Saturday, March 25, 2006

Audio Blog?....what next!!!! Connor and Dad say HI

Hello folks....Daddy here with my little buddy "Connor". I keep telling him that we want him to get better soon so we can take him home and play with Abbey our dog! And he tells me to keep on praying so they will take all those "pipes" out of me!

this is an audio post - click to play

Audio post from Mama

this is an audio post - click to play

Trying a new thing.....

Ok everyone here I go trying a new thing. In a few moments you will see a new post show up that is an audio post. How cool is that!!!! Our hospital buddies John and Susan stopped by the family room for a visit and showed me how to audio here I go. If all goes well, that will be my blog for this evening.
Lovebug Hugs,

Friday, March 24, 2006

One step forward...three steps back!

I'm not excited at all to write this post. After such a great and promising day yesterday, today was a turn in the wrong direction. After leaving him last night at 11:30pm we anticipated a great new day to come, but when we arrived in Connor's room this morning, it was not the case. He struggled most of the night with his breathing and at about 3:00am he ended up back on the c-pap machine and a new addition of an OG tube (oral gastric) to suction his tummy. Because of the OG tube he was severely foaming at the mouth and really looked a fright. They stopped his feeds because of fear of aspiration, and went back to TPN (total pareanatal nutrition) through his IV line. On top of that he developed a skin infection where the opening of the G-tube is in his tummy so they started him on a 7-day round of antibiotics. WOW, what a difference a day makes, huh!!!! We spent a teary, emotional morning and day watching Connor struggle, once again.

Thanks for your support today Mom (R.) and Teresa. It was good to have a shoulder to cry on and a listening ear. The lunch was great. We have lots of left-overs to finish in our fridge in the trailer. Pastor Chris and Lisa also came for a surprise visit. Your encouragement is always refreshing and by the way, the Mamba was super but no substitute for Starburst...HA!! During our lunch we were also suprised to see Greg and Kelly and little Micha!! How we pray that Micha received a good report from his MRI. You are still in our prayers little guy!!!

Connor remains on all of the breathing support at the moment. It looks like our time in ICU will continue until they can get all of this under control. Please continue your prayers for Connor to be a fighter!!!
Lovebug Hugs,

Thursday, March 23, 2006

I take great delight in you...

Yippee....Daddy's back!!!!!

Today was such a great day with Connor. I sat for hours holding him and cradling him and at one point in the afternoon I whispered in his ear, “Little bug, I take great delight in you!” As I watched his every breath and his every movement and twitch I was overwhelmed with delight. I just looked up the word delight in the dictionary (my mom would be proud!) and this is what it said, “To find enjoyment in, to take pleasure in, to find pleasing to the eye, to be excited to behold, and to fill ones countenance with joy!! Wow, that is exactly how I felt today. I found delight in the tracking of his eyes with mine. I took pleasure in his ability to snuggle into the crook of my arms and fall off to sleep. I was excited to behold my beautiful boy and I found him incredibly pleasing to my eyes. It’s amazing how one little life, Connor’s little life, has changed me from the inside out and filled me with more love than I ever thought possible.

Being a mother now, I find myself gushing with a waterfall of love for Connor. How can such an innocent child capture your heart and melt your heart all at the same time?? What an amazing gift our son is!! He is teaching me so much about the way God loves us. I was just talking with a friend last night and I was sharing with her that I have to say thank you to Connor so often because he is teaching me so much about Jesus. Even as I write this blog I am reminded of the scripture in Psalm 149:4a that says, “For the Lord takes delight in His people…” And to think that my love for Connor is just a tip of the iceberg of God’s great love for us. I believe that this is one of many lessons that Connor has in store for his mama. I look forward to each new realization and to each special truth that our little bug will teach us. Thank you Lord for this wonderful illustration of your love for us.

As I was searching for the scriptures in the Psalms I also came across a great verse that seems to describe my experience over the past few weeks. Ps. 92:10 says, “But you have made me as strong as a wild bull, how refreshed I am by your blessings.” I believe this describes what God has been doing in me over the past days. I know that God is giving me the strength I need to get through each day and it’s not a common strength. It is strong as a bull!!! I have described to many of you that there are days where I can’t even feel my feet on the ground. I believe that, through all of your prayers, God is allowing me to glide through the toughest of days with a beautiful sense of grace!! And the blessings that my eyes are beholding are countless. Whether it is a small victory for Connor or whether it is bringing encouragement to another family in the waiting room, there are great and marvelous blessings that I see here.

