Thursday, July 30, 2009


having a sleepover at the hospital with Luke!

Tuesday, July 28, 2009


Waiting to go back into Luke's room. They're taking his dialysis catheter out today. No more dialysis EVER!!!

Saturday, July 25, 2009

We Need Your Prayers for Another Miracle

Luke doesn't give us a chance to catch our breath. It seems like as soon as we get a chance to catch our breath something else happens. We need your prayers for another miracle folks.
Last Thursday, the docs attempted to take Luke's breathing tube out to see if he could breathe on his own. He only made it a few minutes before they had to re-intaibate him. They told us not to worry, Luke just simply wasn't ready to go on his own yet, but we would try it again this week. The doctor on call this week was shadowing the doctor on call last week, and was present for Luke's attempted extibation. He had a hunch that something more was going on with Luke than a simple, "he's not ready." So yesterday he sent Luke down to the OR where they put him under anesthesia and took out the breathing tube. While he was still asleep and breathing on his own, they dropped a scope down his airway to take some pictures of what was happening down there. They discovered that Luke's left bronchus is "floppy" (the highly technical medical term they used). It closes when it doesn't have the positive pressure from his ventilator. The bronchial tubes are cartilage - like your ear or your nose. In very young babies, the cartilage of of the bronchial tubes has not hardened like it has in adults - making it more "floppy". So they re-intibated Luke and brought him back to the PICU.
We are basically faced with two options. 1) They could do a tracheostomy. They would cut a hole in Luke's throat and insert a permanent breathing tube in the hole. Since Luke needs the positive pressure support of a ventilator, they would hook that up to his trach and he would go home on a ventilator. It's extremely difficult for a child to learn to eat with a trach. Since Luke never has learned to eat in the first place, that makes it even more difficult. So, we are also looking at them putting in a gastrostomy tube (or G-tube). This would be a permanent catheter inserted into his stomach where he would receive breast milk for as long as he needs the ventilator/trach. It is difficult to estimate how long Luke will need the trach while his bronchial tubes grow and strengthen and harden. Likely he will need it until sometime between his second surgery (at 9 months) and third surgery (at three years). That's a big time window, and we're looking at several months to three years.
Option 2) is we could keep him in the hospital on hospital ventilation support until he can breathe on his own, which again would be several months to multiple years, there's just no way to tell. Needless to say this isn't really an option for us. We have to take him home.
Last night, I admit, I lost faith. I despaired. Maintaining a trach is a huge job. You have to clean it, suction it, and change it. Plus, Luke will constantly be attached to his ventilator. Though it's supposedly only the size of a laptop, we will have to haul it and all his back-up trach accessories everywhere we go. We would only be able to leave Luke with a caretaker who has undergone extensive training on how to care for his special needs (that's assuming I could ever let him out of my sight). Because Luke will still be on the ventilator, he still won't be able to make sound - no crying to alert mom and dad that something's wrong; no cooing and laughing when we play. Also, no swimming or submerging in water. I think the most heartbreaking for me is that it precludes nursing. I've gotten through countless tedious pumping sessions by thinking about the time when I would finally get to hold him to me and bond with him while he nursed. The death of yet another one of my hopes. We've buried and grieved for so many.
Last night I cried and cried. I doubted. I wondered how we will take care of such a special needs child. I worried about screwing up and that screw up being lethal to our child. I think that this is such a huge mental and emotional hurdle for me because we were ready for an extended stay in the hospital, but the expectation was that when we went home, we would leave this nightmare behind us as we prepared for round two at 9 months. Now it looks like this nightmare's gong to follow us home. Before last night I knew I was going to struggle to find the energy to do normal mommy things after staying so long at the hospital - how in the world am I going to find the extra energy to take care of a baby with a trach, a ventilator, and a G-tube without the everyday little gifts of joy that other mommies get like hearing her baby coo or cradling him at her breast? You think taking your first baby home for the first time under normal circumstances is daunting - lets add a trach and a ventilator...
It may be selfish, but I really don't want to do this. I'm DREADING doing this. I don't know if I CAN do this. I hope it's not too much to ask for a little bigger sense of normalcy, because I'm going to ask. I want Luke to have a more normal upbringing. I want him to experience pleasure in tasting his food. I want him to learn to walk without having tubes attached to his neck. Selfishly, I want to eventually be able to leave Luke with a sitter and go on a date with my husband again. I don't want to have to cry as Luke struggles and I have to hold him down to change out his trach tube. I want to get some sleep instead of lying wakeful because I'm afraid Luke will get into respiratory distress without me hearing that he's in trouble. No this is not a life or death thing, but it certainly is a quality of life issue - for both Luke and his parents.
Folks, when Luke was in the NICU, you prayed that Luke would be able to use his left lung. He started moving air through that lung a week later. You prayed that his heart rate would slow, and a few days later he went into the cath lab and came out with a brand new (and perfect!) heart rhythm. Please stand with me and ask God for another miracle. Nothing is too hard for him. A collapsing airway is not harder for him than a collapsed lung. We are going to wait two weeks and repeat the scope procedure to see if anything has changed. They are not expecting it to change and are fully expecting that they will do a tracheostomy on my son at that time. Wouldn't it be fantastic if God stumped them again?? If in two weeks they walk out of the OR and say, "We can't believe this, but his airway stays open!" My faith has been renewed. Dr. Kao made the call to wait two more weeks before doing the trach, and I believe it happened that way specifically so that we could stand and be amazed once again at God's work in Luke's life.
We ask that you pray once again. Please pray that Luke will not need a tracheostomy. If God decides that he does need it and we need to go that route, please pray that David and I will have the strength and the endurance to handle Luke's care. I admit. I'm tired. I've had it. I don't think I can take one more thing. I need your prayers for my son and for me. Thank you for your faithfulness in prayer. Thank God for his faithfulness and mercy in all things.
We pray that you are blessed as we are.
Rachael & David

