Olivia is on the left in both pictures. Echo has been very good with the girls and is often sitting near them like this.
Monday, July 20, 2009
Tuesday July 14th, 2009 - HOMECOMING DAY
At 9:16 am I got a call from Heather (one of our favorites in the NICU) that I could come and get my girls. Oh my gosh! I can't even explain how I felt. 82 days after they were born and 110 days after I was admitted to hospital and I was finally going to be a full time mother. I don't know how to explain it but through all of this part of me never felt like a mother, like I didn't have kids still. I knew in my head they were mine but my life had barely changed other than the daily visits to the hospital. So I met up with my mom and we were off. It was time for their lunch cares when we got there (had to wait on the oxygen company to bring correct equipment) so I was feeding Olivia when she decided to initiate me to motherhood by covering me from neck to knees in throw up. There is nothing like the smell of formula. She soaked me down to my underclothes. Luckily the staff liked me (or felt sorry for me) and they gave me a set of scrubs to wear. I looked at it like I had been there often enough I could have been an employee. I mean security was giving me parking tickets for not having my employee permit properly displayed and using the visitor lot. So we had a prayer with the chaplain Claire and Dr. Moraille came in to say goodbye, he is the neonatalogist that had visited me while on bedrest. We got the girls all packed up and I sent Mom to bring the car around while I said goodbye to the nurses who took care of me. Well after 20 mins or so she is still not back and I start hearing about a commotion in the hallway. I go out to find my mom, who had all of the girls bags, surrounded by nurses and security, somewhere in one of the bags was a transponder that they put on the babies so they can't be taken out of the hospital. They were trying to test each bag but never finding it. I knew one of the bags was packed by the nurse and not us so I grabbed that bag and shook out all of the clothes, I found the transponder in the foot of a sleeper. OK, that problem solved, can we please go home?
I have to say it is quite difficult to get these girls in the car. Here is the system I have come up with (since we have been home.) I put in Megan behind me, then her oxygen tank, then her monitor, then I check all of the hoses and wires and makes sure they don't get pinched anywhere. I follow the same procedure with Livy on the passenger side. When I have to use the stroller multiply all that twice. I bet it takes me 30 minutes to get in the car if you start counting from the time I change them from the large O2 tanks to the portable ones, thats with the diaper bag and girls ready.
Now that they are home I am finally going through that phase where every time I look at them I fall more in love. They are so beautiful and amazing, I am in total awe. I spend time every single day holding the two of them together at least once. I have never been happier.
It has been hard at home being limited by the length of tubing and wires. I never thought out all of this. In the hospital it is easy to keep the girls in their area. At home that not the way it is supposed to be. I should be able to carry a girls into the kitchen to fetch a bottle or their room for a diaper. I realized friday that the girls have never been in their room. The O2 tanks are in the living room so we set up the monitors next to them. They don't reach to either crib so I set up my pack n play in the living room for them to sleep in. I have about a 12 square foot area the three of us live in. I have to have someone there just so I can take a shower. Somewhere in my head I still had pictured bringing home normal babies. For example I pictured putting them in car seats or bouncy seats outside the bathroom door while I showered them I could listen to them and peek out. Not even close to how it is. Oh well, I am dealing with it I just have to do everything differently than I expected or that anyone else I know has done it.
If you look at the time stamp you will see that I wrote this around 5am. I don't sleep. That is the one thing that seems to be normal, lol. I will keep updated as much as I can. Please keep in touch.
Through Monday July 13th - The long road became a little longer.
On our visit to the girls on sunday we found out Megan had had a couple of heartrate drops that were significant and the girls would be getting a brand new doctor Monday morning. He was new to the area, the hospital, this practice and most importantly my girls. We were told they would not be released if they had a spell within the last 5 days and now it would be 48 hours or so since last spell. So here's all of the questions that started going through my head. Would Megan be there another week? Would I be bringing Olivia home Monday or would they keep her? Would the new doctor be comfortable releasing 2 little girls he barely knew? Would the doctor be updated with how involved I had been the whole way and how ready we were?
I made sure I was there for rounds 9am Monday morning so I could listen to the update given to the doctor and hear his concerns and plan of action. I found out the doctor had taken time before his shift started to come meet my girls while they were awake and even knew their names. He had been told a lot about them and our family.
He said with her spells he would like to keep Megan one more day to watch her. He would also keep Olivia so coming home would be easier on me (both at the same time.) If Megan didn't have any spells he would release them both Tuesday, if she did he would release Olivia and keep Megan the rest of the week. (Insurance company wouldn't allow Olivia to stay which was fine with me) I spent the day finishing up a few things I had overlooked.
Saturday, July 11, 2009
Sorry it been so long
Hello everyone, first of all I want to apologize that I got so far behind in this blog but it was for good reason. I have been very busy at work and getting these girls healthy enough to come home. That's right they have set a date for them to come home. I will give you some highlights of the last couple weeks until I can get caught up.
June 24th the girls turned 2 months old. We had a photographer come in and photograph them (pics to come soon). Megan has started eating from bottles 100% of the time and Olivia part of the time.
June 26th turned 9 weks old.
June 28th the girls started using regular slow flow nipples like you buy in the store, no longer on preemie slow flow nipples. Olivia was put on the 30 calorie formula. Megan was weaned to different Oxygen new formula is 100% @ .5L/minute, they come home on .1L/min. The Oxygen will stay at 100% now we will just control the flow. (They were on high flow lower percentage but they can't come home on that).
June 29th Olivia went 24 hours without a tube feed so her O2 was switched also. She is starting out at .5L/min but they will wait a few days until they start weaning her. Meanwhile Megan was weaned to .4L/min today.
June 30th Megan was weaned to .3L/min and it has been 36 hours since she has had a spell of any kind. Way to go big girl.
July 1st Olivia hit 6 LB .9 OZ. Megan was weaned to .2L/min and taken off all of her medication. Olivia started having O2 weaned, is at .4L/min. The girls are eating a ton now M=47 mls and O=48mls.
July 2nd Megan hit 6LB .2 OZ. Both had eye exams with no changes. Very good sign, means they only need to have them checked every 2 weeks. Olivia weaned to .3L/min and Megan made it to .1L/min.
Friday July 3rd. Had big meeting with docs but being holiday weekend respiratory, social worker, cardiologist and others no shows. Very bummed. Did meet with neonatalogist though. Some risks or problems the girls may have are 1. Growth - will have to catch up with other childeren and the lungs need to heal 2. developmentally they will start out behind (should catch up). We (as caregivers) need to stay healthy. We have to have flu shots and tetanus booster with whatever else is recommended by the CDC. We have to keep house very clean, they even recommended removing our carpeting. We had to learn CPR, the Heimlich maneuver and how to read their monitors and set up their oxygen, as does anyone who watches them. We have to do a "care by parent." We have to watch very closely who comes around the girls. We have to be a stickler for anti-microbial hand sanitizer use and that no one sick at all comes around. I was hoping it wouldn't be that strict but their lves depend on it. Docs say an infection, especially a lung one, would be catastrophic to them. The girls will be seen by their pediatrician, BPD clinic (2-3 years), eye specialist, cardiologist (Olivia) and many more for the next few years or so. So I will be very busy. On to the girls today.
Megan failed her test of being removed from oxygen completely, it was too much work for her body to handle and she had a brady. She was put back on oxygen within a couple minutes. It looks like she will come home on oxygen. Oh yeah. Megan is now bigger than Olivia. She weighs 6 LB 2.6OZ to Olivia 6 LB 1.7 OZ.
Olivia was weaned to .3L/min.
After the local fireworks, traffic was so bad Mommy walked to the hospital so I could make their midnight cares and sent Daddy for the truck. I made it in time. Can't believe what I will do for them, lol.
July 4th - Woo hoo FIREWORKS TIME !!!
Today it has been 100 days since I was admitted to the hospital. What a road this has been.
We finally met another set of twins. Boy/Girl born on the fourth. Keeping their info private for now until I have permission. There has not been another set of twins in the NICU since the week the girls were born. Which is a very good thing (means no other sick babies) but was very lonely being the only one. I can say they are doing very well though.
July 5th Th girls were switched to 30 calorie Neosure, which is the formula they will be on when they come home. During their baths we changed out their O2 masks and they did pretty well. O2 levels stayed high but not high enough. Megan has been having several bradys per shift now and they are thinking of raising her O2 levels. Both girls had fairly large weight gains the last couple days (probably due to being off meds and formula change.) Docs say nothing to worry about. Megan is 18.2 Inches long and 6 LB 6.8 OZ. Olivia is up to 18.4 Inches long and 6 LB 5.8 OZ.
July 6th. Had to increase Megans O2 back up to .2L/min. Olivia failed her "off O2" test so it is official both girls will come home on Oxygen and apnea monitors.
