We brought Lincoln home today. It is so overwhelming. We are so happy to have him home, however we had to leave Pierce in the NICU. He will still be there awhile longer. Lincoln is home on O2, an apnea monitor and a pulse ox. The girls are in love with him being home and so far are being a big help and not fighting on whose turn it is to bring mommy the diaper or the bottle.
Pierce still has many issues. We will start feeds again on Monday and hope he does well. He is on decadron and weaning off the jet but the likelyhood of him staying off it after steroids is not good. He has severe BPD and it is not improving much. It looks like NEC is finally gone, so we will see if that improves things.
I promise an update later once things at home settle down some
Friday, October 26, 2007
Saturday, October 20, 2007
We have been busy this week. Lincoln will be home on Friday if all goes as planned. We will room in wed and thurs night. I am really scared, nervous, worried, and overwhelmed. The girls are just getting over a nasty virus, seem to be doing better as they both went to their Soccer games today and only Kennedy could play in hers. I am hoping all the nasty germs will be outta the house by Friday.
This week we finished painting the boys rooms, set the cribs up, decorated the nursery and washed all the clothes and diapers. The amby bed is set up in our room and we got a swing. We are preparing for the homecoming of Lincoln Kent! He will come home on monitors and Oxygen as he has not fully weaned off of it.
Pierce still struggles. We tried Nitric Oxide and that only helped a little but not enough to keep him on it. He is now on his 3rd round of steroids, we are trying to get him on the conventional ventilator. Respiratory wise we arent seeing much improvements. The decadron has helped alot though but he is no where near close to being on CPAP and the drs doubt he will wean off of it any time soon. I really hope he turns around and weans soon. The thought of a trach scares me so much. He is struggling so much more than his brother and it hurts so much. It is typical of TTTS twins that one does better than the other. There was a 10oz difference at birth, now the gap is much bigger. P is 3lbs1oz and L is 6lbs3oz now. Alot of Pierce's growth problem is due to having NEC and still having issues with his belly. He has lost 15cm of intestine, still doesnt digest anything, and has trouble when his feeds go above 2.5cc. I worry that he will be on TPN too long which will cause his liver to fail.
I am having a hard time dealing with one coming home and the other staying in the NICU for what could be months still. The girls have been through major changes and homeschooling isnt working. They have been with one of my good friends in the homeschool group we belong to but the girls arent being challenged and their not learning how I would like them to be. We thought it over and decided that we needed another option for them. We chose Montessori school and they start on Monday. This is a big change for them and both dont want to go but it is the only way it will work. I will be home with Lincoln and it wont be possible for me to teach them
Life is going, one step at a time
This week we finished painting the boys rooms, set the cribs up, decorated the nursery and washed all the clothes and diapers. The amby bed is set up in our room and we got a swing. We are preparing for the homecoming of Lincoln Kent! He will come home on monitors and Oxygen as he has not fully weaned off of it.
Pierce still struggles. We tried Nitric Oxide and that only helped a little but not enough to keep him on it. He is now on his 3rd round of steroids, we are trying to get him on the conventional ventilator. Respiratory wise we arent seeing much improvements. The decadron has helped alot though but he is no where near close to being on CPAP and the drs doubt he will wean off of it any time soon. I really hope he turns around and weans soon. The thought of a trach scares me so much. He is struggling so much more than his brother and it hurts so much. It is typical of TTTS twins that one does better than the other. There was a 10oz difference at birth, now the gap is much bigger. P is 3lbs1oz and L is 6lbs3oz now. Alot of Pierce's growth problem is due to having NEC and still having issues with his belly. He has lost 15cm of intestine, still doesnt digest anything, and has trouble when his feeds go above 2.5cc. I worry that he will be on TPN too long which will cause his liver to fail.
I am having a hard time dealing with one coming home and the other staying in the NICU for what could be months still. The girls have been through major changes and homeschooling isnt working. They have been with one of my good friends in the homeschool group we belong to but the girls arent being challenged and their not learning how I would like them to be. We thought it over and decided that we needed another option for them. We chose Montessori school and they start on Monday. This is a big change for them and both dont want to go but it is the only way it will work. I will be home with Lincoln and it wont be possible for me to teach them
Life is going, one step at a time
Monday, October 15, 2007
Its been a long while again. So sorry for the delay!
Lincoln is coming home in a few weeks. October 26th which is his EDD. He is getting big and doing so well. He is still on O2 but is eating like a champ. Breastfeeding isnt going well but he is still getting my milk and all his feeds by mouth. He really could come home in a week or so but they are trying to wean him off of O2 before he comes home.
Pierce is still a long ways from coming home. He had his 3rd belly surgery, a heart cath, and is now on nitric Oxide to help with his BPD. His lungs are terrible. They have brought up the idea of a trach which scares me so much. I never thought I would have to deal with that. The only problem is his size. He isnt growing well due to his inability to digest and having NEC. We are waiting for NEC to completely go away before thinking more about the trach. I really dont want to have to trach him but if thats what it takes to get him home then we will go ahead with it. We already know he will get a g tube but his belly has to heal so he can grow. He is 2lbs9oz now and on the Jet ventilator. He has had several PIE's which is why they are keeping him on the Jet! He also has pulmonary hypertension which is causing some problems.
Until Next time
Lincoln is coming home in a few weeks. October 26th which is his EDD. He is getting big and doing so well. He is still on O2 but is eating like a champ. Breastfeeding isnt going well but he is still getting my milk and all his feeds by mouth. He really could come home in a week or so but they are trying to wean him off of O2 before he comes home.