Thursday, July 23, 2009


Luke just came back from the OR. His left bronchial is definitely collapsing without pressure support from the ventilator. We're a long way away from extabating. We don't have a plan of action yet, but it is likely that he will need a tracheostomy to go home.

Tuesday, July 21, 2009

Tuesday and Pictures!

Just got brave and trimmed her baby's nails for the first time. He slept through the whole thing, and no nicks! Success!

Luke with Daddy

Luke with Mommy

Luke and his proud aunt and uncle, Rachel and Blake

*thanks for letting me steal your pics Rachel!*

Monday, July 20, 2009


Luke's heart rate has been stable for a week now. They've moved up to feeding him milk instead of Pedialite. Luke's little tummy is keeping everything down very well so far. He's been on his dialysis vacation for four days now, and things are going well. We're hoping to try and extabate again Friday at the earliest. Luke probably has another infection, and they've started him on antibiotics.

Sunday, July 19, 2009


They started giving him 1 mL an hour of Pedialite. Pray that he can digest it everyone! We need that little panza to work!

Friday, July 17, 2009


They tried extabating Luke today, but the doc said that he just isn't ready - he can't sustain the oxygen level he needs breathing on his own yet. So they re-intabated him to give him a chance to get stronger. We're disappointed, but still very glad that his heart continues to beat a normal rate and rhythm.

*sorry I posted this a day late*

Wednesday, July 15, 2009


Heart rate has been in the 120s (only raising to the 160s when he gets REALLY mad, then back down again) for 50 hours now. We are hearing rumors about extabation (taking him off the ventilator) tomorrow. What are we going to do with two good days in a row?? Just sing praises.

Tuesday, July 14, 2009


Praise God!
Heart rate still in the 120s
Waiting on a report of stomach issues
(summarized by Clarissa)

My soul glorifies the Lord
47and my spirit rejoices in God my Savior,
48for he has been mindful
of the humble state of his servant.
From now on all generations will call me blessed,
49for the Mighty One has done great things for me—
holy is his name.
50His mercy extends to those who fear him,
from generation to generation.
51He has performed mighty deeds with his arm;
he has scattered those who are proud in their inmost thoughts.
52He has brought down rulers from their thrones
but has lifted up the humble.
53He has filled the hungry with good things
but has sent the rich away empty.
54He has helped his servant Israel,
remembering to be merciful
55to Abraham and his descendants forever,
even as he said to our fathers.
Luke 1:46-55