July 7th. Coming home date set. Monday July 13th. Oh my gosh! That is so close. Everyone has been asking all along if I have everything ready and I have been saying yes. What I didn't realize was I had gotten ready for 2 healthy babies and didn't have any idea what all is involved in caring for special care babies at home. Starting to freak out quite a bit and am walking around in a daze.
July 9th. Today is the big meeting where all of the babies (at-home) caregivers get together for monitor and oxygen hook up training. We were all at the hospital and the O2/monitor company was 2 hours late. Everyone had to leave except Daddy and I, so again, it is on us to train everyone else. (Great, just what I needed more stress and stuff I have to do myself).
Daddy and I completed out CPR/Heimlich video and demonstration, too. Daddy and I stayed overnight at the hospital for "Care by parent." We have the girls in a room outside the nursey and we are responsible for their care. It went pretty well after we finally got set up. They had had twins in there before but not with both on O2. So Megan was hooked up to hospital O2 and on Olivia we used one of our portable tanks. I think it went pretty smoothly. We only had 2 alarms the whole night. One was a disconnected lead on Olivia and the other was high heartrate on Megan but it was after she had spit up and was very upset.
July 10th. By the way, the windshield on my brand new car broke. Just needed to vent about that one because I thought I had reached the limit of things I could be pissed about but nope, this one meant more stress too.
The oxygen was delivered today and instead of the big tanks like what was described to us the day before we got 2 machines the size of window airconditioners that run and vibrate the house constantly, they are so loud and they scare the s--t out of Echo. They make noise similar to the compressors used in auto garages. Which you all know I am accustomed to, just not in my living room.
I cannot believe how much stuff is involved in all this. I seriously think my huge brand new double stroller is TOO SMALL. I mean 2 babies, 2 carseats, 2 oxygen tanks (in bags) 2 monitors and a diaper bag. I am going to have to be some kind of magician to travel with these 2. Oh yeah, we also found out the Daddy doesn't fit in the front seat with the carseats installed. We were so excited to have our first four-door car, ugh!!! I am so happy and stressed a the same time. I don't want anyone to get the impression I blame my girls at all. I don't. I am just so frustrated with the fact nothing has gone normal for me in the baby department.
That's all I have for now. It was a lot more than I realized. Have a ton to do in the next few days but please call or write to me. I love to hear from all of you. They will be getting their hospital pics soon and I will get them out to anyone interested.
June 24th the girls turned 2 months old. We had a photographer come in and photograph them (pics to come soon). Megan has started eating from bottles 100% of the time and Olivia part of the time.
June 26th turned 9 weks old.
June 28th the girls started using regular slow flow nipples like you buy in the store, no longer on preemie slow flow nipples. Olivia was put on the 30 calorie formula. Megan was weaned to different Oxygen new formula is 100% @ .5L/minute, they come home on .1L/min. The Oxygen will stay at 100% now we will just control the flow. (They were on high flow lower percentage but they can't come home on that).
June 29th Olivia went 24 hours without a tube feed so her O2 was switched also. She is starting out at .5L/min but they will wait a few days until they start weaning her. Meanwhile Megan was weaned to .4L/min today.
June 30th Megan was weaned to .3L/min and it has been 36 hours since she has had a spell of any kind. Way to go big girl.
July 1st Olivia hit 6 LB .9 OZ. Megan was weaned to .2L/min and taken off all of her medication. Olivia started having O2 weaned, is at .4L/min. The girls are eating a ton now M=47 mls and O=48mls.
July 2nd Megan hit 6LB .2 OZ. Both had eye exams with no changes. Very good sign, means they only need to have them checked every 2 weeks. Olivia weaned to .3L/min and Megan made it to .1L/min.
Friday July 3rd. Had big meeting with docs but being holiday weekend respiratory, social worker, cardiologist and others no shows. Very bummed. Did meet with neonatalogist though. Some risks or problems the girls may have are 1. Growth - will have to catch up with other childeren and the lungs need to heal 2. developmentally they will start out behind (should catch up). We (as caregivers) need to stay healthy. We have to have flu shots and tetanus booster with whatever else is recommended by the CDC. We have to keep house very clean, they even recommended removing our carpeting. We had to learn CPR, the Heimlich maneuver and how to read their monitors and set up their oxygen, as does anyone who watches them. We have to do a "care by parent." We have to watch very closely who comes around the girls. We have to be a stickler for anti-microbial hand sanitizer use and that no one sick at all comes around. I was hoping it wouldn't be that strict but their lves depend on it. Docs say an infection, especially a lung one, would be catastrophic to them. The girls will be seen by their pediatrician, BPD clinic (2-3 years), eye specialist, cardiologist (Olivia) and many more for the next few years or so. So I will be very busy. On to the girls today.
Megan failed her test of being removed from oxygen completely, it was too much work for her body to handle and she had a brady. She was put back on oxygen within a couple minutes. It looks like she will come home on oxygen. Oh yeah. Megan is now bigger than Olivia. She weighs 6 LB 2.6OZ to Olivia 6 LB 1.7 OZ.
Olivia was weaned to .3L/min.
After the local fireworks, traffic was so bad Mommy walked to the hospital so I could make their midnight cares and sent Daddy for the truck. I made it in time. Can't believe what I will do for them, lol.
July 4th - Woo hoo FIREWORKS TIME !!!
Today it has been 100 days since I was admitted to the hospital. What a road this has been.
We finally met another set of twins. Boy/Girl born on the fourth. Keeping their info private for now until I have permission. There has not been another set of twins in the NICU since the week the girls were born. Which is a very good thing (means no other sick babies) but was very lonely being the only one. I can say they are doing very well though.
July 5th Th girls were switched to 30 calorie Neosure, which is the formula they will be on when they come home. During their baths we changed out their O2 masks and they did pretty well. O2 levels stayed high but not high enough. Megan has been having several bradys per shift now and they are thinking of raising her O2 levels. Both girls had fairly large weight gains the last couple days (probably due to being off meds and formula change.) Docs say nothing to worry about. Megan is 18.2 Inches long and 6 LB 6.8 OZ. Olivia is up to 18.4 Inches long and 6 LB 5.8 OZ.
July 6th. Had to increase Megans O2 back up to .2L/min. Olivia failed her "off O2" test so it is official both girls will come home on Oxygen and apnea monitors.
July 7th. Coming home date set. Monday July 13th. Oh my gosh! That is so close. Everyone has been asking all along if I have everything ready and I have been saying yes. What I didn't realize was I had gotten ready for 2 healthy babies and didn't have any idea what all is involved in caring for special care babies at home. Starting to freak out quite a bit and am walking around in a daze.
July 9th. Today is the big meeting where all of the babies (at-home) caregivers get together for monitor and oxygen hook up training. We were all at the hospital and the O2/monitor company was 2 hours late. Everyone had to leave except Daddy and I, so again, it is on us to train everyone else. (Great, just what I needed more stress and stuff I have to do myself).
Daddy and I completed out CPR/Heimlich video and demonstration, too. Daddy and I stayed overnight at the hospital for "Care by parent." We have the girls in a room outside the nursey and we are responsible for their care. It went pretty well after we finally got set up. They had had twins in there before but not with both on O2. So Megan was hooked up to hospital O2 and on Olivia we used one of our portable tanks. I think it went pretty smoothly. We only had 2 alarms the whole night. One was a disconnected lead on Olivia and the other was high heartrate on Megan but it was after she had spit up and was very upset.
July 10th. By the way, the windshield on my brand new car broke. Just needed to vent about that one because I thought I had reached the limit of things I could be pissed about but nope, this one meant more stress too.
The oxygen was delivered today and instead of the big tanks like what was described to us the day before we got 2 machines the size of window airconditioners that run and vibrate the house constantly, they are so loud and they scare the s--t out of Echo. They make noise similar to the compressors used in auto garages. Which you all know I am accustomed to, just not in my living room.
I cannot believe how much stuff is involved in all this. I seriously think my huge brand new double stroller is TOO SMALL. I mean 2 babies, 2 carseats, 2 oxygen tanks (in bags) 2 monitors and a diaper bag. I am going to have to be some kind of magician to travel with these 2. Oh yeah, we also found out the Daddy doesn't fit in the front seat with the carseats installed. We were so excited to have our first four-door car, ugh!!! I am so happy and stressed a the same time. I don't want anyone to get the impression I blame my girls at all. I don't. I am just so frustrated with the fact nothing has gone normal for me in the baby department.
That's all I have for now. It was a lot more than I realized. Have a ton to do in the next few days but please call or write to me. I love to hear from all of you. They will be getting their hospital pics soon and I will get them out to anyone interested.
Tuesday, June 23, 2009
Monday June 22, 2009 - Medical Update
Megan's weight is 2298g, 5 LB 1.1 OZ. Her feed is now 40 mls over 30 mins, still getting the 30 calorie formula. Megan passed her hearing exam. Her state screenings all came back normal. They dropped her sodium supplement because her level is closer to where it should be. She is still on caffeine, sodium chloride and aldactazide. Her white count is normal and her bone marrow has started producing it own blood cells. ( I didn't realize when you give a baby blood the bone marrow says "hey, I don't have to work anymore she's getting blood elsewhere" and shuts down) So making blood is a very good thing. Her head is still clean (no brain bleeds) and her labs and blood gases came back perfect. She is still putting on weight which is most important.
