This is Lord's Doing. It is Marvelous in Our Eyes.

Today.
God's letting us take our baby boy home today.
After four and a half months. After 4 weeks in NICU, 15 weeks in PICU, and 5 weeks at OCH. After one CAT scan, two heart caths, one open heart surgery, cardiac arrest for 26 minutes, 2 days on ECMO, a head bleed, 3 seizures, 6 weeks on dialysis, weeks and weeks of being hungry on IV nutrition, an illius, 3 infections, dozens of IV sticks, hundreds of blood gas sticks, 5 weeks of a heart rate over 200 beats per minute, multiple shocks with the crash cart, a trach surgery, a stomach surgery, multiple blood transfusions, and a brain MRI, Luke gets to go home. He gets to ride in a car for the first time, sleep in his own bed, and meet his kitty cats.
This boy that wasn't supposed to make it until 26 weeks gestation. This boy that was supposed to be born months early and seriously underweight. This boy who probably would have to live breathing off of only one lung. This boy who stumped the doctors with his arrhythmia and the physical size of his heart. This boy that showed us that the foolishness of man is the wisdom of God. This boy who thousands of you have prayed for. This boy who God has healed with undeniable miracles over and over. This boy's going home with his mama and daddy.
For real.
For keeps.
Today.
David and I are more ready for this than we've been ready for anything in our lives. Our funding for the Medically Dependent Child Program (MDCP Medicaid) has gone through, but we have one more hoop to jump through. We have to do an "overnight" stay in a nursing home. The closest nursing home that will take vented and trached kids for this purpose is in Tyler. The overnight stay doesn't have to be 24 hours, just from one day to the next - over a midnight. Our plan is to leave Baylor at 8:30 pm and travel via ambulance to the nursing home in Tyler. I'll be with Luke, David will follow with our car, and our night nurse will follow in her car. We'll stay at the nursing home long enough to feed Luke and give him a breathing treatment, then we'll leave there around 12:30 am. David, Luke, and I will ride in our car home to Terrell, with the nurse following us. We expect to arrive home about 2:00am, where my parents will be waiting for us with a clean house and a stocked pantry. We'll get Luke settled, and then try and get a few hours of sleep before the chaos of tomorrow when we will have our disposable health care supplies and some of our permanent equipment delivered and we have to figure out where to put it all.
We almost had a crisis yesterday. Our care coordinator came up and told me that at this late point in the game, our insurance, who has to pay for the 30 day gap in home health care services before MDCP picks it up, decided that they didn't want to contract with the nursing company we chose (we chose them 5 weeks ago, and they're just now saying this). So they wanted us to go with a company they chose, and keep Luke in the hospital for a few more days while they lined up our nursing care. I said absolutely not. Our care coordinator did some magic on the phone, talked to somebody's boss's boss, and got it worked out. So we get to keep our fantastic nursing company, and we still get to go home tonight. It was just really scary and frustrating for a few hours yesterday. Satan trying to spoil things.
I also want to tell you about some more happy news. For the last 10 days or so, the pulminologist has had Luke do something called trach collar trials. During these trials we take Luke off the ventilator for a period of time (a little scary in itself) and allow him to begin to learn to breathe without it. Instead, attached to his trach is a collar which delivers oxygen and warm moist air through his trach to his airway. Luke has been doing fantastic with these trials. They started him at 15 minutes. He is now up to 1 hour long trials twice a day. Luke's oxygen saturation needs to stay between 65 and 90%, with the target range between 75 and 85%. On the ventilator, Luke has pretty well been staying between 67 and 73%. During the collar trials he's been consistently satting in the 75-90% range. This is splendid news because it means that Luke's airways are getting much stronger and he won't be on the ventilator for very much longer. The nurse practitioner said that they want to wean him off slowly because its respiratory disease season, and he's still a little small for his age (Although he weighed in at 11 lbs. 13. oz yesterday - that's almost a 3 lb. gain since moving to Baylor 5 weeks ago!). We are getting the equipment in to continue these trials at home.
Last night I gave him his bath during one of these trials, which was awesome because he wasn't hooked up to the vent, and I didn't have to deal with hoses being attached to his throat (we used a mini humidifier called an HME instead of the trach collar for the bath). And I got to hold him over my shoulder chest to chest, which I've only done once before. Blissful for me. Luke hated it. :) Maybe we'll do some more of that soon, and he'll get used to it.
Last note I told you that I hoped my next note would be an announcement that we're taking Luke home. It is!!! Thank you all for your continued prayers. Please pray that our discharge, nursing home stay, and travel home all go safely and smoothly. Also, we need your prayers that our insurance approves the monthly injection Luke needs to protect him from RSV - we want to keep Luke out of the hospital until his next surgery planned in March. We need to keep him well, he needs these injections, and they cost $2,000 a pop without insurance. UniCare NEEDS to approve us. Thanks for your prayers. We love you.

