Monday, March 27, 2006

Monday Update.....

Hello Friends ~
Today was a day of consultations for Connor. I met with the Pulmonary specialists this morning for over an hour and they started their preliminary assessments of Connor. They were honest from the start that we wouldn't get any results or feedback for a while because they want to observe Connor and assess him over time. They felt that Connor's heart was a very big part of his lung disease and the bottom line came down to the fact that he probably isn't going to get too much better until his heart is fixed.

But, we all know that he can't get his heart surgery until he gains weight and this was another frustration today. When Connor was weighed last night it was reported to me this morning that he only weighs 7lbs 7oz. I was shocked!! I thought we had made it to that 8lb marker that I wrote about a few days ago, but they told me that someone must have caluculated wrong because their records didn't show a weight of 8lbs in his records. UUUGGGGHHHH!!!!!!!!!! I definately had a hard time with that because I thought we were actually gaining weight. The truth is that Connor has only gained 11 ounces since he was born. That measures out to an ounce a week. For those of you who might not get the severity and frustration of that let me put it in clear terms......THAT'S NOT GOOD!!!!!!!!!!!! Connor is working way too hard to stay alive!!! By that I mean that Connor is expending all of his energy breathing so that none of his calorie intake is able to be applied to growth calories!!! How frustrating this is to me!!!!

Needless to say Mama spent the day overwhelmed with the reality of our situation here. I got away for a few hours to get a much needed haircut today. My body was away from Children's Hospital and away from Connor, but my heart and mind were here the whole time. So many of you have been encouraging me to take some time away from the hospital to gain a new perspective and take care of myself. Thanks for the encouragement towards self care, but I never really realized how hard it was truly going to be. During the hours I was gone I struggled with the guilt of not being here and with the realization that Connor would wake up from his little naps and Mama wouldn't be watching over him. Today was a true test of me trusting the nursing staff to care for our little bug. As hard as it was, I did get fresh air. I did see the sunshine and feel the warmth of the sun on my face. I did get a much needed haircut. And I did stop and get a 31 flavors ice cream cone. When I returned, Connor was fast asleep and he looks very comfortable.

We are moving rooms tonight in the ICU. We will now be in room #4143 which is a room right outside the nurses station so they can keep a closer eye on Connor when we happen not to be in the room. It is a private room, so for the time being we won't have any roommates.

Tomorrow we will once again have a meeting with the Cardiac and Pulmonary medical teams to hopefully set a plan in motion for Connor. We will also meet with the Ear Nose and Throat specialist and they will do a scope test of Connor's upper airways to see if there are any obstructions that the x-rays aren't showing. I will keep you posted on our progress tomorrow. Daddy remains at home going to work for the first part of the week and will rejoin us here on Wednesday night.

Lovebug Hugs,
Lori

11 comments:

Anonymous said...

Oh Lori,
I hear your frustration and understandably so. I'm glad you were able to get away for awhile today and catch a breath of fresh air. We are praying for encouraging reports tommorrow and for weight gain for your "little bug" Wow! he is a fighter! Jesus, renew Lori & Randy's strength, Jesus fill that hospital room with your prescence that everyone who walks in the room will know that you are there with them and will sense your prescence, give Connor and his Mommy & Daddy peaceful rest tonight.
we love you three!
Love, Sue

Anonymous said...

Lori & Randy:

We just wanted you to know that you and little Connor are in our prayers! What a little darling he is!

With love,

The Carlson clan (Rollin & Helen, Rob & Lisa, et al.)

Bianca & Jeremy said...

You don't know me Lori but I ran across your blog a few weeks ago. I've been checking up on and praying for Connor nightly. Know that even those you don't know are praying for you and hoping with you for a speedy recovery. I can't even imagine how hard this is for the two of you. Imagine how much harder it'd be without the eternal hope of Jesus.

Bianca & Jeremy

Anonymous said...

Lori, Every morning and every night I come in here and do a check up on you all. Lori, I see an open field, the colors are so beautiful, brilliant green grass all over and the flowers are so plentiful, down the pth away is a long but small rippling river, with a arched bridge going over it, on the other side, is a six foot log, with a soft patch of grass nest to it, the air smells like sweet honey, the temperature is warm enough to not have to wear a coat, yet crisp enough to be refreshing. This is my quiet place I go to in those times I need emotional rest and strength from the Lord, I am loaning it to you Dear Friend. Sit down in the grass Lori, lean against that log, close your eyes, and breathe deeply, and slowly in through your nose and out through your mouth, several times, imagine you are laying your head on our eternal daddies lap, and He is gently gliding His Hand over your hair, and just saying Shhh sweet Daughter, shhh, just rest in me, I will be your strength, I will be your comfort, I will fill your every need, I am your provider, I am Jehovah Jireh. My Grace is suffiecient for thee. This can be your retreat Lori, as well. I love you sweet sister. Darina

Anonymous said...

Lori
Even though some of the news you got today was not the most encouraging..........remember all the words and promises that you have received from the Lord in regards to Connor. It must be really hard at times to hold your head up high and to have all the strength that you need, but this too will pass. I am sooo glad to hear that you went and did a few things for yourself today, it must have been tough but please do not feel guilt because by taking care of you is one of the best gifts you can give Connor right now.
Take care and we are praying!
Love
Tammy

Dad and Mom said...

