Three Months Old

After her seemingly large increase in weight last night, we were prepared for her to lose tonight, but no. She was weighed twice tonight to confirm, on the same scale that she was weighed on last night. Emily now weighs 1805 grams (3 lbs, 15.7 oz), frustratingly just shy of 4 lbs.

The pressure on her CPAP was dropped today, and she seems to be doing well. She certainly seemed a lot happier today and was smiling a lot more. (I wonder what a three month old baby thinks is so funny?) She also was playing with the stuffed tiger one of her grandmothers got for her. That is, she saw it, studied it for a while, and then reached out and grabbed its nose with her little hand.

Emily's eye exam went well. Her ROP is unchanged in her right eye (stage 2), but has begun to regress in her left eye!

Tony

Thirteen Weeks Old

Emily is exactly thirteen weeks old today. She now weighs 1733 grams (3 lbs, 13 oz). She is tolerating her baths in the evening much better now and doesn't desat nearly as much as she used to. We found that keeping her vertical helps her with her reflux issue when she's feeding, so Daddy gets to hold her every night while Mommy makes her bed and the nurse hangs her feed. She was also on her belly this afternoon, and she looked like she was trying to crawl. Basically, she gets her toes into her mattress and tries to push herself along while reaching out with her arms, grabbing the mattress, and tries to pull herself along. She has a very strong little grip. She grabbed Dad's shirt while he was holding her and clenched her fist so tightly that her hand turned white. Her cries are a little louder and longer duration now; they sound like a regular babies' cry that just gets started before stopping early. The doctor was encouraged by her blood gas this morning - her pCO2 level remains in the 60's.

Tony

Twelve Weeks, Five Days

Not much to report today. Emily had a decent blood gas this morning - the pCO2 was 68. Her weight is 1646 grams, so she seems to have been hovering the past few days, but the scales in the nursery seem to be a bit off, and she was ademic last week, so she's roughly 3 lbs, 10 oz. Her feeds have been increased to 35 cc's every three hours. She seems to have some reflux issues with her feeds now that she's on the CPAP. Her nurses can usaully wean her down to around 32% oxygen, but she starts desatting after her feeds, so she needs a bit more oxygen. Right now she just seems to be hanging out and growing.

Tony

Little Miss Emily Blows Her Top

Emily had another explosive diaper this morning. Later in the day, she moved to an open-top crib! Another big step forward; her isolette was needed by a new baby who was much sicker. It's kind of wierd that Emily is no longer the sickest baby in the nursery. Her oxygen requirements stay the lowest we've seen in a long time. At one point she was breathing 32% oxygen. She was being very fiesty tonight, but all in all seems more content than she was last night. At one point, Daddy tried to give her a pacifier but she didn't want it. He put it in her little hands and she took it, but then threw it against the side of her crib. (I really shouldn't be happy that our daughter is throwing things already, but given all that she's been through, I think she's entitled to a little leeway.) Her voice is also getting a little louder. We can hear her crying more, and she is also sneezing now that she's on the CPAP. Emily tends to sneeze in threes, just like her Mommy. I'm going to file this under those bizarre things that don't seem like they should be genetic but are.

Tony

Twelve Weeks, One Day

Not much changed for Emily today. She was on ~40% oxygen all day, and Mom got to hold her most of the day, which both of them really enjoyed. Better still, the doctors have decided that the heel pricks every morning are no longer necessary and Emily will have blood gases done only as needed. Also, the respiratory therapists have taken the ventilator away from her bedside, which we think is a vote of confidence that she probably won't need to go back anytime soon. Emily's new set of clothes features mittens and booties. She figured out how to kick her booties off shortly after they were put on, and also worked out how to take off her mittens.

We also got good news from her eye exam today. Her retinopathy hasn't progressed any further; the doctor wants one more exam next week, and then her said every other week after that.

Tony

Twelve Weeks Old

Little Miss Emily Gets off of the Ventilator!