Olivia's weight is 2568, 5 LB 10.6 OZ. She finally stopped those massive increases in fluid retantion. Her feed is now 44 mls over 45 mins. Olivia failed her hearing exam in her left ear, her right passed. It could be that she was laying on that side or because of all the tubes she couldn't hear as well. The test is listed as inconclusive and she will be retested before she comes home. Her state screenings were inconclusive because it was done so close to the last time she received blood nd will also be redone. She is still on caffiene, sodium chloride (but quantity lessened), potassium chloride and they restarted her on the aldactazide. Her white count is normal and her bone marrow is working. Her head is still clean. She still has both her PDA and her ASD and will continue care with a cardiologist once she comes home. Her heart is otherwise normal. Her labs, blood gases and electrolytes all came back perfect. She does have reflux though (Megan may have it but a more mild case) and we will try everything we can to not have to put them on meds for it.
Now that the girls are 36 weeks gestational age they have been officially diagnosed with BPD or Chronic Lung Disease. The nurses compare it to emphysema in adults but the girls can outgrow it because the lungs continue to develop until approx age 7.
The girls cannot come home on the type of feeding tubes they have now. They curently have a tube down their throats into their stomachs. If they do not learn how to bottle feed they will have to have "G" tubes. It is a tube inserted into the stomach through the abdomen. A G-tube and be used for up to 6 months. I believe the term used to describe this type of feeding is "Bolus." We will use large syringes to insert the food directly into their stomachs.
It is time for the girls 2 month vaccines. Vaccines in preemies can cause setbacks in breathing from having to go back on C-Pap to possibly the ventilator. They will give the girls pain medication for shot time and treat them with Tylenol for the next 24 hours.
I pulled the girls going home outfits out of the closet and found they have outgrown them. I know I should be happy they are so big and doing well but I am so sad they are still in the hospital.
Please pray for my little girls. I have been crying for days now. All of this is so hard to handle. I know in the end I will have 2 perfect little angels but the road is so long from here and I am trying to take each day as it comes.
Megan's weight is 2298g, 5 LB 1.1 OZ. Her feed is now 40 mls over 30 mins, still getting the 30 calorie formula. Megan passed her hearing exam. Her state screenings all came back normal. They dropped her sodium supplement because her level is closer to where it should be. She is still on caffeine, sodium chloride and aldactazide. Her white count is normal and her bone marrow has started producing it own blood cells. ( I didn't realize when you give a baby blood the bone marrow says "hey, I don't have to work anymore she's getting blood elsewhere" and shuts down) So making blood is a very good thing. Her head is still clean (no brain bleeds) and her labs and blood gases came back perfect. She is still putting on weight which is most important.
Olivia's weight is 2568, 5 LB 10.6 OZ. She finally stopped those massive increases in fluid retantion. Her feed is now 44 mls over 45 mins. Olivia failed her hearing exam in her left ear, her right passed. It could be that she was laying on that side or because of all the tubes she couldn't hear as well. The test is listed as inconclusive and she will be retested before she comes home. Her state screenings were inconclusive because it was done so close to the last time she received blood nd will also be redone. She is still on caffiene, sodium chloride (but quantity lessened), potassium chloride and they restarted her on the aldactazide. Her white count is normal and her bone marrow is working. Her head is still clean. She still has both her PDA and her ASD and will continue care with a cardiologist once she comes home. Her heart is otherwise normal. Her labs, blood gases and electrolytes all came back perfect. She does have reflux though (Megan may have it but a more mild case) and we will try everything we can to not have to put them on meds for it.
Now that the girls are 36 weeks gestational age they have been officially diagnosed with BPD or Chronic Lung Disease. The nurses compare it to emphysema in adults but the girls can outgrow it because the lungs continue to develop until approx age 7.
The girls cannot come home on the type of feeding tubes they have now. They curently have a tube down their throats into their stomachs. If they do not learn how to bottle feed they will have to have "G" tubes. It is a tube inserted into the stomach through the abdomen. A G-tube and be used for up to 6 months. I believe the term used to describe this type of feeding is "Bolus." We will use large syringes to insert the food directly into their stomachs.
It is time for the girls 2 month vaccines. Vaccines in preemies can cause setbacks in breathing from having to go back on C-Pap to possibly the ventilator. They will give the girls pain medication for shot time and treat them with Tylenol for the next 24 hours.
I pulled the girls going home outfits out of the closet and found they have outgrown them. I know I should be happy they are so big and doing well but I am so sad they are still in the hospital.
Please pray for my little girls. I have been crying for days now. All of this is so hard to handle. I know in the end I will have 2 perfect little angels but the road is so long from here and I am trying to take each day as it comes.
Sunday June 21, 2009 - Father's Day
Megan's weight is 2275g, 5 LB .2 OZ. Megan's food is up to 40 mls per feed. She took to whole feeds by bottle (big girl, mommy so proud) and a little bit of her third feed.
Olivia's weight is 2554, 5 LB 10.1 OZ. Her formula is up to 44 mls per feed. She took 2 partial bottles today, one 16 mls and the other 15 mls.
Mommy gave both girls a bath today with Mimi assitance.
Megan's weight is 2275g, 5 LB .2 OZ. Megan's food is up to 40 mls per feed. She took to whole feeds by bottle (big girl, mommy so proud) and a little bit of her third feed.
Olivia's weight is 2554, 5 LB 10.1 OZ. Her formula is up to 44 mls per feed. She took 2 partial bottles today, one 16 mls and the other 15 mls.
Mommy gave both girls a bath today with Mimi assitance.
Saturday June 20, 2009
Megan's weight is 2233, 4 LB 14.8 OZ. She took 17mls of food by bottle her first feed today. She is up to 39 mls of formula per feed.
Olivia's weight is 2466, 4 LB 7 OZ. Up another 69 grams. This was a very long weekend with a little girl so miserable. Her food was increased to 41 mls.
Eye exam results. Both girls have mild ROP. Retinopathy of Prematurity also called Retrolantal Fibroplasia. Theirs is zone 2, stage 1, non plus. From what I've been able to find out it is normal for premies eyes to have this condition and it doesn't mean they will have eye problems but they could. If the retinas start detatching they would need corrected (either surgery or by laser.)
Megan's weight is 2233, 4 LB 14.8 OZ. She took 17mls of food by bottle her first feed today. She is up to 39 mls of formula per feed.
Olivia's weight is 2466, 4 LB 7 OZ. Up another 69 grams. This was a very long weekend with a little girl so miserable. Her food was increased to 41 mls.
Eye exam results. Both girls have mild ROP. Retinopathy of Prematurity also called Retrolantal Fibroplasia. Theirs is zone 2, stage 1, non plus. From what I've been able to find out it is normal for premies eyes to have this condition and it doesn't mean they will have eye problems but they could. If the retinas start detatching they would need corrected (either surgery or by laser.)
Friday June 19, 2009 - 8 Weeks Old
Megan's weight is 2221g, 4 LB 14 OZ.
Olivia's weight is 2397g, 5 LB 4.5 OZ. SOMETHINGS WRONG! Olivia gained 180 grams (6 ounces) in one day. Her face is all swollen as well as her hands, feet, arms, legs etc... I asked the doctor about it and he said the lasics didn't work, her last dose was thursday and she is now retaining water (no kidding). He is going to run bloodwork on monday and adjusting the sodium supplement. Doesn't want to make any more big changes immediately as the meds could have seriously screwed up her electrolyte balance. She looks and sounds absolutely miserable.
Dr suspects both girls will now come home on Oxygen.
Megan's weight is 2221g, 4 LB 14 OZ.
Olivia's weight is 2397g, 5 LB 4.5 OZ. SOMETHINGS WRONG! Olivia gained 180 grams (6 ounces) in one day. Her face is all swollen as well as her hands, feet, arms, legs etc... I asked the doctor about it and he said the lasics didn't work, her last dose was thursday and she is now retaining water (no kidding). He is going to run bloodwork on monday and adjusting the sodium supplement. Doesn't want to make any more big changes immediately as the meds could have seriously screwed up her electrolyte balance. She looks and sounds absolutely miserable.
Dr suspects both girls will now come home on Oxygen.
Monday, June 22, 2009
Wednesday June 17, 2009 (55 days for those counting)
Megan's weight is 2085g, 4 LB 9.5 OZ. Only 96 grams less than sissy. Catching up.
Olivia's weight is 2181g, 4 LB 12.9 OZ. She is up to 41 mls of food. Spoke to Dr today. He said as good as Olivia is doing he is going to try a 3 day run of lasics (stronger than the ones they have been on) to clear what they suspect is the last little bit of fluid out of her lungs and get her off Oxygen soon.