Monday, July 13, 2009

Post Second Heart Cath

It's been an incredibly stressful and emotional day today. I apologize in advance for the length of this note -- there's a lot to be scared about, a lot to be thankful for, and a lot we need prayer for -- as well as my lack of eloquence as I pound out this message.
My last note explained the three options we had for attempting to lower Luke's heart rate. The Amioderone and Esmolol combo continues to be futile, though they continue to give him maximum doses of the Amione and high doses of Esmolol. This past weekend they attempted to feed Luke very small amounts of Pedialite to see if he could digest and absorb something. It did not go well. Instead of digesting the Pedialite, the liquid just sat in his intestines and his belly became distended again. So they have not attempted the Flecanide. However, our day doc over the weekend (Dr. Meyer) suggested that we try a medication called Dejoxin. When Luke was about a week old, his heart rate spiked into the 220s bpm. They gave him Dejoxin to help control this arrhythmia. That arrhythmia was of a different type than the one he's been in since his surgery, but we know that he is responsive to the drug Dejoxin. The Dej was started yesterday about 2:00. We were told it could take up to several days to know if it would affect his arrhythmia.
Last night we had one of the coolest experiences since the start of our stay here at Medical City. Dr. Meyer is a doctor we've gotten to know a little bit over the last several weeks. He is an ACU alumni, and we've connected over that. Last night before Dr. Meyer went home, he came into our room and in his "doctor voice" told us and the nurse that we were "going to pray for this baby." So Dr. Meyer, our nurse Kelly, and David and I all laid hands on Luke while Dr. Meyer prayed, even using medical terms, acknowledging that God knows how to return Luke's heart to a "normal sinus rhythm" and asking him to do so by whatever means necessary. I was overwhelmed with emotion to hear one of Luke's doctors call on the name of the Lord on his behalf.
This morning, Luke's case was again presented during the hospital's weekly cardiology conference. All the medical professionals that attended this morning (including Dr. Kao and Dr. Mendeloff) agreed that they should perform another heart catheterization. (For those of you just tuning in, that is a procedure in which a tiny catheter or catheters are inserted into an artery or vein in the groin and threaded up to his heart. The catheters are then used to explore and measure inside the heart, including rhythms and pressures.) I was informed of this decision about lunch time today, and they started getting Luke ready to take him down to the cath lab about 1:30. Not a lot of time for mamma to get mentally or emotionally prepared. David had a full and hectic day at work today, so he rushed up here as soon as he could.
The cath took about two hours. My parents have been here on a visit for the weekend, and they waited with us. Dr. Kort came out and told us that the cath went very well. They discovered that Luke's profusion (blood flow out to the body) is good. His pressures are good. They didn't find anything different than they expected as far as the heart rhythm. They did deduce that his profusion will work even better if they give him a higher concentration of oxygen through his ventilator. Also due to Dr. Kort poking the catheter around in his heart for a couple hours caused Luke's heart rate to go down to the 130s. He told us that he expected this rate to be only temporary.
Just a few minutes after Luke got back up to his room from being in the OR, David and I went into our "Family Conference." This was a meeting with pretty much everyone working with Luke: mom and dad, Dr. Mendeloff and his nurse practitioner, Dr. Kao, the cardiac intensivist (regular day doc, her name's Dr. Tia), nurse manager, and Luke's social worker. We all talked together about the plans they have for Luke. Basically for this meeting we got that everyone hopes Luke's heart rate will stay put (130s). If it doesn't, we'll go ahead and try the Flecanide, even though he hasn't been able to digest the Pedialite. If that doesn't work, we have no other option than to do the EP/Oblation study (see previous note for explanation). We talked about some other things, including that Luke is going to undergo a test to explore what's going on with his intestines probably tomorrow, then we ended the meeting. When we got back to Luke's room, Dr. Tia and Dr. Kao where hanging around Luke's bed, and Luke's heart rate was in the 110s. They had gotten and EKG, and discovered that this heart rate was another kind of arrhythmia. His atrium was beating at a different rate than his ventricle and only 1 in 2 beats were showing up on the monitor. His real heart rate was back above 200.
After a lot of discussion, Dr. Kao decided that they should shock him (crash cart...the whole 9 yards) to see if they could get him out of that rhythm. It took awhile to set the whole thing up so they could monitor him via EKG during the whole process. They sent us to sit just outside the door to watch through the window as they shocked my infant son. It wasn't quite so dramatic as a scene from ER, but I cried through the whole thing. David and I always feel 10 times better when Dr. Kao's in the room watching over Luke.
After several more minutes, Dr. Kao came out and told us that Luke's heart had settled into a normal sinus rhythm in the 110s. Top and bottom of his heart are beating at the same rate. It's a normal, regular, acceptable heart rate. David and I are praying that we just received our miracle. We didn't know what it would take, didn't really care, prayed for God to do whatever was necessary. Right now it looks like it took some poking around and one big shock. Dr. Kao told us to expect that Luke's heart rate will likely creep up to the 130s-140s (and hopefully stop creeping there) as Luke comes out of sedation and recovers from the cath. As I'm writing this, Luke's heart rate is in the 120s. His blood pressure and profusion measures to the top and bottom of his body are on the lower end of acceptable, trending upwards. A few minutes ago Luke's blood pressure dropped, so they took him off the Esmolol, and it returned to fairly normal. Dr. Stromberg (night doc) just came in and told us that the Amioderone has been doing what it's supposed to do, and if we continue him on the Amioderone, we should be able to maintain this rhythm. David and I are struggling not to get over excited. Our official position is "cautiously optimistic".
So, right now, as the tears flow, it looks like we got our miracle. God used the heart cath as the tool to lower his heart rate. Folks, it wasn't designed to do that. It wasn't supposed to lower his heart rate - we didn't even know to hope that it could do that. God continues to amazes, shock, and delight us with his answers. You as our family and friends continue to be faithful in prayer, and God continues to be faithful in his provision. Let it be said that GOD IS FAITHFUL. GOD IS AWESOME. GOD HEARS THE PRAYERS OF THE RIGHTEOUS. And GOD IS GOOD ALL THE TIME. I can say "all the time" because I've been through hell as well as the highs. It is my wish that all hearts belonging to the eyes that read this turn to YHWH, the God of Miracles. Even if this is a temporary reprieve from the outrageous rhythm we've been at for four weeks, God is still worthy of all honor and praise.
Thank you for your prayers. We ask that you pray fervently that Luke's heart rhythm would stay put in this beautiful rhythm and rate. We ask that you join us in praising God for his faithfulness and mercy.
Blessings and Love,
Rachael & David