I will leave you with this challenge before I head off to bed….Take time in your day, in your world, where you live at the moment to take great delight in those you love. If you take a minute to see them with that awe inspiring kind of love, I promise it will change the way you look at them forever. May you be captivated by your delight this very day!!

Lovebug hugs,

A better day for Connor...

Mama and "little bug" snuggling .....It's been a good day!!!!
Lots of snuggle time.

Little Bug snoozing on his tummy...

Lunchtime surprise with Marsha, Erin and Kathy. Thanks gals, the "real" food was great!!!
(Kathy's taking the picture...)

Proof that Connor started Pedialyte through his G-tube today. in his tummy!!!

A view from the top of Connor getting all of his tubes and lines cleaned today!!
Nurse Becky was so great today...what love and kindness she showed to Connor.

Connor wide awake and ready to play....

Connor and Mama.....I think Connor's saying, "Mama, where's my daddy???"

Hi Everyone ~

What a good day it is today!!! Although Connor had a rough time throughout the night, he awoke to the morning sun with new strength. What an answer to prayer to see him happy and breathing easier. The docs decided that Connor doesn't need the collar to help position him for better breathing. They concluded that the swelling was probably the biggest culprite of the breathing, but he still isn't out of the woods yet. If, when the swelling goes down completely, he is still having trouble they will need to look into some different avenues of treatment. But for now, he is improving and God is answering our prayers.

We had another major milestone today. Connor was ok'd to start pedialyte through his G-tube. What a miracle!!! He has been tolerating a tiny amount of volume in his tummy and this is an excellent sign that he will be able to get back to mama's milk within a few days. He will still have to go at a very slow rate so that the volume doesn't stretch his little tummy too far, but it is definately progress!! If all goes well, we may be out of ICU in about 3-4 days!! Once we get down to a regular room they will order a swallowing study for Connor to see if he is safe to take his feeds orally. If he passes, then our hope is that Connor could get back to nursing!! What joy this would bring to mama (and daddy too)!!! Please pray on Connor's behalf that he could get to this point soon. I will keep you posted on the progress in this area!!

Lori enjoyed a nice visit today with Kathy, Marsha and Erin. They brought homemade food for lunch and that was such a treat!!! We had a nice little luncheon out on the deck of the family room. They even brought a table cloth and pretty napkins (with bugs) and plastic champagne glasses. Thanks gals, your visit did my heart good!!! Lori's cousin Janel also came to say hello and she got to see how good Connor was doing. Thanks for taking time out of your day for us Janel, it was really wonderful to see you!!!

The entire afternoon was spent holding Connor and snuggling as he slept. This was the longest, uninterrupted time mama has had with Connor since Feb. 28th!!! What fun it was just to smother his cute little face with kisses!!! Oh happy day!!!!

As I write this blog we are anxiously awaiting Daddy's return to us!!! We will spend our first night in the vintage trailer tonight!!! We lost our sleeping closet as the ICU is packed today!!! We pray that Connor has a great night of resting and an even better day tomorrow!!! I hope you enjoyed the pics above. We will take more tomorrow with Connor and Daddy.

All our lovebug hugs,

Wednesday, March 22, 2006

Tired Mama...

As most of you know, last night was a tough night for Connor. Through his struggle for breaths the doctors exhausted all of their resources for ideas to help him. I finally went to sleep after he calmed down about 2:30am. This morning he found a bit of a respite from his struggle. After meeting with the docs this morning they indicated that he may have what they call, upper airway constriction due to many factors. First, with Connor having down syndrome they suspect that he could have a thicker posterior tongue and when he positions himself to get better breaths by leaning his head so far back, his tongue may slightly slip into the back of his throat and cause a blockage. Second, there may be significant swelling from the breathing tube being in. And thirdly, his nasal passage ways may be blocked from all the tubes he's had up his nose. They are trying to remedy the swelling issue with steroids and they are considering a type of neck brace to position his jaw in a way that opens up his throat. At this point they can't find a brace small enough for his little neck and jaw area so they are using rolled up cloth diapers to help prop him up in different positions. Wow, who would have thought breathing could be so complicated.

