Pierce has hit a milestone! He finally after 5 months on TPN has made it to full feeds and is doing well. He is scheduled for reconnection surgery on Jan. 3rd. We are so proud of him.

Lincoln isnt doing very well. He is really struggling with RSV and still on the vent. Hopefully within the next couple days we will see some improvements with him.

Christmas here was ok. The girls were both sad that the boys werent home but glad to see santa went and visited them too. We went to see them for a little while, but the girls couldnt go in to see Pierce. I was too concerned with them being around Lincoln when he first got sick. They did get to peek in and see Pierce though.

After we went over to my great aunts for nothing but crazyness and fighting. Definetely not something I want to repeat again next year. My cousins 4 yr old is no better and even more spoiled and I was not happy with how she treated my girls.

Lincoln in the Hospital with RSV

This past week I had noticed several more apnea spells than normal but he always brought his sats up. We got his new pulse ox and he was satting well until yesterday. His coloring was off and we decided to take him to see his pedi. Well when we got there he was satting very low and had cyanosis so he was then sent to peds at the childrens hospital. There they confirmed he had RSV and he was really struggling to breathe. They put him on a vent because he was getting weaker and weaker. I feel so horrible and feel I havent protected him enough. He has made trips back to the NICU when I go visit Pierce because I have no one to watch him, nor would I let anyone just watch him while I go see Pierce. Usually I would wait for my husband to get home and we would go together and he would stay in the car with Lincoln while I went in and then we would switch. But there were a few times I took him in. The girls both had been sick and I kept Lincoln away. I just feel so bad because now we will have both boys in the hospital on Christmas which has the girls torn up.

More belly issues

Pierce had been doing so well on his feeds and all of a sudden his little belly is swollen again. They didnt see any more NEC but have no ideas why his belly is so swollen yet again. He has been on 12cc every 3 hours and doing fine and then his belly started to swell. They stopped feeds but found it was not NEC or any perforations in his bowels. They restarted them at 6cc and he seems to be doing ok but his belly is a little swollen. So here we go with the belly issues again. I really want him off TPN soon before it starts to harm his liver. It just seems like he is never going to come home.

Sick Kids and a broken pulse ox

Lincolns pulse ox is broken and i not having one that works has been driving me crazy. His would go off for no reason even when set really low just to test it. It was making me so mad because everytime he would fall asleep the dang thing would go off, if he moved it would go off. I finally just took it off of him because i was tired of hearing the alarm go off. We should have our new one tomorrow. Last night he was having more apneas than usual and just not himself. I bumped his O2 up and he seemed to do a little better but he was definetely not himself.

Then the girls wake up which is unusual. Kennedy woke Madison up cause she wasnt feeling well. Well now Kennedy is sick, sore throat, fever, and a nasty cold. So now I have to keep Lincoln away or he will end up back in PICU. She had no signs of feeling bad earlier yesterday and was around Pierce. So now I am terrified she passed it on to him without knowing it. And Pierce has been doing so well on CPAP. I just hope everything will be ok.

Day 5 of cpap

Pierce has been off cpap for almost 5 whole days. He is doing so good with it. Now the question is will he stay on CPAP or eventually tire out and be back on the vent. We have been told that he will need a trach even after weaning off the vent. I dont understand why. I know his lungs are horrible and severely damaged but he is doing so well with CPAP and we are all surprised. His CPAP settings fluctuate between 8 and 9 but he is doing it all on his own which is something that I find truly amazing. His feeds are going well for once and he is so close to getting off TPN. He is at 13cc every 3 hours of 24 cal/oz pregestimil and is back to gaining weight. He is up to 4lbs6oz and doing good. We have his reconnection surgery scheduled for January 4th.

Lincoln is doing really well at home. He is doing better with his reflux and things seem to be going better. He is sleeping alot more and less fussy overall. He loves watching his sisters play and run around the house. They sing to him and read to him and help out with floor time. He gets so upset when its bedtime for them and all the entertainment his sisters give him has to stop. The girls are great with the him and really help out alot.

Kennedy has been really angry lately. We are trying our best to help her in any way possible. I sat down with her and found out one of her major problems. She wants Pierce home and its really bothering her that only one of her brothers is home. When asked what she wants for christmas she tells you Pierce to be home. We know he wont be home by christmas but hopefully soon and without a trach.