Luke is Two Months Old!

photos courtesy of Diana Trichitti


Docs decided during cardiac conference this morning that Luke needs another heart cath to see if they can see anything to hint them towards a correction for his heart rate. They took him to the cath lab a little after 2:00 this afternoon. Waiting... and praying that a solution presents itself during this procedure.


Started the Dejoxin at about 2:00 this afternoon. We don't really know how long we have to wait before we know if it is helping, up to a couple of days. Nothing glaringly wrong with Luke's intestines on preliminary x-rays, need to do a more in depth study. Pray that the meeting of the minds (all Luke's docs + nurse + us) at 4:00 tomorrow will come up with some good ideas for lowering his heart rate.

Sunday, July 12, 2009


Amioderone and Esmelol aren't working. Not keeping the Pedialite down, so we can't give him Flecanide. Day doc today came up with a new idea of giving him a medication called Dejoxin that Luke responded to when used for a different arrhythmia problem back in NICU. We'll try that tomorrow. We have high hopes for Dejoxin.

Friday, July 10, 2009

Call to Prayer

As always, we are so grateful for the prayers you continually send up to the Father for Luke, David, and myself. Several weeks ago, before Luke's first surgery, we asked you to pray specifically for a miracle to happen. At that time we knew that Luke had the tissue of two lungs, but only 2/3 of one lung was working. We didn't know if he had the capability of using both lungs. We asked you to pray. You delivered. And God answered. Only a week after we asked you to pray, we got a positive answer to those prayers. Luke's second lung started inflating. He started moving air through that second lung.
Today we're in a similar place. As most of you know, we've been struggling to bring Luke's heart rate down to a normal rhythm. His heart has beat around 200 beats per minute for about 3 weeks now, when it should be around the 140s. The doctors have tried different combinations of the drugs Amioderone and Esmolol since this problem first started. It still hasn't worked. The doctors are telling us that we may be approaching the time in which Luke's heart will start to give out because it has been beating so incredibly fast for so long. It could be tomorrow, it could be next weeks, it could be longer, but we're running out time to get a handle on the problem.
After debating for about two days, Luke's team of doctors have decided upon a three step plan: (1) We max out the doses of Amioderone and Esmolol. Amioderone has been maxed out for quite some time, we're now slowly increasing the dose of Esmolol. By tonight he should be maxed out. Massive doses of the Esmolol has in the past caused Luke's heart to drop beats and have an adverse effect on his blood pressure. We're praying that it won't this time, but if it does, they can back off the dose rather quickly and get him out of trouble. Since we've tried variations of this option for three weeks, we don't have high hopes for this one being very effective in bringing his heart rate down.
(2) If the maxed out combo of Amiode and Esmolol doesn't work, we move to step two. This is a drug called Flecanide (sp?). This drug can only be administered orally and can not be administered on an empty stomach, and so we face quite a substantial obstacle. Luke hasn't been able to digest breast milk for about two weeks. They started up his feeds at 1 mL per hour night before last, but he threw it all up again. Today, they are attempting to feed him 1 mL per hour of Pedialite, which is basically water with vitamins and electrolytes. The goal is not yet to give him nutrition through this method, it's only to put something in his digestive system so that he might absorb the Flecanide. If Luke can keep the pedialite down until tomorrow afternoon, they plan to start the Flecanide. This medication also places Luke at risk for a different kind of arrhythmia, so they will be doing an EKG every day to monitor that. We are praying earnestly that Luke can keep the Pedialite down. If he can't, we can't give him Flecanide, then we must go to plan C.
