Wednesday, January 30, 2013

72 days old- big boy crib

Chance has graduated to a real crib!! Physical therapist was in holding him when I are I arrived today and he was wide awake. That's who is holding him in the pic. He did great! We did more paci dips today and he took the larger green paci too!! He's growing like a weed which is awesome. He's now 17 inches long!







Tuesday, January 29, 2013

71 days old

Chance enjoyed his pacifier dips this morning. He sucked on the pacifier as breast milk was dropped on it. Yum, yum!! As soon as he's on the nasal cannula, we'll be able to try introduce the breast and bottle.

I worked with the physical therapist yesterday on some vestibular sensory therapy. We sat Chance up in a seated position and slowly rocked him left to right and back and forth. He did really well with that too! He was just looking all around looking like a mini Michelin Man with his head gear on!

Please continue to pray for the healing and strengthening of his lungs and that he'll be able to move to the nasal cannula soon. As well as take to feedings like a champ!

He's now 4 lbs 9 oz!! And they've increased his feeds to 42 ml/3hrs.



Monday, January 28, 2013

10 weeks old

Chance has been just hanging out. Still doing good on cpap. Speech is coming tomorrow to start paci dips and prep him for feeding!!

Saturday, January 26, 2013

68 days old

Chance is trying cpap mode with just a pressure. They weaned his pressure today and he seems to be doing awesome with it. They're slowly weaning the temp in his isolette so he'll hopefully be able to be swaddled, clothed, and pop the top of his isolette for good soon. Here's a couple pics from yesterday. He was throwing a fit because the RT changed out his nose pad.









Thursday, January 24, 2013

ROP exam update

ROP hasn't progressed anymore in either eye. Doc said they actually look better and the back of his eye is growing! PTL! Recheck in 2 weeks.

Waiting on The Lord

I've written a couple times before how helpless and frustrated I've felt at times through all this. How the only way I've been able to maintain like a halfway sane person has not been through my power alone, but through His power and strength.

Joc and I finally made it to church last night to hear a wonderful message by Pastor Locke out of Philippians 3. In his message he said that the most intimate relationship with The Lord usually occurs during your times of struggle, hurt, and loss. When you're in your darkest of times is when you feel the presence of The Lord the strongest. It is during those times that you're weak enough, still, and oftentimes quiet enough to "hear" from The Lord. “I waited patiently for the Lord; he turned to me and heard my cry.” Psalm 40:1 (NIV)

This is the 2nd time in my life where the only thing that could comfort me was turning to Jesus. He has shown me peace amidst our storm and given me assurance that things WILL be ok. Yet, how easy it is for us to forget all that comfort and peace and go about our everyday busy, hectic lives forgetting the One person who allows us to even live our busy, hectic lives.

I didn't feel joy or even want to think about rejoicing during the first few weeks after Chance was born but once things settled a bit, I began to feel an overwhelming joy for life. One of excitement and anticipation for what our life will be like when we can bring our baby home. It's tough to think about rejoicing in The Lord through your struggles. But, if He allows you to see the rainbow after the storm, it's a wonderful feeling!

Philippians 4-
4 Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

My prayer request today is for every one of you reading this to stop and give thanks to our Heavenly Father for allowing us to feel the hurt, the pain, the loss, and the sufferings which brings us closer to Him and allows us realize how small and helpless we really are without His love for us.

Tuesday, January 22, 2013

64 days old

Another day closer to his birthday! They've been going back and forth from nasal cannula to NIPPV head gear to figure which one he does best on. He's currently back in NIPPV with a rate. Progress is slow but steady. Focusing now on growing our boy! Got a new bead for first holding like a big boy!! I'll post his beads soon. I'm going on the 4th string tied together!







Monday, January 21, 2013

Happy Birthday to my BFF, Andrea

Andrea- I love you and thank you for being such a wonderful friend for the last 19 years!!!!!!

9 weeks old- cpap & clothes!

It's been a busy last two days for our little guy! He got dressed in his first outfit yesterday and he's officially on cpap with just oxygen support!!! He's doing awesome with it so far! Today I got to hold him like a big boy all swaddled like a burrito!

He wasn't too thrilled with putting on his outfit!!











