Continued Progress

Marlin is doing pretty well.  Last week was a little rough because he had some imbalances with his sodium and bi-carbonates as well as his potassium.  He wasn’t acting like he had these but his blood test told a different story.  The doctors are perplexed as to why he has this, so they did a lot of tests.  The poor little guy lost so much blood to labs that they had to do a transfusion again.

However, he seems to be doing better and continues to grow.  He is up to 3 lbs and 10 oz.  He also has gained 1/8 of an inch in length for a total of 17 3/8 “.   We are trying something with my milk to help him gain weight.  Instead of getting the low fat fore milk, he is only getting the high in fat hind milk.  It is like eating heaving whipping cream instead of skim milk.  The good news is that he is gaining weight; the bad news is that they only use half of the milk I make.  We are just trying to figure out what works best for this little guy.

We have learned how to take care of his ilieostomy, which is really not all that bad.  Instead of wiping his butt we wipe a hole in his side.  We are also getting much more proficient at doing his cares like taking his temperature and giving him his bath.

Here are some pictures of him from the past week.  Enjoy!

The mustard looking stuff on his side is his ileostomy bag.  It is almost as big as he is.

Our little pea pod

Daddy snuggle

And then there was one...

The big news is that Marlin is breathing all on his own!  He now only has one tube in him and that is his feeding tube.  (I have been putting him to breast and he is very interested.  Hopefully, this will lead to the tube coming out soon.)  He is still hooked up to the monitor that keeps track of his heart rate, respiratory rate and his oxygen saturation, but those are just taped to his chest, not actually in him.  It is much easier to hold him now, even with the colonostomy bag.  I have included a picture of his stoma just so you can see why he has a bag.  The red/pink circle is his intestine that has been rolled over like a sock and stitched to his skin.  We were learning how to change his bag so we had to take it off and took pictures of it.  Marlin is weighing in at 3 pounds and 5 ounces.  He is losing a little bit of weight because they took him off the TPN (the high calorie stuff - it is sort of like going from eating calzones to salads)  He has also grown an inch and 1/4, for a total of 17 and 1/4 inches.

The dark red circle is his intestine

Splash Kingdom

As you know, we have been so blessed to be able to stay at Ronald McDonald house.  They often receive comp tickets for different things.  Thor and I had a date night last Saturday and went to see a great production of The Sound of Music.  The other thing we were able to do was to take Gus to Splash Kingdom water park.  We decided to make a day of it and had a blast.  Here are a few fun photos.

They had these cut outs at the Splash Kingdom.  Gus thought they were pretty funny looking.

                           

This was in the wave pool.  Gus had his reservations at first, but then he really liked the waves.  They gave him "a tum tum boom"

Marlin Juice

Gus came to visit Marlin again.  He decided to tell him a story about a corn combine and where popcorn comes from.  Then in moved into how to make "Marlin Juice".  It was supper cute.  Click on this link to view it.  When it asks you to log in, click on the log in words and it should let you view it.

http://youtu.be/A2qMUq9Rvxo

Here are a few pictures from this visit too.

Where's Marlin?

Taking a peek

New Tricks

When we came back from Idyllwild, Marlin looked like a giant!  The nurse said he spent the whole weekend relaxing and sleeping.  I think he spent the whole weekend growing.  He is tipping the scales at 3 pounds and 7 ounces!  He is recovering nicely from his UTI.  He is off the ventilator.  He still has the nasal canula to give him oxygen if he needs it, but he is basically breathing on his own.  They are increasing his feedings and have taken him off the TPN.  That was for all you nurses out there.  For the rest of you, it is all good news!  He has also started pulling his feeding tube out as well as the nasal canula.  This means he is getting stronger.  The best news (for me and Marlin any way) is that I got to put him to my breast for the first time Friday!  Of course, he didn’t actually feed, but he licked my nipple a little and liked it (like most men).  I know that these details are probably not very exciting for most of you, but we celebrate these little steps as much as we can. 

These are Thor's hands to give you some perspective on how small he is still

Where's my margarita?

