Luke is One Week Old!

Originally posted May 18, 2009

Wanted to celebrate with everyone that our little champion has made it through the first week of life.
We've had some really rough moments and some moments of triumph. All in all, we're just really thankful that Luke is doing as well as he is. I know that this is because of all the prayers going up for him every day all around the world.
Then night Luke was born, he was taken directly to NICU (That stands for Neonatal Intensive Care Unit) and examined by the neonatologist and Dr. Kao, our beloved cardiologist. They immediately decided to put Luke on a medication called Prostin which will keep open the Patent Ductus Arteriouis. This is an artery that normally closes about 24 hours after birth, but in Luke's case, we need to keep it open because it is the only way that we can get blood to flow to his lungs to get oxygenated. This medication makes Luke very sleepy, so he spends about 98% of his time with his eyes closed. When he does open his eyes, it's just a little slit, so we can't really even see what color they are.
Another side effect of this medication is that it tends to cause him to have apneic spells. This is like when people have sleep apnea--Luke just forgets to breathe sometimes. As a result, the doctors constantly monitor his respiration rate, heart rate, and oxygen saturation. It also has caused Luke to need a respirator and a little extra oxygen. Over the past week, they attempted to take him off the respirator (because he was doing very well) and put him on a device called a CPAP (no idea what that stands for). This is a less invasive way to help him breathe because it goes in his nose rather than down his throat. He was on the CPAP (and another version called the SiPAP) for about a day and a half before the doctor put him back on the ventilator. She said that Luke was just spending too much energy trying to breathe and was tiring out. We need him to rest and grow and get stronger, not wear out. So though going back on the respirator is a step back, it's really going to be better for him in the long run.
The scaireist thing that happened this week was as a result of another side effect of the Prostin. On Thursday my mom and I came back in from lunch (David had gone to the hotel for a much needed rest) and found a neonatologist and two nurses at his bedside and his alarms were going off. After a few minutes of watching, horrified and terrified, the doctor explained to me that his heart rate had skyrocketed to over 200 bpm and was erratic. He asked me to wait outside while they stabilized him. Without David, that was the scariest walk down a halway that I ever took. About half an hour later the doctor came out and told us that they had stabliized him by giving him a different medication to counteract the side effect of the Prostin. His heart rate has been steady since then.
Luke is fed through a feeding tube, I'm not able to feed him directly. Instead, I pump and they feed him my milk through his tube (TMI for some of you, sorry). (Doing this every two hours admittedly makes me feel a little like a dairy cow.) With the feeding tube, they can check how much Luke has absorbed during each feeding. Sometimes he absorbes alot, but more often than not, he absorbs about half or less of what he's been given. We need him to absorb more milk to give him more calories to make him grow strong and big to get ready for surgery.
When Luke was born, they put two lines in his belly button - one for medication to go in, one for blood to get out. While these lines were in, we weren't able to change his diaper or hold him. Day before yesterday they attempted to put a PIC line in (again, I can't tell you what it stands for). The doctor was not able to do it - Luke's veins are so fragile that they couldn't get the catheter threaded through. But yesterday a neonatologist very experienced with the procedure was successful. The PIC line is a little like an IV, but the tube is threaded through his veins and stops next to his heart. This allows medication to go in, but not blood to go out. So Luke has to be stuck for his blood work every day (poor little guy). I was very worried about the procedure because it's pretty painful, and they decided it would be best for Luke's breathing not to sedate him or use anesthetic. I was a mess thinking about my tiny one going through such pain. But on the good side, this line is easier to maintain, and so heaven happened last night. I GOT TO HOLD HIM! For the first time for a whole hour while he was receiving his feeding, I got to sit in a rocker in his room and hold him close. It was blissful, and I think both David and I cried. It was a long wait to finally get to hold him close, kiss him, and smell him, and rock him and sing to him. If Luke has a good evening, David might get a turn to hold him tonight. We'll see.
David and I are doing really well, all things considered. Finally getting to hold Luke really boosted all of our spirits. Luke slept so peacefully and absorbed more food last night than he ever has. We're staying at a hotel just a few minutes north of the hospital, so we can get to the hospital in record time if necessary. I'm coming down off of pregnancy hormones, so I'm quite emotional at times, but David has been golden. He's been so considerate of my post-op pain and varied emotions. I was honestly a little worried about how my love for David would change when our son was born. I didn't need to worry. My love for both David and Luke has increased exponentially. Their love for me and your prayers are what get me through each day (and maybe a couple of pain pills).
So what's next? Luke will get an echocardiogram (sonogram of his heart) on Wednesday, and we should be able to discuss the results with his cardiologist a day or two later. This ECG will let us know if Luke is getting any blood through his Pulmonary Artery. If he is, we may be able to put off surgery for a little longer, allowing him to grow and become stronger. If not, we may be looking at the first of three surgeries sooner rather than later. A heart transplant is still an option, but we don't know how likely that option is. For those of you who want to pray specifically, pray that God's will is done with his Pulminary Artery and that the doctors will decide to operate at the perfect time.
I just wanted spend some time going into more detail about Luke's condition and treatment, for those of you who are interested. As always, we so appreciate your prayers, thoughts, and encouragement. We love you.

Blessings,
Rachael & David