Saturday, January 19, 2013

2 months old

Our little guy is 2 months old today!! He was moved to cpap mode this afternoon and if he does well on that they'll move him to the nasal cannula this evening. Prayers he can do well on it!!

Dr. Shivani mentioned "home" today for the first time. You have no idea how high my heart jumped!! It won't be before his due date, march 4 but this was the first time "home" was mentioned. I've been waiting for someone to say he'll be ok. And him saying that was my "ok"!!





Friday, January 18, 2013

60 days old!!

Guess who turns 2 months old tomorrow? Yep, it has gone by fairly quickly. Now we have to get his breathing, latching, and/or bottling down. Learning to suck, swallow, and breath simultaneously can be quite a challenge.

I'm sitting here enjoying holding my baby. Now that he has the tube out, I can hear his little squeaks. I'm still waiting to hear a full on cry. All of u who complain about your child's cries plz be thankful because Im still waiting to hear his cry.

The nurse today said I could start bringing clothes up! That's super exciting! My fav nurse is back on Sunday and we're planning to give him his first real bath in a tub...with bubbles!

Chance is doing wonderful so far on the NIPPV. He will prob go to cpap this weekend which only gives a pressure where the NIPPV gives a pressure and a rate.

Will post pics of his 2 month and bath pics.



Thursday, January 17, 2013

NIPPV breathing 3rd try

Prayers that Chance will make this time!

59 days old and iv free!!

He's officially iv free for the first time!! He had his eye exam today and both eyes are stage 1-2. He'll get reexamined next week. By 35 weeks they should know which direction his eyes will go and whether he'll need any treatment or not. Lord I hope it doesn't get worse :-( I helped hold his little arms and hands down during the exam. Chance is so brave! The exam was not fun.

They're pulling the tube this afternoon after he settles from the eye exam. I pray he can make it off the vent this round!

Look who discovered his thumb!!







Tuesday, January 15, 2013

8 weeks 2 days old

First off, Chance's brain scan results showed the grade 1 bleed is resolving which means healing.  Yay Chance!  

He is officially 4 lbs, such a big boy :-)  They're tanking him up in preparation for NIPPV.  He's getting more blood and they've switched the mode on his vent to make it so he's doing all the work.  It'll alert when he's not doing all the work and can switch over to the settings they had it on before if he tires out.  So, we will see!  They'll decide after rounds tomorrow what the next step will be.  I'm rooting for him to make it this time! 

The nurse today swaddled him and opened the top of his isolette so he wouldn't get hot.  

Big event coming tomorrow... Chance's 1st big boy bath!  Stay tuned :-)  

Hi everyone! I'm wide awake.  Excuse my baby talking voice, I just can't help myself when I see his beautiful eyes!




My mom is #1!

Monday, January 14, 2013

8 Weeks old- 33 weeks adjusted

 "This is the day the LORD has made; let us rejoice and be glad in it."
Psalm 118:24

I just love good days at the NICU!  Nothing in this world makes me happier at this point.  I'm all too familiar with the feelings the bad days bring so I WILL rejoice in today!  

God has allowed our precious Chance to grow and thrive.  Our faith in Him has never been stronger than it is now.  The brain scan hasn't happened yet but it'll be done sometime today.  I'll update the results when I get it.

Last night, his picc line was leaking.  The picc line is the main line where all iv nutrients and any other medications go through.  It's been in his foot basically since day one.  Well... IT'S OUT!!!!!  That is HUGE news everyone!  That means he is no longer needing iv nutrients because he's getting all his nutrients through my breast milk.  Yes sir'ree, Chance is on FULL FEEDS!  They've increased his feeds to 32 ml/3 hours, that's over 1 oz people!  They're starting iron supplements which will eventually help keep his blood level up so he won't need blood transfusions.  He's also starting a different diuretic which hopefully will be more beneficial in helping out his lungs than lasix was.

Last night's measurements: 3 lbs. 14 oz. and 15.35 inches long.  Probably by next week he'll be able to start wearing clothes!!!!

They've weened his vent settings today and will get a chest x-ray and gas tomorrow to see how he liked it.  If all looks good, they will take the tube out and try NIPPV again.  They say with his age and weight, he should be able to breath on the NIPPV but we have to take into account his chronic lung disease too.  So, 3rd times a charm?!?!  We will see!  Prayers for the healing of his lungs please.  After he tackles his breathing, the next hurdle will be learning to latch which can be very difficult for preemies.

