Thursday, August 18, 2016



I apologize for the delay in posting. These past three weeks have been overwhelming. I need to apologize to all the mothers I have ever offended by saying, "Don't you get bored when you stay at home?" Oh if all of those preciously patient women could see me now. I am a mess. I am lucky to shower at noon when Mike gets home for lunch. It seems like if I am not feeding her or pumping I am holding her because she is fussy. I feel that a 'routine' is nowhere in sight. 

When Louisa came home from the NICU, Mike had to go back to work so I was parenting solo and there were lots of tears. In the NICU Louisa nursed like a champ. She would eat and nurse every time I was there. When I brought Louisa home, she would not nurse and would hardly take her supplement from the bottle. As I stated before, there were lots of tears. Many of my close friends have given me all kinds of perspectives when it comes to nursing and even with all of that prep I still feel like a failure.

I was told by a couple of our doctors that babies with Downs often don't nurse well, however, because I have pride issues I refused to accept that fate. When Mike and I found out we would have a little girl with Down syndrome I remember thinking to myself, 'she is going to be exceptional'. There is a lot I need to learn about Down syndrome but what I have already found out from other parents is that every single child is different. Crazy right... kind of like children that don't have Downs. Your first child will most likely be different from your second and you are different from your spouse. I assure you I am not living in a place of unrealistic expectations but I also don't want to lessen her opportunities because I choose to categorize her a certain way.

I promised myself I would not stress about her not nursing and I am going to continue to try everyday to nurse her during one of her feedings. Once Louisa went to only nursing once a day I started to exclusively pump which is a load to bare. 

We went to our first doctor appointment last week and little girl lost weight. This shouldn't have surprised me because she wasn't nursing well, but in true Momma Hilary fashion I had to cry just a little. We saw a lactation consultant who changed our feedings and today when we went to the heart doctor she gained all her weight back AND some! 

I may sound old when saying this but I am amazed by the medical technology that is available! I mean seriously. Phillips has created these tiny EKG stickers that are placed on baby and they BAM an accurate EKG is done in 15-20 seconds. Our heart doctor is Dr. Cottrill, a 71 year old WONDER woman. I promise you cannot say her name to anyone in the medical field without them absolutely RAVING about her. When you walk into her office there are 5 walls FILLED with pictures of little patients she has seen over the years. She has written articles and articles have been written about her. Dr. Cottrill is truly a blessing. I know she has been told that for years but I pray she feels the Lords presence in her work. 

Louisa's oxygen level was 94% and Dr. Cottrill said she doesn't really hear her laboring to breathe. All of this is precious words to my heart because we were told her breathing would be labored and she wouldn't have a lot of energy to eat, but little girl has abolished both of those expectations. We will keep you posted and continue to share updates of our sweet girl. Thank you to ALL of you who have been praying for her. I feel your prayers and I am truly so grateful for them.

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