(3) Plan C is where it is on the totem pole because it's very risky. It is called an oblation study. They would take Luke down to the cath lab and again run a catheter through one of his blood vessels to his heart. They would then use the catheter to poke around his heart at different nodes to try and find the one node that is causing his heart to go into the super-fast rhythm. Once they found it, they would then cauterize it or freeze it and render it inoperable. The idea being that it would no longer be able to throw his heart into the rhythm, and we could manage it better. It was explained to us this procedure is quite risky when performed on adults. When performed on a baby as small as Luke, the risk increases exponentially.
That's it. If one of these options doesn't work, that's it. Game over.
So we're calling you to pray for yet another miracle. We asked you to pray, and Luke was born even though he wasn't supposed to make it to 26 weeks. We asked you to pray, and an ambiguous lump of lung tissue started moving air. We asked you to pray, and Luke survived a risky surgery, even after arresting in the elevator. We asked you to pray and Luke was able to get off the heart lung machine. So we're asking you to call out to God to slow Luke's heart rate down in some way. As his parents, we really don't want to get to the point where the oblation study is our only option. I believe God can and will intervene before that. Please pray, like you've never prayed before, that Luke will go into a healthy, steady, normal heart rate using whatever method God would like to use. That's the key to everything. Once we get that, his kidneys and bowls will heal, and we'll get him of the ventilator, and on the way to bringing him HOME. We're almost out of options guys, and I have to fight to keep myself from going frantic. But we know that God is in control. We know that God is merciful and loving and powerful. He has the power to heal Luke completely. I believe he wants to hear from us and from you that we want him to intervene in Luke's situation again. I believe he will answer.
I am reminded of a passage out of Daniel 3: " Now when you hear the sound of the horn, flute, zither, lyre, harp, pipes and all kinds of music, if you are ready to fall down and worship the image I made, very good. But if you do not worship it, you will be thrown immediately into a blazing furnace. Then what god will be able to rescue you from my hand?” Shadrach, Meshach and Abednego replied to the king, “O Nebuchadnezzar, we do not need to defend ourselves before you in this matter. If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king. But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up.” (Dan. 3:15-18)
The God we serve is able to do immeasurably more than we ask or even hope. He can heal Luke and make him whole. But we want the world to know that even if he does not, even if we lose our precious son, God is still worthy of worship and praise and honor. We acknowledge his love and power over all other gods.
We desire to join in faithful prayer with you for Luke's healing. Thank you for your love, friendship, and earnest prayer.
Rachael & David

Thursday, July 9, 2009


Today's been worse than yesterday. Still on dialysis and the ventilator. He's not doing so well on the pressure support trials so far today. They started feeds at 1 mL an hour last night, but he threw it all up again this morning. Stopped feeds, so we don't know what the plan is for the new oral medication. Blood count's low, so they are giving him blood, which meant that he had to get another IV stick.

Wednesday, July 8, 2009


Trying not to be discouraged. Luke went back on dialysis today. Dr. Kao thinks it's too early to take Luke off the ventilator. She wants to get his heart rate under better control. The medication they want to give for this is only available in oral form, so they have to re-start feeds and pray that he tolerates them before we can try the new meds, hopefully tomorrow.

Tuesday, July 7, 2009


Luke got his PIC line re-installed today. Luke's heart rate is uncomfortably high for the doc, so we're waiting for the specialist from Austin to come back and make a plan for correcting the problem before they take him off the ventilator. But his pressure support trials continue to go well for the most part. Day two off of dialysis, and the docs are still happy with his electrolyte levels.