Grandpa Dean Visit

Dean came out to visit this past week too.  He helped us celebrate Judy’s birthday and got some snuggle time with both boys.  He took a lot of pictures while he was here and all of these are his.  I told him I would make sure he got credit for these pictures.  It was good to see him and have him meet Marlin.

Thor giving Gus a message with his compactor truck.  Gus loves messages!

Playing in the Manzinita

Grandpa Dean and Gus

Around Camp

While we were home, we tried to spend some quality time with Gus.  Here are a few pictures from our adventures around camp.  Again these are Dean’s photos.  (Thanks Dean)

Being entertained by Teagan

Tight rope walker (this was at the new playground in Idyllwild)

Gus visit

The last visit Gus had with Marlin, Marlin was in his isolette.  Marlin had blown a hole in his colonoscopy bag, so we had to change that before we could do anything else.  That is a bit traumatic for Marlin, so we decided he should stay in the isolette for this visit.  Gus really liked opening and closing the doors to his isolette and putting the hand sanitizer on his hands.

Return to Idyllwild

After being at the RMH (Ronald McDonald house) for 28 days, they ask you to leave for 48 hours.  This allows other families to use the house too.  Our 28 days were up on Friday, July 27.  Marlin was responding well to the antibiotics and being his feisty self again.  The doctors reassured us that he would be in good hands while we were gone.

We went up to Idyllwild.  I was able to join the summer crew for the end of the season party, which was a real treat to see everyone before they left.  It also gave us a chance to celebrate Grandma Judy’s birthday (which was on the 26^th of July).  Gus helped me make a cake, frost it and decorate (see picture below).  Gus discovered what gummy bears where this week and wanted to make sure Grandma had them on her cake.  Cathy, our friend and Child Life Specialist at the hospital, told Gus a joke:  What do you call a bear with no teeth?  A gummy bear!  Our son had no idea what a gummy bear was so Grandma got some to show him. We also were able to do laundry and sleep in our own bed!

Little Set Backs

Baby Marlin is holding his own these days.  They tried taking him off of the NiPV assitance for his breathing, which is a good sign.  However, Marlin had other ideas.  He started having “episodes” where he would Brady and desat a lot so after 7 hours of breathing all by himself, they put him back on.  The problem was they weren’t sure if it was because of the change or if he had an infection of some sort.  Initially, all of his test came back negative and they couldn’t figure it out.  They even went as far as changing his feeding to once every 3 hours because he was tolerating it so well.  They would give him that feeding over two hours to begin with.

When they finally got the results of the urine culture it showed signs of a urinary track infection.  How does a baby in the NICU in an isolette get a UTI?  But I guess they do.  Fortunately, our wonderful nurse had kept his PICC line in.  The doctors told her that morning that she could take it out, but she thought it best to wait until we had all the test results.  Thank God!  They started him on 4 kinds of antibiotics until the other tests telling them wait kind of “bugs” (bacteria) he had.  He did not like this much, he became lethargic and slept a lot.

After a day of being on the antibiotics, his nurse said he was doing much better.  Before she even did anything to him (change his diaper, suction, or any other routine cares), he would kick his little legs out and start fighting her.  She laughed and told him to “bring it on”.  Marjorie is one of our favorite nurses.  It was good to see him fighting again.

They don’t think it has gone into his blood, but they want to do one more test, a lumbar puncture.  Yes, the go in and take a little of his spinal fluid to check that and make sure it has not spread and also to confirm how many days they have to do run the antibiotics.  They tried doing it yesterday, but were unsuccessful so they will probably try again in the next 24 hours.

This is the roller coaster part we all love so much (NOT!)  Two steps forward one step back.   So please continue to pray for him.  I will try to keep you updated.  In the meantime, enjoy the pictures.

Gus came to visit again.  He is starting to call Marlin “his baby”.  It is pretty cute.  He does so good touching him and telling him stories about tractors.  He really is a good big brother.  We are going to Idyllwild on Friday for the night.  It will be nice to see Gus in our home.