Since my last update a lot has gone on.  Mary was doing really well, so the doctor decided to push her a bit.  He increased her feeds by saying she could take as much as she wanted up to 45 mL (but no less than 35 mL).  He also had her start bottle feeding every time.  She was still in the isolette, so she did really well with these changes.  Then, on June 30 they took her out of the isolette and put her in an open crib with Timothy and Elizabeth.  It was great getting to see all of them together!  And Mary was doing a great job of keeping her temperature up and taking all of her feeds by bottle.  Most of the time she knocked out 45 mL (1.5 ounces) no problem.  But then Timothy and Elizabeth got discharged and she started to take a few steps backwards.  She started struggling with taking her bottle at night and she also had a hard time regulating her temperature.  So, they put her back in the isolette and put the feeding tube back in her nose.  Right now they are giving Mary a bottle at every other feed.  She is still getting between 35 and 45 mL at each feed.  Since they made these changes, she has been gaining weight like crazy!  She now weighs 4 lbs 5.1 ounces and is averaging a weight gain of about 1.5 - 2 ounces a day.  When I saw her yesterday her temperature was extremely high (in the 99's) so they're talking about taking her out of the isolette and placing her in an open crib.  The only thing holding her up now is the bottle feeding.  She's still having a tough time taking her bottle.  She does ok during the day when the therapists are working with her, but at night she doesn't do well.  We think part of the problem is the night nurses are using the wrong nipple.  The doctor wrote an order yesterday telling them to only use a certain nipple so we're hoping that will help some with her problems at night.  Also, she's still requiring a little oxygen when she feeds because she gets winded so she needs get off of that.  Once she's taking a bottle well at every feed (without having any spells) then she should be able to come home.  We don't have a time frame on this, it all depends on her.  Hopefully it'll only be another week or two! =)          

I don't have a whole lot of new info, so I'll just update all 3 kids at once.

Timothy is still doing really well!  He's up to 4 lbs 13.3 ounces and is still getting 40 mL of milk at each feeding.  He is now up to 4 bottles a day and they're trying to wean him from using oxygen when he bottle feeds.  He was having some gas issues this week so they have him back on Reglan and have added Mylicon drops. 

Elizabeth is also doing really well!  She weighs 4 lbs 7.2 ounces and is getting 37 mL of milk at each feeding.  She is getting fed by bottle 4 times each day (without oxygen) and is finishing her bottle feeds faster than Timothy!  She is also on Reglan.

Mary is working hard to catch up to her brother and sister!  She now weighs 3 lbs 3.7 ounces and is getting 30 mL (1 ounce) of milk at each feeding.  She is starting to get the hang of bottle feeding so they're letting her get 2 bottles a day.  She still needs oxygen occassionally to help her take her bottles.  They have started giving her caffeine and Reglan again to help with some breathing issues she was having after her bottle feeds.  Mary had an eye exam this past Monday and we are happy to report that she passed!  She will not need another eye exam for 6 months!

As you can see, all 3 kids are doing great!  Dr. B has started talking to us about taking them home.  She said that Timothy and Elizabeth are getting really close.  Basically, once they get the hang of bottle feeding they will be ready to come home.  They've signed us up for a discharge class this coming Monday to help prepare us for their eventual release.  We don't have a set date but we are encouraged that it could be coming soon!  Mary is a little further behind, so there's a chance we might be bringing Timothy and Elizabeth home before Mary.  We're hoping that doesn't happen, but if it does that's fine.  We're just excited that we're starting to see the light at the end of the tunnel! =)                                 

Mary has been doing really well lately.  She is still in the covered isolette (even though it looked like she might be getting out earlier in the week).  The doctor decided she was still too small to join her brother and sister in the crib so they have raised the temperature back up in the isolette and are trying to get her to gain some weight.  Can't remember if I've explained this, but if they move her to the crib too soon then she'll be using all her calories to regulate her temperature and won't have any calories left to help her grow.  So, keeping her in the isolette allows her to grow more quickly (which is what we want). 