Megan's weight is 2085g, 4 LB 9.5 OZ. Only 96 grams less than sissy. Catching up.
Olivia's weight is 2181g, 4 LB 12.9 OZ. She is up to 41 mls of food. Spoke to Dr today. He said as good as Olivia is doing he is going to try a 3 day run of lasics (stronger than the ones they have been on) to clear what they suspect is the last little bit of fluid out of her lungs and get her off Oxygen soon.
Sunday June 14, 2009
Megan's weight is 1993g, 4 LB 6.3 OZ. Her length is 44.5 cm, 17.5 inches, head circumference 30.5 cm, 12 inches. Her food was increased to 34 mls over 45 mins.
Olivia's weight is 2142, 4 LB 11 OZ. She doubled her birth weight!! Her length is 44 cm, 17.3 inches (uh oh, sissy is taller then her already), her head is 31.5 cm, 12.4 inches. Her food was increased to 38 mls.
Length is approx. It is hard to tell exactly if they don't stretch out all the way or if they arch their backs, lol.
Megan's weight is 1993g, 4 LB 6.3 OZ. Her length is 44.5 cm, 17.5 inches, head circumference 30.5 cm, 12 inches. Her food was increased to 34 mls over 45 mins.
Olivia's weight is 2142, 4 LB 11 OZ. She doubled her birth weight!! Her length is 44 cm, 17.3 inches (uh oh, sissy is taller then her already), her head is 31.5 cm, 12.4 inches. Her food was increased to 38 mls.
Length is approx. It is hard to tell exactly if they don't stretch out all the way or if they arch their backs, lol.
Saturday June 13, 2009
Megan's weight is 1925, 4 LB 3.9 OZ. Only 150g less than sissy, catching up. Megan moved into an open crib today while mommy and daddy were there. She transitioned a little better than syssy. Daddy gave Megan a bath, this was the first bath we've done in a warmer. It's a little table with a heat lamp above, definitely easier to work in than the Isolettes.
Olivia's weight is 2073g, 4 LB 9.1 OZ. She took approx 8mls from a bottle at her 3am feeding. Daddy gave Olivia a bath tonight also but she kept pooping during it. It was hard to keep her clean. She is so funny.
Megan's weight is 1925, 4 LB 3.9 OZ. Only 150g less than sissy, catching up. Megan moved into an open crib today while mommy and daddy were there. She transitioned a little better than syssy. Daddy gave Megan a bath, this was the first bath we've done in a warmer. It's a little table with a heat lamp above, definitely easier to work in than the Isolettes.
Olivia's weight is 2073g, 4 LB 9.1 OZ. She took approx 8mls from a bottle at her 3am feeding. Daddy gave Olivia a bath tonight also but she kept pooping during it. It was hard to keep her clean. She is so funny.
Friday June 12, 2009 7 Weeks Old(Daddy's Birthday)
Megan's weight is 1864, 4 LB 1.7 OZ (woo hoo over 4lbs). Her food is the same. At her 11 pm feed she took her first drink from a bottle. She took approx 8 mls!!!!!
Olivia's weight is 2044, 4 LB 8.1 OZ. Her food was increased to 27 calorie high protein formula. It is made by mixing the 24 cal high pro with the 30 cal in equal parts.
It is difficult for the girls to drinks with the feeding tubes in. They can't get a good seal on the nipple. The feeding tube cannot be put in their noses yet because of the canula. If they take part of a feed from bottle when tube not in they will sometimes spit it back up when tube is reinserted. Very tough to figure out what works best and it is all very tiring for the girls.
Megan's weight is 1864, 4 LB 1.7 OZ (woo hoo over 4lbs). Her food is the same. At her 11 pm feed she took her first drink from a bottle. She took approx 8 mls!!!!!
Olivia's weight is 2044, 4 LB 8.1 OZ. Her food was increased to 27 calorie high protein formula. It is made by mixing the 24 cal high pro with the 30 cal in equal parts.
It is difficult for the girls to drinks with the feeding tubes in. They can't get a good seal on the nipple. The feeding tube cannot be put in their noses yet because of the canula. If they take part of a feed from bottle when tube not in they will sometimes spit it back up when tube is reinserted. Very tough to figure out what works best and it is all very tiring for the girls.
Wednesday June 10, 2009
Megan's weight 1793g, 3 LB 15 OZ. She is still getting 30 mls of 30 calorie but they decreased the time to 45 mins. She is having a few more spells but not enough to require any more adjustments. Her readiness scores have been mostly 4's with a 3, (5 is perfect) but with high respirations.
Olivia's weight 1907g, 4 LB 3.2 OZ. They also tried to decrese her feed time to 45 mins but her spells and bradys increased alot so they put her back at 60 mins.
If they get a 5 and their respirations are below 70 they are allowed to attempt bottle feeding. The lower resps have been few and far between.
Megan's weight 1793g, 3 LB 15 OZ. She is still getting 30 mls of 30 calorie but they decreased the time to 45 mins. She is having a few more spells but not enough to require any more adjustments. Her readiness scores have been mostly 4's with a 3, (5 is perfect) but with high respirations.
Olivia's weight 1907g, 4 LB 3.2 OZ. They also tried to decrese her feed time to 45 mins but her spells and bradys increased alot so they put her back at 60 mins.
If they get a 5 and their respirations are below 70 they are allowed to attempt bottle feeding. The lower resps have been few and far between.
Tuesday June 9, 2009
Megans weight is 1767g, 3 LB OZ. They have started keeping track of readiness scores for her too. Mommy suspects Megan will take to bottle feeding better than sissy. Based on how she does with binky and rooting around and how alert she has been lately. They have started keeping track of readiness scores for Megan too. Megan had a bath.
Olivia's weight 1896g, 4 LB 2.9 OZ. "When Mommy came in she wasn't sure where I was because she saw an open crib where my Isolette was. I moved into and open crib and didn't tell her. Surprise!!! Big girl bed!!!!!" Olivia's transition was a little difficult and she kept having spells but she never needed to be put back in Isolette.
Megans weight is 1767g, 3 LB OZ. They have started keeping track of readiness scores for her too. Mommy suspects Megan will take to bottle feeding better than sissy. Based on how she does with binky and rooting around and how alert she has been lately. They have started keeping track of readiness scores for Megan too. Megan had a bath.
Olivia's weight 1896g, 4 LB 2.9 OZ. "When Mommy came in she wasn't sure where I was because she saw an open crib where my Isolette was. I moved into and open crib and didn't tell her. Surprise!!! Big girl bed!!!!!" Olivia's transition was a little difficult and she kept having spells but she never needed to be put back in Isolette.
Sunday June 7, 2009
Megan's weight is 1717, 3 LB 12.5 OZ. Her length is 42CM or 16.8 Inches, her head measured 29.5 CM or 11.8 Inches around. She was put back on nasal canula 100% of the time. No more C-Pap at all.
Olivia's weight is 1847g, 4 LB 1 OZ. Her length is 42 CM also, her head measured 30 CM or 11.8 inches. They started keeping track of her "readiness scores" that will tell when she is ready to start bottle feeding. "Readiness scores" keep track of how alert thay are during cares. do they stay awake entire length or care and do they practice sucking on their binkys.
Megan's weight is 1717, 3 LB 12.5 OZ. Her length is 42CM or 16.8 Inches, her head measured 29.5 CM or 11.8 Inches around. She was put back on nasal canula 100% of the time. No more C-Pap at all.
Olivia's weight is 1847g, 4 LB 1 OZ. Her length is 42 CM also, her head measured 30 CM or 11.8 inches. They started keeping track of her "readiness scores" that will tell when she is ready to start bottle feeding. "Readiness scores" keep track of how alert thay are during cares. do they stay awake entire length or care and do they practice sucking on their binkys.
Saturday, June 6, 2009
Megan is up to 1707g, 3 LB 12.2 OZ.
Olivia's weight is 1830g, 4 LBs (big girl).
Neither girl had any changes in food nor breathing. Both got new Isolettes and are on air mode. They are wearing clothes !!!!. Today we had a visitor that took some really good professional pictures (hopefully to be posted soon) Mommy holds both her girls almost every visit now and whenever she can she holds them together.
Megan is up to 1707g, 3 LB 12.2 OZ.
Olivia's weight is 1830g, 4 LBs (big girl).
Neither girl had any changes in food nor breathing. Both got new Isolettes and are on air mode. They are wearing clothes !!!!. Today we had a visitor that took some really good professional pictures (hopefully to be posted soon) Mommy holds both her girls almost every visit now and whenever she can she holds them together.
Friday, June 12, 2009
Thursday June 4, 2009
Megan - 1542g - 3 LB 6.4 OZ - DOUBLE HER BIRTHWEIGHT !!! - Her feeds were increased again. She is up to 27 mls of 30 calorie formula over 60 mins every 3 hours.
