this but also for myself. I look back at my blog often when I'm curious about something or when I need certain information and it's always more difficult to search through a long post. Anyway, I'm here to get things caught up! It's amazing how much busier life gets with a baby (especially a sick one) but I'll do my best to update more often in the future. 

Once again, things haven't been smooth sailing since my last post and unfortunately we haven't been home the whole time either. On Monday, August 24th, I took Austin in for his routine labs and after walking out of clinic, I noticed his arm hadn't stopped bleeding. He had never had clotting issues previously but I was still concerned enough to go back up and ask the doctor to look at it. Rather than get a doctor, the MA thought it would be find to re-bandage it and she said he would be fine if I left it on for awhile. I still didn't feel good about it so I should have been more assertive. Lesson learned. We got home and later than evening I was showing Logan his arm and every time we lifted the bandage up, it would bleed quite a bit. As much as we didn't want to be back at the hospital, we knew something was wrong so we called our pediatrician and headed straight for the ED. 

In the ED they checked his coags to see if his blood was clotting (we knew his platelets were fine) but when lab called down and said: "Those results came back really abnormal so we think there was a lab error, let's check again." We knew something was really wrong. They checked again and unfortunately there was not a lab error. Austin's clotting factors were dangerously abnormal so he had to be admitted. They initially prepared us to go to the PICU but someone worked some magic and got us on the floor. I would have stayed overnight regardless and the floor is SO much more comfortable. As wonderful as the nurses and doctors in the PICU are, nobody wants to be there anyway. 

We figured Austin would be sent to the Infant Unit so when they told us he was going to ICS for logistical reasons, we were very surprised but also cautiously excited! We hadn't been back to ICS since we were there with Eli so we knew it would be difficult in some ways but on the flip side, we comfortable with ICS and love the people there so we were looking forward to seeing some of them.  As we hoped, staying on ICS ended up being a huge blessing. We quickly felt very comfortable and one of our favorite nurses that took care of Eli happened to be working the night we were admitted. It was so good to see a familiar face! I guess Austin just wants to make sure he gets to experience as much of the hospital as possible. He has now stayed on three different units as well as the ED. Lucky kid! ;)

Fortunately they were able to get Austin's coags under control right away. For a very brief moment, the ED docs mentioned things like "blood disease" and "cancer" but Logan and I were sure it was all related to his liver issues. The GI docs were contacted and they knew right away that it was definitely a liver issue. They ordered some Vitamin K and FFP and within hours his numbers were back to normal. It was a huge relief seeing safe labs again because Austin was a big risk for a stroke if he were to have a brain bleed so we were constantly stressing about that the first night in the hospital. They kept asking us things like: "Does he seem to be acting normal? Is his suck normal when he eats?" Those things DID seem normal until we had to constantly watch them and then of course we didn't know what normal was anymore. After a couple doses of Vitamin K and two days in the hospital, he was given the all clear and sent home with oral vitamins. Not bad at all!

Because Austin's liver is still clogged and working overtime to catch up, it doesn't have the ability to access the Vitamin K necessary to clot his blood. He was okay up until now because at birth, babies are given a Vitamin K injection so he had enough of that stored up the past few months. As soon as his liver is caught up, he will be able to regulate everything on his own without the help of the oral vitamins at home. We feel so grateful it ended up being such a minor issue that took us to the hospital this time!

Since coming home, Austin has done really well! The vitamins seem to be doing the trick and he is also on a medication that is helping clear his liver up. He is now four months old and cuter than ever! Here is my Instagram post with a little bit about Austin at four months old:

 

99% of our lives revolve around Austin, which is just how we want it! Everything else is going well also. At the beginning of August we were able to go on my family's traditional vacation to Newport Beach and it was so much fun!  It doesn't happen very often that we all get together so we always love every minute of it!  It felt so good to get away from the hospital and regular life and escape for a bit.  We can't wait until next time!  Logan is enjoying school this semester and still loves his job. I get to stay home with Austin all day and it's the best job in the world! We went to Bear Lake over Labor Day weekend with some of our friends and we are now trying to enjoy each warm day we have left before it gets too cold! We are looking forward to our trip out to see some family in Minnesota next month and have our fingers crossed that winter doesn't come to the Twin Cities too soon!

 Until next time, enjoy these cute pictures of our boy!

Blessing Day
(August 2nd)

Family pictures in Newport
(August 9th)

Fresh out of the bath!
 (August 21st)

Austin made daddy laugh until he cried and I caught it on camera!
(August 21st)

Go Cougs!
(August 30th)

First time visiting his big bro at the cemetery
(August 30th)

Photo shoot during Relief Society!
(September 13th)

Soo happy!
(September 16th)

 

A Crazy Month

I hate going this long between updates!  It has been a month since I've documented Austin's life here at home and a lot has been going on.  Unfortunately the entire past month hasn't been spent at home.  We were so sad to be back in the hospital but thankfully his stay wasn't too long this time around!