I know I havent been regular about updating this thing and am going to try to update it alot more as the boys are growing so fast. We see the GI for Lincoln today as his reflux has gotten really bad and his feeding has gotten worse. His weight has gotten to where he keeps losing weight and its become a major concern. Hopefully we will have more answers to what caused the sudden onset of this reflux.

Pierce is still in the NICU but we got some good news this week about his lungs. They are healing slowly and showed less scaring on the x-ray. He is so close to pulling the vent out and at that point they will see how he does on CPAP but we arent expecting him to stay on it but its worth the try.

I am scared they will rush into traching him when he may not need it at all. He still might need it but the thought really scares me. I am unsure about home nursing as I want to be the one taking care of my boys not some stranger I have never met before. But i really just want my baby home.

His feedings are going well and it looks like he will be off TPN in the next month. That will be a huge accomplishment for him. And if all continues to go well with feedings they will do the reconnection surgery.

We are getting there one step at a time

Off to the ER

We have dealt with some sever reflux over the past 3 days which is not getting any better. Lincoln is projectile vomiting everywhere and it is affecting his breathing now. He is having way to many apnea and bradys and I cant get his sats above 70.

Lincoln is home

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

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

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

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

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.

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

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.

L is on CPAP!

He finally did it. Lincoln has been on CPAP for 4 hours! He went on it at 4pm EST and so far so good. They did have to give him steroids to get him off the vent. 6 weeks of the vent. I know he probably wont stay on CPAP, well thats what all the drs have been saying. I hope he proves them wrong! He also hit another great milestone today 3lbs!!!! He is growing so well and fast. They gave him the cutest little purple binky today and he LOVES it!

Pierce, my wimpy white boy is not oxygenating well. His ABG's (Arterial blood gas) have been high, his pH is off, platelets are low which really i dont know what all that means. I get so confused with all the medical terminology, I need to talk to the neos and get them to explain it better, they just made me feel stupid asking so many questions. He is still on the vent with higher settings (22/7x60) and there has been some talk about going back to a high frequency ventilator, probably the oscillator which scares me. We will be attempting to restart feeds on Friday if all looks well with his belly. He will go on pregestimil more than likely long term. He cant tolerate my milk and needs the pre digested formula so all he has to do is absorb the nutrients. Long term effects of NEC I do not know, possibly being tube fed, however i really hope he is fine and can atleast bottle feed when he is ready to come home.

The rollercoaster never ends!

He is so close

Lincoln is so close to CPAP! He spent some time on it today after he extubated himself again. The lil dude hates the ventilator so much! The problem is he tires out too quickly. One nurse told us that L is lazy because he clearly can do it if he wanted to. He is requiring 21-35% O2 on low settings and breathes before the vent most of the time, however on CPAP after 20 minutes he struggles. I dont know if he can do it or not but i dont appreciate being told my precious boy is lazy. He does have CLD but the staff is being proactive and trying to get him off the vent this week. The NICU we are at likes babies off the vent as soon as possible and they feel that Lincoln is riding the vent.

Pierce is on the vent doing good. No signs of needing the oscillator again as long as he doesnt have any more major setbacks. His belly looks alot better today and he let me hold him! Tomorrow I can start Kangaroo with him 2 times a week. My boys are growing up. The drs feel that on Friday we will go ahead and try pregestimil instead of neocate. Hopefully he can tolerate feeds and start growing more. He is up to 1lb8.5oz now and 12.5" long.

I am trying to keep this updated more regularly! However it is not always possible with the girls running around like maniacs and long days at the NICU with my lil dudes!

Its been quite the week. P had surgery, recovery was very slow, however by the weekend he was showing improvements. He graduated from the oscillator for the 3rd time, hopefully 3rd times a charm. His belly is much improved and hopefully by friday he will be on feeds again (pregestimil). They had talked about putting him on neocate but with the recent loss of 8cm it has been decided he needs something else to help him. His growth has been like a snail. SLOW. He is 1lb8oz finally which is a big concern with some of the nurses. L has grown alot, but hasnt had any of the belly troubles P has.

L spent an hour on CPAP last night. I knew he wouldnt stay on it, but i hoped he would. He is on steroids that have helped immensely. His settings have come down and he is taking most breaths on his own.

The weekend was spent with the girls! We had soccer games and both girls won! and birthday party for them. Sunday was a day in the park, and swimming.

Pictures of the boys are up in their photobucket account.

