Laurie’s Story

Site created on March 14, 2019

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Newest Update

Journal entry by Laurie Steehler

Annemarie came into this in a whirlwind and she is leaving to come home in the same fashion. Keeping her parents on their toes. 

So Annemarie was just still struggling with feeds early this week. St John’s finally decided they had given her all the love and resources they could. So on Wednesday afternoon little (not so little anymore) Miss Annemarie was transported to Children’s in St Paul. Unfortunately Masonic Children’s was full. She got to ride in the ambulance and was champ. Brian had taken the week off from work so we followed and when we got to Children’s we got settled and she got settled in what our new home away from home would be. 

First the room room it was like going from an okay hotel and then going to the Ritz. She was in her own room. All the babies are in their own room. The rooms were set up cribs, monitors, sinks, counter space, cupboard space, fridge for breast milk, chair, couch that pulled out, breast pump, supplies for baby. I mean fancy. Brian would say the hand washing station was his favorite. Haha but, seriously Children’s has it figured out. Immediately we felt the care was also top notch. Since she came in late in the afternoon not much was figured out. Tired a bottle a couple of times and she was just not having it. So we were prepared and totally okay for a tube to help her get caught up. Children s also has great things for families, a family play area, resource center, Ronald McDonald House, and just makes you feel comfortable and at home. We had dinner Wednesday at the Ronald McDonald House and then shortly after went home. Knowing more info would come Thursday. 

Thursday morning Speech Therapy worked with Annemarie right away and it was decided to do a swallow study. At 11:30 she went down and it was determined Annemarie was silently aspirating. Just a little bit is enough to cause pain and discomfort and aversion to eating. We were able to be there and it was crazy to watch and then see that just a drop I mean the size of a piece of sand probably but that’s enough and then it builds up. So they tired her on thickened liquid think of it as honey. She did well, we are going in for a follow up swallow study end of August. To see how she is doing. So Annemarie was immediately put on the thickened liquids, what a change feedings went from sometimes being a struggle to her downing 60-90mls in 5-10 minutes. She has done so well over the last two days that we are going home this afternoon! 
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