We think Madelyn is practicing her golf grip!
Thursday, September 18, 2008
Dear Emma and Madelyn,
We love you so much. We are so proud of you and how well you are doing. We look forward every day to the moment we get to see you again. You will be home soon and you will not have any memories of this time away from us. The nurses and doctors are taking such great care of you. Every day you both look stronger and happier. You have had so many visitors and there are so many more people waiting to meet you.
In just a few weeks we will get to hold you in our arms in your new home with no wires, no tubes, no alarms. Just the 4 of us, reunited. Your dad and I look forward to all of the special moments we will have with you. We can't wait to see who you look like, what your personalities are like and who you will become. We have so many hopes and dreams for both of you and for us all as a family. By this time next year, we'll be gearing up to take you to the Pumpkin Patch. Before we know it, we'll be sending you off in the morning to school!
We love you and can't wait for the day that you come home. Keep up the good work!
Love always,
Mommy and Daddy
In just a few weeks we will get to hold you in our arms in your new home with no wires, no tubes, no alarms. Just the 4 of us, reunited. Your dad and I look forward to all of the special moments we will have with you. We can't wait to see who you look like, what your personalities are like and who you will become. We have so many hopes and dreams for both of you and for us all as a family. By this time next year, we'll be gearing up to take you to the Pumpkin Patch. Before we know it, we'll be sending you off in the morning to school!
We love you and can't wait for the day that you come home. Keep up the good work!
Love always,
Mommy and Daddy
Wednesday, September 17, 2008
Our sweet Madelyn
Mady is back off of her CPAP. They decided at rounds this morning that she could come off today or tomorrow and if she fussed and pulled them out today, then she could return to the nasal canula. She must have overheard this because when we went in today, just 3 hours after rounds, she had pulled it out and was back on the canula :) It's great to see her tiny face again. Last night when we got her out to kangaroo she cried so loudly because she hated that CPAP so bad. Once she got comfortable, she did so well!
We were both in today because the nurse told me the doctor wanted us to talk to him in person about Mady's repeat brain scan. This of course, scared us to death, but we felt a little better after talking to the doctor. Hopefully, I'll be able to explain this fairly well. She has a few tiny cysts on the right side of her brain in the white matter. The technical term is Periventricular Leukomalocia. It's scar tissue, but scar tissue in the brain basically creates little holes. In most cases, the brain is able to re-route the nerves around these holes. This is a very common finding in preemies and the doctor assured us that hers are very, very small. What does this mean for her? It hopefully means nothing. It can cause developmental delays and complications with motor skills. Worst cases would be mental retardation and cerebral palsy. In those worst cases though, the doctor explained that the brain looks more like swiss cheese and involves very large cysts. Upon examination, the doctor sees nothing but a normal, progressing preemie. Her muscle tone and appearance is great. It's his opinion that she will have no issues, but because we are aware of these cysts, it's something that we and our pediatrician will keep an eye on. We will keep an eye on it by watching for when she reaches her milestones such as smiling, walking, etc. We know she will be fine!!
He said both of the girls are doing really well for their gestational age and right now it's just a matter of them growing, learning to feed and maintaining their body temperatures. Emma is just coasting along!
On a side note, I talked to my doctor today and she, reluctantly, will release me to work next Wednesday barring that I still feel okay. If I start to feel worse or if it's just too much returning so early, she will write me back out of work. We discussed a shortened schedule with me leaving work at 3, so that I can spend time with the girls and still be able to go home and rest at night. Hopefully this will only be for a few weeks, as we're remaining hopeful that they'll be home in 4 weeks!
We were both in today because the nurse told me the doctor wanted us to talk to him in person about Mady's repeat brain scan. This of course, scared us to death, but we felt a little better after talking to the doctor. Hopefully, I'll be able to explain this fairly well. She has a few tiny cysts on the right side of her brain in the white matter. The technical term is Periventricular Leukomalocia. It's scar tissue, but scar tissue in the brain basically creates little holes. In most cases, the brain is able to re-route the nerves around these holes. This is a very common finding in preemies and the doctor assured us that hers are very, very small. What does this mean for her? It hopefully means nothing. It can cause developmental delays and complications with motor skills. Worst cases would be mental retardation and cerebral palsy. In those worst cases though, the doctor explained that the brain looks more like swiss cheese and involves very large cysts. Upon examination, the doctor sees nothing but a normal, progressing preemie. Her muscle tone and appearance is great. It's his opinion that she will have no issues, but because we are aware of these cysts, it's something that we and our pediatrician will keep an eye on. We will keep an eye on it by watching for when she reaches her milestones such as smiling, walking, etc. We know she will be fine!!
He said both of the girls are doing really well for their gestational age and right now it's just a matter of them growing, learning to feed and maintaining their body temperatures. Emma is just coasting along!
On a side note, I talked to my doctor today and she, reluctantly, will release me to work next Wednesday barring that I still feel okay. If I start to feel worse or if it's just too much returning so early, she will write me back out of work. We discussed a shortened schedule with me leaving work at 3, so that I can spend time with the girls and still be able to go home and rest at night. Hopefully this will only be for a few weeks, as we're remaining hopeful that they'll be home in 4 weeks!