Pierce is still a long ways from coming home. He had his 3rd belly surgery, a heart cath, and is now on nitric Oxide to help with his BPD. His lungs are terrible. They have brought up the idea of a trach which scares me so much. I never thought I would have to deal with that. The only problem is his size. He isnt growing well due to his inability to digest and having NEC. We are waiting for NEC to completely go away before thinking more about the trach. I really dont want to have to trach him but if thats what it takes to get him home then we will go ahead with it. We already know he will get a g tube but his belly has to heal so he can grow. He is 2lbs9oz now and on the Jet ventilator. He has had several PIE's which is why they are keeping him on the Jet! He also has pulmonary hypertension which is causing some problems.
Until Next time
Sunday, September 23, 2007
Its been awhile
Wow its been a long while since an update on the boys! There really hasnt been much to report on them. Both of them have been really boring these days.
Lincoln is 3lbs 5oz and 14" long. He is off TPN gets 25cc every 3 hours, finally weaned of the ventilator and is doing well on CPAP.
Pierce is 2lbs 4oz 12.5" long and finally tolerating feeds. He is up to 1cc every hour. Still on the vent but getting better at it.
Not much going on here.
Until next time
Lincoln is 3lbs 5oz and 14" long. He is off TPN gets 25cc every 3 hours, finally weaned of the ventilator and is doing well on CPAP.
Pierce is 2lbs 4oz 12.5" long and finally tolerating feeds. He is up to 1cc every hour. Still on the vent but getting better at it.
Not much going on here.
Until next time
Thursday, September 13, 2007
Here is a short update on the boys, I have been crazy busy with everything going on.
Pierce started feeds 3 days ago! He is doing good so far, up to 0.2cc every hour on continuous feeds and tolerating them thus far. Lincoln has an MRSA Staph infection and went down hill rather quickly. Other than that not much to report. I am headed up to see them now.
Pierce started feeds 3 days ago! He is doing good so far, up to 0.2cc every hour on continuous feeds and tolerating them thus far. Lincoln has an MRSA Staph infection and went down hill rather quickly. Other than that not much to report. I am headed up to see them now.
Sunday, September 9, 2007
its been quite the weekend!
Friday we had an ER trip with the oldest daughter, she had emergency surgery to take her appendix out but is at the same hospital as the boys and I havent been home since friday.
Lincoln is growing so well. He is up to 3lbs 1 oz and starting to hold his temp better. He oxygenates well but still has not mastered CPAP. One of these days he will. He is only requiring 25-30%O2 and is on low settings, he takes most of his breaths on his own but does get tired and lets the vent work too. Hopefully soon he will be on CPAP.
Pierce is still having problems with his potassium, however his kidneys are working which is the weird thing. They have been giving him potassium so that might be helping and his levels seem to be improving. His little belly looks a little better today however the initiating of feeds is still not known because everything has to check out ok before trying it again. His pH has improved and everything looks normal except his potassium.
Thats all for now
Lincoln is growing so well. He is up to 3lbs 1 oz and starting to hold his temp better. He oxygenates well but still has not mastered CPAP. One of these days he will. He is only requiring 25-30%O2 and is on low settings, he takes most of his breaths on his own but does get tired and lets the vent work too. Hopefully soon he will be on CPAP.
Pierce is still having problems with his potassium, however his kidneys are working which is the weird thing. They have been giving him potassium so that might be helping and his levels seem to be improving. His little belly looks a little better today however the initiating of feeds is still not known because everything has to check out ok before trying it again. His pH has improved and everything looks normal except his potassium.
Thats all for now
Friday, September 7, 2007
Frustrations!
Lincoln's time on CPAP was short lived and he only lasted 7 hours on it. It was better than the last time, however it was upsetting when he went back on the vent. I wanted the drs to be wrong and now they wont try him on CPAP for atleast another week which i dont understand. He is a pro at extubating himself. He oxygenates very well for his age and considering how early he was. On the vent he is consistently at 25-33%O2, when he gets mad or is being held it is a bit higher. My guess is he tires out and depends on the vent too much because he can do it he just cant keep on the vent even with steroids. Its frustrating
,
Mr. P had a bad day. They thought today was a day to restart feeds however that did not happen. His bloodwork still is all weird. His pH is low for some reason, his CO2 is high, and he cant keep his potassium up. I dont understand what it means when his potassium is low and I cant get a good explanation from the drs. Also he had blood in his stools today, which is an indication that the NEC is still not gone. This has been going on forever. I just want my baby to feel better, be able to get feeds and grow. His growth has been up and down. He isnt oxygenating well either and might be back on the oscillator before long which really makes me sad because I cant hold him then and he did well when I held him the first time.
Thats it for now. Everything about today has been frustrating. I didnt get to see the boys, Madison is sick so I couldnt go.
,
Mr. P had a bad day. They thought today was a day to restart feeds however that did not happen. His bloodwork still is all weird. His pH is low for some reason, his CO2 is high, and he cant keep his potassium up. I dont understand what it means when his potassium is low and I cant get a good explanation from the drs. Also he had blood in his stools today, which is an indication that the NEC is still not gone. This has been going on forever. I just want my baby to feel better, be able to get feeds and grow. His growth has been up and down. He isnt oxygenating well either and might be back on the oscillator before long which really makes me sad because I cant hold him then and he did well when I held him the first time.
Thats it for now. Everything about today has been frustrating. I didnt get to see the boys, Madison is sick so I couldnt go.
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