Spa Time

A favorite part of my day is Eamon's bath time. It is not just a means to an end, it is about the whole process - it is an activity for my little man. We affectionately refer to it as spa time -a relaxing, warm bath followed by a creamy massage and gentle stretching (actually, sounds like what I could use about now!). And, Eamon has my attention, fully, for its duration. The best part, for me, is that all the wires/tubes come off, and he is free! What a treat to have a "wireless" baby, even if it only lasts 10-20 minutes. Some days, we are quick to get the oxygen back on because he needs the help. Today, however, I was slow to reattach Eamon because he looked and sounded so good. When I did, the monitor screamed 100%! Almost, unheard of even when on oxygen. What joy for David and I, Eamon, too, I'm sure. So, the prince was able to sit upon his small throne (my bed, on a boppi, under his activity gym) without any O2 support for 1.5 hours!

We are seeing improvement, and are so thankful. The surgery was to help prevent any aspirations from below; obvious times like a spit-up were a concern, but the micro-aspirations were as real a threat to Eamon's lungs. Those would be the times we couldn't see that any formula had come up and had been mis-swallowed. Theses aspirations cause respiratory distress, which can be severe and life-threatening. Or, can cause ongoing damage to lungs that are otherwise healthy. Seeing progress, already, confirms for us that Eamon needed this surgery.

For now, I will savor the moments of the day when I can walk all around the house without an entourage of wires and equipment following. Until the day, when Eamon will no longer need them - my prayer is that I will see that day here, in the "land of the living"!

Gift List (continued from previous posts):

50. Freely moving about with Eamon in my arms.

51. Progress - however small.

52. Time alone

53. A husband who doesn't succumb to stress, but busily works with a song in his heart, and on his lips, until what's needed is accomplished. What a great example for me!

54. Keurig coffee delivered. Opening the box to find a variety of coffee to try, one cup at a time, from a friend who just wanted to cheer me up. She knows me well, coffee is the way to my heart!

55. For that matter, my Keurig coffee machine. Coffee, any time, no mess to clean up. I love that!

56. Surprise visits from family who love my boy.

57. My niece, Laurie. She has become such a beautiful young woman - full of warmth, love and compassion. Such joy to spend time with her, and her cute boyfriend!

58. Unconditional Love - first, from my heavenly Father. Then, displayed by my husband for me -it is like he is unaware of my many shortcomings. Next, felt for my 3 babies. They are my heart, and love for them exists regardless of what I receive in return.

Thank-You!

Seems so small a gesture, saying the words "Thank-you", when so many have poured out their own life on our behalf. But, we are so thankful for the tangible way you have collectively lifted our burden. His yoke is easy and his burden is light - truth that was partly revealed in the many ways God extended His hand through our family and friends. What peace we rested in while others fasted and prayed; what joy knowing Maeve and Myles were well cared for (and having a ball); what comfort when treats were prepared for us to help pass the time at the hospital; what kindness when nurses and Drs went the extra mile; and what grace when my shortcomings were overlooked. We know God has placed Eamon in the hearts of many, and we look forward to continue the journey with you!

Speaking of the prince, he is doing well. Improving each day, seeming to require less oxygen, a hoped-for-benefit of the surgery . His feeding schedule will take some time to get on track - a work in progress. We are all settling back in, and shifting gear into summer-mode!

Home Sweet Home

Let the rejoicing begin, the prince is home. How sweet it is to have the whole family together once again!

If you look closely, you can see Eamon's monitor - 100% oxygen, it doesn't get any better than that! He is so glad to be home, too! And, sleeping again...let's pray this is the scene at 3 am.

The Countdown

Eamon has been fever-free for more than 24 hours! However, in the meantime he has been sleeping like a bear in hibernation. He fell asleep Sunday around 6 am and slept through this morning (Monday) around 10. The Drs want to be sure he is alert enough before they will release him. The physical therapist just worked with Eamon, and put him right back to sleep! So, we continue to wait - I'm going to try and jolt my boy up with a semi-cool bath - how cruel, I know.