Monday, July 6, 2009

Luke is Eight Weeks Old!

I'm glad I waited until today to write this update, because it was going to be a pretty disappointing one. But now, I've got some happy news. You have to wait til the end to read it though, because we have to go chronologically.
This past week has been a pretty disappointing one. The only direction we seemed to be moving was backwards. I had a long conversation with the doctor about what has been going on with Luke's belly. I learned that Luke got something called necrotizing enterocolitis. Yeah, it sounds scary to me too. He explained to me that because of this infection, small parts of Luke's intestines died (yep, still sounds scary), and his intestines are also inflamed. Because of his cardiac arrest right after his surgery, Luke also got what's called an ileus. The nurse explained that his intestines stopped working because they didn't get adequate blood flow when he was in arrest, much like when your foot goes to sleep when you sit on it weird (this is what caused his kidneys to fail earlier, for some reason it was just very delayed). These two things in combination have caused his digestive system to stop working. I explained in the last note that they stopped feeding him, and he is getting all of his nutritional needs from IV fluid. The doctor told me that Luke can definitely recover from these conditions, but it will likely be a very slow process (we're no strangers to slow processes). It may be that when they start feeding him the middle of this week, that his intestines won't be ready to do the work yet and we'll have to stop feeds again. It may be a stop feeds, start feeds, repeat cycle for awhile, but eventually his intestines should "wake up" and do what they're supposed to do eventually. His belly right now is quite a bit less swollen than it was a week ago, but he's still got a potbelly full of air.
We haven't seen much progress in the way of his heart rate either. A few times this week, Luke's heart reverted back into that rhythm where he was dropping beats (the skipping CD thing again). Then the blood pressure gets out of whack and it's tough to break out of the rhythm. The last several days Luke has settled into a heart rate in the high 180s low 190s.
Luke also spent a lot of time sleeping during the day. After having him track with us so well, and be awake so much, it has been disappointing to just watch him sleep all day. This week though, he was awake one morning when I came into his room, and I don't think that I imagined it when he smiled at me when I started talking to him. I imagine it would take a lot for a kid who has gone through what Luke's gone through to smile, and it was just for me. It was magic.
We've had some trying times with one of Luke's night nurses, not caring for Luke the way we think he should be cared for. One night after we'd gone home for the day, Luke's PIC line (this is like an IV line that goes directly into his heart) came out. Not the most major of deals - not life threatening - but we had to give consent for them to put in the PIC line, his nurse should have notified us when it came out. We didn't find out about it until the middle of the next morning. I had a conversation with the charge nurse this morning, and Luke won't have that nurse any more.
So now for the good news. When I got to the hospital this morning, his day nurse (our favorite) announced that we are taking a "dialysis vacation". Luke hasn't gotten dialysis all day. He continues to pee more than sufficiently. If his numbers and chemical levels can stay where they want them, we'll be able to get off of dialysis forever and get one more piece of plastic out of his body.
Now that Luke's abdomen is not constantly filled with dialysis fluid, his lungs have more room to expand. Guess what? Those pressure support trials I told you about last week have started again, and Luke's done swimmingly on them today. The trials have been for two hours each time. He just finished his third one for the day, and he's doing great. We're trying not to set our hopes up too high - Luke has never gone on the docs' timetable since pregnancy - but we're hoping that he will get extabated the middle of this week. Luke's been intibated since he was 8 hours old, so this is a major mile stone. That day will probably be second best only to the day we go home.
The docs have taken him off of two of his heart medications in the last two days - the Esmolol and the Epinephrine. His only heart medication he's on now is the Amioderone. So far, Luke's been dealing with it pretty well. His heart rate is hanging out in the high 180s to low 190s. Blood pressure's good, as well as his other vitals.
So, I had some good news for you after all. :-D.
We're definitely not at the finish line yet. We're prepared to come in tomorrow and everything to have changed - such is the nature of this roller coaster ride called Ebstein's Anomaly. But it sure feels good to see a rainbow, even if we're in for more stormy weather.
Thank you for all your encouraging responses, and always, we're most grateful for your continual prayers. We love you.
Rachael & David


Having the best day we've had in over a week. Heart rate is fast but steady. Infection's going down. Weening off the ventilator today as well as some meds. Might be off the ventilator completely this week. Also taking a vacation from dialysis to see how he does. If he does well, we'll be done with dialysis forever! Thanks for your prayers!