On Friday Mary got to take her first bottle!  I wasn't there for it, but the nurses said she did pretty good.  They had to blow oxygen in her face during the feeding to help remind her to breathe but they've been doing that with Timothy and Elizabeth also.  The main problem she's having right now is that she sucks a bunch of milk in her mouth but then waits to swallow it all at once and ends up choking on it.  So, the physical therapist will be working with her on that (as well as the whole breathing thing).  Since Mary is still so small bottle feeding is very tiring for her.  Her apnea episodes have increased since they started bottle feeding so they've limited her to 1 bottle a day and have started giving her caffeine again.  As she continues to grow and get better at bottle feeding they'll increase the number of times she gets a bottle each day.

Elizabeth is getting 25 mL of milk at each feeding and now weighs 2 lbs 13.7 ounces.  She is taking Reglan again for some reflux issues she's having, but other than that she's doing awesome!                               

Mary is slowly working towards catching up with her brother and sister.  She now weighs 2lbs 10.6 ounces and is getting 22 mL of milk at every feeding.  When the babies were first born, Mary was about 5 ounces lighter than Elizabeth.  Now she is about 17 ounces lighter than Elizabeth.  The couple of weeks when she was sick and not getting milk really put her behind weight-wise.  So, the doctor is focusing on trying to put some weight on her quickly.  To do that they're going to be increasing the amount she gets fed by 1mL at every other feeding until she gets to 25 mL.  She should reach this goal sometime tomorrow afternoon, which means the next day they'll re-evaluate and consider increasing her feeds even more.  They are still feeding Mary through the tube in her nose, but said that once she gains some more weight they'll let her start trying to bottle feed.

In addition to trying to gain weight, the doctor is also trying to get Mary to start regulating her own body temperature.  They want her to do this so she can join her brother and sister in the open crib.  They have slowly been lowering the temperature in her isolette to try to achieve this goal.  Right now the temperature is set at 29.5 degrees Celsius.  It needs to be at 28 degrees Celsius (and she has to maintain a body temp in the 98's) in order for her to come out of the isolette.  

Finally, the doctor decided that Mary is well enough now to take her off of her medicines and remove her PICC line!  She had been on Reglan and Zantac for her reflux, as well as caffeine for her apnea.  So, she will still get her vitamins, but these other meds will be stopped.  If she starts to have problems again, then they'll consider putting her back on the meds.  As for the PICC line, this is huge!  First, it's a possible source of infection, so it's great that they're getting rid of it for that reason.  But also it's an important step in getting her out of the isolette and in a crib with her brother and sister.  So, a big day for Mary!  She's starting to catch up and we're excited about that!             

Mary's week has been a little more eventful than the other two, but not by much! =)

Mary had a head ultrasound and an eye exam this week.  Both tests came back ok.  Since she's so small there's still a good chance her eyes will change, so they're going to be checking her every week until she matures a bit more.  On Tuesday they said she was slightly anemic, so they're giving her vitamins with extra iron to see if that helps.  A few days after the eye exam they noticed some gunk in Mary's left eye.  They took a culture of it and will have her on eye drops for 5 days to see if it clears up.  We noticed today that her eye already looked better after only one day of eye drops.  No results on the culture yet, though.  They started fortifying the milk Mary gets so it has more calories in it.  This should help her gain weight and grow more quickly.  She is up to 20 mL (4 teaspoons) at each feeding and now weighs 2 lbs 7.7 ounces.  She is no longer on Lasix, so it appears that she didn't have as much water weight as we thought.  She has continued to gain weight at a good rate this past week, so hopefully we'll start to see some growth accompany that.  Mary is still having a few apnea episodes, but not as many or as severe as before.  They will look at taking the PICC line out sometime next week as long as she continues to do well.  She really seems to have turned a corner and is doing so much better!                                                                                 

Mary has made a lot of progress this weekend, which we are so thankful for!  On Friday when we were there she was still getting oxygen through a nasal canula, but was doing well with that. 

Saturday morning we arrived to find Mary in the same room as her brother and sister!  It was so nice being able to keep an eye on all of them at the same time!  It was also nice because it gave us a chance to hold all three at once! Saturday afternoon the on-call doctor came by to check on Mary and decided to change things up a bit.  They took her off of the apnea bed and started giving her oxygen straight into the isolette instead of using the nasal canula.  They also put her in clothes and swaddled her.  Prior to these changes she'd had a few episodes but they were hoping that by changing things up she might start to improve.  They were going to keep an eye on her and see how she did.  While we were there Saturday she did great!  Her oxygen saturation stayed up around 100% most of the time! 

