120 days in the NICU and home today...YAY!!!!!!!

Danielle's discharge doctor!!!!! He told us he appreciated what 'hands on' parents we were! That made us feel good!

Physical Therapist Kathi, she worked with both of our kids during their stay and is WONDERFUL!!! Demonstrating her favorite position for Danielle to gain head and muscle strength.

Big yawns, both kids slept on the way home w/ daddy in the back seat of the car!!

Big kisses for his little sister, Dylan refers to Danielle as 'baby'!

All snuggled for an afternoon nap in the bouncy seat!

Danielle is now at her home and loving life with mommy, daddy, big brother Dylan and puppy Skylar!!!

We got the great news this week that as long as Danielle was eating good for mommy's sleepover on Wednesday that she would be able to come home today and home we are!!!

Danielle is now weighing in at just over 9 pounds 2 ounces! She is eating 3 ounces of breast milk every 4 hours w/ formula added for extra calories and loving it! Now because I seem to be the only one that she will consistently take all of her bottle for every time we did need to learn how to do the NG tube feedings at home in case she starts not eating all of her bottles. This was a little nerve wrecking, but it is super easy, Brad and I are both comfortable doing this if we need to resort to that. It is very nice they let us learn this so we could take her home and they 'trust' us that we will maximize her potential to get her all of her calories during the day! We once again did come home on oxygen, which is perfectly fine. We are using the same Respiratory Therapist that Dylan had and he is awesome and super nice! He notified us when he came to do setup that because of Dylan and the length of time he was on oxygen they learned a few new things and got some new equipment to make things easier for parents. So now we get these benefits. We can now refill our own portable oxygen tanks at home vs. having to pick up several from St. Lukes Home Care every week, this is SO much more convenient. We also have a tank of liquid oxygen here as a stationary unit, looks pretty much like a keg of beer, this will last for 1 month which is very nice also. Danielle did get her settings lowered down to .5 liter which is what Dylan came home on also. They did a room air test to see how long she would last off oxygen before she de-sated. She did great, 18 minutes before her sats dropped to 88. This is so encouraging and a sign that the oxygen will not be around for too long. We know she is on it mostly for her eyes anyway but good to know the strength of those little lungs!

She had a great eye exam on Wednesday with her new eye doctor which is Dylan's also. He okay'd her to come home and be rechecked in 2 weeks at his clinic in Iowa City and for her settings to be dropped down! This was very encouraging and we pray that things continue to go great with her eyes.

Danielle will have a few follow-up checkups these next few weeks in Iowa City. She will followup with the NICU doctor in 2 weeks the same day as her eye exam. Just routine. Then she will meet with Neurosurgery for her 6 week post op checkup, at this time she will also have an MRI done to make sure the shunt settings are where they want them and that too much fluid isn't draining. Because of the MRI Neurosurgery will then have to use the magnet and reset her shunt setting.
She will have a recheck on the hearing screen. Because of the oxygen at 1 liter, there was too much noise when they did the screen so they will re-check. Then she will also have a hip ultrasound. This is something that St. Lukes does not do but the University does and it is in their clinical guidelines and is standard protocol for them to get a hip ultrasound on ALL babies born breech or thru c-section regardless if they were born there or transferred there after birth. This is to check hip placement because sometimes the hips can pop out of alignment during a breech birth or c-section. This is definitely a difference between hospitals and we are completely fine with this being precautionary checked.

We also have the same in home nurse that Dylan had. She will come 2-3 times per week to check Danielle out and get her current weight. This is SO nice for a piece of mind!

We will also have our own Physical Therapist who will come into our home 1-2 times per week and work with Danielle. We are excited about this also!

So Brad and I were talking about the little rundown of our past 2 years:

8.7 months or 261 days spent in the NICU with 2 little miracles

Average of 783 trips to the hospital

Brad & I both trying to manage with me being on 9 weeks of bed rest w/ a 2 yr old!

Learning more about medical equipment, medication, surgeries, Neonatologist, ARNP and

other specialists than we ever thought we could ever know!

Learning what Otolaryongology is

We have cried tears of the unknown, tears of sadness and tears of joy and happiness

Changing our lifestyle for the best interest of our children :)

And the best part is, now having both of our miracle babies home with us so we can snuggle them whenever we want to, protect them, teach them and watch them grow 24/7!!! The lord has blessed our family in so many ways, there is not one thing that we take for granted. Thank you lord for our miracle babies and reuniting us as one family together in our home. We are very fortunate.~