From the Little Lady

A few phrases my Little Lady has recently learned...


"I don't want any more cereal mommy....trust me!"

Prince Charming: "Would you like a glass of milk or something before bed?"
Little Lady: "Chances are I'll want a glass of milk."

Shadows to Sunshine

This morning we awoke to the roar of rain. It was not just a pitter pat but an all out downpour. Dismal, dark days are so depressing so I decided to try and make the best of it by making it a relaxing indoor day. Just books and movies, crafts and cuddling. Around noon the sun suddenly made an appearance and the once gray skies turned to brilliant blue...the chill of rain was replaced by bright warm rays. I thought to myself "How can such a miserable morning turn into such an amazing afternoon?"

Then it was like a ray of sunshine snuck inside and lit up my heart with hope...like a promise. Lancelot's little life may have had a pretty bleak beginning...but there is sunshine on the horizon. Then later this afternoon the local public health nurse came by to check Lancelot's weight and see how he is handling going back to the breast a little more and not being all on the bottle. I was excited to see the scale climb and hear that he has gained an entire pound since his visit last week with the pediatrician! He is now 10 pounds 11 ounces at six weeks old. That's up almost three pounds since his after surgery weight at two weeks where he was 8 pounds. Now we continue to try him back on the breast and see how it goes with weekly weights from public health. We also wait for our scope on the 20th and pray for a miracle and a vocal cord that is no longer paralyzed. Please continue to pray with us. Our church is also having an anointing service for him tonight.

We do praise God for his beautiful promises of his presence! We also thank him for the hope we have. Here is another promise a friend and mentor shared with me last night:

"Fear not, for I have redeemed you; I have called you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior." Isaiah 43

Family

This weekend my husband and I attended the annual national convention of the church conference we are a part of. Raised as a pastor's daughter within this conference I spent my summer's as a child traveling to wherever this conference was being held and grew up calling many of these people "uncle" and "aunt" as we did not live near my extended family. It has been several years since I have attended this convention but I was blown away once again by the way the people of God really can be a family. My husband and I must have had 15-20 people, many that we didn't even really know, come up and tell us they and in many cases their entire church, had heard of us and had been praying for us and our son. After one such case where a man we didn't know came up and asked "Is this the baby we've been praying for?" my husband even welled up. I have seen Prince Charming get tears in his eyes only a handful of times. How amazing to know that people you don't even know care that much about you?

We sang a song this weekend at the convention that just seemed to speak to exactly where I have been at. I've had some issues Spiritually since Lancelot's birth. It's been difficult to deal with everything going on and so I have had a hard time having much of a spiritual life....but through it all the one thing I have been reminded of is my son's name. It means "God is my salvation". And although I do not understand all we have been through or why I am reminded that my God is still here and He has been and will save us. Here are the lyrics:


I am not skilled to understand
What God has willed, what God has planned
I only know at His right hand
Stands one who is my Savior

I take Him at His word and deed
Christ died to save me; this I read
And in my heart I find a need
Of Him to be my savior

That He would leave His place on high
And come for sinful man to die
You count it strange, so once did I
Before I knew my Savior

Chorus (2x's) My Savior loves, My Savior lives
My Savior's always there for me
My God: He was, my God; He is
My God is always gonna be

Yes, living, dying, let me bring
My strength, my solace from this spring;
That He who lives to be my King
Once died to be my Savior

That He would leave His place on high
And come for sinful man to die
You count it strange, so once did I
Before I knew my Savior

Chorus (2x's) My Savior loves, My Savior lives
My Savior's always there for me
My God He was, My God He is
My God is always gonna be

My Savior loves, My Savior lives
My Savior loves, My Savior lives

A little ray of sunshine

Every day I try to see the sun but sometimes even when the days are completely cloudless I find myself feeling as if everything is just dark and dismal shades of gray. I know I am battling some post baby blues and maybe even a bit of post partum so I try not to let the feeling affect me to much, but sometimes it's still so hard. I still worry so much about my son and his health and even though I try to let some stuff go I find it so difficult. Sometimes I struggle with the exhaustion, sometimes with the stress. I go through every emotion in the book. From peace and hope to worry and anxiety. From contentment to resentment. It's hard to struggle with health issues for your child while the rest of the world carries on. Most of all though what I struggle with now is something I would compare to what I hear about post traumatic stress disorder. I get flash backs to the hospital where I get nervous and uptight. Certain smells or sights make my chest feel tight. It reminds me of when I was a teenager and was in a car accident and how I felt driving on gravel or curved roads for months afterwards.
But there is some sunshine in our lives. At Lancelots last pediatrician appointment this past week we were told we can now wait to go back and see her til his 2 month appointment rather than have weekly check ups! Although he didn't gain nearly as much as he had been gaining on the enriched food and forced feeds he still gained and she decided that it was enough to allow him to continue the way he is for now without weekly checks. She also felt he was doing quite well and that we could bring him out more now. We do still have to be very careful and not be around anyone with a virus or allow a lot of people to hold or touch him. But at least we can go out a bit more now. We are also finding that he can cry harder and longer all the time without turning blue. It's still nerve wracking to watch but it's a huge improvement!
On July 20th we have Lancelots next surgeon appointment where they will do a scope to check if the vocal cord function has returned. Please continue to pray for this appointment and that his vocal cord will be fully functioning. We so badly want to be able to put this completely behind us. If we get good news at this appointment we may still be able to visit Prince Charmings parents later this summer yet. They still have not seen him and if we don't get the go ahead to fly it will be a long time before they can because they can not travel either due to also having health issues. We continue to pray for complete healing.
We are also seeking some other altneratives to help Lancelot. We saw a massage therapist this week who showed us how to do some infant massage on him that will hopefully help relax his muscles and heal his nerves.
At the end of the day...despite our exhaustion....we do have a beautiful baby boy who gives great smiles and who otherwise is sweet and strong. That's a lot of sunshine in itself.

