Surgery is over!

After a long wait, Rog and I have been able to see Luke in the cardiac ICU. His surgery went really well and Dr. Cohen was very positive about it. Luke is still completely sedated and breathing with the ventilator. He is also starting to swell like a little pumpkin. But, again, he tried to fight his way out of sedation too soon and the nurse had to give him more morphine. I love that about him!

We are thankful the surgery is over, but would ask for continued prayer for strength for what's to come.

Thank you! I'll continue to keep you posted. I appreciate all of you!!!

New Glenn date

Luke's bi-directional Glenn has been reschedule for Monday, August 13, first case of the day.

Wow, that feels a long way off, but Rog and I are trying to stay busy (and positive!) It helped when we found out Luke got bumped because Dr. Cohen got called in for a heart transplant. We were definitely rejoicing with the family who's baby gets a new heart!

So, now we're in the waiting mode again (and UNpacking mode), but I believe God is in everything, even in the details of when Luke goes in for surgery.

Rog and I will be driving up to Seattle on Sunday night to stay so we can avoid any I-5 craziness on Monday morning. Luke's surgery is at 8am, so we will be checking him in at 6:45am.

We'll keep you updated!

Surgery rescheduled

We got a call at midnight last night from Children's and Dr. Cohen had an emergency case and needed to bump Luke. So we are waiting to hear when is new surgery date is. Rog and I are doing okay, it's a little disappointing, but overall we feel really peaceful. We wanted to let all of you know who are praying and thinking of us!!! I'll keep you posted...

Pre-Op for the Glenn

We had a great day up at Children's on Friday for Luke's pre-op appointments. Everything went smoothly and we are set to head up there Wednesday morning for Luke's surgery. (They bumped us from the 7th to the 8th because of a newborn who needs the slot on Tuesday). We had a great consultation with Dr. Cohen (the surgeon) and feel much more prepared for surgery #2 and came away with some specific prayer requests! He really does think Luke will do great, but this is a tough surgery, probably the toughest of the three. Not necessarily a tough procedure for the surgeon, but a huge physiological change for Luke ... he will have to work hard to adapt to his new physiology. That's why recovery can be pretty tough coming out of this surgery. We are looking at 4-6 days in the ICU, and much of that on the ventilator. Also, we have been prepared for Luke to be really swollen and uncomfortable for several days. Dr. Cohen assures us it will go away, but he will definitely not look like Luke for a little while. It's a tough balance, because they want to keep him as comfortable as possible, but they also don't want him completely sedated because the sooner he starts breathing on his own again, the better. So, although we are ready and know that God's faithfulness and sovereignty are complete, we are definitely anxious and would covet your prayers. Here are some specific requests:

• Please pray for Dr. Cohen, for his health and safety leading up to the surgery and for a steady hand and focused mind. Mostly for God to guide him as he operates on Luke.

• Prayer for Luke's recovery - that he would come of the breathing tube as quickly as possible; that there would be no infections or complications that would keep us in the hospital; that he would be comfortable; for Rog and my strength and endurance

• There is a small, small chance that post-surgery, Luke's pressures in his heart and saturation levels would not be where they need to be and they would have to go back in and adjust some things. Please pray that this Glenn procedure would take perfectly!

• Please pray for wisdom for all the nurses and doctors who come in contact with Luke

We got to see a few familiar faces up at Children's on Friday, and were reminded how thankful we are for that hospital. We know we are in the best hands!

Rog and I thank you so much for your support and prayers and we will definitely keep you posted on Luke's recovery. We look forward to the day we are back at home, but between now and then we praise God that He will be walking us through!

Home from Children's

After 28 nights in two different hospitals, it felt really good to be home. Luke has only spent 3 of his 8 weeks at home! Leaving the hospital, Rog and I experienced mixed emotions. Excitement and relief to be free from bells and buzzers and tubes and wires, but apprehension about managing Luke's care without the help of such wonderful doctors and nurses. We have been trained on how to run Luke's feeding pump, check placement of his NG tube, give medicine and so on, but it is still a little daunting to be on our own. I know that each day will bring more confidence for us to care for this amazing little boy.

Since Luke developed reflux, we also came home with a wedge for him to sleep and feed on. Although he looks a little silly in his wedge, if it keeps the food down, we love it! Our plan is to alternately breastfeed Luke and feed him through his NG tube. He will get a 30 calorie per ounce formula through his tube (breast milk is only 20 calories/ounce).

We started with a syringe pump (used most commonly for IV medication) and he started with getting 50 cc's over a 1 hour period. That's not even 2 ounces and it was hit or miss whether he could keep it down. We watched that syringe empty and prayed that Luke's stomach would hold it. Before and after surgery he had such a hard time putting on ounces. We had rented a hospital scale, so were daily monitoring his progress, or lack thereof. Coming home from the hospital at the beginning of March, Luke weighed in at 6 pounds 12 ounces and it took two weeks for that scale to move upwards at all.

At our first follow-up appointment with Dr. Stefanelli, he convinced us to rent a different pump that could hold more formula and could be programmed for a longer period of time. He really wanted us to stop doing 3 individual feedings through the night and instead give Luke a continuous drip for 10 hours overnight. This would give him the maximum amount of calories, but more important, us all some decent sleep. This new Infinity pump changed everything! With being fed all night, Luke slowly started gaining weight and we didn't have to change the pump out while we were stumbling around in the middle of the night. We propped Luke in his wedge in between us as we slept and Luke slept soundly all night. Rog and I only woke up if the hose got kinked and the pump's alarm went off. Thank you, Dr. S.!!! You are so wise =)

As much as we would have loved to bring Luke home without a feeding tube, it really was a blessing in several ways. One, the sleep factor as I mentioned; two, it was much easier to administer ALL his medication. We could give him his meds through the tube while he was sleeping. He came home on 8 medications (Diuril, Lasix, Reglan, Zantac, Simethicone, Spironolactone, Captopril and Tylenol), so the tube was definitely our friend! The third blessing we experienced (and me especially as the breastfeeding Mom) was the pressure-reliever of knowing he was going to get all his calories, whether he breastfed well or not. I can't say that I simply enjoyed our feeding time together, I did watch the clock and I did worry if he didn't eat very long, but those feelings were definitely softened by knowing he would get enough through the tube.

Roger took another full week off of school when we got home, to help me and Luke get into a rhythm of our days. (Small sidenote: My husband is the most incredible partner. Thank you, Lord, for the gift of a devoted, hands-on, strong, faithful husband.) We didn't go very far when we got home, the Starbucks drive-thru was pretty much the extent of our family outings. =) We were vigilant about keeping Luke healthy post-surgery and pretty much hunkered down besides our doctor's appointments in Tacoma. We didn't mind too much, though. We were home.