Tuesday, June 2, 2009
Update and pics
I'm finally posting more pictures! Sorry it has taken so long:) Amarie is doing really well. At her last doctor's appointment a few weeks ago, she weighed 7 pounds 5 ounces (she was 5#1 oz at birth so she's getting bigger!). She went for a follow up at the craniofacial doctor last week and they took out the stitches in her jaw (she still has her pins in...we thought that they would take those out but they will do that next week). She will also see the hematologist next week and the neurologist the week after that to follow up about the blood clot and brain bleeding. We will also see the ear nose throat doctor...we are very curious about her hearing.
Life has been very crazy the last few weeks! Besides adjusting to the normal newborn stuff, we are adjusting to her tube feedings, medications, equipment, and lots of doctors appointments and paperwork. She gets her feedings through the tube in her nose every three hours. By the time you warm up her milk, set up the pump, let it run for 1 1/2 hours, flush it, and then wash the bottles and syringes, it is time for the next round! I had been pumping but stopped last week. I really struggled with that decision because I really had my heart set on nursing but I just could not keep up with pumping and the tube feedings. I had no time to enjoy Amarie. It has been better to take one thing off of the load but is still disappointing to let go of the hope of breastfeeding. I am trying to focus on what I did accomplish by pumping for 6 weeks in the midst of crazy hospital life and to be encouraged by the freezer full of milk I still have.
She goes for a swallow study this Friday. She is allowed to have a 5mL snack from the bottle everyday but she has trouble with this and gets gagged. If she does not pass her swallow study she will get a tube put into her stomach instead of the one in her nose. While we are not looking forward to another surgery and hospital stay, it will be better to have a more permanent tube since she figured out how to pull her NG tube out! The other day I was up doing one of her night feedings and I thought that I was starting to get the hang of things...then she pulled out her tube and the dog got sick all over the carpet! You just have to laugh.
Life has been very crazy the last few weeks! Besides adjusting to the normal newborn stuff, we are adjusting to her tube feedings, medications, equipment, and lots of doctors appointments and paperwork. She gets her feedings through the tube in her nose every three hours. By the time you warm up her milk, set up the pump, let it run for 1 1/2 hours, flush it, and then wash the bottles and syringes, it is time for the next round! I had been pumping but stopped last week. I really struggled with that decision because I really had my heart set on nursing but I just could not keep up with pumping and the tube feedings. I had no time to enjoy Amarie. It has been better to take one thing off of the load but is still disappointing to let go of the hope of breastfeeding. I am trying to focus on what I did accomplish by pumping for 6 weeks in the midst of crazy hospital life and to be encouraged by the freezer full of milk I still have.
She goes for a swallow study this Friday. She is allowed to have a 5mL snack from the bottle everyday but she has trouble with this and gets gagged. If she does not pass her swallow study she will get a tube put into her stomach instead of the one in her nose. While we are not looking forward to another surgery and hospital stay, it will be better to have a more permanent tube since she figured out how to pull her NG tube out! The other day I was up doing one of her night feedings and I thought that I was starting to get the hang of things...then she pulled out her tube and the dog got sick all over the carpet! You just have to laugh.
Sunday, May 24, 2009
Two Week Update
Hello,
We have been home a little over 2 weeks now. Amarie is doing very well. She is still on the feeding tube and we feed her every 3 hours and the feeding takes about an hour and a half to complete. So we are constantly feeding her throughout the day with a continuous feeding schedule throughout the night. We have to get up two times during the night to add more milk, but other than that she sleeps pretty well. She gets her distractors taken out on Tuesday!!! We are so excited. The main concern right now is her swallow study she is having done in a couple of weeks. If she doesn't pass she will have to get a feeding tube put into her stomach. I'm not sure what the technical name is for that. It will be better for long term use, but we aren't excited about another surgery. Well that is all for now. Thank you for all your prayers and concerns. God Bless.
-Jason Orean
We have been home a little over 2 weeks now. Amarie is doing very well. She is still on the feeding tube and we feed her every 3 hours and the feeding takes about an hour and a half to complete. So we are constantly feeding her throughout the day with a continuous feeding schedule throughout the night. We have to get up two times during the night to add more milk, but other than that she sleeps pretty well. She gets her distractors taken out on Tuesday!!! We are so excited. The main concern right now is her swallow study she is having done in a couple of weeks. If she doesn't pass she will have to get a feeding tube put into her stomach. I'm not sure what the technical name is for that. It will be better for long term use, but we aren't excited about another surgery. Well that is all for now. Thank you for all your prayers and concerns. God Bless.
-Jason Orean
Monday, May 11, 2009
Home at last
Hey Everybody,
Well we are finally back home. Corin called me Thursday afternoon and asked me to pick her and Amarie up. What a blessing. We have been home for 5 days now and it is such a relief to have everyone back home now. The dogs also came home Friday from the Pearson's. Amarie is still on a feeding tube and she has to be hooked up to a sleep-apnea monitor while we are not holding her. Other than that she is doing great. She is on several medications right now. One is for seizures, the other is for stomach reflux, and the other is to wean her off of the pain killers she was on. We still have to follow up with the doctors over the next few months. We are still concerned about the blood clot in her frontal lobe(although the clot did get smaller on her last CAT scan), and if we are carriers of Treacher Collins syndrome. If we are carriers then there is a 50 50 chance that if we have more children they will also have Treacher Collins. We are focusing on the bright side right now however. We are just glad to be home and together. Thank you all for your prayers and encouraging notes. God bless.
-Jason Orean
Well we are finally back home. Corin called me Thursday afternoon and asked me to pick her and Amarie up. What a blessing. We have been home for 5 days now and it is such a relief to have everyone back home now. The dogs also came home Friday from the Pearson's. Amarie is still on a feeding tube and she has to be hooked up to a sleep-apnea monitor while we are not holding her. Other than that she is doing great. She is on several medications right now. One is for seizures, the other is for stomach reflux, and the other is to wean her off of the pain killers she was on. We still have to follow up with the doctors over the next few months. We are still concerned about the blood clot in her frontal lobe(although the clot did get smaller on her last CAT scan), and if we are carriers of Treacher Collins syndrome. If we are carriers then there is a 50 50 chance that if we have more children they will also have Treacher Collins. We are focusing on the bright side right now however. We are just glad to be home and together. Thank you all for your prayers and encouraging notes. God bless.
-Jason Orean
Monday, May 4, 2009
Update-Monday
Amarie is out of ICU! :) 24 hours after they extubated her she was transferred to a regular floor. It is so nice to have her out of ICU and to be able to stay with her all the time now (though I can't wait to get home...the constant beeping of machines and staff coming in and out will drive a person crazy!) Amarie is one month old today- hard to believe it. Its kind of sad because we have spent that whole first month (except for three days) in the hospital. She is doing really well though. She is so awake and loves to look around (we still can't get over how exciting it is to see her with her eyes open..we missed that so much!) She is still hooked up to a lot of monitors and is also still on tube feedings through her nose. She had a swallow study today to see if she would be able to start eating orally but she didn't do very well with that and was getting a little bit of the milk down her airway. So she will have to go home on the tube feedings and then they will repeat the swallow study in a month. That was really disappointing because I was hoping she would be able to start nursing. Another month of pumping :/ They are going to repeat the CT scan of her brain tomorrow morning so we are praying that the blood clot and bleeding have improved. Depending on how the CT looks and how long it takes to get all the equipment we need to go home with, the "plan" is that we will be able to go home towards the end of the week. That would be the best mother's day present to be able to take my baby home!!! (I'll post lots of new photos tomorrow when Jason brings the laptop)
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