Tuesday, September 16, 2008
I'm giving in.
I talked to the lactation consultant today and she stressed how important it is to be resting when I am at home and to take care of myself. I know this, but it's easier said than done. She convinced me that the house work can wait. She suggested that a week before the babies come home, we ask for help getting the house back in order. She also suggested that anyone that wants to help us bring us home cooked meals that we can reheat or grocery shop for us. Meals are quite the challenge for us as we have no free time to shop or make food. She doesn't want me preparing meals and Christian works all day and doesn't get home till 10 or 11 after seeing the girls. So, if you would like to help us, you can drop us off something that is re-heatable (to our house or my parents) or we can give you a small list of some necessities we might need. I have my mom running some errands for me this week. I hate asking for help, as I hate to inconvenience anyone, but many of you have asked what you can do tell help us get through this time.
2 weeks old
The girls are now 2 weeks old (31 weeks). Emma had some spit up yesterday, so they decreased her feedings by 1cc, today she is back up, and now at 25cc's. Her O2 is at 29% and Madelyn's is at 24%. They will leave Mady on the CPAP at least for today and most likely tomorrow as well. Mady had her head scan today and we are awaiting the results. They had an uneventful night which is great!
I am pretty sure I have a clogged and possibly infected duct and am waiting for the lactation consultant to return my call. Hopefully once I get this figured out and corrected, I'll start feeling better overall. I'm not even back at work yet and I'm just so exhausted. Christian goes into work every day and then stops after work until about 10-11pm to spend time with the girls. I have no idea how he does it. I am hoping to work until about 3 when I return to work so that I can spend the evening with the girls in kangaroo care and then get home to relax from the day before going to bed and starting over again.
I am pretty sure I have a clogged and possibly infected duct and am waiting for the lactation consultant to return my call. Hopefully once I get this figured out and corrected, I'll start feeling better overall. I'm not even back at work yet and I'm just so exhausted. Christian goes into work every day and then stops after work until about 10-11pm to spend time with the girls. I have no idea how he does it. I am hoping to work until about 3 when I return to work so that I can spend the evening with the girls in kangaroo care and then get home to relax from the day before going to bed and starting over again.
Monday, September 15, 2008
Visitors
Christian and I want to give Madelyn a few days to recoup after her little step backwards last night. We know so many of you want to get into see them. We are asking that you wait until this weekend to visit. Please understand that we do want visitors, we just don't want to overstimulate sweet Mady right now. We'll let you know as soon as we are comfortable with guests again.
Thank you for understanding!
Thank you for understanding!
2 Steps Forward, One Step Back
I guess this is a fairly common thing in the NICU... we, however, are used to sailing forward. Little Madelyn is back on her CPAP. She was struggling with her breathing and wasn't comfortable. She had numerous D-sats last night. I attended rounds with the doctors this morning and they explained that this is fairly common among preemies. They believe from her most recent chest x-ray, that she is retaining fluid, which is entering her lungs. They will give her a diuretic today. The doc says that sometimes they are just too premature to be able to empty their bladders as they should. The fluid that is retained sometimes enters the skin or the lungs. She is just on regular CPAP and breathing room air. We are hoping it'll just be another day or two because she HATES the CPAP. She is constantly struggling to pull it out. Mady has her repeat head scan tomorrow.
The nurse today couldn't get enough of the girls. They were both smiling a ton today. When I saw Mady back on the CPAP, it brought me to tears. However, right before I left she was smiling at me as she was feeding which made me feel better.
Emma now weighs in at 3lbs 2.2 oz. and Mady is 3lbs 1.1 oz. Tiny Emma has now surpassed her sis! Emma is now at 25cc's of milk and Madelyn is at 22cc's. Yesterday we attended a bath demonstration and will now be able to bath our girls on bath days, which are Thursday and Sunday. Emma didn't seem to mind bath time too much at all!
I stayed with them for a little while this morning and was able to Kangaroo with Emma. Christian and I will be going back again tonight. I needed to come home and rest. I haven't been feeling well again and I'm not sure if it's related to pumping or something else. My final results came back from the urine cultures showing that I don't have an infection.
The nurse today couldn't get enough of the girls. They were both smiling a ton today. When I saw Mady back on the CPAP, it brought me to tears. However, right before I left she was smiling at me as she was feeding which made me feel better.
Emma now weighs in at 3lbs 2.2 oz. and Mady is 3lbs 1.1 oz. Tiny Emma has now surpassed her sis! Emma is now at 25cc's of milk and Madelyn is at 22cc's. Yesterday we attended a bath demonstration and will now be able to bath our girls on bath days, which are Thursday and Sunday. Emma didn't seem to mind bath time too much at all!
I stayed with them for a little while this morning and was able to Kangaroo with Emma. Christian and I will be going back again tonight. I needed to come home and rest. I haven't been feeling well again and I'm not sure if it's related to pumping or something else. My final results came back from the urine cultures showing that I don't have an infection.
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