Sunday, July 25, 2010

A little update

Natalie did get down to 16 on her MAP but then started to struggle. Wednesday and Thursday her O2 requirements climbed and ultimately reached 88% Thursday afternoon. This was a huge disappointment and very frustrating. We met with her doctor and the theory is that they moved on the MAP a little too quickly. In addition to that, not all the nurses were calling respiratory therapy for suctioning and position changes. The RT's can increase her MAP for a short bit during those times so that she does not lose ground. Any time she loses alveoli during stress/suctioning it takes a good amount of time for those alveoli to be "rerecruited" and useful again.

An order was written for RT's to be present for suctioning and position changes. In addition to that they asked that she not be moved more than every 8 hours.

Her MAP was increased to 17 and she recovered slowly. Saturday morning it was reduced to 16 again and she seemed to be maintaining her O2 levels. Today she is up a little bit again but I am hoping this is just due to agitation. She is quickly annoyed when she wakes up and notices the ET tube. It will SUCH a blessing when that can be replaced with a trach.

Tummy wise she is doing well. She continues to impress us with her dirty diapers. Seeing as she has not eaten in weeks it is a wonder where she was hiding it all. The standard protocol is to wait ten days following the first good X-ray before starting feeding. She is on day 6 or 7 so if all continues to go well she will start feeds later this week.

We have reached a time where even more patience is needed. The doctors do not say "when" she gets off the oscillator but "if." Living in this limbo is draining in ways I can not explain. We have not been able to hold Natalie in weeks and I am really feeling the loss of all the normal mothering I would be doing right now. I just want my baby.

I am trying to find new ways to approach this wait and new ways to manage the stress. If anyone has some good advice for living life in a prolonged state of survival mode I am all ears.

Annie is doing well. She started preschool last week and loves it. I am grateful for her to have a place to go that is just for her. There are two little girls coming to sibling watch at the NICU now and she is really starting to open up around other little children. It is so sweet to watch her play and make tentative steps toward friendship.

Thank you again for your continued support. We certainly can use all the good thoughts and prayers we can get.


  1. Hi Jennifer,

    I wish I could give you some amazing words of wisdom but I don't have any. You are going through a terrible ordeal and your strength absolutely amazes me. You are one incredible woman and mom!

    The only thing I will say is for you to always know that God loves little Natalie as much as you do and he is always holding her, even when you're not. Someday you will be able to hold her as much as you want and how precious that time will be to you!

    Stay strong and I will continue to pray for all of you.
    Hugs and prayers,

  2. Jenn - my heart breaks fresh for you everytime I hear how many struggles you deal with on a daily basis. I cannot imagine how those "ifs" haunt you. I so wish things were different - that you could hold your baby girl, that you could take her home.

    There is nothing that we can say to bring you comfort but please realize that God does hold this little girl in his hands and there are so many prayer warriors going to the throne for her God has got to be listening and I do believe you will get all those things - in Gods timing.

    We will continue to hold her and you in prayer daily. Sending many many hugs your way!

  3. They told me I would be going to see him attending school with a vent and trach if he were able to get out of the hospital so hang on my dear because 4 years later we do not have any except oxygen at night. Remmber it is up to her and what mission the Lord has for her on this earth. You will make it make sure you get lots of sleep so you can keep going. Try to stay up beat even in the face of all the struggle but tears do wash the pain away so you can face the next rough one. You will be ok there are many prayers for you and they count lots.

  4. Hi Jenn!

    I feel like I get so wrapped up in our own war our here in the west that I'm out of touch for a while, but I really do think of you all the time. You guys are our battling buddies of the east.

    I will tell you that I broke down at church today. Fortunately I was with just my husband and two other people, but I couldn't stop the tears. They do help. You really are such a strong woman. And you have such a strong little girl. I do mourn right along with you the things that we should be doing with our babies right now. That they should have been home a long time ago, not hitting one red light after another on the road out of the hospital.

    Wish I actually had some advice, but right now all I can offer is my complete empathy in some areas where we have traversed the same ground and sympathy where our paths have diverged. Keep your chin up.

    Hm, I did just have another random thought. One thing that I have found kind of distracting is creating a Timmy soundtrack. As I ride the ups and downs, I get song lines in my head that express what I'm going through so I come home and add that song to the playlist on my blog. Guess it's also a way to let everyone know how I'm feeling beyond the words I write.

    Lots of love to you!

  5. Hi,
    I just found your blog and I'm glad I did. I will certainly be praying for you and your family. God bless.

    ~ Yaya

  6. HI! I just happened to find your blog while looking at food freezing ideas. I am so sorry that your daughter is having problems and is in the hospital. My son had heart surgery when he was 3 weeks old. He had a heart catherization at 3 days old. He lived in the NICU for 5 weeks until I was able to bring him home. God is good and faithful and has a reason for everything that happens. I found out before David was born about his heart condition so he was able to be born in a hospital that could handle it. God will be with you every step of the way. I also have a daughter who was 3 when all this was going on. It's tough. I will pray for God's healing for your daughter. Thanks for sharing.:-)