Olivia - 1738g - 3 LB 13.3 OZ - Olivias feed was increased to 33 mls over 60 mins of 24 calorie HIGH PROTEIN formula every 3 hours.
Both girls were bad today and pulled out their feeding tubes. Got new ones. Maybe they think they don't need them anymore and want bottles. Hope, Hope....
Mommy held both girls.
Megan - 1542g - 3 LB 6.4 OZ - DOUBLE HER BIRTHWEIGHT !!! - Her feeds were increased again. She is up to 27 mls of 30 calorie formula over 60 mins every 3 hours.
Olivia - 1738g - 3 LB 13.3 OZ - Olivias feed was increased to 33 mls over 60 mins of 24 calorie HIGH PROTEIN formula every 3 hours.
Both girls were bad today and pulled out their feeding tubes. Got new ones. Maybe they think they don't need them anymore and want bottles. Hope, Hope....
Mommy held both girls.
Sunday May 31, 2009
Megan's weight is up to 1452g or 3 LB 3.2 OZ. She is back on C-Pap for 3 hours out of 12. Her feeds were increased to 25 mls over 90 mins. She is 16.14 inches long with a head circumference of 11.02 inches.
Olivia's weight is up to 1669g or 3 LB 11 OZ. Her feeds are up to 31mls over 60mins. She is 16.14 inches long with a head circumference of 11.41 inches.
Today was the first time Mommy held both of her girls at the same time.
Tuesday, June 2, 2009
Saturday May 30, 2009 - I met my sister
Megan's weight is 1411g or 3 LB 1.8 OZ, same as yesterday.
Olivia's weight is 1652g or 3 LB 10 OZ.
Because both of the girls were on canulas when it was time to change their beds out we turned Megans around. Now they have enough leeway in their wires to be next to each other when we are holding them. Mommy held Megan and Daddy held Olivia. Daddy did the girls baths today. He is an awesome daddy. The girls got their first pictures together and we took our first family pic. Today was a wonderful day.
Megan's weight is 1411g or 3 LB 1.8 OZ, same as yesterday.
Olivia's weight is 1652g or 3 LB 10 OZ.
Because both of the girls were on canulas when it was time to change their beds out we turned Megans around. Now they have enough leeway in their wires to be next to each other when we are holding them. Mommy held Megan and Daddy held Olivia. Daddy did the girls baths today. He is an awesome daddy. The girls got their first pictures together and we took our first family pic. Today was a wonderful day.
Friday May 29, 2009 - 5 Weeks Old
-Megan's weight is 1412g or 3 LB 1.8 OZ. They are trying her on the 27 calorie formula at the same quantity, 24 mls. (She has the binky in the pics.) Megan has an umbilical hernia which will only require attention if it causes her pain, could be years from now.
-Olivia's weight is 1635g or 3 LB 9.7OZ. She is at 29 mls. Her murmur is getting quieter. Drs didn't say exactly what that means but my impression is the PDA could be getting bigger, the bigger the opening the less turbulent noise. The ASD may never close but can be repaired with a simple procedure where they put a band around it to close it. She may always have a murmur too.
-BOTH GIRLS WENT ON CANULA FULL TIME TODAY !!! Sodium Chloride needed to be increased again. Will probably be able to quit sodium supplements once they stop the dieuretics.
Thursday May 28, 2009
Megan'a weight is 1405g or 3 LB 1.5 OZ. Her food was increased to 24mls over 90 minutes.
Olivia's weight is 1526g or 3 lB 5.8 OZ. She was switched to high protein 24 calorie formula as she can't tolerate 27 calorie yet.
When they are on the C-Pap it is usually set around 22% oxygen. The lowest setting is 22% which is the same as the air we breathe. They are getting close.
Mommy and daddy hald Olivia today.
Megan'a weight is 1405g or 3 LB 1.5 OZ. Her food was increased to 24mls over 90 minutes.
Olivia's weight is 1526g or 3 lB 5.8 OZ. She was switched to high protein 24 calorie formula as she can't tolerate 27 calorie yet.
When they are on the C-Pap it is usually set around 22% oxygen. The lowest setting is 22% which is the same as the air we breathe. They are getting close.
Mommy and daddy hald Olivia today.
Saturday, May 30, 2009
Wednesday May 27, 2009
Megan is 1376g or 3 LB 0.5 OZ. Woo hoo over 3 LBS !!!!
Olivia is 1526g or 3 LB 5.8 OZ.
During my lunch break I caled to get the girls update and Dr. came on the phone. Said the girls are making slow progress but progress none the less. They are both on the 9 hour canula 3 hour C-Pap rotation. Their feedings are going good as they are gaining weight. In the next couple weeks they will start testing to see if they are ready to start bottle feedings. Last night they had NO SPELLS - Either of them. Great night. A few spells again today but a lot less than even last week.
At the evening visit Mommy gave them both baths.
Megan is 1376g or 3 LB 0.5 OZ. Woo hoo over 3 LBS !!!!
Olivia is 1526g or 3 LB 5.8 OZ.
During my lunch break I caled to get the girls update and Dr. came on the phone. Said the girls are making slow progress but progress none the less. They are both on the 9 hour canula 3 hour C-Pap rotation. Their feedings are going good as they are gaining weight. In the next couple weeks they will start testing to see if they are ready to start bottle feedings. Last night they had NO SPELLS - Either of them. Great night. A few spells again today but a lot less than even last week.
At the evening visit Mommy gave them both baths.
Tuesday May 26, 2009
Megan's weight is 1349g or 2 LB 15.6 OZ. Her C-Pap time was decreased to 3 hours and still 9 on the canula. Back to 27 calorie formula, was tolerating 30 cal just yet, will try again soon. Moved up to 24 mls of food.
Olivia's weight is 1575g or 3 LB 7.5 OZ. She is now on C-Pap / canula rotation every 6 hours.
Spoke to their Nurse today and their sodium levels continue to be low so the supplemental sodium chloride was increased.
Megan's weight is 1349g or 2 LB 15.6 OZ. Her C-Pap time was decreased to 3 hours and still 9 on the canula. Back to 27 calorie formula, was tolerating 30 cal just yet, will try again soon. Moved up to 24 mls of food.
Olivia's weight is 1575g or 3 LB 7.5 OZ. She is now on C-Pap / canula rotation every 6 hours.
Spoke to their Nurse today and their sodium levels continue to be low so the supplemental sodium chloride was increased.
Thursday, May 28, 2009
Tuesday, May 26, 2009
Monday May 25, 2009 - Memorial Day
Megan's weight is 1360, 2 LB 15.97 OZ. (1 gram shy of 3 lbs, lol). She has been increased to 30 calorie formula, 23 mls over 1.5 hours. She is on C-Pap 6 hours and canula 9 hours. Mommy held Megan today.
Olivia's weight is 1513, 3 LB 5 OZ. Feedings are the same. Olivia started back on the canula for 3 hour periods between 9 hour stays on C-Pap. Mommy held Olivia, too.
Megan's weight is 1360, 2 LB 15.97 OZ. (1 gram shy of 3 lbs, lol). She has been increased to 30 calorie formula, 23 mls over 1.5 hours. She is on C-Pap 6 hours and canula 9 hours. Mommy held Megan today.
Olivia's weight is 1513, 3 LB 5 OZ. Feedings are the same. Olivia started back on the canula for 3 hour periods between 9 hour stays on C-Pap. Mommy held Olivia, too.
Sunday May 24, 2009
Megan's weight is 1298g or 2 LB 13.7 OZ. Her head circumference is 27.5 cm, 10.8 inches, her length is 40 cm, 15.4 inches long. She had no changes from yesterday. Daddy changed and held Megan.
Olivia's weight is 1567 or 3 LB 7.5 OZ. Her head circ. is 28.5 cm, 11.2 inches, her length is 40.5 cm, 16 inches long. (She is pulling away from Megan again.) She was not tolerating 27 calorie formula so she was reduced to 24 calorie, 29 mls over 1 hour. They did a CBC and said her blood cultures look ok. They also did another x-ray and said her bowels are still distended but not as bad. (I know, they said still, no one even told me they were.) She does have some swelling in her genital area they are trying to determine the cause. Hopefully it is because she is on a tilted table, but it is weird that her legs/feet are not swollen. When mommy went to change Olivia she decided to go potty again right after old diaper was removed. Mommy is really being challenged changing this one. We did have a nice visit as I held her though.
Both girls had baths today.
Megan's weight is 1298g or 2 LB 13.7 OZ. Her head circumference is 27.5 cm, 10.8 inches, her length is 40 cm, 15.4 inches long. She had no changes from yesterday. Daddy changed and held Megan.