This is the day the Lord has made. Let us rejoice and be glad in it.

Rachael, David, and Luke

Luke's 4th Month

photos courtesy of Diana

Tuesday

This is the day that the LORD has made. Let us rejoice and be glad in it. Psalms 118:24

Monday

Just so you know, we'll be leaving Baylor in the dust in just a little more than 24 hours. Just so you know.

Growin' Boy

photos courtesy of proud aunt Rebekah!

Friday

is getting the house ready for Luke to come home. Unless something changes he'll sleep in his own bed on Wednesday :)

Thursday

had five sessions today, picked up her car with a now very -unbroken windshield, a trip to the Terrell Zoo (aka Walmart) and is now resting before her last 24-hour room-in with Luke which starts tomorrow at 10 am. And is also sad because I can'...t seem to get my computer to play the last two episodes of LOST that we missed when Luke was born. Oh well.

Wednesday

All of Luke's at home medical equipment arrived today. It felt like Christmas...even better since this is the stuff that's going to allow us to take him home. Speaking of home... we only have 7 days!

Monday

We have a TENTATIVE discharge date: Drum roll please.....Tuesday, Sept 29. That's 8 DAYS in case you were wondering!!!!

(well technically it's 7 days now since I am posting this a day late-sorry Rachael!)

Sunday

Is having a lock-in with Luke tonight, but instead of popcorn, cards, and scavenger hunts, our list of planned activities include breathing treatments, meds, and Luke's all-time favorite: a bath!

Thursday

Just got Luke approved for the Medically Dependent Child Program (MDCP)! We have a few more tasks, but we're measuring our time left at Baylor in a few weeks, maybe even days! Praising God with tears for his faithfulness in paving the way for us.