Hold My Heart

I'm not writing this time to update on Luke, but more just to express my thoughts and feelings as a scared and tired mom of a very sick little boy. For most of my life, God has used the lyrics of songs to communicate his love and comfort to me. There are many songs in my past that I've used as prayers to help me express things that I can't find the words for. When listening to KLTY, a Christian radio station in Dallas, on the way home from the hospital a few days ago, I heard this song by Tenth Avenue North called Hold My Heart. The lyrics are so apt, I had to share them with you.

How long must I pray, must I pray to you?
How long must I wait, must I wait for you?
How long til I see your face, see you shining through?
I'm on my knees begging you to notice me.
I'm on my knees, Father will you turn to me?

One tear in the driving rain.
One voice in a sea of pain.
Could the Maker of the stars
Hear the sound of my breakin' heart?
One life that's all I am,
but right now I can barely stand.
If you're everything you say you are,
Won't you come close and hold my heart.

I've been so afraid, afraid to close my eyes.
So much could slip away before I say goodbye.
But if there's no other way, I'm done asking why.
Cause I'm on my knees, begging you to turn to me.
I'm on my knees, Father will you run to me?

So many questions without answers. Your promises remain.
I can't see, but I'll take my chances to hear you call my name.
To hear you call my name.

One tear in the driving rain.
One voice in a sea of pain.
Could the Maker of the stars
Hear the sound of my breakin' heart?
One life that's all I am,
but right now I can barely stand.
If you're everything you say you are,
Won't you come close and hold my heart.

Would you hold my heart?

Typing the lyrics out makes the tears come back to my eyes. It's a song expressing anguish, confusion, and anger. It reminds me of some of the lament Psalms of king David. I don't think I've ever heard another contemporary song quite like this one in it's poignant expression of negative emotions to God.
I don't know how many nights in the last 8 weeks I've been afraid to leave Luke's bedside or stayed awake in bed, afraid to close my eyes because what if that was the last time I saw my precious boy alive? I believe we've made it through the most critical period, but Luke is still a very sick little baby, and things could take a turn for the worse in just a very few moments. I know that many families have been through hospital stays much longer than ours. I talked to someone just this week who was with her premature baby in the hospital for 3 months before they got to go home. But, when you're in the middle of it, it just seems like it's never going to end. It sometimes seems like our prayers to take Luke home soon are just not being paid attention to by God. The pleading lyrics of this song resound in my heart so completely. Sometimes I wonder how God, who is so Huge and Majestic, can want to turn to me and my tiny little baby and heal him. But I know that God created this baby, knit him together in my womb, and cares about him and his mommy more deeply than I can fathom. I admit that I also struggle with the idea that Luke doesn't deserve this struggle for his life. Luke's done nothing wrong, and I don't know why he should have to fight every day to stay alive. If God is so loving, and so powerful, why hasn't he healed Luke yet? Why did Luke become sick in the first place?
Like king David's lament Psalms however, this song also has an element of "I don't know why this is happening. I wish there was another way so we wouldn't have to suffer, but Lord I trust you. I trust you to bring me through this." My heart is in agreement with this. I'm the last person to ask why we might be having to go through this. I'm trying to learn what it is I'm supposed to learn. But ultimately, I trust God that he is sovereign, and he will pull us through this.
Thanks for letting me share my thoughts with you. Thank you for your continual support through all of this and for your constant prayer for our son.

Saturday, July 4, 2009


Happy Independence Day!

Luke's heart rate plunged to 110s this morning, which would seem better, but Luke's system really has been working better with a fast heart rate. So docs tweaked his meds and he's now back up to the low 180s. Belly is still very swollen, though infection level continues to go down. Luke is also pretty agitated today and pain meds don't seem to be helping right now.


Today is a little bit better too. Heart rate's trending down to the mid-high 180s, and blood pressure is acceptable. Infection level continues to decrease, though Luke's belly is still very swollen. They're putting him on "gut rest" for 10 more days, meaning he won't get milk for that long. Thanks for praying.

Thursday, July 2, 2009


Having a little better day today, mostly things just aren't worse. Luke's heart rate is in the mid 190s. He hasn't really made any headway on his swollen tummy, but his blood work is showing that the level of infection in his body is slowly decreasing. Thanks for praying everyone. We thank you to continue.


Having a bad day. Heart rate's hanging around 200. Belly's still swollen and digestive tract is having trouble. Threw up twice today. Docs are concerned, but we're freaking out.