Olivia's weight is 1567 or 3 LB 7.5 OZ. Her head circ. is 28.5 cm, 11.2 inches, her length is 40.5 cm, 16 inches long. (She is pulling away from Megan again.) She was not tolerating 27 calorie formula so she was reduced to 24 calorie, 29 mls over 1 hour. They did a CBC and said her blood cultures look ok. They also did another x-ray and said her bowels are still distended but not as bad. (I know, they said still, no one even told me they were.) She does have some swelling in her genital area they are trying to determine the cause. Hopefully it is because she is on a tilted table, but it is weird that her legs/feet are not swollen. When mommy went to change Olivia she decided to go potty again right after old diaper was removed. Mommy is really being challenged changing this one. We did have a nice visit as I held her though.
Both girls had baths today.
Saturday May 23, 2009
Megan's weight is 1289g or 2 LB 3.4 OZ. She is up to 23 mls over 1.5 hours. She will only be on the C-Pap for 3 hours for every 9 hours on the canula. Funny story... Towards the end of her 9 hrs on the canula she started having some trouble keeping her O2 up so they decided to switch her back to C-Pap early, figured she was getting tired. After changing her over they found her O2 had come disconnected at the wall, the problem wasn't her it was equipment malfunction. I mean it's not funny she came disconnected just that the problem wasn't her. Mommy held Megan today.
Olivia's weight is 1473g or 3 LB 4 OZ. The results of her echocardiogram came back today. Her PDA that was classified as small is now small to moderate and she now shows an ASD (Atrial Septal Defect) which is an opening between the left and right sides of the heart, the atria. It allows blood to flow incorrectly. She also has BPD (chronic lung disease, like we described earlier when Megan was diagnosed with it.) All we can do at this point is monitor her condition and if problems necessitate it, action will be taken. FYI, they let me know she is now too old for medications to close the PDA or ASD. Please pray for her.
Thank you for the beautiful shower and all of the wonderful gifts !!!!
Megan's weight is 1289g or 2 LB 3.4 OZ. She is up to 23 mls over 1.5 hours. She will only be on the C-Pap for 3 hours for every 9 hours on the canula. Funny story... Towards the end of her 9 hrs on the canula she started having some trouble keeping her O2 up so they decided to switch her back to C-Pap early, figured she was getting tired. After changing her over they found her O2 had come disconnected at the wall, the problem wasn't her it was equipment malfunction. I mean it's not funny she came disconnected just that the problem wasn't her. Mommy held Megan today.
Olivia's weight is 1473g or 3 LB 4 OZ. The results of her echocardiogram came back today. Her PDA that was classified as small is now small to moderate and she now shows an ASD (Atrial Septal Defect) which is an opening between the left and right sides of the heart, the atria. It allows blood to flow incorrectly. She also has BPD (chronic lung disease, like we described earlier when Megan was diagnosed with it.) All we can do at this point is monitor her condition and if problems necessitate it, action will be taken. FYI, they let me know she is now too old for medications to close the PDA or ASD. Please pray for her.
Thank you for the beautiful shower and all of the wonderful gifts !!!!
Friday May 22, 2009
Megan's weight is 1292g or 2 LB 13.5 OZ. She is up to 21 mls of 27 calorie formula.
Olivia's weight is 1585g or 3 LB 8 OZ. They dropped her food back down to 29 mls over 60 mins.
She sounds so awful when she cries. I can tell she is distressed. They will remove the IV they used for the blood tonight.
Both girls got new beds today.
Took my last bottle of mother;s milk to hospital. Pumping was the hardest job I've had and I couldn't keep up. Talk about a kick in the gut. I feel so guilty I can't keep up. I'm glad the girls are in the right place to get better.
Megan's weight is 1292g or 2 LB 13.5 OZ. She is up to 21 mls of 27 calorie formula.
Olivia's weight is 1585g or 3 LB 8 OZ. They dropped her food back down to 29 mls over 60 mins.
She sounds so awful when she cries. I can tell she is distressed. They will remove the IV they used for the blood tonight.
Both girls got new beds today.
Took my last bottle of mother;s milk to hospital. Pumping was the hardest job I've had and I couldn't keep up. Talk about a kick in the gut. I feel so guilty I can't keep up. I'm glad the girls are in the right place to get better.
Thursday May 21, 2009
Megan's weight is 1317g or 2 LB 14.5 OZ. Megan is getting 20 mls of food over 1.5 hours by pump. She is on the C-Pap for 6 hours and the canula for 9 hours. Moving in the right direction.
Olivia's weight is 1554g or 3 LB 7 OZ. She was put back on the C-Pap (o2 at 41%) for the next 24 hours then will be reevaluated. Her bloodwork showed her red cells were down, anemic, so she is getting some pack red blood cells today. They give the blood by pump too just through an IV, She is getting 25 mls over 2.5 hours. Her feeds are up to 32 mls over 90 mins. She will have another echo today.
Megan's weight is 1317g or 2 LB 14.5 OZ. Megan is getting 20 mls of food over 1.5 hours by pump. She is on the C-Pap for 6 hours and the canula for 9 hours. Moving in the right direction.
Olivia's weight is 1554g or 3 LB 7 OZ. She was put back on the C-Pap (o2 at 41%) for the next 24 hours then will be reevaluated. Her bloodwork showed her red cells were down, anemic, so she is getting some pack red blood cells today. They give the blood by pump too just through an IV, She is getting 25 mls over 2.5 hours. Her feeds are up to 32 mls over 90 mins. She will have another echo today.
Wednesday May 20, 2009
Megan's weight is 1266g or 2 LB 13 OZ. She is having more brady's and some higher respirations.
Olivia's weight is 1580g or 3 LB 7.7 OZ. They increased Olivia up to 27 calorie formula. She is still having higher resps. Daddy held Olivia today.
The doctors started both girls back on diuretics, hopefully this will decrease any fluid build ups that may be causing issues. Both girls had their eyes checked today and there are no visible issues. Woo Hoo !!!!!
Megan's weight is 1266g or 2 LB 13 OZ. She is having more brady's and some higher respirations.
Olivia's weight is 1580g or 3 LB 7.7 OZ. They increased Olivia up to 27 calorie formula. She is still having higher resps. Daddy held Olivia today.
The doctors started both girls back on diuretics, hopefully this will decrease any fluid build ups that may be causing issues. Both girls had their eyes checked today and there are no visible issues. Woo Hoo !!!!!
Tuesday May 19, 2009
Megan's weight is 1171g or 2 LB 9 OZ. They are putting Megan on the canula for 6 hours and the C-Pap for 6 hours. Mommy held Megan for an hour at our evening visit.
Olivia's weight is 1569g or 3 LB 7.3 OZ. She has had high respirations and slightly high temp today. Doc's will probably do another x-ray tomorrow. Mommy held Olivia for 1.5 hours at out afternoon visit.
Megan's weight is 1171g or 2 LB 9 OZ. They are putting Megan on the canula for 6 hours and the C-Pap for 6 hours. Mommy held Megan for an hour at our evening visit.
Olivia's weight is 1569g or 3 LB 7.3 OZ. She has had high respirations and slightly high temp today. Doc's will probably do another x-ray tomorrow. Mommy held Olivia for 1.5 hours at out afternoon visit.
Tuesday, May 19, 2009
Monday May 18, 2009
Megan's weight is 1135g 2LB 8OZ. Her feeds were increased to 18mls, still 27cals and given by pump over an hour. She was started back on rotating between C-Pap and canula. She does 3 hours on canula and 6 hours on C-Pap, her spells when on canula seem to be less than when on C-pap.
Olivia's weight is 1515g 3LB 5.4OZ. Her feeds were increased to 30mls, still at 24cals. The girls are currently on "skin mode" in their beds, that's the humidity I wrote about earlier. Miss Olivia hit 1500 grams today, that means she can go on "air mode" where they turn off the humidity and she can start wearing clothes. I will probably start with onesies. She is really getting big, she is putting meat on her bones and looking more like babies are supposed to when they are born. Very exciting !!!!!!
Monday, May 18, 2009
Sunday May 17, 2009
Megan's weight is up to 1121g, 2LB 8OZ. Her length is 39cm or 15 1/4in, her head circumference is 26cm or 10 1/4. Now that the medications are done they tried Megan on the nasal canula for three hours today and she did very well. Hopefully she will do rotations the next few days and then be off of it.
Olivia's weight is 1490g, 3LB 4.5OZ. Her length is 40cm or 15 3/4in, her head circumference is 27.5 or 10 3/4in. Olivia only had 2 bradys today with no de-sats and they were only heartrate drops to 98bpm. Way to go big girl!!!
Saturday May 16, 2009
Megan's weight is 1077g, 2LB 6OZ. Mommy, with daddy assist, gave Megan a bath today. We couldn't wash head due to C-Pap but I thought it went ok.
Olivia's weight is up to 1449g 3LB 3OZ, she was weighed on a scale today because the bed seemed wrong (it was). They started adding vitamins to her feeds. Oh my gosh she is getting so big. I know they are still little compared to a full term baby but compared to where they came from they are huge. Daddy was in charge of Olivia's bath with mommy assist. Daddy definitely won the bathtime challenge. He did everything perfect. Oh well, guess he can be in charge of baths once they come home, lol. At least when it came time to flip the girls over, I won.