Austin was re-admitted to PCH on Wednesday, July 1st for a variety of reasons.  He had a well check with his pediatrician that afternoon and we all agreed that he looked a bit yellower than he had previously.  Our pediatrician suggested we check his liver function just to be safe and we asked him to check his hematocrit at the same time.  Logan and I took Austin up to PCH to have the labs drawn and our doctor's office said they would call us in the morning with the results.  Shortly after we got home from the hospital, our phone rang and I knew it was going to be bad news regarding his labs.  

Sure enough, our pediatrician told us in a nutshell that his labs were critical so we needed to take him to the hospital to be admitted.  Not only were Logan and I discouraged to be heading back to the hospital, but just that morning at our pediatrician's office, Austin had received orders to d/c his oxygen and monitor so we were going to have a tube/cord free baby for the first time.  That seems so unimportant in the grand scheme of things but it definitely bummed us out at the time.

We got up to the ED around 7:00pm and didn't make it to our room until after 11:30pm.  Talk about an exhausting evening!  One reason it took so long was because they were debating between sending Austin to the PICU or Infant Unit.  We couldn't believe they were considering the PICU when he seemed so healthy despite his color being off.  Apparently on paper Austin's labs were very critical and they weren't sure the floor could handle him.  We assured them they could!

Austin's hematocrit was 16 so the first item of business was a blood transfusion.  We couldn't believe he had gotten so low again!  He wasn't symptomatic for being anemic at all so in a way his jaundice was a huge blessing otherwise we may not have discovered it for quite awhile.  Aside from such a low blood level, his liver enzymes and bilirubin were all quite elevated.  The team started throwing diagnoses like "Biliary Atrasia" around and we were pretty scared for awhile.  After running multiple tests and doing an ultrasound of his liver, it was determined that he probably doesn't have a liver disease because everything came back negative but his liver did look a bit inflamed.

Aside from a liver disease, they also mentioned that Austin might be septic with something like congenital CMV or another infection.  Naturally, cultures were taken and more labs were drawn but everything continued to come back negative.  We were so happy all of his tests looked normal but everyone was stumped as to what might be wrong with his liver.  Logan and I have been blessed with an amazing pediatrician and he actually presented a theory to everyone that now seems to be correct.  He believes that Austin's liver issues are all related to his Rh disease.  He thinks that Austin's bone marrow finally woke up and began spitting out a ton of red blood cells but there was still Anti D left in his body that I transferred to him during pregnancy so the Anti D attacked the new, positive cells and caused everything to hemolyze and sludge up his liver.  The specialists weren't entirely convinced of this theory and wanted to do a liver biopsy to further investigate but Logan and I didn't want to do such an invasive procedure so fast.  They agreed to test Austin's levels one more time on Monday the 6th and if his levels were up, we would do the biopsy but if they were down, we could go home and monitor his labs as an outpatient.

The labs on that Monday showed quite a bit of improvement so we packed up and headed home!  Unfortunately Austin's color is still pretty yellow/tan  and when we checked his labs a few days later there was no more improvement so we expected them to suggest the biopsy again.  Fortunately they didn't go that route and instead said that they do believe our pediatrician's theory is correct and want to give his liver more time before jumping to any conclusions.  Hallelujah!  We asked the liver specialists if Rh disease is typically this difficult to treat because Logan and I were under the impression that it would not be this hard and he said: "No, it's not usually this nasty.  This is definitely the most severe form of Rh disease I have ever seen."  Of course.  Just our luck!

The liver team has now passed Austin off to the hematology folk so we will meet with them next week and should have more info at that time.  There are a couple treatments sometimes used to treat Rh disease that we will hopefully discuss trying if Austin doesn't improve on his own.  In the meantime, we are thrilled to be home!

Aside from Austin's liver issues, he is now two months old and thriving!  If his skin wasn't a bit yellow, you would never know anything is wrong.  He eats really well, weighs about 7 pounds, and is smiling more and more!  We took him to get his newborn pictures taken finally and they couldn't have gone better!  We have only seen one but I know the rest will be just as darling!  Here's a sneak peak of our little love bug :)

Home Sweet Home

He's home!  The team had been hinting at a Friday, June 12th discharge for a little while but we didn't dare share the news until it was official.  It was so wonderful hearing during rounds that morning that we were all set to go! In all, Austin spent one week at IMC and four weeks at PCH.  Logan and I both agree that the week at IMC felt 10x longer than the four weeks at PCH and I'm sure that's because Austin wasn't as stable at the beginning and we had fresh postpartum hormones to deal with.  We also feel very comfortable at PCH so we were very happy to be there if he had to be in the NICU somewhere.  Thankfully our NICU experience is behind us and we can now begin our journey here at home!

Austin was originally transferred to PCH because it was discovered that he was born with Neonatal Diabetes.  We learned that he was IUGR and failed to grow in utero because of his diabetes.  His body wasn't able to access the sugar he needed in order to thrive which is why he stopped growing around 30 weeks.  When he moved to PCH, the endocrine team told us that he could either have transient (temporary) or permanent diabetes.  They sent in a genetic panel that is still pending and began treating him with insulin.  We hoped this would prove to be the transient form of diabetes but we also knew that things could be much worse if it indeed turned out to be permanent.  

