Will's Update

Thank you for all of your prayers and support. Will's surgery was successful. Dr. Connors was able to reattach Will's intestines. He also took out Will's appendix since he doesn't need them for anything. We are praying for Will to have a speedy recovery. We will add pictures this weekend. Thanks again!

Will's Surgery

Will is finally having his tummy surgery on Thursday at 12:37 pm.  We pray that he will do well during surgery and recover quickly.  We also pray that he will begin to make progress on his feedings and vent settings.  Finally, we pray that the surgeons have steady hands and the skill to successfully complete his surgery.

The Past Few Days

Daddy bought Erin a new outfit that he told her could be passed on to her brother.

On Saturday, daddy had the great idea to bring the new Rock and Play Sleeper to the hospital.  Erin loved spending time in her new seat.  She looked so tiny in the big seat.



Erin needed a little help holding in her pacifier.



This is what Erin looks like without her CPAP mask and hat on.  She was able to be without it for about 20 minutes on both Saturday and Sunday nights while Megan changed out the prongs, hat and seals.  Way to go Erin!

Erin  weighs 5 lbs 2 oz and 16 1/2 inches long.

Will weighs 4 lbs 12 oz.

Will is starting to look more and more like his daddy.  He has the top off of his bed now and will be wearing some new shirts made special by his grandma Melanie. Will has his reconnection surgery on Thursday.  We hope that this will help him begin to make progress on his feedings and vent settings.

The babies got their two month immunizations last week.  They both cried for the first shot and did much better for the next two shots. We took a video of Erin getting her shot, but it is too sad to share.  Her cry was  just heartbreaking.



Daddy bought Will his first football with the hope that he will hold on to it instead of his tube.









I love you buddy!



Look Who Was Wide Awake!

9 weeks old
4lbs 8 oz.
16 inches long

9 weeks old
4 lbs. 13.4 oz
16 inches long



Check out my new big girl bed!



The Hodge-Podge Baby Shower



I've been calling this shower the hodge-podge baby shower because it wasn't just one group of people (ex. my family).  We were lucky enough to have a shower that included my family, Mark's family, friends of my mom's, friends of mine and family friends.  Everyone who was invited had a special connection to our lives and we were proud to have shared this special day with them.  I feel that each of the guests has played a part in who I am today.  From Mrs. McLean, my fourth grade teacher, (and good friend of my mom's) to the Baumgartens and Jane Nelson  (and Mrs. Webley-even though she couldn't make it to the actual shower) who I learned parenting tips from while I spent countless hours babysitting their children.  Lori Sparks who took me to MSU when I was in high school and showed me why I should become a Spartan to the family members that I only see a few times a year.  Thank you to all of you who took the time out of your busy schedules to come and celebrate Will and Erin with us.  We are so blessed to have all of you in our lives.

My sister Krysten and our cousin Diana (who reads our blog every Sunday night with her family.)  ;-)

The Baumgarten girls (minus oldest sister Lindsey) I started babysitting for them when I was 15 years old.

Nieces Sarah, Amanda and Lauren and cousin Kylie. All four girls have been making pictures for the babies and are VERY excited to meet their new cousins.

Daddy trying to get the computer connected to the hospital website.  They put a webcam on Will and Erin for 30 minutes during the shower so that everyone could meet them.  Below is a picture of Erin (notice her new big girl crib.)



My sister, me and my mom.  Without them this shower never would have happened!



The super yummy chocolate cake from grandma Connie (via Costco). The nurses loved the leftovers.



Aunt Krysten guarding the present table. ;-)



Carol Barrett, Lori Sparks and Patty (teacher friends of my mom's)




Cousin Kari and proud grandma Pam

The banquet room at the Up Town Grill. I would recommend this place for your next party (if you live in the Walled Lake area).

Will and Erin's first piggy banks!

The valence for the babies room. The walls are painted the yellow color in the giraffe.  Do you notice our four great helpers?



The proud mommy and daddy!



Happy St. Patrick's Day

Erin and Will wore green on St. Patty's Day thanks to grandma Pam and friend Colleen.  The hospital staff  loved the bibs and socks. Thank you!  Mommy got her green beer and daddy had a Guiness. 

We all celebrated this green holiday in style.

The bib looks much bigger than it really is.  We will have to take a picture of them wearing the bib next year for a comparison. 



Will looks like he is standing on his head in this picture. What really happened is that I had to turn my phone at a funny angle to get him, his socks, and the bib in the picture.  Did you notice that he is using his dumbbells?  ;-)



I just LOVE these socks on her!

