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| Homecoming Day! With Isaac's amazing primary nurse, Christine |
It was so wonderful to bring Isaac home from the NICU after a loooooooong 95 days.
95 days of scary unknowns and frustrating heartache, of surgery and setbacks, of leaps and hangups, of tears and interstate, of trust and trial. Indeed, long is an understatement. But, God is good. And through it all, He was and still is our strength and our fortress.
As many of you may remember, Isaac was born weighing 3lbs. 5oz. He came home at about 7 1/2lbs and is now almost 9lbs.! Yay! He's doing wonderfully being at home - thriving, in fact. He's outgrown all his newborn clothes and is learning to grasp things. He LOVES to be around all his siblings with all their noise and smiles and laughter and life. Their faces just light up when he smiles at them! The kids all like taking turns holding Isaac and playing with him. The 2 year old, Daniel, whenever he can tell that Isaac is about to cry, says, "Baby sad" and makes a frowning face. 😆 Isaac brings so much joy to our family - a blessing for sure!
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| La di da di everybody |
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| It's tiring being a baby |
In the beginning, when Isaac first came home, it was lots of alarms on the phone to remind me of every single thing that needed to be done for Isaac. Now, thankfully, I've gotten in the hang of when things need to happen and how to time things most efficiently, for the most part. I still need an alarm or two just so I don't forget, but we're getting in a decent routine, I think.
What most makes up the actual busyness is the amount of time things take to be done, as well as what kind of things need to be done and how many things need to be done. Some days the busyness is a little less, and some days it's overwhelming.
Just as a little glimpse, I'll tell you some things that need to be done or things that we deal with on a regular basis. (It's okay if you might not know what are some of the things I'm talking about....maybe later.) ;)
Make the milk, warm the milk, empty milk bag, rinse bag, prime rinse water through line, empty bag, new milk in bag, prime milk through line, pause priming to attach extension and insert medicine into med-port, continue priming to end of line, adjust feed settings(based on the time of day because its 8ml/hour for 12 hours and 9ml/hour for 12 hours instead of 8.5ml/hour for 24 hours because the pump doesn't have a .5ml option), attach line to G-tube button on tummy, remember to unclamp line(important or nothing flows), run pump.
Phew.
At least we only have to do that 2 or 3 times a day. And that's just the milk.
Now, I'm going to just list the items needed for changing Isaac's TPN(central line) once a day.
- 2 lines, one with a blue filter(Lipids), one with a white filter(TPN), and remember, white doesn't go with white
- a Y extension port
- 3 needles
- bag of TPN
- bag of lipids
- 2 vials of multivitamins to be injected into TPN bag, 1ml(pink lid) and 4ml(blue lid)
- empty lure-lock syringe to be filled with multivitamins
- syringe of iron to be injected into TPN
- syringe of Carnitor(I don't know) to be injected into TPN
- 10ml syringe of saline
- 6ml syringe of Heparin(but only use 3ml)
- 4 C batteries
- 2 pumps
- a TON of alcohol wipes(because germs)
and a partridge in a pear tree. 🎶
Not to brag, but I've gotten that whole thing down to a SCIENCE of 25 minutes, solid.
No big deal 😏
Our life of using alcohol wipes is kind of like that line in O Brother, Where Art Thou - "Well ain't this place a geographical oddity...2 weeks from everywhere." Ours is "30 seconds for everything".
Three pumps that can beep for multiple reasons at any given time. You know how new moms tend to hear (or think they hear) a baby crying no matter where they are? Yeah, mine is beeping....I think I hear beeping wherever I go...in fact, just a minute....ok, nope, false alarm, we're good.
And that thing I was going to do(whatever it was), yeah I'm not gonna do it anymore, or at least not today, or at least not till after I change this leaking poop bag, for the second time today - that will only take 15 minutes. Thank God I'm in the kidney ultrasound room where they have a box of gloves - yesssssssssssssssss.
ANYWAY, Isaac is doing very well medically. Weight gain and growth is good. All his ins and outs and lines and bags and tubes are all functioning well.
He just saw the urology surgeon, who was one of the surgeons during Isaac's first surgery at just a few days old. He said everything is looking good, and Isaac's kidneys look good(hence the ultrasound), and the next surgery should be in early December. That surgery will be to put Isaac's bladder into a sphere shape(as it should be), create a hole for good urine drainage, and put the bladder inside his abdomen as much as possible. Hopefully Isaac will have enough "real estate" to close back over the bladder and sew shut, but if it's a little lacking, the specialty surgeon will be there to place a sort of mesh over top of the opening that's left, which mimics the skin and basically causes skin to grow over the mesh and close up the opening.
Also, the orthopedic surgeon will be there as well to suture together Isaac's pelvis - right now the two halves are not even attached - and the surgeon will also make incisions in the hip bones to turn them facing more inward, since right now they face straight forward. So basically, they'll just fix his open butterfly situation and make it normal. This will also enable the urologist to put the bladder more inside the abdomen.
Isaac will need to be in a cast for the pelvis situation after surgery for about 4-6 weeks. Hopefully, the hospital stay after surgery will only be 2-3 weeks, depending. Let's just hope he's out by Christmas!
So please continue to pray for us. I know so many of you do, and it's so great to hear of some of your little ones remembering us in prayer!
And thank you to those who continue to so generously bless us with your encouraging words, your time and effort, and even your giving.
That's all for now, except....
I just have to say that my husband, Stephan, has been the most amazing husband and father through everything. He cooks most nights, takes the kids where they need to go, works 6 days a week, and still has an amazing attitude through everything, including putting up with me. ;) He has always been awesome, but has stepped up even more these last few months - the hardest of our lives - and loved his family more deeply than ever before, through dedication to his role of providing and by thinking of us in everything. Thanks babe. 💗
