update on L*ily's progress

It has been another whirlwind week for us on this journey - a week of more news and more decisions, etc. L*ily and I are still in the hospital. She was born two weeks, two days ago and has now passed her due date of Nov 13. We are still working on feeding issues - this remains the reason we are still here. As I said before, she has two challenges with eating: "organizing" her mouth enough to master the suck-swallow-breath routine needed to eat, and having enough stamina to finish a feeding. She has made great improvement in organizing her mouth and learning to suck properly with the help of a specific nipple for her bottle, occupational therapy every day, me getting better at reading her cues as she eats, and good old fashioned time, patience and practice (just like my piano lessons M*om and D*ad!). She is slowly increasing her stamina for feeding as she grows, gets stronger, and is more productive with sucking - she then uses less energy. This piece (her stamina) is directly related to the low muscle tone she has in her face - she has to work harder than other babies to compensate for this - this is something that is a part of her Trisomy 21 diagnosis but also something that gets better as she again gets more efficient in sucking and gets stronger. She will always have muscle tone issues but she won't always have feeding issues - she will master this eventually. However, the progress has been slow. Because of this, her doctors have decided to reevaluate her progress mid-week (around the 18th) and determine at that point if she is close enough to get out on her own with feedings or if she will need a feeding tube temporarily. If she increases her feeding enough between now and Wednesday, we will be making a plan to go home shortly after that - as soon as she can finish her feedings on her own. If she is not progressing enough at that point, she will have a feeding tube (G-tube) surgically inserted in her stomach and be sent home with this for maybe a month or two or until she can finish oral feedings on her own. If she gets a G-tube, the surgery will likely be the end of this coming week, and then she will need to stay up to another week before leaving.

We are praying and asking you to pray that L*ily increases her feedings this week so that we can both go home within a week and without a feeding tube. We also ask you to pray for D*ave and I as we try to anticipate both possibilities this week. Please also pray for Z*oe. She can verbalize what is happening fairly well, but she is missing Mommy a lot and I am missing her too. This part continues to be the hardest piece of it all for us. Pray for D*ave as he holds things down at home, juggles things with Z and me, works, and tries to see L*ily when he can. Z's Grandma K*athy and Grandpa S*teve have taken her overnight some nights and Grandma J*udy has stayed at our house some nights too so that D*ave can continue working - he has to be at work at 6am, so we have needed to have someone with Z before he leaves. We so appreciate knowing you are out there thinking about us and praying for us - we have seen prayer work already and are asking again for more. We are trying to take each piece of news one step at a time and yet anticipate the possibilities to come. We are so grateful for the excellent care L is receiving and the bonding we are experiencing yet are feeling the strain of being here so long in the process. We are still adjusting to the lifelong diagnosis L*ily has and what this will mean for us as a family and for her in the short and long term. I will update here again in a few days as we see what direction we are going next! In the mean time, here are some more pictures of our beautiful new baby!