So, if all goes according to (my) plan, we should be able to go home late this afternoon or tonight! Either way, I will let you know.

Rescued!

I did make it home for a bit yesterday evening thanks to the sainted-sister, Colleen! Either she wants to play mom-of-3, or she just completely loves my children and me! Either way, we are thankful!

Eamon had another fever overnight, they have changed his antibiotic to a stronger one. They will reassess his potential departure after 24 hours free from fever. His schedule is confused. He is up most of the late day, evening and night and then sleeps all morning and early afternoon - do I have a teenager, already? He continues to be a brave boy, contented to just be, leading his mom by example.

David did see Eamon, through a mask, for a few minutes this afternoon. Mimi came in for an extended visit while I go home for some time with M & M. Thanks for waiting with us, the best is yet to be!

Feeling Hot, Hot Hot!

Eamon had a fever overnight and this afternoon. They repeated an x-ray, drew some blood, and took a urine sample. The Dr. said it is pneumonia, we will continue the same treatments, and wait (a common theme in my life) for Eamon to work "it" out of his lungs. So, we are not going home today.

Weekends are hard in the hospital. It gets so quiet and obvious that life is happening outside these walls. Weekends are for family and mine is all spread out - so disconcerting for this mama. David is still not feeling well, so he can't visit the baby. Myles had a party - how fun for him to be with all his boy buddies; Maeve had a lunch date with Aunt Colleen and Mr. Dane followed by a movie (Myles went along, too!). And I just wait, hopeful that the next 24 hours will be fever-free. Hopeful, that Eamon's lungs will be less "junkie" sounding. Hopeful, that this surgery will keep Eamon out of the hospital in the future. And hopeful, because those who wait will rise up with wings like eagles and SOAR!

Look How Far We've Come

Monday, after surgery

Today, having fun with Mommy Eamon had a smile-full day! He was just enjoying his toys, a visit from Maeve and Myles, and his Mama. The Dr. does not think Eamon will be able to go home tomorrow - they are in no rush, but we are! Sadly, they are slow to release on the weekend, everything really quiets down. Eamon clearly has something going on in his left lung, and due to his respiratory history is being treated aggressively.

Still Smiling

Eamon may or may not have pneumonia, either way they are starting an antibiotic tonight. Please pray that whatever is in his lungs will work its way out quickly. He has a weak cough normally and is having difficulty working anything up. We are doing lots of PT on his chest and back, and repositioning him often. Surprisingly, Eamon's oxygen looks good (mid-high 90s), and he is smiling away at his mama. I tried to capture his beautiful yet elusive smile on camera, but just kept missing it!

Thanks for praying while I focus on my little man! As an aside, my big man, that would be David, has been sick all week (sinus infection) - please add him to the list!

Here Comes the Sun...

Eamon decided to give mommy some great smiles this morning! But alas, they were short lived because he has developed a fever. The Drs do not believe it is a post-operative one - we are too far out now. It is most likely related to his lungs - a combination of small amounts of fluid and collapsed areas. They are just watching him for now, no labs or x-rays, and we will see if he works it out himself.
They began pedialite today - 1 ounce over 3 hours. If he tolerates that well they will move onto formula a bit later. And if it all goes well, and no fever, maybe we can be home on Saturday - Yeah!!!
So, if you can, please continue to pray for a speedy recovery!
Eamon is such a good sport, but even he has his limits. Lots of love from the little mister and his mommy. XO

Country Club Living

We have a new address - 4th floor in the Tower. Eamon was moved out of ICU last night into what we believe is luxury living. Our own room, our own bathroom (oh, the joy!), movies on demand, a desk for me to do some work (on what, I don't know) and my very own leather couch that opens to a full size bed!!! Not a chair, a bed! We both slept some last night!