Emily got on to the CPAP today! The plan had been to try her on the CPAP if she self-extibated, which she did early this morning, but the doctor on duty decided to reintubate her instead. The daytime doctor on call was confused by this decision, but Emily finally resolved the controversy around 3 PM when she took out her new tube. She did OK breathing on her own - the nurse put a mask on her and gave her 100% oxygen and her saturation levels looked good, so they sent for a PA, who dropped her down to 70% oxygen. Emily still did well breathing on her own, so they put her on the CPAP right away. Soon she was satting at 100%, so they eventually turned her oxygen down to 40%. Most of the day she's been in the 40-60% range.

Today was Mom's birthday, and she got to hold Emily most of the day. Particularly during the exact time of her birth. Emily was pretty upset a good part of the day, first because of the breathing tube and then later because of the CPAP. She is however, able to move her head around in any direction. She was extremely happy that she found she could lay face down on her belly (which seems to be rather uncomfortable with the mask over her nose, but she seems to enjoy it). We also finally got to hear her cry, though not quite with her real voice. She's very hoarse from having a tube down her throat for the first three months of her life, but she makes a rasping cry on her own.

Her gas tonigh was pretty good for just being moved to a CPAP and throwing a massive temper tantrum - her pCO2 was 65, so they seem happy to leave her on at least until tomorrow.

Tony

Eleven Weeks, FIve Days Old

Emily lost a little bit of weight last night - only 10 grams, so she now weighs in at 1620 grams. This is roughly a third of an ounce and is ~0.5% of her total body weight, so there isn't any concern.

Emily seems to like her steroids. Her settings were reduced three times yesterday. Her PIP was dropped from 24 to 19, and her breath rate from 36 to 30. All blood gases yesterday showed her pCO2 was 43 or 44, and her blood pH was normal. She had another good gas this morning, and they may further reduce her rate as a result. A couple of the respiratory therapists think that it will be days and not weeks before Emily goes onto the CPAP, and they seem to think that the way Emily is going she won't necessarily have to go back to the ventilator.

Keep praying. After everything that Emily's gone through to get here, we firmly believe that she's our little miracle.

Tony

Eleven Weeks, Three Days Old

Emily now weighs 1630 grams (3lbs, 9 oz). This is an especially impressive feat considering that she had a diaper which weighed 80 grams earlier in the evening.

Emily has another respiratory infection and she is taking two antibiotics, but it doesn't seem to be slowing her down much. Since the doctors can't wean her any more off of the ventilator, they started her on a nine day course of steroids today. Within a few hours of her first dose this evening, she was having high oxygen saturation levels in her blood, and she went from ~60% to ~46% oxygen, so hopefully she will be able to get off of the ventilator and onto the CPAP in the next few weeks. She's also taking 30 cc's (one full ounce!) of milk every three hours.

I couldn't resist taking a picture of the flamingo which one of her grandmothers got for her. The nurse left it on the roof of the isolette when she raised the top, and Fiona the Flamingo went flying!

Tony

Eleven Weeks, One Day

Emily now weighs 1560 grams (3 lbs, 7 oz).

After having her breathing tube changed yesterday, she still has an air leak today! It is however, much smaller, but the doctor was quite surprised. Earlier there had been a debate about whether or not the tube they put in last night was too big. Apparently it wasn't! Her gases last night and this morning were good, so her breaths per minute were reduced to 36. When she gets down to 15-20, she will be tried out on a CPAP.

Emily had an eye exam today which showed that her retinopathy has progressed to stage 2 in both eyes. However, it doesn't seem to be progressing very quickly and ROP usually peaks at 36-37 weeks in most babies. There isn't even any talk of eye surgery yet, so all in all, it's actually pretty good news.

Dad finally got to hold Emily today (although she wouldn't hold still, hence the blurred image). Even though she sleeps while Mommy holds her, she was very active for Daddy. She kept her eyes open much of the time and smiled often, especially when she heard Mom's voice. We think that she's definitely laughing at times, and she seems to be ticklish, particularly around her belly. She seemed to be laughing during her bath tonight while Mom was washing her belly.