Thanks for the morning visit today Maureen and Susanne!! It's always so good to feel the love of family and friends and today I really needed it after such a long night. Thanks for our new bunny "Mr. Pickles" Susanne, he's absolutely adorable.
Well, as you can probably imagine Mama is tired today. I've tried to lay down twice to catch some zzzz's but my mind races with thoughts of Connor and I am quickly up again. Hopefully, tonight will be an earlier night to sleep than last.

Many of you that are reading our blog have sent email messages that you are having a hard time leaving a comment. Here's how you do it. After reading a blog you will see a comment box at the bottom. Left click on it and a comment box will appear. Write your comment where it says Leave a comment and then at the bottom where it says Choose an Identity click on the word Other and fill in your name. Leave the webpage blank and then press Publish your comment. Viola and your done!!! I hope that didn't seem too elementary, but some have asked so I wanted to respond. We LOVE getting your comments. We LOVE to know that you are praying. I think I'm just as addicted to this blogging thing as some of you have told me you are, HA!

Some of you have also wanted to come for a visit and we would love that. I will let you know that while we are in ICU they are pretty strick about allowing family only barring a few exceptions. So I will let you all be the judge of what you prefer. If you want to come to visit with us, we would really love that. If you want to see Connor, you may need to wait until we are moved to a regular room on the medical floor, which will hopefully be soon. As always we will keep you all posted on where we are so you can make your best determination of when to visit.

Sorry for a blah sounding blog with "just the facts". Hopefully I will be back to my writting style tomorrow.
Lovebug Hugs,

Tuesday, March 21, 2006

End of the day...

Sleep tight little bug...

Ok, I know this isn't the best picture, but this is the newest contraption they have placed up Connor's nose. If you look really close you can see that Connor is blowing nose bubbles with the new tube. HA HA

Connor rigged up to breathe...his poor little neck has to be getting tired...

Connor with all of his tubes and IV's hooked up.

Hi all ~

Well, Connor has had a rough afternoon and evening. He is still struggling for every breath and they have literally spent about 2 1/2 hours in his room with him trying new things to help remedy the situation. He looks so tired from fighting. His little eyes are puffy from crying and his feet are literally purple from being poked. The doctors ended up having to give him steriods to try to bring the swelling down in his throat from the ventilator in efforts to open up the air passage ways. This did not work. Then they tried something called Heliox, which stands for Helium and Oxygen. They used the nasal canula to blow in both elements at once, but Connor couldn't handle the lower amount of Oxygen and his stats dropped into the 70's. This again did not work. They ordered X-rays and we are still waiting for results.

Now they are trying an NP tube in his nose to open up the passage way. I'm not sure right now what NP means but I will hopefully get a full explanation later. This seem to be allowing better movement of air for Connor. It's not working 100%, but it's not failing either. They have him drugged up again so that he won't fight this new apperatice in his nose, so he is sleeping at the moment. My oh my for what he is going through. They are watching him very closely this evening and I can tell that the intensity of the doctors has changed. I can tell they are worried that he seems to not be able to breathe without assistance. Please pray that his passage ways open completely to allow free air to flow through his body.
I am grateful that the docs aren't rushing to re-intibate him, but I also hate to see him like this. Once again, we must rally together and pray for the docs to have perfect wisdom on how to proceed with Connor. They keep calling him a "complicated boy" and I think that Connor just wants to keep us all on our knees praying for him!!
Thanks for the visit tonight Larry & Maureen, Kyle, Tyler and Derek. It was great to have you here at the very time the docs were with us. I needed your strength and your company...Thanks!!
Randy is home in Auburn tonight after leaving from here to help my folks out with their lawn. I could tell that my dad was getting frustrated that the lawn wasn't mowed on Saturday when I was there so when I talked to Randy about it yesterday, he was more than willing to jump in and help. Thanks honey for looking out for Dad and Mom. He also had to spend some time working at the base today, so he will rejoin us here at the hospital tomorrow.
As for me, my heart is heavy with worry for sweet Connor tonight. After watching him struggle most of the day I am exhausted from what my eyes have seen. Oh how I pray that God will put an eraser on my eyes so that I don't remember some of the sights I have seen. Only God can wipe away some of these memories. May I wake tomorrow with new hope and may Connor feel strength in his body and the breath of God in his lung. Thanks for your prayers faithful bloggers!!
Lovebug Hugs,

A battle for breath...

