Home life so far

Things have been anything but dull around here since bringing Chance home.  Our pedi appt went well, he's 8 lbs. 9 oz and 20 inches long.  Things were going fine and dandy yesterday until little C decided to pull out his ng tube.  Ugh, yes, it was quite the ordeal.  It's a weighted tube so it goes past the sphincter into the duodenum and will stay in his stomach better but placement has to be checked with x ray.  The ng tube they used at the hospital can be checked with a syringe.  Anyways, unfortunately, the tube was not placed down far enough the 1st time.  I'm not sure why that wasn't noticed when they checked it on xray but it was very frustrating.  I guess what matters is the tube is in the correct place now.  I've been putting him in outfits that have the built in mittens.  The last two nights have gone good.  He's so sweet and such a joy to wake up to.  My world finally feels right with him being home.  We have our upcoming eye, ENT, and pulmanogist appointment in two weeks.

Home sweet Home! ~ Day 128

The day that Joc and I sought after, dreamed about, prayed for, and all of the above is finally here!  It was very emotional leaving the NICU.  We did a NICU stroll with Chance all buckled into his car seat and stroller to say goodbye to all the nurses and I was able to hold my tears back until we were pulling away.  As we were driving away from the hospital, it hit me that we were FINALLY taking our miracle 25 week micro preemie baby home!  HOME!!!!  Sigh... I'm exhausted.  Our sweet neighbors, Mandy and Jodi, decorated our front yard!!  What a sweet homecoming to see that :-)  Thank you girls!  We have appreciated everyone's homecoming wishes!  I won't go into detail just yet describing Chance's therapy schedule.  We're still working it all out.  But, I do know he will have at home nursing, speech therapy, OT, and PT 2x a week each.  As much as I want to scream just thinking about my new life as a revolving door; I have to keep in mind that our amazing Lord has brought us this far and early intervention is the best intervention!  

Once we got Chance all settled we introduced Maverick to him.  Animals are amazing beings.  He was so sweet and gentle with him like he has this innate instinct of his frailness.  To all of you who are like oh my gosh, that dog, la la la.  We are not planning on leaving Maverick the babysitter to watch Chance while Joc and I go out to dinner and a movie :-o  Bella is enjoying the nice weather outside and hasn't cared enough to come inside to meet him yet!

The night

Well we can for sure say we know what it's like bringing home a newborn! I prob got maaaaybe 1.5 hours of sleep last night and Joc not much more either. I do believe Chance's shining hour is between 3:30-4:30am!! It was amazing to lay there with our little guy. We can't wait to bring him home today. Dealing with new beeps and sounds all night was quite fun too. We'll have to get used to the two monitors he's on and learn the "tricks" of them!

Anyways today's the day we finally are going home... Home sweet home post coming soon :-)

Rooming in and nerves!

Tonight's our room in. We were trained on the feeding tube earlier today. I have so much anxiety running through me right now. He's hooked up to so much stuff, it's scary. I know we'll be fine. We've been around it for 127 days!

Joc and I are going out for one last dinner before heading up to the hospital. Prayers! Happy homecoming tomorrow!

Our schedule is going to be insane once he's home. He has his first pedi appt Thursday and then home health nurse and possible speech starts Friday. Then we have a follow up eye appt., Pulmanologist appt., plus a milestone follow up appt. oh my gosh. Then, on top of all that, we have nursing, speech, and pt/ot coming to he house 2x a week each. I already feel overwhelmed!!

Tomorrow...tomorrow

It's official!!! Our rooming in date is tomorrow night! So, discharge day is Wednesday!! I cannot believe it is finally here. Wednesday will be 128 days. I have been such an up-and-down emotional wreck these past couple weeks. For whatever reason it seems to be so much harder than the beginning of it was. I think I finally had time to digest everything that happened and come down from the initial high of the initial experience.

I am a little nervous, he's coming home with every tube, wire, and monitor that he is currently hooked up to in the NICU. It's going to take some time to figure out how to maneuver through our house with it all connected to him!

Feeding has been very frustrating. I am praying once we get home and can figure out more of his schedule, it'll start to all fall into place.

A professional photographer came and snap some pics of chance. Here are a couple I took with my cell. The pictures are super expensive, so I might get someone else to take more once he's home.

We got the awesome nurses and staff at Lewisville NICU a little thank u cookie present! Plus, Mav's newest trick!!! Who by the way, is 1 year old now!