Good luck Kenny, Jenna and Kenny Jr. !!!!!
Happy Birthday Uncle TL.
Friday May 15, 2009 - 3 Weeks Old
Megan's weight is 1086g 2LB 6OZ. Her feeds are the same as yesterday. Her O2 is up a bit, to 35%. She moved up to premie diapers today. They seem big on her but the super small ones couldn't handle the extra fluids, lol. She has still been having a lot of spells. Hoping this round of meds does the trick.
Olivia's weight is 1359g, 2LB 14OZ. Her feeds are up to 27mls at 24cals and are now being administered by pump over half an hour. Daddy and mommy both held Olivia today.
Both girls got new beds today.
Thursday May 14, 2009
Megan's weight is 1016g 2LB 4OZ. Megan had an x-ray today to look at her lungs since she still requires C-Pap. The x-ray showed some fluid on her lungs. She was started on a three day course of lasics (water pill or diuretic) to clear it out. Her O2 % was lowered throughout the day and she only had 2 "spells", one was with a spit up. Bloodgas and bloodwork came back good. Keep your fingers crossed.
Olivia's weight is 1336g 2LB 15OZ. Olivia had several spells (bradys and de-sats) on the C-Pap so they put her on the canula full time again. Woo hoo !!! Her feeds were increased to 24mls and 24 cals.
Thursday, May 14, 2009
Wednesday May 13, 2009
Megan 1044g 2LB 5OZ, up 64g. Her PEEP was weaned to 5 cm H2O, when babies get down to 4 they are usually removed from C-Pap. She is still at 16mls but they have increased how they fortify it. Her new "recipe" is breastmilk fortified to 24 calories then mixed with 30 calorie formula (Similac/Ross Labs) at a 50/50 ratio to get her to 27 cals per feed. Megan has bloodwork, blood gas and x-ray scheduled for tomorrow.
Olivia is 1308g 2LB 14OZ. She is getting soo big, it is very noticeable to me. She has moved up to preemie sized diapers. Her feeds are at 23mls and they started fortifying her food, she is at 22 cals. Olivia is now only on C-Pap for 6 hours at a time and is on cannula for 9 hours. A move in the right direction.
Both girls moved to bigger binkys today, They are still smaller than preemie but getting there.
Tuesday May 12, 2009
Megan 980g 2LB 5.5OZ. Megan's O2 has been lowered to 32% and the pressure is at 6 cm H2O called PEEP, positive end-expiratory pressure. Daddy got a demo bath with Megan this evening, he is such a good daddy.
Olivia 1286g 2LB 13OZ. Olivia's O2 when she is on the C-Pap is down to 28%. She made it to full feeds at 22mls and is still on gravity feeds (doesn't need to be fed through pump like sissy). PIC line removed. Olivia had a bath today and she has been a little fussy.
Both girls sodium counts came back a little low so they were started on sodium supplements, it is given to them through feeding tubes.
The girls adjusted age is 30 weeks today. They usually try to start bottle feeding around 34 weeks adjusted so we still have quite a way to go.
Monday May 11, 2009
Megan 1027g 2LB 4OZ. Still holding at 16mls. Megan was resting peacefully during today's visits so we let her rest.
Olivia 1345g 2LB 15Oz. She is up to 19mls per feed still increasing every 6 hours. Olivia's breathing is improving, especially on the nasal cannula so they are changing her rotation to every 8 hours. You go girl !!! Mommy changed Olivia and Kangaroo'd her. During k time Olivia poo'd on mommy, while she was straining with the poo she also spit up. Mommy still has a bit to learn about diapering, lol. So after k time mommy had to change her again, including washing her legs and when mommy got home she had to do her own laundry.
Sunday May 10, 2009 - Mother's Day
Megan 984g 2LB 3OZ. Still at 16mls and 24 cals. Megan has been diagnosed with BPD Bronchopulmonary Dysplasia or chronic lung disease. It basically means abnormal development of lung tissue. She is still on C-Pap all the time. While we were at the hospital today she had the worst "spell" we have seen. Her heart and breathing rate were fairly normal but her O2 saturation dropped really low for over 1/2 an hour. They did an x-ray right then and found her tummy distended and said it was probably not allowing her lungs to open all the way. They did an enema to help her clear her bowels and hopefully allow better lung function. They are so little and for me it's crazy to think a bowel issue can affect the lungs. This was a very hard day.
Olivia 1303g 2LB 14 OZ. Olivia is up to 14mls and they moved her increases to every six hours.
The wonderful nurses in the NICU took pictures and made footprints of each of my girls and put them in a frame with a Mother's day poem. They are beautiful. Thank you !!!!!
Saturday May 9, 2009
Megan 1012g 2LB 4OZ. Length 37.5cm 15 inches, head circumference 26cm 10 inches. Megan's feeds have been reduced to 16mls, they are hoping that by limiting amount of fluids her lungs will do better. Her food is still being fortified and was raised up to 24 calories. They were able to reduce her O2 to 36% and she had less spells today. Daddy changed and kangaroo'd Megan.
Olivia 1273g 2LB 13OZ. Length 38cm 15.2 inches, head circumference 27cm 10.6 inches. She is up to 12 mls. Mommy did Olivia's mouth care and got to hold her. Olivia only had 4 spells in a 12 hr period!!!
Friday May 8, 2009 - 2 Weeks Old Today
Megan 976g 2LB 4OZ, might be down due to new scale in different bed. Megan is continuing full feeds at 19mls and they started fortifying the food with calcium and phosphorus for bones. Also put milk at 22 calories. Mommy changed Megan twice today and got to kangaroo her. O2 is still at 40% in the C-Pap. Megan got her second bath (by nurse).
Olivia 1217g 2LB 11OZ. Daddy changed Olivia and kangaroo'd her. Olivia going to 10mls today.
Both girls got new beds today, they are Isolette C2000. Both girls also had their humidity reduced to 40%. Beds are no longer like little rainforests nor have all of the condensation inside.
Thursday May 7, 2009
Megan 1000g 2LB 3OZ. Megan made it to max feeds at 19mls and got her PIC line removed. She also got the IV removed that they used to give her the blood. Megan's C-Pap was increased to 40% O2, had been at 25-30% up to this point. Megan having a rougher day so her bath was put on hold.
Olivia 1210g 2LB 11 OZ. Olivia is up to 7mls of food and is still being fed by gravity. Drs are still hearing the murmur in her heart. Mommy got to hold Olivia in the afternoon. In the evening mommy got to see a demo bath for Olivia, still have to be careful around PIC line.
Today is the girls last day in their first beds. The Giraffe beds are saved for littler/newer babies as they have a few more bells and whistles.
Wednesday May 6, 2009
Megan 1020g 2LB 4OZ, going down some after such a huge increase normal. Megan's feeds are up to 16mls. Megan was started on regular baby wipes today. Mommy tried to hold Megan but her O2 saturation kept dropping. : (
Olivia 1230g 2LB 11OZ, (up 60g). Her feeds are up to 6mls. Olivia lost her umbilical cord today. Mommy tried to change Olivia's diaper but she just kept poo'ing. She poo'd twice and the wet before mommy got her in a clean diaper. Lol.
Up to this point the girls always had just one nurse to take care of the 2 of them. Today they started sharing their nurse with another baby. I took this as a good sign that they were not having as many spells and did not require the constant attention they did at first.
Tuesday May 5, 2009
Dr. called
-Megan had increased brady's (spells) today. Found her blood count low (28%) so they gave her some blood. They are also switching her back to C-Pap full time. Still increasing feeds. It is official the head ultrasounds are totally normal. Woo hoo. :)
-Olivia going up to 4mls of food today and tomorrow they start her increases every 12 hours. Olivia is continuing on the C-Pap / cannula switches every 6 hours. Officially her head ultrasound is normal also!!!
Afternoon visit
Megan up to 1035g 2 LB 5 OZ, WOW she is up 150g in one day, double checked at next care and it was correct. At 10mls going on 11. Mommy changed Megan's diaper. Megan lost her umbilical cord today.
Olivia 1170g 2 LB 9 OZ (up 50g). Olivia at 4mls of food. Daddy did Olivia's mouth care (swabbing out mouth with a water dampened mint flavored sponge on a stick) and changed her diaper, she started using regular baby wipes today.
Both girls had their humidity reduced to 60%.
Monday May 4, 2009
Dr. Halprn called with update.
-Megan feeds still increasing, going to 9mls. Had to start giving her her feeds on a pump, it is pushed through feeding tube over and hour to prevent reflux. Labwork all came back good, no infection, good metabolism and stabile biliruben (jaundice). Head scan looked good, (not official until read by ultrasound tech).
-Olivia feeds going up to 3mls. Heart echo shows there is a remaining small PDA, it is not causing any problems so there will be no more treatments at this time. It is likely to close on it's own. Will only test further if a problem indicates issue with heart. Labwork showed no infection, biliruben stabil and sodium was low yesterday, normal today. Head ultrasound looked good, (not official).
