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.
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