She's also moved up to eating 29 cc's of fortified milk every three hours. Apparently the calories are sticking. Compared to her earliest pictures, she's huge! If she gains a little more weight, she can be moved to an open top crib.

Tony

Eleven Weeks Old!

Emily had a big day today. She now weighs in at 1540 grams, though we aren't sure how much of this is real because she just had a blood transfusion tonight. This was the first one in almost three weeks, I think, so she's doing pretty well. The doctor said she's just slightly anemic and she's getting more blood because of her prematurity and all of the tests they have to do for her.

Emily got a new primary nurse today. This makes three. Vildan has been taking care of her quite frequently since Emily's very first week of life. Among her firsts with Emily include being the first nurse she ever hit (a habit that won't be so cute once she gets older!), and being the first nurse to experience the exploding diaper trick. Emily seems to be very happy with her, so we're glad that she's taken her on.

Emily also got new equipment today. They put in a bigger breathing tube because there was an air leak in her old one that was getting pretty bad. It sounded like she was either snoring or whistling and it could be heard outside of her isolette at times. The new one went in OK and doesn't squeak. She's also got a new ventilator which will give her some support when she tries to take breaths on her own. The doctors hope that with a bigger tube she should be easier to ventilate (Hopefully this will translate to lower pCO2 levels in the blood.), and that they can figure out how much pressure the ventilator actually needs to give to inflate her lungs. (Which is certainly lower than her current settings, but know one knows how low just yet because of that air leak.) Her breath rate was lowered today to 40 breaths per minute, and she was high-satting after her reintubation she seemed to like her equipment change.

Tony

Ten Weeks, Six Days

Emily now weighs 1520 grams (3 lbs, 6 oz)!

Emily had another setback today. Her pCO2 level from the blood gas this morning was 90, so the pressure on her ventilator was increased, and the number of breaths per minute went up from 35 to 52. She was also having many more desats than usual throughout the day and was on 80% oxygen by the time we left. However, when we came back from the shift change this evening, she wasn't desatting very much at all, and she was high satting a lot before we left tonight, so her nurse may wean her oxygen requirements over night.

On the other hand, Emily didn't seem to agree with the instruments, as can be seen from today's pictures. She was obviously feeling well and was extremely active. She had a busy day today. She was held by Mom for several hours, then Jennifer gave her a bath, changed her clothes, and helped the nurse change her bedding this evening. Her nurse this evening also was able to situate the tube from the ventilator so that Emily could look straight up. Jennifer has made a black-white-red checkerboard pattern she taped to the top of Emily's isolette, and she was staring at it with her huge eyes while she was lying on her back. The daytime nurse also helped Mom talk Dad into changing Emily's diaper for the first time, and Tony even got to hold her outside of her isolette for a few minutes.

Tony

Emily's Big Move

Emily handled her move on Thursday night well, and she is in a new spot in the nursery. She has been growing at a prodigious rate and now weighs 1480 grams (3 lbs, 4 oz!). Mommy has been able to hold her for the past three days, and Emily seems to enjoy it immensely. The ventilator is now only giving her 35 breaths per minute, but her breath rate is between 60 and 70 per minute, so she's doing quite a bit of breathing on her own. Tonight when we left her oxygen requirements had also been reduced to ~51%. The nurses have been having an ongoing battle all week with her. Apparently Emily has a difference of opinion with them where she believes that she doesn't actually need a tube down her throat to breathe. In addition to trying to pull her tube out, she's been trying to roll over onto her belly when she's on her back and move her head so that she can look around.

Tony

Ten Weeks, Three Days, Three Pounds

Yes, Little Miss Emily has finally made it to the three pound mark (1360 grams)!

She is currently being treated for yet another respiratory infection. The doctors made some slight adjustments in her ventilator settings today, reducing the number of breaths to 40 per minute, and increasing her pressures. The goal is to try to help her lungs vent off some of the CO2 that's been building up.