Surgery and some on Lincoln

Mr. P had surgery this morning. There was 8cm of dead intestine. So all together he has lost 13cm of his small intestine. It was more than we expected but we are so lucky that we have the drs we have for him. They have been proactive with his treatment and have caught every infection rather quickly. This morning his belly was really swollen so I knew he really had more dead intestine. He is doing ok now and he is getting so close to getting rid of the stupid oscillator. It is a pain and I hate it. Now we just have to hope he heals nicely and can start on feeds soon. He wont be getting breastmilk, and i have been really upset over that but I have come to realize dh and I are doing the best for him. Hopefully down the road sometime he will get my milk.

Mr. L has been doing good. Sometimes I feel like he is left out because he doesnt have half the problems Pierce has had. He is still on the vent, his lungs are very wet and scared, so it might be awhile until he comes off of the vent. He is getting quite the personality and I get to Kangaroo him twice a week for up to 2 hours. He doesnt tolerate much holding and the longest we have made it was 45 minutes. But he is getting there. His feeds are up to 11cc and he tolerates them well. He is up to 2lbs14oz already! What a big boy he is.

Belly troubles

The belly saga continues with mr. P. He was doing so much better, his belly looked good and he was healing nicely. They decided it was time to start his feeds back again. They were stopped on Aug. 4 because of suspected NEC. Well it was NEC, he had the operation on the 14th and feeds were restarted this morning. That didnt go over so well, by late afternoon his belly was all swollen and green looking again. So his feeds were stopped and tests were done. They put a drain in to get the nasties out of his belly. His milk just stayed there, he cant digest breastmilk and the drs say he has more dead intestine. Belly surgery #2 is tomorrow. Feeds will be stopped for atleast 10 days and then he will be put on neocate

4 weeks!

Can you believe it the boys are now 4 weeks old and both still here. Both are still on ventilators, however both are off the oscillator so that is a little improvement. As of this morning Lincoln is 2lbs9oz, he was born 1lb 14oz so he has put on 11oz in 4 weeks! He is growing so well now if he could grow healthy lung tissue we would be on a roll with him. He is now 13" long so not much growth that way. His lungs are wet and weak and he has chronic lung disease from the ventilator. He had his first eye exam today and has stage 1 ROP. Pierce is now 1lb7oz, he keeps losing weight for some reason. That puts him at 3oz of weight gain in 4 weeks. He has been through 2 surgeries and is really fighting for life right now. He is focusing on healing his tiny body so he can grow. He is too unstable for them to do his eye exam and his lungs are far worse than Lincolns. I have always worried about both little boys, but Pierce is in more critical condition than Lincoln. They have made some progress although it doesnt seem like alot.

We are making Progress

We got good news last night and I wanted to share with ya'll. Pierce's belly is looking better. Its still swollen but doesnt look as bad. It looked like he had a huge bowling ball inside him and now the swelling is so much better. They are keeping him sedated for awhile longer so he is more comfortable. Its slow but he is improving. Lincoln is getting so much better. As of this morning he is back on the conventional vent! And I get to hold him in a little bit for the first time! He is up to 2lbs 3oz of real weight. He was heavier but has lost the water weight so he is growing so well. Pierce is still real tiny at 1lb 6oz but he is making progress. He has gained 2oz in 3 weeks but it took him a long time to reach his birthweight.

Pierce had His NEC surgery

Pierce has been having problems with his belly being swollen and discolored, blood in his stool, and all that fun stuff. We knew he would be needing surgery this week but it was more of an emergency surgery because it was scheduled for today but in order to save his life it needed to be done then. It took alot longer than they had thought but the drs informed us it could take longer than anticipated. Once they started surgery they found that more of his intestine was dead than they had thought, and he had 2 perforations in his bowel. They repaired it, did an ostomy, with his large intestine/colon, which basically makes an artificial anal opening in his belly to remove waste. Once he was out of surgery he went to recovery where I was still not allowed to see him. I was scared because he wasnt waking up, so they let me go in and see him. I tried so hard not to cry by him, then I went back out and to the NICU to visit with Lincoln. Lincoln isnt doing well either. He has an infection that set him back some.

Thats all I have time to update for today, maybe some more tonight!
~Aimee

Another week

Wow it really has been quite awhile since I last updated on my prince charmings! Where to begin? It has been a stressful week and lots of changes with Lincoln and Pierce.

Pierce had his PDA ligation this week, was diagnosed with NEC, and is now recovering. After the ligation he improved imensely. He graduated from the oscillator onto a conventional ventilator. His NEC surgery is scheduled for Wednesday.

