To sum up NICU life...two big steps forward and then one big step backwards! :(
Just when we get excited about one thing it all changes and breaks a little piece of your heart all over again.
Wednesday, August 10th, we were SO excited. Ira got rid of her breathing vent and all her tubes! Her sweet face was completely clear and we could finally see her cheeks with no tape on them! The whole day was so needed! The snuggles were none stop! Daddy even took off work to come down and snuggle sweet baby!! Have to get those kisses in on the clear cheeks while you can...because just like this, everything changed. After we left Wednesday, Ira threw up 6 times. It was just stomach liquids because she's not getting feed yet, but they were hoping she wouldn't throw up at all. So they took an x-ray and decided to put her suction tube back in her nose and into her tummy to suck out all her stomach juices. The x-ray showed that her stomach is enlarged and unable to do its job correctly. Yes, it has worked correctly before because she was on full feeds before surgery, but it's not working correctly now. :(
They obviously want to get her to start getting milk so that her bowels have more to work with, so they've came up with a plan. On one side of her nose she will have the suction tube in her stomach...on the other side of her nose, they are going to put a feeding tube in past the stomach all the way to the top of the bowel and feed her bowels directly. They are hoping that will help her bowels have more to push threw and hopefully work correctly or faster. She did have 2 dirty diapers that she has pushed out herself; however, she hasn't pushed anymore out, so they have had to help her. They do whats called irrigation every 8 hours...I'm sure you can all guess what happens when they do that! It helps her that's all that matters! That and it doesn't hurt her at all! Anyways, that's the plan for now. The surgeon was honest with us and said that the stomach issue...yes, it's a pain, but it's not a surgical procedure...in fact it's something that will go away with time and if it takes a long time (he's seen cases were it takes months for the stomach to work again) we can come home with a feeding tube and little by little her stomach will learn to work again. Of course it's not ideal, but we will do WHATEVER is needed to help our baby! The bigger issue would be if her bowels closed where they were reconnected. X-rays are showing that that has happened a little, but not enough to be worried. If it does happen there would be another surgery and just that much longer of a stay. (Praying that DOESN'T happen!) But also if her bowels don't start pushing out the stole by themselves, she will have to be irrigated every day, every 8 hours, and yes that is something we can do at home as well, but they are not fond of the idea of letting us bring her home and doing that right now. They aren't comfortable with us bringing her home with two tubes in her face. (Pray she starts doing EVERYTHING herself!!!) Surgeon said there was a boy they kept at the hospital for 3 extra months to watch and irrigate everyday..then one day his colon woke up completely and he was able to go home! I was happy but my eyes got huge at the sound of 3 extra months! The surgeon looks at me and so sweetly says, "I know you want your baby home and we want you to have her home, but we want her to be safe. We don't want you to have to worry about anything..even though we know you will...but I do want to tell you, your family has a good couple more months here at the hospital. Specially, with this stomach issue now showing up. So, please don't get your hopes up on having her home for awhile, but obviously we don't know for certain so we will just hope her stay time is much shorter than we expect!"
A smile on my face...my heart on the floor.
We knew it was going to be a long road to recovery, but like I said..when you see the two big steps forward, you get so excited, then you're taking that big step back, and it hurts. We are just praying she comes home for Christmas!
There is so much to pray for...we feel selfish to ask for a miracle, but we know God is capable, and in the end we will be happy with whatever God's plan is because Thy Will Be Done!
Prayer Requests
1. Ira's bowels don't narrow, close, or develop any blockages.
2. She starts pooping by herself, at least once a day...out of her bottom.
3. Her stomach size goes down, and it starts working properly so they can feed it rather than suction it.
4. Over all health and development...that everything can just start working the way that it's suppose to so that she can be a happy healthy little girl!
5. Mom and Dads hearts are feeling very weary so prayers that we find peace and patience on this long constantly changing road.
6. Ada Lou is feeling plenty of love and attention through all this..specially because we honestly have NO idea how long our lives will be like this.
P.S. Don't be alarmed if this all changes and this isn't the plan by like..oh Morning? Sorry everything is so unpredictable!! Things are just getting a lot more complicated than just dirty diapers!