Today when we arrived Mary was still doing really well.  The nurse said she'd had a few little episodes but had been able to bring herself back up pretty quickly each time.  She is getting 18 mL of milk at each feeding, which is the most she's allowed to get right now.  As her weight increases they'll continue to increase how much she gets.   Her current weight is 2 lbs 5.5 ounces.  While she's gained a decent amount of weight, she really hasn't grown that much.  So, we're hoping that now that she's on full feeds she'll start to grow more.  We love the progress we're seeing so far!  She's doing so much better and we just pray that it continues!                                                         

As I mentioned with the other two, we've been super busy lately with family visits so I've got a bit to update you on.

On Tuesday when we went to see Mary she was doing pretty good.  We noticed when we got there that she didn't have a feeding tube in her mouth.  Turns out she'd pulled it completely out so the nurse was going to have to put a new one in!  They were still increasing her feeds (she was up to 7.5 mL every 3 hours) and she was still on vapotherm (oxygen) to help with her apnea.  The nurse said she'd only had 2 bad episodes so far that day and that all the other times she'd been able to correct her breathing/heart rate on her own.  She weighed 2 lbs 3 ounces, but they noticed that she was retaining a lot of fluid so they started her on Lasix.  We expect her weight to drop some before it starts to increase again. 

On Wednesday the nurse told us Mary was having a much better day (which we love to hear!).  She was up to 9.5 mL of food every 3 hours and the goal (right now) is 18 mL every 3 hours.  Her weight was up to 2 lbs 5.4 ounces but as we noted already, the Lasix should take some of that weight off.  I got to change her diaper and check her temperature for the second time ever!  The nurse also told us that they were going to start doing eye tests on Mary next week to check her retina.  Apparently premature infants are prone to retinopathy (abnormal blood vessel growth in the retina) so they check them every week or so to make sure things are ok.  In some cases laser surgery is required and in other cases infants can be left blind.  We're praying for none of that to happen!

Today was an eventful day. They have increased Mary's feedings to 11.5 mL every 3 hours and she's doing well digesting them.  Her weight is up to 2 lbs 5.7 ounces (still waiting to see it drop some...she's still a bit swollen from the fluid retention).  When we arrived in the morning Mary's vapotherm (oxygen) had been lowered from a flow rate of 3.0 LPM to 2.5 LPM.  The nurse told us they were trying to get her flow rate down below 2.0 so they could switch her from vapotherm to a nasal canula (a different way of delivering the oxygen).  She had noticed that Mary seemed to be gagging on the feeding tube in her mouth and that was causing her heart rate to drop.  So, she wanted to switch Mary's feeding tube to her nose but couldn't do that unless Mary was off of the vapotherm.  Shortly after we arrived they tried lowering the flow rate to 2.0 and Mary did really well with that.  So, around 1pm they switched Mary from the vapotherm to a nasal canula.  They lowered the flow rate to 0.5 LPM to see how she'd do and told us if they needed to they could increase the flow rate and oxygen in the canula.  Once they had switched Mary to the nasal canula they were able to put the feeding tube in her nose.  This was great because not only did it help her with the whole gagging thing, but it also meant that I could finally hold her!  Our nurse today was great and let me hold Mary for about 5 - 10  minutes before her afternoon feeding!  It was nice to finally get to connect with her!  AND she did awesome the whole time she was out of the isolette!  Her oxygen saturation never dropped below 98% the whole time I had her!  We're hoping that she's turned the corner a bit and will start to get back on track with the whole breathing thing.  Paul also got to hold her briefly before the nurse put Mary back in the isolette!  So, a big day for Mary and for us!  We love seeing her progress like this and pray it continues! =)

Ok, so since it's been several days since I've updated Mary's blog there's a lot to talk about. 