This morning, the surgical team removed Eamon's NG tube, which went from his nose to stomach for drainage, and removed some bandages. He has 5 small incisions on his belly. They are allowing his stomach to vent any remaining gas through his g-tube button, the spot on his belly where a feeding tube connects, until about 4pm. Then, they will allow some pedialite to run continuously, delivering small amounts of fluid, for a few hours. If he tolerates this well, they will begin, very slowly, to introduce formula.

Eamon is not as restless today and, if I do say so myself, is lookin' good! His oxygen requirement is down to .5/.25 liters (amount he is normally on at home) and his numbers are great! He still needs to work at clearing his secretions - pray for a strong cough.

We went for a ride in a wheelchair today for x-rays. Eamon needed a full skeletal survey, which means his entire body, for diagnostic reasons. No matter where in the hospital we seem to roam, Eamon makes a friend with his delightful presence, pleasant disposition, and irresistible charm.

Everyone at home is well. Maeve is at an end-of-the-year party, thanks to her Auntie, and Prince number 1 is napping. Mimi is watching over Eamon, David is working, and I am doing a couple of mom-things at home.

I hope to have news of a departure date soon! I can't wait to have all my family under one roof!
Thanks for praying. It is not in vain, but accomplishing much in my baby's body and in our spirit!!

It's Out!

Such great news to report, the little mister is breathing on his own! They extubated around 10:30 this morning much to Eamon's delight, and mine! They started him on 3 liters of oxygen, but that has been moved down to 2 liters (his norm is .25 liters - just a needed puff). The x-rays show some fluid in lungs, probably related to surgery, that he needs to work out - a challenge for Eamon on a good day. He is sore, morphine to the rescue, but looks really well - his usual adorable self. No smiles or laughs yet, but I can tell he's on the verge! They plan to move Eamon out of ICU as soon as a bed becomes available - YEAH!

There are a couple of precious babies neighboring Eamon, but they are alone. There moms had to go home last night and have not been able to return yet. What heartbreak. I am so grateful for family that cares so beautifully for my Maeve and Myles so I can be with Eamon. And, the comfort of knowing when I leave later, for a much needed shower, Eamon will be in absolute capable, loving hands - his MiMi. Eamon never needs to be left alone. God has provided a "village" to help - He is so Good!

Your prayers are felt and so appreciated.
I am eternally grateful, Tracy XO

The ICU and Beyond

Eamon is out of surgery and in the ICU. They were able to do the surgery laproscopicly - thank you, Lord! Apparently, the Dr. had a bit of trouble, Eamon had a lot of air in his intestines and stomach which made it difficult to see clearly, but persisted and was successful. The muscle biopsy was able to come from his abdomen rather than making another incision in the leg. And, our boy has a new g-tube for feedings! He did quite well, and the day progressed as planned. Peace certainly reigned in our hearts today, thank-you all!

However, Eamon needs prayer for the recovery process. He is still intubated, and is struggling with effectively coughing-up mucus and other oral secretions. There is lots of gaging and he looks quite uncomfortable. I think we are in for a long night. Please pray, we are hoping to be able to remove the breathing tube tomorrow! For now, MiMi has sung Eamon to sleep so I could update everyone.

I hope to have great news to report tomorrow! Thanks and love to all!

Peace

Monday morning, surgery day. And sure enough, we are good. Eamon had some visitors this morning. Last minute kisses and prayers, and our little prince dazzled them with smiles and his laugh. Eamon is at peace, following after the Prince of Peace, just at ease and enjoying balloons, his bath, and talking with us. We will follow his lead, and linger in peace, knowing God has everything under control. "Do not be afraid, your prayer has been heard."

Here We Go...