Wednesday, August 10th, we were SO excited. Ira got rid of her breathing vent and all her tubes! Her sweet face was completely clear and we could finally see her cheeks with no tape on them! The whole day was so needed! The snuggles were none stop! Daddy even took off work to come down and snuggle sweet baby!! Have to get those kisses in on the clear cheeks while you can...because just like this, everything changed. After we left Wednesday, Ira threw up 6 times. It was just stomach liquids because she's not getting feed yet, but they were hoping she wouldn't throw up at all. So they took an x-ray and decided to put her suction tube back in her nose and into her tummy to suck out all her stomach juices. The x-ray showed that her stomach is enlarged and unable to do its job correctly. Yes, it has worked correctly before because she was on full feeds before surgery, but it's not working correctly now. :(
They obviously want to get her to start getting milk so that her bowels have more to work with, so they've came up with a plan. On one side of her nose she will have the suction tube in her stomach...on the other side of her nose, they are going to put a feeding tube in past the stomach all the way to the top of the bowel and feed her bowels directly. They are hoping that will help her bowels have more to push threw and hopefully work correctly or faster. She did have 2 dirty diapers that she has pushed out herself; however, she hasn't pushed anymore out, so they have had to help her. They do whats called irrigation every 8 hours...I'm sure you can all guess what happens when they do that! It helps her that's all that matters! That and it doesn't hurt her at all! Anyways, that's the plan for now. The surgeon was honest with us and said that the stomach issue...yes, it's a pain, but it's not a surgical procedure...in fact it's something that will go away with time and if it takes a long time (he's seen cases were it takes months for the stomach to work again) we can come home with a feeding tube and little by little her stomach will learn to work again. Of course it's not ideal, but we will do WHATEVER is needed to help our baby! The bigger issue would be if her bowels closed where they were reconnected. X-rays are showing that that has happened a little, but not enough to be worried. If it does happen there would be another surgery and just that much longer of a stay. (Praying that DOESN'T happen!) But also if her bowels don't start pushing out the stole by themselves, she will have to be irrigated every day, every 8 hours, and yes that is something we can do at home as well, but they are not fond of the idea of letting us bring her home and doing that right now. They aren't comfortable with us bringing her home with two tubes in her face. (Pray she starts doing EVERYTHING herself!!!) Surgeon said there was a boy they kept at the hospital for 3 extra months to watch and irrigate everyday..then one day his colon woke up completely and he was able to go home! I was happy but my eyes got huge at the sound of 3 extra months! The surgeon looks at me and so sweetly says, "I know you want your baby home and we want you to have her home, but we want her to be safe. We don't want you to have to worry about anything..even though we know you will...but I do want to tell you, your family has a good couple more months here at the hospital. Specially, with this stomach issue now showing up. So, please don't get your hopes up on having her home for awhile, but obviously we don't know for certain so we will just hope her stay time is much shorter than we expect!"
A smile on my face...my heart on the floor.
We knew it was going to be a long road to recovery, but like I said..when you see the two big steps forward, you get so excited, then you're taking that big step back, and it hurts. We are just praying she comes home for Christmas!
There is so much to pray for...we feel selfish to ask for a miracle, but we know God is capable, and in the end we will be happy with whatever God's plan is because Thy Will Be Done!
Prayer Requests
1. Ira's bowels don't narrow, close, or develop any blockages.
2. She starts pooping by herself, at least once a day...out of her bottom.
3. Her stomach size goes down, and it starts working properly so they can feed it rather than suction it.
4. Over all health and development...that everything can just start working the way that it's suppose to so that she can be a happy healthy little girl!
5. Mom and Dads hearts are feeling very weary so prayers that we find peace and patience on this long constantly changing road.
6. Ada Lou is feeling plenty of love and attention through all this..specially because we honestly have NO idea how long our lives will be like this.
P.S. Don't be alarmed if this all changes and this isn't the plan by like..oh Morning? Sorry everything is so unpredictable!! Things are just getting a lot more complicated than just dirty diapers!
No comments:
Post a Comment