The dietician showed me Chance's growth chart today after rounds and he's on target in his weight, length, and head circumference!   
 

Sunday, January 13, 2013

My two boys

Here are the 2/4 loves of my life. The other 2 are Mav and Bella!! I was sick today so Joc went up without me.
Chance is doing well. Still working on strengthening and healing his lungs. Nutrition is going awesome! Brain scan tomorrow and we exam on Thursday.













Friday, January 11, 2013

53 days old- stronger

We're officially off isolation. When cultures are sent you have to mask and gown up until tests come back negative. No fun!

But, they all came back negative!!!! The cultures go for 48 so he can come off antibiotics tomorrow. So, my boy was just plain tired of trying to breath! They already weaned his vent settings and will possibly wean again here this afternoon. He's def more active today. His feeds have increased to 16 ml/3 hrs and he's 3 lb. 7 oz!!!




Thursday, January 10, 2013

52 days old- back on vent

Yep, back to the vent. He just exhausted himself. He lasted much longer this round than he did last time so that's a plus and shows he's getting stronger. Just as they did the time before, they're sending some work ups of his blood, urine, and mucus to check for infection or a virus. After rounds, since he's become less active (hopefully just from exhaustion), they decided he needs a spinal tap to rule out meningitis. The doctor doesn't think he has it but they have to rule it all out to be safe. So, he's already on antibiotics just in case he does have an illness.

I was questioning myself and God yesterday about why this had to happen this way. Could I have prevented it? I had this symptom, etc. Only God knows why and like I've written before, the only reason I can see is to show of His works.

I was reading a blog post this morning from a sweet family that lives here locally. She had twin boys at 23 weeks and only 1 miraculously survived. Her little boy was at Children's as well. During Christmas, they delivered gift bags with a blanket and a nice card of encouragement. Anyways, she wrote this on her blog and its so fitting and so comforting to me. She was talking about asking God "why did this happen?" She said...

In John 9:3, the disciples ask Jesus why a man is blind. They are wondering if he sinned, or his parents sinned and if that is the reason for his blindness. Jesus responds, "It was not that this man sinned, or his parents, but that the works of God might be displayed in Him."

Psalm 73:28 says " But as for me, the nearness of God is my good; I have made the Lord God my refuge, that I may tell of all Your works."  Check out her blog, it's great!  http://bryanandrobynadams.blogspot.com


Thanks for all your prayers! Keep them coming.

Another huge prayer request is for a dear friend, Charlotte. She's been fighting lung cancer and just found out she has brain cancer. Gods in the healing business. Please pray for the healing of her body.


Wednesday, January 9, 2013

51 days old

Chance has been making slow but steady progress. Joc is finally feeling better so he got to come up to the hospital last night. He couldn't come up for like 5 days. He was surprised how big Chance got in just those few days.

His daily feeds are increasing daily, he's up to 13 ml/ 3 hrs. If he continues to tolerate the feeds, this time next week he should be on full feeds!! Yay!!!!! That's HUGE! Then, they can talk about stopping his tpn (nutrients thru iv) and remove his picc line in his foot. What does that mean?? That means he'll have no more needles stuck in his body unless he needs more blood or for blood gases. But no more left in permanently!

He's still having desats and bradys where he drops his o2 level and heart rate. This is a typical preemie thing. Basically his immature brain forgets to breath for a second or two which causes his stats to drop. Half the time he brings himself up all by himself but other times he needs some stimulation and extra o2 for a bit to bring him back up. He is still on the NIPPV though which is great! They're slightly weening his rate tomorrow night from 30 to 25. He will remain on the NIPPV until his desat and brady episodes stop. The doctors say by 36 weeks, that's when most episodes disappear. The younger the baby was born the closer to 36 weeks it usually takes.

Next week is a busy week for Chance.

He gets his 2nd head ultrasound to check for his grade 1 bleeding. Prayerfully it's lessened and/or dissipated altogether.

He gets his 2 month immunizations. Poor guy ;-(

And he gets his 3rd ROP eye exam. He did have zone 1 in his left eye two weeks ago. So prayerfully that hasn't worsened and his right eye will still be clear.

I'm getting my much needed dose of kangaroo care today!