Good Morning Lori

We are praying so much for you and Randy and Connor. Today we pray that the doctor's and all the specialist's will be so directed by the Lord and that He will show them what to do. Oh precious Connor we pray that Jesus just gives you so much strength when the doctor's do all their examing and you keep on fighting in your little body.

Lori know that there are so many people praying and you are not alone in Connor's room when you meet with all the doctor's their is that great cloud of witnesses there to encourage you. May the Lord be with Randy too as he is at the base today and his thoughts too are in Connor's room. These are the time's that it's so hard for parent's not to be right beside you you may not see us but we'er there.

Give Connor a big love from grandpa and grandma and maybe a butterfly kiss too. Pretty soon he'll be giving us all butterfly kisses with his long eyelashes :)

In my Bible I have alittle prayer written on a piece of paper written by Ruth Graham it says:
Lord, still my anxious heart to calm delight for the Great Shepherd watches with me over my flock by night.
Remember too the verse in Ps. 5:3
In the morning, O Lord, Thou wilt hear my voice; in the morning I will order my prayer to Thee and eagerly watch. Oh Lori the Lord is right there with you and He knows every detail and He loves you so much and He is holding Connor and you and Randy.
We'll talk to you later today ok love to you a whole bunch.
Love dad and mom XOXOXOXOXO

Dad and Mom said...

Oh Lori a couple of times one of your favorite verses has come to my mind and I forgot to write it to you. God has a way to remind us so wanted to add alittle PS
Ephesians 3:20-21
Now to Him Who, by (in consequence of) the [action of His] power that is at work within us, is able to [carry out His purpose and] do SUPERABUNDANTLY,far over and above all that we [dare] ask or think infinitely beyound our highest prayers, desires, thoughts, hopes or dreams...To God be the glory in the church and in Christ Jesus throughout all generations, for ever and ever. Amen (so be it)
That's from the amplified version we just pray that God's word brings life into every moment of today.
Before saying goodbye give Connor big loves and big loves for you and Randy too.

Love always, dad and mom XOXOXOXOXO

Anonymous said...

Hello Randy and Lori,
How exciting to hear the report about Connor doing much better. The story of the smile make my eyes leak as I imagined Randy holding him and seeing the first smile. No doubt that meant more than anything on this earth to mom and dad after all that you have gone through. We sure are praying for you and love you much. May God's healing power continue to flow through Connor until he is up and out of the hospital.
Blessings upon you,
Dan and Diane Larson

RNP said...

I have been quietly reading your blog for several days now. While my little one did not have cardiac issues, she has had massive respiratory issues. She spent about three months of the first year of her life in the hospital. The highs and lows of both the good and bad news can be a bit overwhelming at times. It often felt like with every bit of good news, two bits of bad followed. Just when you think that you have overcome one thing, something else creeps up. As he grows you will notice that the joys will begin to outweigh the challenges.

I can completely understand the weight gain issue, and the using of all available calories just to breath. She was on a 32 cal per ounce diet in the beginning and remained on 27 calories per ounce the entire first year. She had an ng tube, oxygen, you name it we have been through it in terms of lungs. My little fighter has tracheal-bronchial-laryngeal-malacia, subglottic stenosis, chronic asthma, and GERD. Basically what this means for her is that everything from the back of her throat to the bottom of her lungs is compromised by the most simple invasions such as upper respiratory infection-and often times aspiration. When it is difficult to breath it makes everything else so much harder-I cannot imagine compounding this with a heart condition.

We do still have quite a bit of medication and some standard hospital equipment in our home, but we have come such a long way from those days as a newborn in the hospital. I never anticipated that my little girl would overcome such major health difficulties so well.

Many never expected to see her meeting typical milestones on time-but she surprised everyone. My Elainah is an amazing little girl, and she is quite active. She has been a little fighter since the day she was born, and it is obvious in all that she does.

It so wonderful to see all of your emotional support, and it is easy to see mom, dad, and Connor are loved and all very strong. I believe that once you get beyond the current hurdles you are facing things will be brighter again. From what I have read, you are in a fine hospital with many doctors concerned about your little bug’s success.

One day you will look back upon this difficult time as a memory, and you will be quite impressed with how well everyone stepped up to the plate and managed the times when things were uncertain. Most of all you will be so proud of your son… and these times will pale in comparison to the joy you share daily with your little bug.

Your family is my daily thoughts and prayers.

Rebecca P. in Woodhaven, MI.

Barry & Heidi Henninger said...

Randy, Lori, & Connor...

Everybody else has already said everything. Just please know that we are continuing to hold all of you up in our prayers. God will bring you through this!

Barry & Heidi Henninger

Anonymous said...

Have been reading with interest your blog. You should some day think about writing a book to help other parents of special children. Want you to know that Connor is now on a prayer chain in Kennewick, WA. and also in the National Shrine of St Jude in Chicago. Your blog is the first thing I look at in the morning and the last one at night. Please know that you are all in our prayers.
Pat and John Welsh