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.
Tuesday, June 23, 2009
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.
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