Jordan's Journey: Week 13

Jordan's Journey: Week 13 

Joey & I get tons of questions about Jordan's health...discharge dates etc. So today I have decided to make a list of Frequently Asked Questions. Here we go: 

Q:How much does Jordan weigh? 

A: Jordan is now 4 lb 6.5 oz 

Q: What's the magic number? What weight does he have to be to come home?

A: Unfortunately there is no magic number. I think many people have the misconception that prematurity = small but it's so much more. While some babies only have to grow, others are presented with challenges. So yes, we want him to gain weight because that's extremely important, but we also want him healthy. 

Q: Have they given you a projected discharge date? 

A: No. The staff has been very transparent about Jordan's progress. However, no one is able to predict anything. One day a baby may be on o2 support & in critical condition and the next day he or she may be breathing with no need for respiratory support...it's truly a day to day journey. We are confident that Jordan will come home soon. Whether that be 1 month from now or 5 months from now. 

Jordan's Journey is one of his own. Considering the circumstances (15 weeks early, 1lb 1 oz, heart surgery) I'd say he's doing extremely well. I have to constantly tell myself "he's not even suppose to be here yet" as my due date was June 5. Yes it gets tiring. Yes it gets frustrating. Yes I often feel like I just can't make it another day. But  God has equipped us with everything (people) we need to get through this journey. Your support means so much to us and we ask that you continue to lift us in prayer. 

With love, 

Joey, NaToya & Jordan 

Hold On...

Yesterday I had a conversation with God. It went a little like this...

God: Girl! You know better than to doubt me. Haven't I shown my faithfulness time and time again? (Ok maybe he didn't say girl)

Me: I know I know but God if you're going to put me in this situation you have got to help me get through it because I can't do it alone. 

God: Many times we must go through hardship and pain to see the promise God has for us. Are you enduring something right now? Trust God through it and find peace.

Now before you ask, no God didn't say this to me but I read it in my devotion last night. God always speaks to me through verses, songs or scriptures. So I know this was His response to my specific situation. 

To say the past few weeks have been tough is an understatement. I'm literally tipping the scale of insanity. However, every time I'm close to the edge I'm given a gentle (sometimes not so gentle) reminder that God is still good and He is still in control. 

So today I tell you as a dear friend just told me...hold on. God is preparing you for something. Yes, it's hard..very hard...but never lose faith. Try to look past your circumstances [today] and know that greater is on the horizon. 

xoxo 

NaToya Rae

Jordan's Journey: Week 10

Sooooooo I have a ton of news! I'll try to be concise (yea right, who am I kidding?) Last week I told you about Jordan's recovery. It was rough...to say the least. His vent settings were on 90-100% for a few days and his pressures were really high. They also put him on nitric oxide (inhaled) to help with the pulmonary hypertension. As you can imagine, we had a lot going on. Joey and I were faced with some tough decisions. I knew parenting would be tough, but I didn't realize we would have to make these types of decisions this soon. So naturally we weighed our pros and cons and prayed for guidance. 

After consulting with various doctors, we made a decision. Moving forward, Jordan has made leaps and bounds. They were able to wean his o2 as low as 34%. For a few days he hovered around 35-45%. Each day, his CO2 levels were perfect (their words not mine) so they began weaning the pressure on his vent. They only weaned by one but each day I would tell them that's enough for me! We celebrate every step forward! Day after day we would see signs of progression. I think the doctor even got a little excited :). 

Jordan hadn't been weighed since the day before surgery because he's been so touchy and they wanted him to rest. Friday night they weighed him and said that he gained 500 grams!!..which would put him right at 4 lbs!! They nurses didn't quite believe the gain because he was still a little puffy from surgery... of course I said it was right. My baby hadn't been weighed in 10 days so it was possible! The next day they weighed him and the scale showed about the same, give or take a few grams. Yesterday they started him on a dose of lasix to help with the fluid retention. So last night he lost a little but weighed in at 3 lbs 11 oz! I am ONE HAPPY MAMA! Can you believe it?! I mean I can! But can you?! From 1 lb 1 oz to 3 lb 11oz in 2 months!!! We are so proud. But the excitement doesn't end there ...... 

Last night I called to check on Jordan around midnight. The nurse said "Well, he's done something." I'm like omg what has he done. She proceeds to tell me that he decided to turn his head and self extubate (for like the 100th time). However, this time they tried him off the vent!....and he's still off!!!!! After 71 long days, my baby is off the vent!!! Go King go!! He currently has a nasal cannula (prongs in his nose) and since this morning, they have been able to decrease his o2 needs. I can't even tell you how excited I am! So we are patiently waiting and praying that he's able to stay off. He had to do things in his own time, when he was ready. I guess he's had enough! 

Last thing...I got to do kangaroo care today. I haven't mentioned it, but I haven't been able to hold him since early March due to fear of extubation and surgery. So today is a breathe of fresh air. He needed to be held and mommy needed to hold him. 

Our hearts are full. Please continue to pray that he maintains his breathing without ventilation support. As always, thank you for the thoughts and prayers. 

With love, 

Joey, NaToya and Jordan Sanders