Watching our little bug battle for breath is painful. Seeing his little body gasp for the very air he needs is heart-wrenching. With his ventilator out this afternoon Connor is certainly fighting for each tiny breath he gets. His heart rate is high because he’s working so hard and now that I can hear his little voice & sounds he is wheezing and panting like he just ran a marathon. Oh Lord, let our son breath with ease!!!! Please help him fight!!

As I sit here by Connor’s bedside I’ve been praying for him. The Lord brought to mind a couple of scriptures in Isaiah 42 that I used to use in my counseling practice quite often.

Isaiah 42:2a, 3a, “He will be gentle…A bruised reed He will not break and a smoldering flame He will not snuff out...”
Isaiah 42:3b, “…He will encourage the fainthearted, those tempted to despair…”

What a comfort these verses are to me. I pray faithfully that Connor would be treated with kindness and gentleness. Even in the midst of his struggle, I believe that gentleness has been shown to him and most of the time gentle hands have touched his body. I’ve talked in other blogs about all of his pokes and bruises, and today I counted 24 pokes alone just on his feet. His legs and wrists are bruised now too. As a protective mama I look on when they come with their needles and I feel that this next poke will be the one to break Connor. But, as I trust God with Connor, he reminds me that “a bruised reed He will not break and a smoldering flame He will not snuff out.” Thank you, Lord, for comforting, cradling and protecting our little bug from harm.

As for me this afternoon I feel a bit like the description above in Is. 42:3b, “fainthearted.” When I catch myself spiraling into that zone of worry and despair for Connor, I must force myself to look up!!! I must find my strength and encouragement in Him. So that is where I find myself this afternoon, looking up and trusting God to help Connor win his battle for breath.
Continue to pray for peaceful breath for Connor!!!!
Lovebug Hugs,

Ventilator out...for now

This afternoon we made a big transition. Thd docs decided that Connor was ready to be extibated (that means removing the ventilator). When the respitory team came to do this Connor seemed to tolerate it just fine, but then 15 minutes later he began his struggle for breath once again. I could tell that the docs were worried about this because when they listened to his lungs they said they sounded great. What then would be happening to compromise his breathing in this way??? They started the heavy meds once again to settle him down and get the breathing under control. Since the surgery on Friday, the medical team made the decision not to use the c-pap any more because it could force pressurized air into Connor's belly and this could be disasterous for him. So what that means is that he will have to be re-ventilated if he can't start breathing properly on his own. Please pray that his breaths would be smooth and even. Please pray that he would be peaceful and restful so they don't have to keep drugging him up.

I was able to hold Connor for about 15 minutes when the ventilator came out. However, he was so upset I couldn't even calm him down. What great frustration fills my heart not to be able to soothe my own little bug!! He seemed to be in pain, and maybe he was from his incision for the tummy tube. I ended up laying him back down on his wedge (that we affectionately call "the throne) and he quieted down nicely. Hopefully after he rests for a while they will re-assess him and he can continue to be off the ventilator. I will keep you posted on what the rest of the day holds for us.
Lovebug Hugs,

A hand to hold...

This morning when I entered Connor’s room at 7:30am he was having a wide awake moment. His eyes were bright and cheery and I just know if he could talk, he would have said, “Good Morning Mama” with a giggle in his voice. His little hands were swaying to and fro and his chubby looking legs were kickin’ away. What joy I felt to see Connor doing some normal, daily activities. We haven’t seen him squirm around for so many days; it was nice to see movement. As I always do, I stepped up on a little stool so I could look at Connor from the top since he’s in that great big bed. I lovingly rubbed his cute little head in a circular motion and normally it calms him down or puts him to sleep. Today was different…..Today, right when I touched his head he had a hand reflex that made his little hand reach out and grasp my finger. We’ve held hands a lot, Connor and I, but today, he initiated it.