Life at Our Children's House at Baylor

Well, we've now been at OCH for 3 and a half weeks. I waited until today to post a new note because we had our Family Care Conference yesterday, and I thought we might get a discharge date. I was wrong.
Quite a bit has happened in the last 2 weeks. First, an update on Luke's health. Early last week David and I started worrying because Luke was requiring more and more oxygen to keep his oxygen saturation ("sats" for short) at an acceptable level. He would alarm multiple times in the night and throughout the day, telling us he needed more oxygen. The pulminologist, Dr. Gelfand decided that his lungs or airways were not causing the problem, and was concerned that Luke might be outgrowing his shunt. (The BT shunt was placed during Luke's heart surgery in June. It is expected that Luke will outgrow the shunt, but we are hoping to hold out until March when Luke will get his next surgery.) I was worried that we would have to do Luke's second heart surgery earlier than expected, and before we even get to take him home for the first time. Dr. Gelfand decided that he wanted an echocardiogram ("echo" for short) done on Luke as soon as possible, but it was the middle of the night, and there are no cardiologists at Baylor to read it at 1:00am. So he called Dr. Chemelli, one of the cardiac intensivists at Medical City who worked closely with us and Luke, to see if they could do an echo there. Dr. Chemelli thought that Luke's oxygen problem could be solved by giving him a blood transfusion. Only 4 air molecules can attach to a red blood cell, so no matter how much oxygen you give Luke, if he's low on blood, he has no way to transport the oxygen to the rest of his body. Luke is just now approaching the age where he can manufacture his own blood (a process probably delayed by his earlier blood transfusions), and they hadn't replaced any of the blood they take when they do blood tests. So we gave Luke a blood transfusion the next morning and viola! his sats went up. Praise God for intelligent and intuitive doctors. We got an echo, just in case, and the echo showed that Luke's heart is working well, and he's not outgrowing his shunt yet.
Second, Luke got a brain MRI on Friday. The neurologist here at Baylor ordered the test because she knew that Luke had a head bleed and seizure activity after being on the heart lung machine after his surgery. Luke does have some brain damage from that trauma that showed up on the MRI, but the doctor explained that he is not showing any outward signs of damage. He said that babies typically manifest signs of this type of damage between 4-6 months. Since Luke is just now 4 months old, we will watch his development closely to make sure he doesn't have any problems, and they will follow up later. David and I feel a little scared because the type of brain damage Luke has, if substantial, can be linked to Cerebral Palsy. Folks, we can't take another hit. We can't do Cerebral Palsy. It looks like Luke's brain is fine, but please pray that he can develop normally in the areas of his motor skills and intelligence.
So the big question, when are we going home? 3 requirements: 1) Luke has to grow an average of 0.7 to 1 oz per day. He now weighs a whopping 10 lbs. 15 oz! He is meeting this requirement. 2) David and I have to complete Baylor's entire training program. We've worked hard, and have completed all of our classes. The only requirement we have left for this portion is our "rooming in". David has to complete one, and I have to complete two 24-hour periods where we stay with Luke and care for him around the clock: give him his breathing treatments, medications, feeds, trach care, and regular baby stuff like diaper changes and baths. David does his rooming in tomorrow, and my first one is scheduled for Sunday. Pray that we do everything well enough to be "checked" off. I can't do my second rooming in until we get our home medical equipment delivered, see #3. 3) We've made some headway on convincing UniCare that they need to pay for the 30 day gap in Luke's home health care that MDCP (medicaid) won't pay for. But UniCare wants to be certain that we've secured MDCP, and that they will pick up the cost after the initial 30 day gap. We've turned in our application and had our interview for MDCP, and we've been told by our social worker that we definitely will qualify and be accepted to the program, we just don't know how long it will take to get the official approval. Until we do, we're stuck here. Could be days. Could be weeks. Lord, please help us, it might even could take months. Folks, Luke's Mama cannot do this for months. Sometimes, I don't even think I can be here another hour. But Christ sustains me. He is my portion and rock. We can't get out of here until he works it out. Please pray that he works it out quickly. I'm literally at the end of my rope.
Baylor's not been all bad though. I realized today that since I'm staying up here with Luke at the hospital, he is my focus nearly all the time. Luke doesn't have to compete with laundry, dishes, vacuuming, or cooking for my time. Today I spent a solid hour playing with him, singing, and reading to him. I'd probably do those things with him if we were home, but would I really devote such undivided time and energy to him? It was such a sweet time today to see him smile and enjoy my attention. Sometimes God gives you a refreshing rain cloud in the middle of a drought (for those of you not from New Mexico - switch that: God gives us a patch of blue sky during the rain).
Keep praying for us everyone. We've come SO FAR. But we're not home yet. It's easy for us to get angry and to start despairing because so many are holding us back from taking our precious son home. We need your prayers. For those of you who have visited us, we really appreciate it. Baylor is a lonely place. You raise our spirits. Thanks for your prayers. Maybe in the next note, I'll get to announce that we're going home. Please God.

Blessings,
Rachael, David, and Luke

Starting Early

Friday

Waiting for David and Luke to get back from Medical City where Luke had a brain MRI this morning. They wanted to check him out finally after his head bleed and seizures that he had on the heart lung machine right after his surgery. No results yet. Happy 4 month birthday baby boy!

Luke and Gigi

Wednesday

Had a wild ride with Luke today. It turned out that he needed more blood. So they gave him a blood transfusion this morning, and now his oxygen saturations are holding in a completely acceptable range without too much oxygen. We got an echocardiogram today just in case, we're still waiting on Dr. Kao's interpretation of the results.

Tuesday

sick of being lonely in this place

Monday

***Update***

Luke's oxygen saturation is better. He's still requiring quite a bit of oxygen, and they've started him on antibiotics. He's still quite a bit more agitated and fussy than normal. He's doing a little better just being left alone with his plug and and his rain forest toy.

Luke's having a tough time keeping his oxygen saturation at an adequate level. He's requiring quite a bit of oxygen. They're doing cultures to rule out any bacterial or viral infections. Bottom line, we need to get out of the hospital and get him home so he's not exposed to any more infections. Lord, get us home!

Tuesday

Just got approved for health insurance once my COBRA expires this month. What a praise!!!

*****
Just had to post on what a great day Luke is having. The last four days in the morning his oxygen saturation (sats) haven't been good. Today his sats are awesome! David and I learned all about how to give his respiratory treatments, and we're feeling confident with that. Luke and I played, sang, and I held him for an hour. Now he's resting so good. Praise God for easy days!