It started Saturday evening when we came to visit Mary.  The nurse told us that the number of apnea (stops breathing) and brachycardia (heart rate drops) episodes had increased significantly from that morning.  According to her estimates, she'd had about 20 spells in about a 3 hour time period that afternoon.  That's compared to the morning where she only had about 5 episodes.  As a result of the episodes they decided to do several things.  First, they prescribed Reglan to treat any reflux she might be having.  They also stopped increasing her feeds.  She'd been scheduled to increase by 0.5 mL at every other feeding.  Instead, they just kept the amount she was fed steady at 3 mL.  Another thing they did was increase her vapotherm (oxygen).  She'd been down at 2.0 LPM and 30% oxygen and they increased that to 3.0 LPM and 31% oxygen.  They had been scheduled to stop her antibiotics Saturday evening, but decided to continue them until they found out more about what was causing her episodes.  Finally, they scheduled a bunch of tests to be run Sunday morning.  They included an x-ray of her abdomen, and ultrasound of her head, and some blood work.  Basically, they're looking for anything that could be causing the episodes (brain bleeds, stomach issues, infections, etc.). 

We weren't able to get much info from the nurse on Sunday, so I came by early today to talk to the doctor.  According to her, all the tests came back ok.  There's nothing that seems to be causing the episodes so they're thinking it's because of her prematurity and that she just needs more time to grow out of it.  They have taken Mary off of antibiotics, but they now have her on Zantac and Reglan to help with any reflux/indigestion she might be having.  She is currently eating 5 mL of food every 3 hours (that's the same as a teaspoon).  Based on her weight, she needs to be eating 16 mL every 3 hours, so they're going to try increasing the amount she eats by 0.5 mL at every other feeding and see how she does with that.  Her vapotherm is still up pretty high; they have her at 3.0 LPM and 29% oxygen.  Dr. Bonifacio said they had to increase the vapotherm because the x-ray showed her lung capacity had decreased.  She said that's normal because premature babies don't have the support needed to maintain  their lung volume and that it should go back up over time.  Mary's weight is up to 2 lbs 4 ounces and her face is starting to look more full.  Hopefully she's able to keep that weight on now that they're feeding her.  Also, the nurse said she pooped on her own today for the first time since they started feeding her again.  So, sounds like things are better than they were the other day.  Of course, every day seems to have it's ups and downs so we're just glad that today is on it's way up!  Hopefully we'll have more of these days and she'll start to catch up to her brother and sister! =)                

There's not much new to report with Mary.  She is still having apnea episodes even while on the apnea bed.  They're not as bad as before, but they're still happening so that's a bit frustrating.  They tell us it's normal because of her prematurity, but it's still hard to watch her struggle like that.  The good news is, most of the time she's able to correct her breathing on her own instead of having the nurses stimulate her.  So, that's progress at least!

Mary is now up to 2 lbs 1 ounce.  They are trying to feed her again.  Hopefully she'll start tolerating her feeds and they can increase the amount she gets.  Right now she's at 1 mL every 3 hours.  If she does well with that they'll increase by 0.5 mL every other feeding.

One new thing that happened today...I got to hold Mary while the nurse changed out her bed.  It wasn't like holding the other two because I just held her up in the isolette, but it was more contact than I'd been getting with her so that was nice.

We were surprised when we went to see Mary tonight to find some new equipment in her room.  Apparently Mary had several bad apnea episodes this morning.  As a result, they decided to put her on an apnea bed.  Basically, they have a glove attached to the end of a ventilator and the glove is placed under Mary.  The ventilator inflates and deflates the glove, which moves Mary up and down.  This is supposed to stimulate her and remind her to breath.  It appeared to be working pretty well when we were there.  Occassionally she would slip off the glove and her stats would drop, but once they got her readjusted she was fine.  They've also increased the amount of caffeine she gets, so hopefully that (in conjunction with the apnea bed) will help to get rid of these breathing issues.

Another result of the apnea episodes is that they stopped Mary's feedings again.  They're hoping to restart the feedings tomorrow provided she doesn't have any other bad spells.  Mary is still on a small amount of oxygen.  If they can get the apnea episodes under control then they'll start trying to wean her from the oxygen again.  Her weight is hovering around 2 pounds (today it was 2 lbs 0.6 ounces).  Hopefully as they start feeding her again that will start to increase. 

So, kind of a small step back today but hopefully she'll start to grow out of this and begin progressing like her brother and sister.