Wow, what a rush of emotions that ran through me at that moment. It reminded me of that first time that Randy reached over and held my hand. We were at a dinner theater in Denver, CO and I remember his cute, coy way of scooting real close and placing his hand upon mine. Oh how I wanted to jump for joy at that very second, but I felt I needed to play it cool as not to scare him off. I also remember wanting that play to last FOREVER so we would never have to let go. And now, I have his hand to hold for all of time and we have created another hand to be held by us forever and ever.
There really is something to be said about skin to skin contact. I naturally find myself wanting to kiss and rub and softly run my cheek over Connor all the time. It gives me goose bumps to feel his little movements and to smell his little baby skin (however, right now he needs a bath Really Bad!!!) How great it is that God created us to need contact with each other. I know the first 2 weeks of being here without Randy I longed for his touch and his presence by my side. The day he returned to us, I met him at the hospital’s Giraffe entrance and we began our walk to Connor’s room. It didn’t take him long and he reached out and grasped my hand and, finally, we had contact. There really is something intimate about touch. It speaks words to the heart that the mouth could never say. It touches deep within us to give us the strength and courage we need for the moment. Amazing isn’t it? All of that in just a simple touch.

I have had many hands to hold in our journey. Many of your hands have held mine and I am forever grateful to have had you by my side. I think of Maureen and Jacqueline and Kathy and Mom (R.) on that first scary day in the ICU when we could have lost Connor. Your hands gave me strength. I think of Mom (M.) during our first 3 days here at Children’s and she stayed with me and held my hand when Randy had to be away. Thanks Mom, you gave me courage. I think of Bryan (my brother) who was by my side for visits and always took a moment to reach his hand out to mine. Thanks Bryan, you have such a tender heart toward us and towards Connor. I think of my sisters Kathy, Marsha, Lynette, Teresa, Maureen & Kathy who have all taken time to come and hold my hand. You gals are a source of joy to my heart, Thank you!! My sister Heather has held my hand over the phone and in so many touching comments and emails. She has taken time to capture the true heart of love by being forever constant in her correspondence. Our dads have even stretched out their big, strong, rugged, work stained hands to lay upon us in prayer. Thank you for your ever-vigilant expressions of faith. I think also of our pastor’s who have by phone and in person been a hand of love and who have been the hands of God to us. Thanks Pastor Don for your many visits and Pastor David for your phone contact. I especially think of Randy, my husband, my love and my partner in life. Your strong hands have reached in to bring comfort, love and joy to me in this difficult time for us. Watching you place your hands on Connor is such a joy to watch. You tickle and touch him like no one else can. Thank you for your devotion to us. You are the greatest husband in the whole wide universe, and I love you all the way to the moon and back again!!! Lastly, and really most importantly, I think of our tender-loving Heavenly Father. His hands have cradled us, wiped the tears from our eyes, held us up when otherwise we would fall, and He has led us with unwavering direction & guidance in our journey with our “little bug”. Just like I wrote yesterday, I don’t know how it is that God can completely care for each one of His children all at the same time, but He does! We know that our journey is not the only thing on God’s mind. You too, have concerns and requests that you are bringing before the throne. But this we do know, we are all important to Him and He takes great delight in all of us, His children. He is able to take us all through the specific needs in our lives with His gentle and loving hands. We thank God that He is the Deliverer and the Rescuer of our souls. We are grateful for our salvation and for God’s presence with us.

I guess what I am trying to say here is that you are all blessings to us!!! Whether far or near, you have reached out your hands to us and we are forever grateful. Your touches of love are penetrating us!! I hope that we, in some way through this blog, are reaching out to all of you in return to hold your hands by our hearts.
I will leave you this morning with this one question…Who’s hand are you holding?
Lovebug Hugs,

Monday, March 20, 2006

Answers to prayers....

A morning view of Connor with his little lamb and new Prayer Bear looking over him.

A special visit with "Auntie Linda" and "Granny Kathy". You gals are awesome.

Hi Friends ~
We were visited today by our dear sweet Bible study pals who have honorary status as Auntie Linda and Granny Kathy. We so enjoyed an infusion of joy from these wonderful women of God and they even brought treats with them. Of course Randy loved the chocolate kisses (thanks Nita) and the little red prayer bear for Connor is adorable. We were also blessed by a special time of prayer for Connor and, as always, we gain so much strength from the prayers of the saints!!! We appreciate each and every prayer that is going up on our behalf. I know that God is answering your prayers and I must share a few specific and personal answers that I have already received.