Blog Features

I added a link on the right hand side for you to sign up and receive an email whenever we update the blog.  This will help our 'stalkers'  who check this link many times a day.  :-)

To satisfy my own curiosity, I added a track link to see how many 'hits' we've had on the blog. I am amazed at how many people have been reading our story. Wow! Thank you!

If you scroll to the bottom of the page you will see the Popular Posts from our blog.

At the end of the year, I will print off our blog and make it into a hard bound book for each of the babies. I am not a scrap booker so this is the next best thing.  Thank you to my friend Laura who gave me the idea!

Will's Action Plan

As a teacher, I've had some students who may need to have an action plan to help them be successful learners.  I might meet with the principal, social worker, other teachers and if necessary, the parents.  We will come up with the plan and how we are going to execute it.  Today I was on the other side of this action plan because I was the parent.
Here's how the story goes:  Mr. Will decided to extubate himself early this morning.  He managed to get his sweet, little hands underneath the neobar that is holding his breathing tube in place and rip it off of his face!  The doctors, nurses and respiratory therapists were able to work quickly and reintubate him (put the tube back).  This is the fifth time that Will and his helping hands has managed to extubate himself.  He is making quiet the name for himself in the NICU.  So much so that they (doctors, nurses, nursing director and the physical therapist) held a safety precautions meeting about Will.  What were they going to do to stop him from pulling out his tube again?  There were a few options: 1. sedate him  2. restraints 3. individual care.   We are thankful that the team went with option 3. 

So here is Will's Action Plan:
1. Individual Care- He has his own nurse all of the time.  If s/he needs to leave there must be another adult in the room with Will.  No more sharing a nurse with Erin or any other baby.
2.  Dandlewrap- A special way to wrap him with his hands by his sides.
3. Baby Dumbbells- The physical therapist made Will his own set of dumbbells (that's what Mark and I are calling them).  Will's hands will always have something to hold.
4. He has the privilege to have his hands free during his care time (when diapers are changed, eyes wiped, etc.) because the nurse will be next to his bed to supervise him.

This plan will be in place until he graduates to NIPPV (what we call Scuba Steve) vent with the hat and nasal prongs. 

Mark and I have had a good laugh about this whole situation and we are very thankful that the staff is taking Will seriously.  We now have 'THAT child' (those of you who are teachers understand what I mean) everyone knows about because of their naughty behavior.  Here are a few pictures of our sweet looking, but far from innocent, boy. :-)




Will gripping on to his baby dumbbells and he seems to like them. They are made out of gauze and a piece of foam Velcro.

Will is in his new Dandlewrap.  It is nearly impossible for him to break free. 
This wrap is good for preemies because is gives them boundaries.

Rub-a-Dub Erin's First Time in the Tub

Erin had her first 'real' bath today.  We've given her sponge baths in her bed, but they just weren't cutting it anymore.  You wouldn't think that a 4 lb 4 oz baby couldn't stink, but she did.  Erin's nurse, Dea, suggested that we give her a 'big girl bath' so that's what we did.  Now Erin smells like a sweet baby girl.

Daddy is getting the bathtub filled up with warm water.

Bath time! We even had a rubber ducky in the tub with Erin. 
(Thanks to the March of Dimes who gives them to the babies for each holiday.)



Erin slept through her first bathtub experience.



Naked baby without any of her probes on because they came off in the tub.

We haven't had a 'family' picture with Erin in almost 6 weeks.

Daddy is getting her dressed in her newborn onesie and preemie sleeper. I had so much fun shopping for clothes.

Erin without her CPAP prongs in her nose because she was getting a new hat and prongs. She was able to breath on her own the whole time they were out of her nose.



The clean and happy baby girl who slept through the whole event.
  Luckily, we got some videos to show her when she is older (along with a lot of pictures). 



How are YOU doing?

This is a question are asked often.  The answer is usually that we are hanging in there, which is the truth.
Today Mark put a post on his Facebook page that I wanted to share with you here on the blog.

Mark's post: "Let me start with "nothing went wrong today" but the good days are quickly replaced with hard days. It's hard watching your family struggle to stay alive day after day. Milestones are quickly replace by a destat or emergency where even the nurses look concerned. Facebook may not be the correct forum for this, but just say a prayer for the twins if you would."
After many positive comments, he followed it up with:
"Thank you everyone. Julie and I had a great break down and cry session tonight. It makes you sit back and reexamine your life and dreams watching your family struggle.  I know we aren't the only ones with problems, so do yourself a favor and go hug your family and tell them you love them everyday!"

