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Ella's Journey

Our sweet girl Ella was born with Gastroschisis. We created this site for family and friends to stay updated on her progress to better health.

Latest journal entry

Hospitalized again.

It has been more than awhile since I have been able to sit down, relax, and write as I love to do. I am grateful for this time to reflect, even in this setting. 

As I mentioned on my last post, Ella had caught some sort of virus and as of now… that virus has only gotten worse, landing us back in the hospital. With each week since being discharged, her cold has only become worse, to the point where she has vomited too often for her existing electrolyte abnormalities. She started having blue/purple spells from coughing so hard. Two weeks ago, we had went to her primary care Doctor and she sent us home with a nebulizer to see if that would be beneficial. We did that all week, then last Thursday we went back and she hadn't gotten any better, so the Doctor sent us home with another solution to use with the nebulizer. Those didn't seem to help. As my mama instincts always serves me right, we decided to have her checked out Yesterday by Children's themselves as they know her quite well. She was admitted and they have been closely watching her. Her lab results came back looking quite well, other than her white blood cell count being high and her calcium levels being more on the high end. As for weight gain she is close to 14 pounds! 👏 

Some have commented on how difficult it must be to have Ella readmitted time after time. It hurts to see my baby sick, but the process of having to be back in the hospital and living life here again has become somewhat normal. I have come to complete acceptance. Somedays I long for a "normal" life, but in reality, no one has a "normal" or perfect life. We all struggle in different areas of our lives, and as we continue going through the motions of this particular trial we have faced… I find myself remembering those who struggle inwardly as those often never show. To you out there, struggling with something that may not be acknowledged by others due to it being more personal, marriage, family, know that we have remembered you in prayer. I know our situation may seem more significant, but putting it into perspective, no matter what trials we go through in this life… each one of them are significant and deserve the space to be felt and acknowledged too. Our family cannot express the gratitude to those of you who have remembered us and helped us these past 6 months, we need support and love from those around us during difficult times even if we think we should deal with it all on our own. 

This past week Ella hasn't taken anything by mouth due to her aspirating while bottling. Today she had her first bottle in a week and was able to drink 3 ounces!! YAY! We will continue to bottle her first, then whatever she isn't able to take by mouth we will put into her GJtube. Her strength is quite obviously less but we are hoping with time, as she kicks this cold, she will be able to bottle her full feeds again. It would make our life much easier if she would be able to bottle everything as she did before, but these little hiccups are to be expected being her condition.

With that being said, my goodness gracious… I am ever so ready for the snow to go and the warmth and sunny days to come. I see that burning light of hope, in the near but what seems so far, future. This long winter has spent our days of wanting to stay cozy indoors, cabin fever is a real thing. Contentment has always been difficult for me, so whatever these days bring (even the blizzard happening outside right now) I try to redirect my focus to being content in that moment. I often fail, but ohhh how grateful I am for God's grace. And in many ways, this experience has taught us things we would have never known. 

As our life continues, the future is unknown… We pray for strength to continue trusting God and his plan with our Sweet Ella dear. Thank you to our parents for caring for Camilla during this hospital stay and to those who have offered to help in any way you can and to all of you who continue to remember our family in prayer. 

Last Sunday, my parents had our friends from Finland over so we went visiting there too. We spent the evening singing and oh how music soothes and heals. I'll share a verse from on of the songs we sang that evening… a good reminder to be grateful and trust God as he will care for us. 

Hymn # 341 - Verse 1

Oh, look at the bird on the branch of the tree; / its singing is always so lovely. / It opens its mouth to thank God Almighty; / no cares weigh its mind, it sings freely; / in singing it thanks its Creator. 

 

 

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