Just the other day I was speaking with my sister-in-love Kathy, and she shared with me a specific prayer she had prayed for Connor the night before. She prayed that the angels would rub Connor's head the same way I do to put him to sleep. I was taken back by that because I pray every night that God would cradle Connor the same way I do since I can't pick him up. What an answer to my prayer that Kathy was praying specifically for Connor in this way. Thanks Kathy, I love you!

Another answer for Connor came in the form of one word, HOPE! During our first 5 days here at Children's another sister, Auntie Maureen, brought us a special Willow Tree figurine (something we collect) with a little boy holding a balloon that said "Hope" and then just today I received an email from another sister of my heart, Heather from Virginia, entitled "Hope". Every day I have also prayed that in the midst of all of our uncertainties that God would find creative ways to give us "Hope!" Thanks sisters for being a vessel that God is using in our hearts.

Yet another answer to prayer came with a nurse that I can't even remember her name. She called Connor a "mighty boy". Since Connor was born, we have prayed that he would become a mighty man of God. It's one thing for the nurses to speak sweetly to Connor and call him cutie pie, and lovebug, and muffin, but this particular nurse actually called out a character quality that we are praying for our son. Thank you unnamed nurse for being a voice of prophetic truth to us.

A few nights ago I was in the chaple here praying for Connor and I encountered the sweetest experience. I watched a little old lady come in bearing a small basket upon her arm. She looked like a very old version of Little Red Riding Hood. I watched her go about her business and then she came over to me and she asked in the shakiest of voices, "Are you praying for your baby?" I said, "Yes I am, his name is Connor." She then asked if she could give me a special prayer scarf to put in his hospital crib. I replied, "Yes!" She reached into her basket and pulled out a white and yellow scarf and said, "Here, this one is intended for a little boy and I just want you to know that when I sit and crochet these scarves I am praying for each child that will receive it. I pray for their healing in Jesus name and for their complete health to be restored." With tears in my eyes I received this special gift and she reached her hand out to pray with me. When she walked out of the chaple I knew I had been visited by a very special angel. You see I have also been praying that in our experience here we would encounter angels around every corner to bring us love, and encouragement. I know this was a specific answer to our prayers.

I am grateful for the way that you all are receiving these blogs and for your specific prayers. Please be faithful to share with us how the Lord lays it upon your hearts to pray for us. I will be faithful in return to report how you have been used in our lives.

Goodnight & Lovebug Hugs,

A couple of pics of things we've talked about...

Here's a close up of the IV line that Connor had in his head where he received his blood transfusion.

Daddy, mama and Connor with our surgeon, Dr. Kim.
Thanks Dr. Kim for preforming a successful surgery for our little bug!!!

Today at sunset.....

During our experience here at Children’s Hospital I have not afforded myself the luxury of walking outside at sunset. Today, I broke the trend. While I was walking back down the long hallway from the cafeteria after dinner I spotted the glow of the setting sun through a far away window. I realized that with Connor still sedated, he probably wouldn’t recognize that I didn’t come right back from eating my dinner. So with a certain swiftness in my steps I hurried to the family room area where there is a beautiful deck that overlooks the facility here. As I stepped out into the brisk air, I breathed in a deep breath of “spring”. Yes, it’s officially springtime!!!! As I watched the sun bid farewell to the day I was struck with the colors I beheld. Upon one glance I would see an amber glow, and then after a single blink, the sky seemed to turn pink, purple and violet all at the same time. How does God do this I wondered? How does He, in His infinite Heaven, hold the stars, change the color of the sky and care for my “little bug” all at once? How great and how big is our God???!!!! It is awesome to behold His Greatness. It is humbling to know I am on His agenda. It is beautiful to watch His hand smooth away my worries and give me a glimpse of “Hope” in the midst of such uncertainty. Today at sunset my heart felt peace and my eyes beheld the glory of God and I am thankful I didn’t squander the opportunity to have such a powerful moment.