We really are hanging in there.  One of Mark's friends who has been through this NICU experience, said that the middle part is the hardest. I totally agree with her.  We have been living this life for 52 days now.  It is amazing how quickly the time has gone, but yet, we still have so much further to go.  We are tired of driving to see our children and just want our babies to be home with us, just like a normal family.  We look forward to the the late nights, poopy diapers and everything else that will come with having our babies at home. 
Erin is doing great. She is gaining weight every day (over 4 lbs now) and is making progress on her vent settings.  She is wearing clothes and is regulating her own body heat which means the lid on her bed is up and the heat is off.

Will needs some extra prayers.  He is struggling with many things.  For the past three weeks, he has blood in his stomach when the nurses check before they feed him again.  Some days he has none and other days he has a lot of what they call 'coffee grounds' (dark blood that looks like coffee grounds).  He has been given ulcer medicine and that helps.  He doesn't always digest his food either.  The doctors want to keep some milk in his tummy because that helps to reduce the acid and it will also keep his intestines and stomach working.  But, they aren't sure why he is having these stomach problems.  Will also has a lot of secretions (mucus) in his nose, throat and lungs. Again, the doctors aren't sure why.  The nurses are suppose to suction him every three hours, but usually end up doing it every hour because he is so congested.  His chest starts to sound rattly when he needs to be suction.  It always amazes me how much they suction out of his nose.  Even some of the nurses who have been there for 30 years have never seen so many secretions from a little baby.  Will is also struggling with getting off of the standard vent.  He has tried the NIPPV (what we call the Scuba Steve vent because of the 'mask') and has lasted 48 hours for the longest stretch.  He tried it again last Sunday and lasted 4 hours and Wednesday he lasted 15 hours.  When they have to reintubate him (put the breathing tube back down his nose) it can be a pretty traumatic event for him (and me, as I happened to be there on Sunday when they did it.) He will usually spend the next few days breathing off of the vent, instead of breathing on his own.  He has some closure in his lungs, which is part of his chronic lung disease and having under developed lungs.  He is positioned in different ways to help with opening the lungs and he gets frequent x-rays to check the progress on his lungs.  In addition to these things, Will has been receiving blood transfusions almost every week for the past month.  Within the next 10-14 days, Will should have his tummy surgery to reattach his intestines.  We pray that everything goes well with this surgery.  Finally, the doctors are still keeping a close eye on Will's PDA (heart valve).  He had a heart echo (ultrasound) today and it showed that the he has a shrinking PDA (which is is good) and a slightly enlarged left atrium. 

Wow! It is shocking to see how many things Will has going on with him. I know that people are going to tell us that we need to look at the positive. Trust me, we do! But, it doesn't make any of this less scary and concerning.  Both Erin and Will are doing amazing, considering they aren't supposed to be in the world yet. They are growing, getting stronger and making progress.  We are proud of them and to be their parents.

Thank you for your ongoing prayers, support and kind words.  We do appreciate all of it and it helps to make this experience a little bit easier.

Happy Birthday!

The babies are seven weeks old today!  I can't believe how quickly the time has gone.  I wanted to post a few pictures from the day they were born and then pictures from today.  It's amazing to see the transformation that is taking place right before our eyes. 

This is Will when he was just a few hours old.



I am honestly not sure which baby is in these pictures. ;-)

Will is look deep into your soul.

You can see his PICC line (on his left arm) which is where he gets his nutrition.
You can also see his poop bag peeking out above his diaper.
The surgery to put everything back together will be sometime in the next 10-14 days.

As of 9 pm, Erin weighs 3 lbs 13 oz and is 15 inches long.

Erin is hanging out on Bubble CPAP.  This vent is one step closer to becoming vent free!  She is  breathing on her own with just a little bit of back up support from the vent. She pretty much sleeps and poops all day long. I've nicknamed her Princess Poopy Pants because she is good at filling her diapers.  It stinks up her warm house that she lives in. Erin's food is still fed to her through the tube down her throat, but now the food is compressed which means it's given to her over an hour via a pump.  The reason for this is because Erin's stats were dropping about halfway through her feedings. So instead of being fed 34 ml  (just over an ounce) of breast milk over 10-15 minutes she is fed over an hour.
 It seems to be helping.

As of 8 pm tonight, Will weighs 3lbs 8 oz and is 15 inches long.


Will was exhausted after being awake for most of the morning. He was looking around and seemed very calm.  He really enjoyed his paci today. Will doesn't get fed as much as Erin because his feedings keep starting and stopping.  He was up to 15 ml of breast milk every three hours, but those were stopped again this afternoon.  Will is having problems with lots of secretions (mucus) in his mouth, throat and stomach.  This is causing problems with his feeds. The doctors aren't sure what is going on and don't seem to be too concerned with this situation.  We hope that things get figured out soon so that Will can continue to make the progress that Erin is making.