Update 5/12/20

My (Alan) goal is to try to do these updates about once a week to let you know where we are.  My prayer is that most of the updates will be short like this update.  That's one of the things we've learned from rounds with the doctors.  Short updates are much easier than long updates.  Long updates mean that things have changed with Chloe.

Chloe's life this week has revolved around weaning her from the IV fluids and transferring her over to straight formula feedings for her to get her nutrients from.  The other goal is for her to start a steady weight gain of 20 grams (about an ounce) a day.  The milestone for her will be to move out of her box and into a crib.  Also, there was some discussion about removing the PICC line if she gets to all formula for her nutrients.

Feeding Chloe has been a delicate dance of amounts and length of feeding.  Too much, too quickly and she spits up.  We finally settled as of last night on about 20 mL of formula fed to her over 2 hours starting every 3 hours (6:00, 9:00, 12:00, etc.).  This has meant that for week 2, Chloe has fluctuated in her weight a bit.  Last night was the first night that she showed the 20 grams of weight gain that they want to see every day.  Please pray that she would continue to feed without spitting up at the end, that she would begin her consistent weight gain of an ounce a day.

To get out of her box, Chloe needs to maintain her body temperature on her own, and have 5 days straight of weight gain.  On Friday, they had rolled the crib out, ready to move her over, when she started spitting up on feedings and losing weight, so the crib rolled back away.   Today was her second straight day of gaining weight (yesterday, she gained a couple of grams, which is technically weight gain), so if she continues to gain, they will move her to a crib on Wednesday or Thursday.

Several days ago, they tried to take her canula out, and put her on room air exclusively, but the CO2 levels in her blood began to rise again, so they put the canula back in.  Yesterday, they took the canula out again, and Chloe's CO2 levels were exactly where they want them to be today, so one less wire for the little girl!!!!  Thank you all so much for praying for this.  Pray that this would stay stable.

Her kidney continues to slowly improve its function, which is also a praise, so pray that her kidney would continue to pick up function and grow and improve.  Her heart is really unchanged from last week.  The PDA still hasn't closed, and so her blood continues to be a good mix.  The PDA should close this week, and so this will be when we see if she will need an early heart surgery.  Pray that her balance between blood to the lungs and blood to the rest of the body would continue to be right.

The PT folks were by last week to try to fit Chloe with splints to begin to correct her club feet.  A frustrated hour later, they gave up.  They ended up putting a special kind of tape to begin pulling her feet into the right direction on along with some foam splints.  The supervisor for the PT folks (AKA the expert) will come by later today or tomorrow to put splints on to keep working on correcting her feet.

In other news, Isaac and Abi are with us now after a couple weeks of being with grandparents.  During the day, friends are watching them so that we can spend the day in the NICU, and then they are eating supper with us and seeing Chloe at night before bedtime in the Ronald McDonald house.  Pray that they would adjust well to this schedule and for exhausted mommy and daddy, that God would give us patience with our energy filled kids!

So to wrap up, please pray that Chloe would stop spitting up, that she would begin to consistently gain weight.  Pray that she would graduate to a crib this week.  Pray that they would be able to remove the PICC line so that she would only be down to the feeding tube and monitor cords.  Pray that the PT specialist would be able to fit her with splints to correct her feet.  Pray that her heart would continue to balance the blood to her lungs and to her body.  Pray for our little family, as we adjust to the new normal this week.