My heart has been in a quiet place today. With Connor remaining on so much medication and with his constant need for stillness, I feel a bit lost by not being busy about the duties of motherhood. I’m not comforting a fussy spell, I’m not changing the “poopies”, nor am I rocking my little bug off to sleep in my warm safe arms. Instead I am sitting in a hospital rocker chair with empty arms and tear filled eyes as I watch our son lay sleeping. This afternoon Connor’s team of nurses and doctors determined that he needed to stay on the ventilator for a couple more days. Because of that decision they had to re-tape the dressing of his ventilator. When they did this, Connor became very upset and agitated. Many of you may remember a while back that I wrote about what it was like to see Connor cry with this ventilator in and not be able to hear the audible sound of his cry. Today while this was happening I had my hand next to Connor’s face and when he cried I caught two drips of his tears in my hand. They were wet and they were warm and they quickly soaked into my skin. I clinched my fist to remember the feeling of his warm, soft tears touching me. I guess as a mother we always want to wipe our child’s tears away, but today, I just wanted to hold onto them a little longer as it’s all I had to cling to. Have you ever considered holding your child’s tears, so that, for a moment, you may become one with their hurt or pain or frustration?

This reminds me of the scripture in Psalms that says, “He catches my tears in His bottle.” Have you ever thought about that? Our tears penetrate the heart of God. So much so that he holds them and collects them in his bottle. To me, that is a message of incredible tenderness. This speaks so deeply to me that God does not dismiss our sadnesses and the concerns that cause us great worry. He collects them in His bottle and He cares for them. With His very hands He nurses our tears into joy. His concern for us is unique to our specific pain and whatever it is we are going through. Today, Connor’s tears taught me a lesson in tenderness. I can’t wait for the day to come where I will tell our sweet baby about the day mama caught his tears and how they changed my heart.

In the quietness of this day my heart is left with the question, “What is it that moves the heart & hand of God?” Is it our desperateness? Our questions? Our fears? Our pleadings? Our praise? Our petitions? What is it that makes Him move on our behalf? And I believe that my answer for today is that it is our sincerity. Out of the sincerity of our heart we request of God only things God can do. Only He can calm my heart and stop my worries. Only He can bring me joy in a sunset. Only He can heal our son or give us grace to handle each day of sickness. So if you ask me if I feel the Heart of God in our experience with Connor, I will say, with resounding refrain, YES! If you ask me if I feel the Hand of God upon our hearts, I will jump to my feet and say, YES! He is here with us, and though we may not see progress yet, we wait expectantly. We wait upon the promises of God to be poured out among us and we wait for His perfect hand of Love to rest upon our family.

Tonight I will go to sleep with tear stained hands, with a picture of a beautiful sunset in my heart and a feeling of peace knowing that we, the Robertson’s from Auburn, Washington have touched and moved the heart and hand of God. Thank you Lord for your revelation to my heart.

Lovebug Hugs,

Sunday, March 19, 2006

Sunday Evening Introspection

Mama looking into the eyes of her little bug and talking about better days ahead in the "Promised Land" (read below!!)

A view of our little bug with eyes wide open earlier today. Ventalator still in along with decompression tube in his nose that drains the air from his tummy.

Good Evening Faithful Bloggers ~

Today was another day of sedation for Connor. It is so hard, as his parents, to watch him in such stillness, but yet we know that God is healing him in that quietness as well. There were two times today that he opened up his eyes wide to see us. He was still on pretty heavy medication so we are quite sure that he wasn’t really cognoscente of seeing us, but to Randy and I it felt like a small gift just to talk with him and love him with his eyes looking in our direction.

It’s amazing what I see in those precious eyes of his. I see the beauty of concentration as he studies the shapes and colors and faces around him. It is always so fascinating to see the wonder in a child’s eyes, but when it is your own child it takes on a brand new meaning. I realize that Connor is wondering about “his” world, about “his” parents, and about his experience in this very hospital. And then I wonder…..Will he remember these white walls? Will he remember the smells of alcohol and sterilized tools? Will he recall the nurses’ faces that have cared for him? Will he remember that his mama was holding his hand? Will he remember the numerous pokes on his body that have caused him pain? Will he remember our voices whispering “I love you soooo much little bug”? Will he remember our bedtime prayers and stories?