The plan...take two

So, we have a new plan! We're scheduled to come home early next week. He will come home with his ng tube (feeding). This will allow us to work with his feedings at a slower, more relaxed pace at HOME. We will get connected with home health that'll have a speech therapist who will come work with Chance during feeds at home as well. All this with high hopes it'll just take him a little longer to happily take all his feeds.

He's almost 8 pounds now!

Happy 4 months old!

Chance turned 4 months old yesterday, 2 weeks adjusted. He's come so far. You can see how The Lord has intervened in his life through the collage of his growth.

After 2 full days of eating like a champ, he had a set back yesterday. Not exactly sure what the deal was but he was not into eating AT ALL. So they had to put the tube back in yesterday afternoon. He was gavaged (tube fed) two times last night. Joc and I came this morning and he ate the whole bottle like nothing. So, hopefully that was the last set back. I took it hard yesterday and this morning. I'm just so tired. I've been praying for The Lord to give me strength. Please pray he will continue feeding like he should. Worse case, we'd have to be transferred umm yes transferred to another hospital to have a swallow study done. The study will show if he is swallowing correctly and if he is aspirating or not. Aspirating is when liquid goes in for the lungs. Not good. I don't know. I'm going to express concerns to the doctor today during rounds.

So, here we are, the roller coaster ride is not over yet. Just when I thought we were on our way out and at least just on a kiddy carnival ride. Prayerfully it was just a one day set back.

Psalm 73:26
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (NIV)

Psalm 27:14
Wait for the LORD; be strong and take heart and wait for the LORD. (NIV)

Exodus 15:2
The LORD is my strength and my defense; he has become my salvation. He is my God, and I will praise him, my father's God, and I will exalt him. (NIV)

Joshua 1:9
Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. (NIV)

2 Chronicles 15:7
But as for you, be strong and do not give up, for your work will be rewarded. (NIV)

The company who is supplying all of his home oxygen and monitors came to deliver it all. Wow, it's a lot! He's coming home with everything he's hooked up to at the hospital. He'll have his o2 machine, o2 monitor, apnea monitor, plus 2 breathing treatments a day. And all will travel with us if we go anywhere!! Basically, we won't be going anywhere but to appointments! Hopefully he won't have to wear apnea monitor for more than a month.

The plan + bye bye feeding tube

The plan I thought would never come into action is here!! We're scheduled for discharge on Friday or Saturday. Lots to still do. He has to pass a car seat test where he sits in his car seat for a hour. Then, we room in the night before to handle all feeds, make sure o2 monitor and machine is working properly, and administer his breathing treatments. Can not wait!! Now I'm running around like crazy trying to get everything ready! Happy day! Thank you Lord for bringing us through. We could not have done it without our faith in You.

He's doing well with taking all his feeds so they pulled his feeding tube today. Oh my goodness!!!!

1 day down!

Chance has taken all his bottles for 24 hours!! I just skipped around the house in excitement! :/))))

Happy St. Patty's Day!

Chance has officially completed all his bottles since 9 pm last night! I feel like yesterday was a huge breakthrough with his feedings. The "lightbulb" came on. Strobe light no more! He has to complete all bottles for 48 hours to be considered for discharge. We're getting so close guys!!!!!! Keep those prayers coming.

Cautiously optimistic!!

Just spoke with C's doctor. He's ordering his home o2 on Monday. It's totally going to depend on Chance's feeding but he said we could be looking at going home end of next week :-))))))))

I can't get too excited because I don't want to be let down so I'm asking for major prayers!!!!!! They're going to all bottle feeds with cues. So if he's awake and acting like he wants to eat, they'll try bottling every time.

Chance modeling his cute monkey outfit (minus zip up jacket) from his Grammy Jen Jen!

Day 115- remaining patient...

Days just keep ticking by! It feels like we're never going to leave the NICU. Chance is making great progress SLOWLY! I have to remember he got a later start with feeds because of his little lungs, its just taking him longer to get it. They put him back to 100 o2. He was struggling with eating with the o2 wean even when bumping him up during feeds. He'll be coming on who oxygen which I'm totally fine with. I'm trying so hard to remain patient. We're praying we're looking at 1-2 weeks out. He passed his hearing exam yesterday as well! That was never a concern for us. Here's a pic of him during the exam.

My Aunt is in town this week and got to hold Chance yesterday for the 1st time!

Please pray Chance will take off with his feeds. That's all we're waiting on... We appreciate all your prayers!

My sweet friend from church came for a Chance visit this morning and brought him these adorable burp cloths her mom had made for him. So cute!!! Also, the NICU changed the footprint board for spring!