It is Sunday night and a resounding "NO!" has not come. Peace has settled over our decision to go ahead with the surgery. We pray for Eamon's healing every day. We do not get too far ahead of ourselves, taking one day at a time. As Eamon's parents we are charged with protecting him, and so, today Eamon needs this surgery to protect his lungs from an aspiration (fluid, especially stomach acid, into the lungs). David and I have prayed, discussed, consulted, read about, and searched God in order to make this next step. God has answered in many ways - timely words, cleared schedules, great doctors, and lastly a blanket of peace. However, the angst that remains I believe is natural. Eamon is our baby, going in for major surgery requiring potentially days on a respirator. The idea of our little lamb experiencing any form of distress, at moments, feels unbearable. Tonight, as we prepare for what lies ahead, this verse from Zephaniah brings much needed comfort: "He will take great delight in you, He will quiet you with his love, He will rejoice over you with singing." And, I will sleep with these thoughts: "You dance over me while I am unaware. You sing all around, but I never hear the sound. Lord, I'm amazed by you, I am amazed how you love me. How wide, how deep, how great is your love for me."

Please pray, but God is in the details so here is a list of specifics:

• Eamon has hard to find veins and the I.V. can be difficult be to place
• That the surgery will be done laproscopicly
• The doctors will be alert and skilled at wrapping Eamon's esophagus - not too tight or too loose
• The perfect amount of muscle will be taken for the biopsy and yield useful information
• The anesthesia team will know just the right time to extubate, and Eamon will breathe stronger than ever
• The pain will be to a minimum
• That Eamon will be comforted and cradled by Jesus until his mommy and daddy can hold him

The surgery is at 2:30pm, and I will update as I am able. Thank you, your prayers and love are so much a part of what God has in store for Eamon.

Continued Gifts

see previous posts for beginning
42. Grandparents. My children are blessed to have both my parents and David's living within 5 minutes of us. We could walk there! They share all our special moments.
43. The end of a school year - so much accomplished, so much to look forward to, with rest in between.
44. My dad - what a great example of loving devotion. He was never too tired or too busy, and he still isn't.
45. How much my children adore him.
46. The way my husband loves our family with his whole being.
47. Father's Day - a day to honor the great men in my life: David, Dad, Father -in-law - such quiet support; my brother, Jerry, the godfather and champion of Maeve and Myles; Joe - Eamon's strong defender and godfather; and fun uncles who always have M,M,and E's back -
Tim and Jon.
48. God, the Father, who rejoices over me (and you) with singing!
49. Barbeques and swimming to celebrate all that is masculine.

Somewhere Over The Rainbow

Our Ballerina

After the show
The girls

Today, was Maeve's dance recital. How precious to see these little girls twirling in their tutus. Maeve led her group on stage with such grace and charm. They danced to Somewhere over the Rainbow. Maeve had quite a cheering section, but Myles and Eamon were her biggest fans. Myles proudly presented our princess with a lovely pink rose.

Maeve, you are our treasure at the end of every rainbow!

Why Worry?

I was reading a quote from Streams in the Desert via another blog that was a good reminder for my current condition:

"Why do you worry? What possible use does your worrying serve? You are aboard such a large ship that you would be unable to steer even if your Captain placed you at the helm. You would not even be able to adjust the sails, yet you worry as if you were the captain or the helmsman of the vessel. Be quiet, dear soul - God is the Master!"

We are still praying. Eamon is scheduled, we are proceeding as planned unless God intervenes - and we are leaving that door pretty wide open. God will make His way known - in His time. Remember the Israelites - God parted the Red Sea after they got their feet wet. He asked them to go into the water before he responded. Abraham brought Isaac up the mountain, and to the alter before God provided the ram. God triumphed over the grave after 3 days of silence. We will wait, expecting. We are Counting on God! (If you'd like listen below, the song is fun and seems to be the rallying cry of our family) Thanks for walking and waiting with us - you are loved!

Free at Last

Yeah, the cast is off! And, just in time for Maeve's dance recital on Saturday.