There are so many feelings and questions that come to mind as I sit and let myself truly reflect on our journey thus far. There is so much spiritual significance to what we are going through that sometimes the parallels are frightening because I wonder what God might ask of us next. Just the other day when Connor went into surgery, my dear friend Jacqueline was here and she reminded me of the story of Abraham. When God called Abraham to go “to a land that I will show you” that was a pretty vague directive. There were a lot of questions in Abrahams mind, but what we see in God’s word is that Abraham was obedient. Did he have struggles along the way? You bet he did! Did he question God? He sure did! But what is so significant about the “journey” that Abraham and the people of Israel went on is that it led them to the Promised Land! I feel that this is what God is showing Randy and me about our journey. By faith we are walking day to day in a direction to a land that we don’t know. We have no idea how long it will take us and what detours we may have to take along the way. At times (most of the time) we don’t even feel like we have a map to get there, but one thing we do know….GOD IS FAITHFUL!! He will lead us to the Promised Land. How excited my heart gets to think about what the Promised Land is going to be like with our precious little bug. I’m sure we will run & play, and giggle & laugh, and hug & kiss, and learn & grow. But right now, we must heal first and gain strength for the next leg of the journey. Healing takes time, and healing takes patience and we must surrender ourselves to the process. Connor’s healing is coming to us in waves that we did not expect. We did not expect to be hospitalized and we did not expect to have such a medical experience these first weeks of his life, but this was intended on our map for our journey. I don’t think we can fully appreciate yet, exactly what God is doing and what he is showing us. But, we are trying desperately to make ourselves available to the Lord and to His plan for Connor and for us as a family.

Another spiritual parallel I see happened on Friday night, actually Saturday morning at 1am when the phone in our room rang and we were asked to come to Connor’s room immediately. When we arrived we were told that Connor had lost more blood in surgery than expected and he was in need of a blood transfusion. This threw us a little for a loop because we weren’t expecting it. After signing the consent forms they had to put an IV line in the top of Connor’s head because there were no other veins available. He received his blood transfusion over about a two hour time period. When we came back to bed, I laid there awake thinking about Christ’s blood that was shed to be infused into our lives. I wondered at that moment about the blood that Connor received, and I have to be honest I was worried about it being clean enough for Connor and I was worried that it wouldn’t be compatible with his body. But then the Lord calmed my heart and I felt this message from the Lord deep within my heart, “Lori, don’t be afraid. I have placed my blood inside of Connor to give him life and life more abundantly.” I have to believe that God gave me that message to give me peace and to trust him fully with our son. I am finding that there is a lot to trust God with when you have children. Our experience is not like most, but all of you parents reading this will resound with similar responses that you have had to trust God with your little angels as well. Being a mama to my little bug is teaching me so much about God, so much about love, and so much about trust. I wouldn’t trade our journey for anything in the world. Take me deeper in the journey Lord, I am ready and I am willing and we will faithfully go to the land that you will show us.

Lovebug Hugs,

Weekend Update...

Uncle Les, Auntie Marsha, Cousin Haley, Daddy & Mama with Connor.

Uncle Loren, Auntie Kathy & Cousin Kacie with baby Connor. If you look real close you can see a little stuffed "Abbey" dog on the back of the crib from Uncle Larry and Auntie Maureen. (Thanks guys, the dog is so cute!!!)

Hi friends ~

This weekend Connor has not had a lot of activity because he has been heavily medicated. Most of his moments have been spent sleeping peacefully. Since they wanted to keep him very quiet, I took some time on Saturday to retreat down to my folks house and check up on dad. He is recovering so nicely from his open heart surgery. His scar looks pretty impressive and I think my dad kinda likes to show it off!! HA! My mom is taking such good care of him and they are faithful to go on their daily walks to get dad stronger. Continue to pray for him because he is still in a time of recovery!!! I'm proud of you dad!!
Randy spent some time away on Saturday as well doing some dog training activities and we met back together at the hospital on Saturday evening. Today, Sunday, we were visited by lots of family and we had a great time visiting with everyone. Thanks for the visit Loren, Kathy, Kacie & Lindsay, Rick, Kathy & Sarah and Les, Marsha & Haley. We love the encouragement you bring to our hearts when you come to see Connor!!!

The doctors are starting to talk about weaning Connor off of the ventalator maybe tomorrow or Tuesday. Please pray that Connor can tolerate the breathing on his own and can show everyone what a big strong boy he is.