Monday, June 8, 2009


Right now my heart just breaks for every parent who has ever had a sick child, for every parent who has dealt with a child with a disability, for every parent who has worried and cried and fought for their kid. For every parent who tried to figure out how to not put their healthy child on the back burner while they cared for a high needs child. For every parent who tried to navigate the nine million voices telling them totally different stories about their baby. I never knew it was so hard. My heart goes out to you all.
I feel stretched so thin sometimes that the stress feels like an acorn falling on a spiders web. Little Lady is a trooper but she's still two and struggles with not having the same attention as before the baby. As much as we try and shield her...she senses and sees our stress and it makes her sad. It breaks my heart to hear her cry.
Our Little Lancelot (his new name on here) is not doing so hot. The health nurse came today and he is still losing weight. We now have to basically force feed him both breast and formula in hopes that he will soon start gaining. Because his condition causes him to work so hard to breath he burns more calories than the average baby and also gets more tired trying to eat. Tomorrow we see the pediatrician who has suggested supplementing with some extra calories. If he can't get back up by himself we may end up back in the hospital...which is one of my greatest fears.
I'm not feeling well and my body is having a rough time recovering due to all the stress. I have contracted a yeast infection to top it off and I feel like a steam roller has stretched out my whole body. Food is completely not appealing and I have to force myself to eat. Whenever I am not force feeding my son I am trying to give Little Lady at least a small bit of normal. I try to do a craft or have a cuddle. Maybe take a stroll to the slides at the park. I find her very healing.
Prince Charming is my hero and my champion. Taking over the feeding when I can't, cleaning up whenever he can, supporting me with hugs and holding me when I cry, trying to be a good dad to our daughter, and in between all that trying to squeeze in some homework so he can hopefully still pass this semester. He too is feeling very fried.
Little Lancelot, although he worries us sick with his desaturizing when he cries, his horrible sounding breathing, and his lack of good feeding is otherwise a little ladies man. He has already given us some very real smiles and he is a very alert little boy who loves to coo and cuddle and check out the world. He is far more alert than his big sister was at this stage and is very entertaining. Of course he is most awake at night while his sister is an early riser. It just figures they would plot against us that way. Sometimes when he is settled I can almost pretend we are a normal family of four. Unless you hear or see him breathing during a bad spell or listen to his cry, unless you know how we have to force feed him or you see him get pissed off and turn would think he was a normal healthy baby boy. He is tall and strong and incredibly alert. He coos and smiles and responds to stimuli like lights and sounds instantly. Strangely enough although he can't seem to gain weight he pees and poops like a champ! But...he is not a 'normal' healthy baby and a lot of the time my heart is just breaking.
I remember once when Little Lady was young I was nursing her in the baby room at The Bay and another mom was nursing her baby at the same time. Her baby sounded like my Lancelot. At the time I had never heard a baby like that before, it sounded terrible and I remember asking if he was ok. She answered that he was fine, that it was normal for him. I remember being so grateful my baby didn't sound like that but it never occurred to me that there was actually something wrong with him, that his mother might be tired and stressed and scared and maybe even insecure. I think about that a lot now. I wish I could have showed her some compassion.
Please pray for our family.
Pray for Lancelot to start gaining a good amount of weight and get stronger.
Pray for complete and quick healing of his vocal cords.
Pray he will not contract any viruses as they will put him in great danger and make his recovery much harder.
Pray he will learn to cope with things and stay calm until he is healed so that he will not desaturate.
Pray for Little Lady to feel very loved and to adjust to the added stress and less attention.
Pray for Prince Charming and I both individually and as a couple.
Pray for my parents who have plenty to handle in their own lives but are still trying to be there for us.
Pray that soon we will see a lot of light at the end of this tunnel.

Thank you again for all your prayers and support.


LeRoy and Faith said...

I'm praying!!!

Chelsa said...


could you email me your address? i want to send you something.

amy said...

Keeping you all in our prayers and think of you often.

RLE said...

I have been thinking of you and am praying for your family.

Earl & Ramona Reimer said...


Stephanie said...

Praying for you and thinking of you.

Your "blog friend,"