Austin's sugar levels were all over the place and they were having a hard time finding the right type and dose of insulin to keep things stable.  His glucose level would get really high but after administering insulin it would always bottom out and that cycle would repeat every few hours.  After dinner on Saturday, June 6th, our family began a special fast for Austin and prayed that his pancreas would wake up soon so he wouldn't have to deal with diabetes forever.  Saturday, June 6th at 5:30pm is the last dose of insulin Austin received.

It still leaves me speechless and in awe every time I think about this incredible miracle we have received.  I have no doubt that the prayers of so many others undoubtedly contributed to Austin being healed.  When it had only been a couple of days since he had received insulin, we asked the team if they thought his pancreas might be waking up and they smiled and said it wasn't likely.  A few days later they admitted that our theory seemed to be right.  We continue to check Austin's sugar level here at home and it is staying right where it should.

As I watched this miracle unfold over the past week, I often asked myself why God would allow Austin to go through this only to heal him so swiftly.  I knew there must be a special lesson we needed to learn and one morning it suddenly clicked.  Throughout our experience with Eli, we had to learn to have faith in God's will and learn to accept that His plan may not be what we asked for.  I've never gone through something so difficult in my life yet my testimony of God's divine design of this life was strengthened more than I can put into words.  Fast forward two years later and Austin was now in the hospital and potentially dealing with a lifelong illness.  I believe God allowed Austin (and us) to go through that because He knew we would pray for a miracle and He wanted to show us that He absolutely is capable of blessing us with them if it is His will.  My testimony of miracles and seeing God's hand at work has now grown tremendously and I am forever grateful for it.

One of the most important commandments we receive in this life is to love and serve those around us.  Logan and I are eternally grateful for each and every person that has ever offered a prayer or sent a positive comment our way on behalf of our little family.  We never would have made it through Eli's passing or the struggle of getting Austin home without every single person that has supported us.  We genuinely pray you will feel of our love and gratitude for you!

Since coming home, Austin has done so well!  He is still on a small whiff of oxygen but shouldn't be for too long. Aside from that, he is thriving!  He eats like a champ, sleeps really well, and brings so much happiness and peace into our home.  We have waited for this moment for so long and it feels better than we ever imagined.

 

PCH Transfer

Happy 3 weeks to our sweet boy!  It has been awhile, I know.  Austin is doing great so I've been getting lost in his progress and not thinking about much else.  Since he was born, he has been dealing with hyperglycemia and is being treated with insulin.  The doctors at IMC were in constant contact with the endocrine specialists at Primary Children's and the hope was that as soon as he got up to full feeds, his sugar level would normalize.  Unfortunately that never happened so he was transferred to PCH on Monday, May 18th despite mine and Logan's reservations.  We love this hospital and knew he would receive excellent care here but we were approaching the two year anniversary of Eli's passing and we weren't sure how it would feel to be back when much of what we had experienced here was so difficult.  Despite our worries, we wanted the very best care for Austin so we were supportive of the transfer.  Fortunately the nurses are wonderful (we've picked up a couple primaries that we love) and the rest of the team is taking great care of our boy.

It has been determined that Austin has neonatal diabetes but we're waiting for genetic testing results that should hopefully tell us if it's something he will grow out of or if it's permanent.  We won't receive the test results until July so in the mean time we have been focusing on typical preemie milestones like gaining weight and teaching him to eat.  Aside from his wacky sugar levels, Austin is doing really well!  He officially hit 4 pounds a few days ago and is improving his eating skills every day.  Right now he eats roughly 40% of his feeds by mouth and receives the rest through his NG tube.  As soon as he is eating full feeds by mouth and consistently gaining weight then we will have more serious discussions about when he can come home.  We can't wait for that day and hope it happens within the next 2-3 weeks!

Logan and I spend our days at the hospital and thankfully they are pretty boring.  We know what it's like to have "exciting" hospital days and we want nothing to do with them.  We get to hold and cuddle Austin as much as we want (which is basically all day) and we even get to dress him in adorable preemie outfits now that he is sustaining his own body temperature :) For the first couple weeks Austin was really tired, as a preemie should be, so he was super chill but we're finally starting to see his little personality come out now that he's bigger and more mature. He doesn't like getting his diaper changed or temperature checked and he of course hates getting his insulin injections.  We don't like seeing him sad but it sure is nice seeing him act like a feisty baby!

Being back at the hospital has been easier than I expected it to be.  It is great seeing familiar faces and we are meeting many new wonderful people.  May 25th marked two years since we lost our boy so that was a tender day for sure.  Logan and I went to the cemetery in the morning and then went straight to the hospital because there was nowhere we would rather be on that day than with Austin.  I had an emotional moment as we pulled up to the hospital because I really couldn't believe we were doing this hospital thing again but as soon as we saw Austin I felt so much better!  We have felt Eli with us more than ever since Austin was born and we know he takes the night shifts when Logan and I go home to sleep :) The night nurses are great but nobody does the job like an older angel brother!

Enjoy some pictures of our boy from the last few weeks:

Ps...I will try to be better about updating my blog more often but if you'd like more frequent updates you're welcome to follow me on Instagram (@lizrjorgensen) where I post daily about his progress :)