I always knew that life was busy with a newborn, but throw in life with a special needs infant and I can't even begin to explain the daily chaos. On top of phone calls, doctors appointments, medical supply companies, in home nurse visits we are constantly on the go. The only time I get to sit down through out the day is when I go pee or pump milk.
Through all this craziness the dryer is broken and my cell phone is intermittently working and our internet service has gone down. I may just go crazy if life doesn't slow down. I know that all these things are happening for a reason, a reason I really don't see at this time, but I know I will survive...somehow.
Amongst this storm we have been blessed with a calmness, a peaceful angel. Noelle is a very special child. A child that is so clam and sweet. The spirit and peace she brings into our home is amazing, every time I hold her and look at her she clams the storm around me, all the stress and chaos disappears. She is such a blessing
I know that everything that we are dealing with is preparing us and shaping us into who God wants/needs us to be. I am trying my hardest to remain positive and faithful. This journey is not easy, but I know I am not alone.
Friday, June 27, 2014
Wednesday, June 25, 2014
Home
So Monday was an exciting day, we worked out a plan with doctors and Noelle was discharged that night. Our sweet little one is home with us. We are VERY, VERY, VERY BUSY! I will update more when I get the chance :)
Sunday, June 22, 2014
Weigh in...
Today I sat down with our Nurse and Doctor and discussed protocol, discharge, care and expectations for us as a family and for Noelle. As we are getting closer to discharge, everyone is making sure we are all on the same page. It seems surreal that discharge could be as soon as tomorrow or as late as Friday. We are still waiting on weight gain before we can go home.
Overall from birth Noelle is up 1 ounce, which is great, but the docs want to see 3 days of gain. Whenever we have 2 of 3 days of gain, there is always a day of weight loss. The weight loss is minimal, but it is weight loss and they don't want to see that. Today we discussed looking at the past week and if Noelle is overall up then she should be fine to go home. Yay! We are ready to have her home and get into a routine again.
We have received all the equipment and supplies we need for her care, we feel ready and comfortable to take on this next step of life. I pray we will have the time, energy and patients to give Noelle the best possible life. She is a gift to us from God, I don't know how qualified I am to be her Mom, but I will give it my best and love her every step of the way.
As of tonight we are at 2 days of weight gain, we will see what happens tomorrow. Here is to hoping we are onto the next phase of our journey...Life at home!
Overall from birth Noelle is up 1 ounce, which is great, but the docs want to see 3 days of gain. Whenever we have 2 of 3 days of gain, there is always a day of weight loss. The weight loss is minimal, but it is weight loss and they don't want to see that. Today we discussed looking at the past week and if Noelle is overall up then she should be fine to go home. Yay! We are ready to have her home and get into a routine again.
We have received all the equipment and supplies we need for her care, we feel ready and comfortable to take on this next step of life. I pray we will have the time, energy and patients to give Noelle the best possible life. She is a gift to us from God, I don't know how qualified I am to be her Mom, but I will give it my best and love her every step of the way.
As of tonight we are at 2 days of weight gain, we will see what happens tomorrow. Here is to hoping we are onto the next phase of our journey...Life at home!
Friday, June 20, 2014
A new toy
Noelle's OT gave her a new toy to enjoy. This should help her use her eyes and stimulate her more to assist her in proper development.
We are still unsure of how well she sees. The ophthalmologist assures me she isn't blind, but she also doesn't see 20/20. Hopefully she can look at this shiny new view and build her eye muscles and grow!
We are still unsure of how well she sees. The ophthalmologist assures me she isn't blind, but she also doesn't see 20/20. Hopefully she can look at this shiny new view and build her eye muscles and grow!
Love notes
Our main nurse, who takes care of our sweet little Noelle had a day off finally, so she covered the room with reminder notes for the other nurses to make sure they cared for Noelle properly. This one is my favorite and made me chuckle. She is so itty bitty she is wearing the smallest size diaper. It's smaller than the premie size that is sold in store. We sure love our nurse and will miss her when we leave. She is amazing!
Thursday, June 19, 2014
Hearing test and Echo
This week we have had tests, many tests, I am sure this is just the beginning, today we heard back on her hearing test, but we are still waiting for her echo results.
A hearing test is a very routine test that is done before babies are discharged, they have been trying to test Noelle's ears since Monday and this kid was not having it. She has been PISSED every time they put the machine up to her head. They finally this morning caught her in a deep sleep and were able to do the test. Unfortunately she failed. The doc explained to me that it is very common with kids that have cleft pallets to have ear issues, so we will be going in to the specialist in July to have more testing done and see what is going on.
Her echo was done yesterday, we are still awaiting the results, it appears that there is still a small PDA and ASD, we will see what the doc says after radiology reads the test. We pray and hope this will fix on its own so she won't have to have another surgery.
As for now we are still waiting for Noelle to gain weight. She has either lost weight or stayed the same weight, once they can get her to steadily gain weight she will be able to come home!
A hearing test is a very routine test that is done before babies are discharged, they have been trying to test Noelle's ears since Monday and this kid was not having it. She has been PISSED every time they put the machine up to her head. They finally this morning caught her in a deep sleep and were able to do the test. Unfortunately she failed. The doc explained to me that it is very common with kids that have cleft pallets to have ear issues, so we will be going in to the specialist in July to have more testing done and see what is going on.
Her echo was done yesterday, we are still awaiting the results, it appears that there is still a small PDA and ASD, we will see what the doc says after radiology reads the test. We pray and hope this will fix on its own so she won't have to have another surgery.
As for now we are still waiting for Noelle to gain weight. She has either lost weight or stayed the same weight, once they can get her to steadily gain weight she will be able to come home!
Wednesday, June 18, 2014
1 Week Post Op
It has now been 1 week since surgery. Getting Noelle back up to her full feeds has been very slow going. Before surgery we were feeding her 29mLs every three hours. After surgery we had to slowly increase her feeds back up to her full feed, they started back at 7mLs per feed and very gradually increased her back to 29mLs. We have also been adding in calories to the pumped milk to help her gain weight. Many WHS kids struggle with weight gain, and since she is now two weeks old and has only gained 1 oz from her birth weight we are adding in calories to help her out.
The last couple of days we have been feeding her all of the 29 mLs per feed, she usually takes a few feeds of about 10 mLs by bottle and then we tube feed her the rest of her feed. She has a very weak suck so it is hard for her to get much out of the bottle, although her suck has improved greatly over the past two weeks. We are hopeful that over time she will get strong enough to take a full feed by bottle without our assistance of expressing milk.
Since she is only taking some feeds by bottle we have been tube feeding her the rest. We have discovered over the past couple of days that the way we were feeding her was perhaps a little too fast and did not allow ample time for her stomach to absorb the milk. (we were gavage feeding) The plan now is to put her on a pump that will administer her feeds over a longer period of time to help make digesting the food easier on her and her tummy.
We hope that this will work...as soon as we work out this feeding issue and she gains weight she can come home! YAY!
We are ready to have her home where we can take care of her and not have to juggle schedules to get up to the hospital. Her sisters miss seeing her and want her home and they really want mom and dad home more too. We are so thankful that Grandma Jones has been able to come stay with us and help out with the kids. I can't imagine doing all this with out her help. Thanks Mom/Kim/Grandma!
Subscribe to:
Posts (Atom)