Monday, October 12, 2009

Step Down

Hope was moved to the step down unit today!  There are so many MIRACLES that we have experienced since Hope was born and this is yet another one.  We are totally thrilled with how well she is doing.  She is in a pod with another baby, but she has a 'big girl bed' and I decorated it with all her presents.  She looks so small (she has lost a little weight...she is now 5 pounds 7 ounces) in her bed, but it is a really nice bed.  Her room is smaller and there is only one nurse for 5-7 patients, so she doesn't get the individual attention she got in PICU.  I got to her room shortly after she was moved and she was pretty fussy.  A bunch of people came in to check on her and she gets fussy when so many people unwrap her all the time.  Her sats were pretty low, but they came back and have been staying in the high 70s. 

Dr. Prieto came in for a few minutes to check on Hope and us.  She told us that they want to keep an eye on her because her pulmonary artery seems to be kind of small.  She is thinking that just watching her sats will let us and her know if they need to take a closer look at the artery.  She also thinks it may be something that can be fixed when she goes for her heart catherization prior to her next surgery.

We should be able to start Hope on a bottle tomorrow.  She has been on full continuous feeds...that means she is getting 13ml per hour.  She has been handling the food really well...believe me, she is able to take the food in and definitely get it out (we changed 2 poopy diapers in less than 4 hours). 

I also have a couple prayer requests.  I met a really nice couple named Erica and Paul on Sunday.  They have a really cute little boy (I am pretty sure his name is Krylan, but not positive).  He has HLHS and is scheduled for his Norwood on Wednesday morning.  Please pray for their little guy and for them.  I know too well how stressful it is when your baby is getting ready for surgery.

My other prayer request is for Levi, Tracy, and baby Aiden.  Aiden was born on October 9th and has several heart defects (Unbalanced AVSD w/ Pulmonary Atresia and Heterotaxy Syndrome).  The doctors are not giving them very good news right now and they are in need of prayers.  Please keep them in your thoughts and prayers.  They also have a blog which you can follow:


I will post some pictures tomorrow.  I left my camera at the hospital, but I took a bunch of Hope in her new room.

Another great big THANK YOU to everyone for keeping us in your thoughts and prayers.  God is listening and answering them every day.  You are all a part of our miracle!


  1. Congrats on the step down step is home! So glad that things are moving along!

  2. Hi Paula! It's so wonderful that Hope is doing so well. I am so glad to hear your continuing good news. She is such a strong little girl!

  3. That's great news! You've got one strong little girl there!

  4. Let's praise God and thank Him for His miracle on little Hope's life. I'm continuing to pray for good news.

  5. That is wonderful news that she is out of the PICU! God really is giving you lots of miracles and that gives me hope for my Adam. Praying for many more miracles for you and that Hope will come home with you and your boys soon!!