Patience...

As I sat down to write the blog I had a lot of things on my mind that I was ready to get out and into cyberspace--and then I uploaded the pictures from today and I have fallen in love with my son all over again--and with that--I really can't remember what I wanted to write--all I know is, I want to be with Par 24 hours/day--and right now that just isn't possible. It is tough--especially now with so much interaction--I know he isn't old enough to know what it means when we leave--but it is bitter sweet to know that I can walk in the NICU 2 and calm his crying just by my voice when the nurses have been trying to calm him for the previous 10 minutes. He needs his mama--Rusty and I need him--and today God has shown us that we need patience--we need to trust His perfect timing--because the truth is--right now all I have is a repaired CDH baby who still can't breath on his own and doesn't know how to eat--that won't last long at home--no matter how much we love him. So, we have no choice but to trust in God's timing and just to go with the flow--and to seek Him when it "seems" more than we can handle.

Ah yes...I've remembered one of the things i wanted to write about...

My poor baby is not eating well. The frustrating part is that I have seen Par eat--
I have seen him eat vigorously--and swallow without problems. He has shown such progress--and then today he seemed to be very disinterested and slept through 2 feedings--he just wouldn't wake up--even with the bottle in his mouth. The nurse tried to wake him too--he was just tired and not hungry--or not hungry enough. (He is just like his dad!)People keep telling me this takes time--I think it is just now sinking in--I see now why people say this is so frustrating. The first hurdle of CDH is something we have control over--fixing him. The second hurdle is something that only the baby has control over--and you can't reason him through the exercise of "sucking, breathing and swallowing"--he is just supposed to figure it out. So right now, I offer this problem up--I pray that I can have the patience to be diligent in helping Par learn to eat. We have an occupational therapist/lactation consultant meeting with me possibly tomorrow to help me breastfeed and watch how Par takes his bottle--I pray she will have some answers on how to make all of this a little easier.



We gave our little stinker a bath today--Rusty washed his hair while I scrubbed his little body! In the pictures you may notice that below his chest it sinks in--this is called "Pectus" and is commonly associated (is an effect of) CDH mostly in boys. Because his lungs are small and his diaphragm didn't form correctly in the first place, his breathing draws him in just above the sternum causing the pectus. It may or may not get better as he gets older. There is a corrective surgery he can have later (10-12 years old)because sometimes this can cause breathing issues--but most people have it fixed for cosmetic reasons. We spoke to Dr. Kays about it (along with CDH-he is also proficient in Pectus repairs)-he isn't worried about it at all--he says it probably won't have any sort of effect on Par's breathing. Dr. Kays responded like it was a "nonissue"--so we feel much better now (we started noticing it after his surgery and it was getting more and more obvious). FYI-there are plenty of people who have Pectus and never had CDH--so you may have seen it before--pretty common--1/300 (well pretty common compared to CDH).





Well, the NICU 2 that was SOOOOO empty last week is now filling up fast. We already have been moved--mainly because we have so much stuff and I am there all the time--so they moved us around the corner where we have a little more room--so it is a nice change actually. Par didn't love the move--I don't blame him--they pile everything in his bed and cart him around the room and then make a bunch of noise setting everything back up. Hopefully, our next move will be home.





Speaking of home--mom left with her dad and sisters early this morning and is now sleeping comfortably in her own bed. I can't express how blessed I have been to have her here with me--she is the most loving and caring mother--I hope I can be that for Par. I miss her terribly--and I know Par does,too.

More and more I am starting to think that Par isn't really my baby. It appears that he may be a clone of Rusty. That just makes the most sense. It is really getting to be creepy--each day that goes by, the more Par looks like Rusty. I realize this is completely normal for a child to look like the parents--I just never imagined how similar two people can look with a 32 year age difference.



I haven't seen any of Par's friends or heard any updates lately (because we are not in NICU 3 anymore)--but we continue to pray for them and their precious families. We praise God for using Shands Hospital as an instrument in the healing of these children.

May God continue to bless each one of you. We thank God for today and we look forward to tomorrow--may God grant us patience so we may see His work.

Love, Liz, Rusty & Par