Lincoln has had a horrible end of the week. He went downhill rapidly and is battling another infection.

Madison meets the twins

Yesterday my mother brought Madison and Kennedy back. They had been with her 2 hours away ever since I went on hospital bed rest at 22 weeks. Madison came home wanting to go see her brothers and Kennedy did not. So Mom, me and dh went to the hospital to visit with the boys, while Kennedy stayed with the neighbor and played with her friends.

It started out as a good visit however changed when Lincoln started to act sick. He started having a bunch of desats low. He usually will desat some but not like he was. I started to wonder if we were at Pierce's bedside instead of Lincolns. Not really but he was acting alot like Pierce. His O2 requirements went up, and he had some thick secretions. They took some cultures and put him on antibiotics. Pierce is still having many issues. Most of it I dont fully comprehend. His little belly was still swollen but looked a little better. He is saturating (satting) low for him and his O2 requirements are back up to 100%.

Madison liked her visit with her brothers but she was scared when all the alarms started going off. She did exceptionally well.

A short Update on the boys

Lincoln continues to do well. His feeds have been increased, his vent settings are slowly decreasing and his PDA closed with the meds. He doesnt really like to be touched all that much. Pierce is having a very difficult time right now. His PDA is still open, he played lets desat all day and scare mommy today. He would desat, need to be bagged, they would get him back up and he would desat low again. That went on for 3 hours. They he started having lots of bradys and coded once today. I was so scared, i had to leave the room and one of the nurses helped me make it through those minutes which seemed like an eternity. He doesnt tolerate his feeds anymore and his belly was a tad bit swollen today.

Welcome!

On July 25th 2007 we introduced our twin miracle boys.

Pierce Kent was born first weighing 1lb4oz and 11" long. Lincoln Cole was born several hours later weighing 1lb14oz and 12.5" long.

Here is there birth story I had typed out

he twins were born July 25th 2007. I was 26w5d pregnant.I had been contracting off and on since 20 weeks so holding onto the boys for 6 weeks and 5 days was a good accomplishment. We are incredibly sad that the boys just couldnt wait and we have a relatively long NICU stay ahead of us. Starting Sunday night contractions got really bad, coming really close together and lasting longer than they had been. Some were more intense than others and I was very uncomfortable. I wanted the meds to work so bad even though they made me feel like crap. Tuesday night I knew it wouldnt be much longer until the first was born. The contractions were unbearable and there was alot of pressure on my cervix. I called the nurse in because I was so uncomfortable and I was dialated completely and was told not to push. That was hard because I felt the urge to push. At that point I just wanted to make it one more day. I was doing ok, the contractions seemed to ease up a bit and I thought the little guy was playing tricks on me. I fell asleep kinda since I was so exhausted and woke up around 4:30 with more intense contractions. I woke my husband up and my mom who were in the room. The girls were also there and they woke up. I felt down and I told hubby to look down there and the baby was crowning. They got the nurses, drs, and the NICU staff down. Pierce Kent was born at 4:59 AM weighing 1lb 4oz and 11" long. And then everything seemed to stop. No more contractions. I went back to sleep for hours until the contractions started again. Around 6pm the contractions got regular again and I knew the other little guy was coming. I was hoping that he would hold off maybe just one more day but he wouldnt. He was too anxious to make his appearance. I tried to hold him in but that didnt happen and at 8:15pm Lincoln Cole was born weighing 1lb 14oz and 12.5" long.

So far it has been a rocky start. They are a week old now. Both boys had a PDA, Lincoln's has closed but Pierce's still has not and it has caused some problems with desats and bradys.

Lincoln:

So far he has done as well as can be expected. He has had 2 blood transfusions and has remained on the ventilator. At first his blood gases were horrible but they have been much better today. He has lost some weight but is getting my milk now. All the pumping is paying off. He is on 1cc every 3 hours. Not much but its something.

Pierce

So far Pierce has had the toughest time. He has lost alot of weight, but is also getting my milk 0.1mL per hour. He is on this special ventilator called an oscillator, and sedated. The settings have gone up today which is hard to handle. His PDA is still open but we are going to do another round of the meds to see if it will close. He has had 3 blood transfusions so far.

The big sisters Madison and Kennedy havent been up to see the boys yet, however we are planning a trip for them to meet their brothers. They were both thrilled to be big sisters but sad they came so early.