1,000 Gift List continued:

35. Sweet little ballerinas - tutu and all!

36. How Maeve, Myles, and Eamon love one another.

37. Kids in their Pj's.

38. Big dreams for little girls - Maeve currently wants to be a Rock Star. She is even trying to convince us to build a music room where she can write her songs!

39. The sound of a friend's voice - such comfort.

40. Our freshly cut lawn.

41. A word, timely spoken.

The Wilderness

At church, a pastor was talking about wilderness experiences. I would not have thought I was in one, but apparently my life fits the bill. He said, God always provides a promise before we go into the wilderness that will be used to sustain us until we get to our promised land. For me, my promised land is Eamon's complete healing. But until then, I need to walk a sometimes difficult and fine line. One that leaves the door wide open for God's miraculous intervention, while at the same time dealing with the day-to-day details of life with a "medically fragile" child.

Between my 20 week ultrasound and Eamon's delivery at 39 weeks, God poured life into my spirit like no other time in my walk of faith. Clearly, He told us not to be afraid because our prayer had been heard. That simple verse has helped sustain us on more occasions than I could mention. God delivered me from all fear, and any time something begins to rise up, simply repeating that verse brings back my peace.

That being said, Eamon - our sweet, little man is scheduled for surgery on Monday and peace seems to be evading our hearts and home. David and I are spending the next 24 hours in personal prayer as how we should proceed - surgery or not. There are serious risks for Eamon to undergo anesthesia. They will need to intubate him - a ventilator will do his breathing, but the trick will be extubating him from the machine. His respiratory system is not stable, requiring O2 support. Also, the fundoplication will permanently alter Eamon's stomach and esophagus.

I know God can and does speak to us through his word, in prayer and worship, and through others -in the council of many is wisdom. I would personally prefer an audible voice at this point. Please pray that God would make his will evident for this mom and dad, and soon!

As a side prayer request, both Maeve and Myles have a stomach virus. We are just having loads of fun, and laundry. Maeve is supposed to get the old cast off tomorrow, which is really today...I need to go to bed!


Gift List continued:
31. Read alouds with my babies - we just finished Charlotte's Web.
32. Kid birthday parties - from fun invites to the homemade cakes.
33. Little love notes from Maeve - using inventive spelling.
34. Watering flowers - mindless time spent outdoors.
35. My pink agenda - I just love to write in such a colorful place.

And the Gift goes on...

26. A fun movie with the girls.
27. Tears that bring release.
28. Preschool picnics.
29. Swinging with Myles, laying back looking up at the majesty of our oak tree.
30. Singing, really loud - if only my voice could justify such action.

The Scoop

There are so many details to our story, oh where to begin. I thought I would work from today, and as time allows share our journey backwards.

As of today, Eamon is without an underlying diagnosis. He has hydrocephalus ex vacuo, which means there is increased spinal fluid in the ventricles of his brain, cushioning and protecting the decreased amount of brain tissue present.

He has hypotonia, low muscle tone through-out his body. This condition, in particular, causes much of Eamon's current problems. The weakness, or floppy nature, effect every normal function of his little body. For example, his ability to take full, deep breathes is compromised because his chest muscles are so weak. Therefore, Eamon requires supplemental oxygen. He has a g-tube, feeding tube directly into his stomach, because there is a great potential for Eamon to mis-swallow his food (into his lungs). The mechanics for swallowing are there, but slow and sluggish. Eamon fights constipation because there is low motility of his bowels. He has a very hard time clearing his oral secretions, so he sounds gurgley. His cough is just not strong enough.

And lastly, Eamon has infantile spasms. This is a seizure disorder very specific to little ones. It is under control, his last EEG showed no seizure activity - Thank You Jesus! However, Eamon takes a high dosage of vigabatrin daily which has the potential to cause peripheral vision loss.

