I am happy to say today's visit went really well. Jaylie is off the ventilator and started feeds today! That's crazy good! AND Jaylie is in an open bed breathing room air on her own (AWwwWESOME)!
Kristina got to hold Jaylie for a couple of hours today. Jaylie was really sensitive to touch due to the surgery this week and coming off anesthesia. After fussing for a bit, Jaylie settled down enough for Kristina to hold her for a couple hours which was really good for mom and Jaylie, yay!
After Kristina held Jaylie for a couple of hours, we went and got some coffee then met with the nurses and Dr's to have a 'Care Meeting'. During this meeting the nurses and Dr's advised us of Jaylie's current conditions, what to expect concerning mid-term goals and what to expect long-term.
Jumping to long-term goals, the Dr's explained Jaylie is an uber small baby. The Dr's explained only 1 out of 3 babies born at 5XX grams survive, so for Jaylie to survive and do well is AMAZING! The Dr's continued on to explain, with Jaylie being so small, most babies born this small have developmental 'troubles' in life. I asked what the Dr's meant by 'troubles', they explained 'troubles' meant possible mental cognitive delays, physical growth delays and usually fine motor skill delay's. The Dr's explained these delays can be minimized by starting to see an occupational therapist as soon as Jaylie gets home. The Dr's continued to advise one of the better occupational therapy centers is just down the street from where we currently live (isn't God awesome!). We discussed some deals around what to expect long term and went over Jaylie's growth chart a bit. Here is Jaylie's current growth chart:
Looking at the chart above, the little dots towards the bottom of the graphs is where Jaylie's numbers fall. Jaylie's numbers are way below the normal percentile ranges, but that is ok because we serve and AWESOME GOD whom has blessed us with amazing miracles so far! We believe He will continue the good work He has started in Jaylie :)
Moving on to the immediate and mid-term goals.
The short term goals is to get Jaylie going on feeds and putting on some healthy weight. The pediatric surgeon would like to double her weight from 1500 grams to 3000 grams. The pediatric surgeon hopes to double Jaylie's weight (hit the 3000 grams number) within a couple of weeks (2-4 weeks or so). Then, after Jaylie has put on a good amount of weight using the upper intestine track and the stoma, the surgeon will be looking to test and hopefully reengage the lower intestine, then close up the stoma, then let Jaylie rest a bit after the stoma closing surgery, then send Jaylie home! If things go perfectly, the surgeon advised we could probably be taking Jaylie home in mid March.
The Dr's completed the MRI for Jaylie and it came back looking good. The Dr's said they could see where there had been a previous bleed (when Jaylie was first born and had a major setback) and how the bleed has healed. The Dr's said they did not see any problems at all with Jaylie's MRI.
Summary, today was a really good day, the end of another episode and the beginning of another period of growth and recovery. We received good news from the Dr's confirming all the tests done (biopsy's included) came back negative and Jaylie's is shining like a super start with her recovery.
Kristina and I are looking forward to getting back to helping Jaylie grow and mature instead of stressing about tests and stuff. We are relieved and excited to see what God has in store for us these coming weeks.
Pray requests: If you would like things to pray for you here are a couple of things Jaylie will have to overcome:
1) Jaylie's long term developmental growth
2) Physical size (being smaller than all the other kids her size)
3) Mental cognitive development
4) Upper and lower intestine health
5) Bladder health
6) Growth and maturity
7) Guidance for Kristina and I as parents help us see and make the right decisions
8) Guidance for the Dr's, nurses and Jaylie's care takers that they would see and make the best decisions for Jaylie as well
Of course, I'm sure you all can see and think of other things not mentioned above, those are the quick things I can see and think of at the moment.
As I've mentioned several times already, Kristina and I are supper ready to be done with this week and are ALL the way ready to start a new BETTER week :).
As always, thank you SO much for your prayer and support! We really appreciate it!
Nathan, Kristina & Jaylie
PS: Thank you ALL for those that participated is Kristina's baby shower this last Saturday, she loved it! You all did a great job, thank you!