Visit
Megan 885g 1 LB 15 OZ. No changes. Missed care time. :(
Olivia 1140g 2 LB 8 OZ. Olivia is looking a little puffy today so they are checking into changing her IV meds. Olivia got her first binky today. Mommy changed and held Olivia today.
Sunday May 3, 2009
Megan's weight 885g 1 LB 15 OZ. Her length is up to 36.5cm (14.6in) and head circumference is 25cm (10in). Megan is at 5mls per feed going to 6mls this evening and increasing every 12 hours as tolerated. When she reaches her max of 17mls per feed her PIC line (IV) can be removed. Daddy changed and kangaroo'd Megan.
Olivia's weight is 1070g 2 LB 6 OZ. Her length is 37.5cm (15in) and head circumference is 26cm (10.4in). Feeds still the same. Mommy changed Olivia and kangaroo'd her.
Both girls had their first baths today. Both girls start rotating their nasal cannulas with the C-Pap every 6 hours to gives their lungs little breaks, they are working very hard right now.
Monday, May 11, 2009
Friday May 1, 2009 - One week old today
Megan is up to 1 LB 12 OZ (800g). Daddy changed Megan's diaper. With their skin being so sensitive they just use towels soaked in sterile water instead of wipes.
Olivia is up to 2 LB 3 OZ (997g). Daddy kangaroo'd Olivia. Mommy changed Olivia's diaper. Olivia is up to 2mls per feed. Olivia came off her phototherapy lights today.
Both girls had echoes on their hearts again. Megan's is still negative. Olivia still has a small PDA so they are starting her on a three day course of Indocin to hopefully speed up the closing of it. Both girls are still on C-Pap.
Thursday April 30, 2009
Megan up to 4mls of food per feed (every 3 hours). Weight is 1 LB 12 OZ.
Olivia got the last dose of her neoprofen for her heart. Weight is 2 LB 3 OZ.
Both girls had to go back on C-Pap for breathing issues. This was always a possibility and could happen again. Both girls had distended tummys and had to have enemas.
We are starting to notice differences in the girls. Megan is the feisty one and now that her bruising from birth is getting better we can see that she has lighter hair and complexion like mommy. Olivia is a little more laid back and has dark hair and complexion like daddy.
Wednesday April 29, 2009
Today was a big day for Megan, she had her umbilical access removed, came off phototherapy light and has gained back enough to be back at her birth weight of 1 LB 11 OZ. Daddy kangaroo'd Megan.
Olivia is back up to 2 LB 1 OZ, she is getting there but can't eat much because of the heart medication. Mommy got to kangaroo Olivia for 2 hours, how wonderful.
Both girls got their first baths today.
Sunday, May 10, 2009
Tuesday April 28, 2009
Both girls were started on caffeine today to increase breathing frequency. Both girls had PICC lines put in, these are long term IV's that go into the girls almost to their hearts. They can be left in for longer periods of time than regular IV's that have to be moved frequently. Olivia had her Umbilical line removed. Megan is up to 3mls of food per feed (every 3 hours). They cannot increase Olivias food due to the medication for the PDA. This was one of the harder days for me, I had to go home from the hospital. This is flat out hell on a new mommy with hormones flowing, I couldn't help crying. My godmother stopped by and taking her to see the girls helped me calm down quite a bit.
Monday April 27, 2009
The girls both got echocardiograms (echo) for their hearts to detect a murmur. Megans came back negative but Olivia came back positive for a PDA (Patent Ductus Arteriosis) where the Ductus Arteriosis fails to close, it connects the heart to the lungs. They started Olivia on neoprofen to hopefully close the PDA. Both girls were started on phototherapy or Bili lights to prevent Jaundice. Their biliruben counts were a little high. Megan got her first binky.
Sunday April 26, 2009
Both girls were given blood transfusions (due to low blood counts, I believe) today. They were also taken off the C-Pap machine and put on oxygen through regular nasal cannulas. The nurses came in and said he girls were ready to be held for the first time. They have a way of doing this called Kangaroo care where the parent takes off their shirt and puts the baby skin to skin on their chest. It helps the baby regulate its heart and breathing, promotes bonding and the parents keep the babies warm. I got to "kangaroo" Megan and Daddy "Kangaroo'd" Olivia. We notice the girls having little "attacks" where their hearts and breathing were slowing way down. Babies this young forget to breathe. They also cannot eat when they are this little because they cannot regulate eating, breathing and swallowing. They would continue to suckle with no regard to breathing and would suffocate. Most of the time the girls would "restart" themselves and return to normal. Sometimes the nurses have to stimulate them by patting them on the behind or back so they remember to continue breathing. As long as their oxygen doesn't get too low during these "attacks" they should have no long term effects. Holding them was wonderful. They just seem so fragile.
Saturday April 25, 2009
Both girls came off of their ventilators today and got put on C-Pap. C-Pap stands for continuous positive airway pressure and is a little mask over the nose or two small tubes that go up their nose. Both girls were put on feeding tubes that go in their mouths to their stomachs. They are kept in Giraffe beds that control temperature, humidity and even weigh the girls. They are started out at 80% humidity and around 98 degrees. Their skin is very thin, fragile and sensitive. They are hooked to monitors for heart rate, respiration and Oxygen saturation.
Birth - Friday April 24, 2009
As soon as they were born the doctors put tubes down the girls throats, so they could breathe, hooked to ventilators. They also put lines in their belly buttons, called Umbilical Vein Catheterization for IV fluids and medications. After I got out of recovery they wheeled me, in my bed, to the NICU to see the girls for the first time. They are the tiniest things I have ever seen.
Statistics
Baby A - Megan Wanoka - 1 LB 11 OZ - 13 inches long - Head circumference 9.4 inches
APGAR 1min = 1, 5min = 4, 10min = 9
Baby B - Olivia Lynn - 2 LB 5 OZ - 14 inches long - Head circumference 10.4 inches
APGAR 1min = 4, 5min = 7, 10min = N/A
Week of April 19th, 2009
In the middle of this week I started having major pains in my lower back and abdomen. There was nothing showing up on the monitoring for the first couple days. Then they started showing up as contractions. Doctors were able to stop them with medication (Magnesium Sulfate then Indomethacin also called Indocin). Thursday night they did an ultrasound to check the position of the babies because they couldn't get them to stay on the monitor. At that ultrasound they suspected they water had broken on baby A. With a full ultrasound at the high risk clinic Friday April 24th in the morning they confirmed the water was broken. They had to stop the medications that were preventing my contractions at that point. The contractions started back up at 5 PM. They came on pretty strong and I knew I was going to have the girls. It had been a long wait in the hospital and we hoped they would be OK. I kept them in as long as possible but it was finally time. The doctor came in a little before 11 PM and confirmed they were going to do the cesarean right then. I knew surgery was always and option and even though I had done some research I never had time to get scared, at this time everything went so quickly I realized I never really thought about it. Oh well. I was taken into the ER and prepped pretty quickly. They had a stool by my head for daddy to sit on but when he came in he kicked it out of the way. He wanted to see every part of the births. We talked through the entire surgery. I only remember parts. I could feel pretty much everything, except the pain. I knew when they had started and I felt when they were using retractors, so weird. I remember daddy telling me when a foot was out and things got hectic then. Baby A (Megan) was stuck and it took the doctor some time to get her out. She was delivered at 11:19 PM. When they broke Baby B's (Olivia) water sac daddy wasn't expecting it to be like it was. She was born at 11:20 PM. They had 2 sets of neonatologists and nurses ready to start working on the girls right away. They were both alive and strong and kicking. They couldn't cry at this point though.
Saturday, May 9, 2009
Friday April 10, 2009
This morning we had another ultrasound. Baby A (on my left side) is still head down and is the bigger of the two, she weighs 1lb 11oz. Baby B turned breech earlier this week and she weighs 1lb 7 oz. The doctors say twins are still safe as long as the difference is less than 20% between the two. The girls are approx. 13% diff so we don't have to worry one is getting a lot more nutrition than the other. They are measuring between 24weeks6days and 25weeks4days. the doctors are calling it 25 weeks 4 days. and said we have made it through some very important weeks and the next few still matter a lot. It still looks like I will be here until I deliver.
Sunday March 29, 2009
We made it to 22 weeks 6 days on Friday March 27th and went in for our regular ultrasound with the high risk doctors.They scanned the babies first and confirmed everything looked great with them. They are a little over a pound a piece and anatomy is all correct and healthy. When they went to check me they found that I had started dialating and put me on immediate (and permanent) bedrest. It does seem the possibility of going home at all before delivery is slim though. They are monitoring me and the girls several times a day and we are doing good, they just need to cook quite a bit more. Everyday I can keep them in is three less days in intensive care when they are born. Our next major goal is 28 weeks with everyday counting and every 2 weeks adding major increases in chances of normal healthy lives.
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