Certainly, there are many areas of concern, but no real understanding as to the reason. Some days, that is a blessing. There are no words spoken over his future, limiting him or our ability to remain hopeful. But on other days, it feels lonely. Eamon does not fit neatly into a category. That can be hard on me, his mommy, who is sometimes looking for a guidepost, or at the least a fellow traveler who can understand where we are, and maybe where we are headed. Even as I write this, I am reminded that indeed I always have a co-traveller. God has said, "I know he plans I have for you (Eamon), declares the Lord, plans to prosper you and not to harm you, to give you hope and a future." Jeremiah 29:11

Eamon comes with a lot of bells and whistles. He is usually connected to an oxygen supply, his foot lights up with the probe for the O2/heart monitor, and every four hours, for an hour, Eamon is connected to a feeding pump. It can be quite a mess of wires getting tangled and restricting how freely we move around our home. We often joke about our dream to have a wire-less baby.

The background "music" of our home is the beeping of Eamon's monitor, the hum of the pump, and on certain nights the gush of air from a bi-pap machine. Such noise, we all have become a bit immune, only jumping to check after several beeps.

There are certainly no shortage of prayer requests from us. I want to thank you for the beautiful part you play in our lives. For Eamon, simply being, is miraculous ( I'll share some of those details another time). And, we have such expectation for how God is going to continue to make all things work together for Eamon's good, and ours as a family.

Beep, Beep, Beep...I hear it on the monitor, the sweet sound of my little man calling for mama -his voice for now.

Milestones

Today, day of days, Maeve got her own library card. Oh, the joy! She reported, "Well, mom, now I am all grown up." Surely. The beloved card, she thinks it is a credit card type thing, is on display in a clear plastic box. Now, her four year old brother can view what is to come. We are knee deep in borrowed books and cds. Life should always be so good!


Gift List...
(see previous post)

21. 6 year old excitement.
22. Eamon's little laugh and smile, even at 4 am it is captivating.
23. Sparkling bathrooms thanks to my Mr. Clean.
24. Early in the morning, opening the blinds to let in a new day.
25. My siblings: Colleen, Tim, Jerry and Erica - who always end our calls with an "I Love You".

Tokens

Tokens, by my mother's definition, are little gifts from God to remind us He has not forgotten our needs. A well-timed phone call, note in the mail, or even a bloom on the deadest of plants ( a nod to my green thumb). Maeve has been watching over her caterpillars like a true mama-to-be. There has been such expectation for new life. We received 5 caterpillars. They started out the same size, but one quickly pulled ahead in growth. Three followed suit shortly after, but one stayed behind - small and motionless. We thought it had died, but the following morning there he was - back in the game. He went through all the phases like the others, just slower and at his own pace. The leader, emerged first to my daughter's delight. And as expected, the three followed. But it was the little one who we all anxiously awaited. His arrival seemed like such a triumph, considering his start. We knew he would be the most beautiful, for in His time all things are made new. And so, we wait. Eamon will emerge, we have not counted him out, his day to fly is coming!

What I Know For Sure....

Eamon's surgery (see earlier post for details) is set for Monday, June 16th. There are a few details to be worked out still. I have been feeling a bit anxious, particularly for the anesthesia. So I thought I would remind myself that in a world of uncertainty there are a few things that I do know for sure...

• God' promise - "Do not be afraid, your prayer has been heard."
  
• Peace that defies my understanding - I have lived in that peace since my 20 week ultrasound.
• Grace that is just the right amount for the day, whatever it should entail.
• When I am at my weakest, God is at his strongest.
• There are really only two choices to make - I believe and trust or I don't. I choose to believe!

Gift List (continued from previous post):

16. Morning coffee, well really just coffee at any time!

17. Fridays with Frank ...our pizza night with Frank Sinatra playing for ambience.

18. Big, beautiful roses just blooming out our window.

19. Long, and I do mean "l-o-n-g ", showers.

20. A spa day, the works: mani/pedi, massage, facial and the ever so yummy spa lunch in the Tranquility Room.