God of my Hope

I entitled this post "God of my Hope" for two reasons. One is that God has given us so many moments of hope in the past few weeks and two is that, despite these incredible blessings, it is sometimes SO hard dealing with a not completely healthy baby that I am at the absolute end of my rope more often than not and just needed that phrase to hold on to.
I realize it's been awhile since I last wrote and I wanted to get an update out again but generally the only time I have to sit at the computer is when my hands are busy with a baby, making it a little unmanageable to type. However both kids are currently asleep and even though one is in my arms I think I can still manage typing with two fingers!
Tonight and a lot of yesterday as well as most of the evenings in the past week or so have been incredibly stressful. Sometimes even when we have great days I am a wreck by bedtime because of the stress of our evenings. Taking care of supper and two kids bed and bathtimes can be tricky enough but when you have a toddler who is exhausted and lonely by bedtime and a baby who is colicky but isn't supposed to cry....well you can imagine the ensuing drama.
Here is some of the high points that I try to focus on to stay positive:
-Lancelot had another appointment today and the doctor was very impressed with his progress. He is now 9 pounds 8 ounces (up from 8 pounds 13 ounces (birth weight) a week ago) and 23 1/4 inches long (up half an inch from last week and 2 inches from birth). She also feels his breathing has gotten quite a bit better and that he is looking much healthier. In fact she said that she feels quite confident that his vocal cord function will return...when she doesn't know...but she feels that it will and this will not be a lifelong problem. She even gave us some hope that by the end of the summer we MIGHT be able to travel and be a "normal" family already. For now we are not quite there but it was good to hear the hope that someday we should be there. Also, the doctor has requested that this next week we demand feed him like a normal baby rather than force feed him or enrich his calorie intake. She wants to see how he handles it. If he can do well this week without any feeding help she feels we will be able to stop weekly doctors appointments and see her only at the regular check up times or for other issues as they arise (which hopefully they dont)!
-We have been able to take Lancelot out on some errands recently which has been a relief. We even got him to sleep in his stroller while we took Little Lady to Tinkertown this past weekend! We had to do a lot of hand sanitizing and kept him covered in his car seat the whole time but we were able to get out and experience a taste of normal life with a toddler again. It was healing for all of us.
-Slowly we are able to handle short periods with only one parent and two kids as we learn to balance and better anticipate Lancelots needs. It's one step closer to being back to a normal life.
-Lancelot has done a lot more crying and although this is not good we have noticed that he is not turning as blue as easily and his cry is also getting a lot stronger...both great signs!

Here are some of our current concerns and prayer items:
-That Lancelot will handle this next week exceptionally well so that we will be able to stop worrying about his weight gain and will no longer need weekly appointments. Today was a bad start to the week as he didn't eat well and had a terrible stomach ache or something this evening that had him screaming and therefore not eating.
-That Lancelot's colic or whatever it is would calm down. Of course we realize baby's cry but a baby who isn't really supposed to cry and who wears himself out and won't eat is extremely stressful.
-Little Lady has been having some potty problems which we are thinking we need to check with the pediatrician about. Hopefully they are nothing and just related to a mixed up schedule that she will soon adjust to but it is a little worrisome.
-That we will be able to handle more one parent and two kid scenarios so that Prince Charming can return to work during his time off school this summer. If he can't we will likely have to quit school early for him to return to work because this whole sick baby thing has completely blown our budget.
-That the thrush that Lancelot has once again will quickly disappear as will his reflux.
-That none of us will catch any bugs anywhere and bring them home. We still have to be careful, although we have been given a little more leeway. On that note....my health is a bit of an issue as I have been having a lot of headaches and have recently almost passed out on a couple occasions. It's likely this is just from stress and lack of sleep but still.
-That Lancelots vocal cord will return to full function. We asked our pediatrician today when we could possibly take a trip to visit family in another province and she felt she couldn't give the go ahead for us to fly anywhere until Lancelot has zero episodes of turning blue and is completely healthy. This is frustrating since we don't know when that will be and sometimes I worry we won't ever get to that point. But the pediatrician feels confident we will...it's just a matter of patience while we wait for the "when".

Please continue to pray for our family. We feel your prayers and greatly appreciate them. We praise God for how far he has brought our family in the past few weeks and continue to pray as we hold on to him and his promises of hope for our future.