Emily got to be held by Mommy again today. Per usual, she liked it. She was smiling and the nurse was able to wean her oxygen settings a bit. Other than that, Emily is likely going to be moved tonight to a different part of the nursery. In a rather bittersweet moment, Emily is no longer the sickest baby in the ICN and they need her isolation room for a new baby that is even smaller than Emily was when she was born. (Which is hard to imagine!) We hope that the other little baby does as well as Emily has been. We were right where their parents were just ten weeks ago...

Tony

Ten Weeks, Two Days Old

Emily now weighs 1320 grams (2 lbs, 15 oz)! She has almost tripled her birth weight!

The settings on her ventilator were slightly increased today and she is now getting 50 breaths per minute from the machine, but her lungs are apparently sounding better. One of her primaries was on tonight and said that Emily's lungs sounded like a different baby's. The doctors still plan to try her on a CPAP if she takes out her breathing tube tonight.

Emily really enjoyed being held by her Mommy tonight. We were able to catch video of her smiling while Jennifer was singing to her. (Somehow, taking pictures of her with her eyes open or smiling is rather difficult.)

Tony

Little Miss Emily has HAD ENOUGH . . .

. . . of the oscillator! She was feeling much better today. This evening, Jennifer was singing and playing with Emily. Emily started smiling a lot. She was also extremely active and was constantly in motion until we left to come home. We've been told that the doctors have decided that if she self-extubates once more, she will be moved up to the CPAP! (hooray!) Her desats were also different today. She didn't seem to be having bronchospasms, but was very active and smiling. When her saturation levels dropped into the 60% range, she would stop moving and come right back up to the 90% range on her own. Dad figures that she was having fun and wore herself out, needed a little break, and then started over again. The settings on the ventilator are also the lowest that we've seen them at. It's only giving her 40 breaths per minute, but the sensors show that she is getting between 50 and 70 breaths per minute most of the time, so her lungs are doing a lot of work over the ventilator.

Emily's eye exam also went well. The eye doctor has decided that her retinopathy is in zone 2, which is less serious, and remains at stage 1, so it does not appear to be progressing. We are praying that she can make it past 36 weeks, 5 days without needing surgery.

Emily has also grown out of the smallest size of preemie outfits (micro). We took her first three sets of clothing home with us tonight because our little girl is growing so fast! Tony would like to point out that he picked out the outfit Emily is wearing tonight. Jennifer wasn't sure about it at first, but the nurses were all commenting on how cute she looked.

Tony

Ten Weeks One Day - Morning

Greetings,

We just got the update from last night. I guess Emily got tired of being on the vent and pulled her tube out twice! The doctor said that her saturation (oxygen saturation in her blood) didn't go down that much though, and she was debating on just puting her on the C-pap when she did this the second time. She decided against that and put her on the conventional vent though (the vent she was on 3+ weeks ago).

Daddy thinks she did this because she wasn't able to see me for 3 days and she had had enough of the oscillator constantly jiggling her. She knew she couldn't be held on the oscillator so she wanted to be taken off it! Now that I am back now she wants to be held!

I just thought I would give a quick update!

Jennifer

Ten Weeks Old

Emily is now ten weeks old. She had an uneventful day, but her nurse said she was bad last night. Apparently she was working on a pooh when she got fed. Long story short - there was a big mess culminating in yet another reintubation.

Jennifer was finally able to come back into the nursery after getting over a cold. Emily was very excited to hear Mommy's voice and wanted to squeeze her finger. Jennifer was cupping her hands over her when we had to leave for the shift change. When Mom took her hands away, Emily started flailing and crying (though she still can't scream). Apparently she really missed Mommy!

Today's pictures feature Little Miss Emily wearing one of the new outfits one of her grandmothers got for her. (She wasn't able to close her eyes quick enough to avoid Daddy getting a good picture.)

Although the developmental specialist hasn't evaluated her yet, we've noted that Emily moves her arms or legs together in tandem, with each limb mirroring the other. Also, when she's on her belly, she gathers her arms and legs underneath her and tries to push herself up, which is a prerequisite for crawling. The nurses and respiratory therapists try to discourage this behavior because they're worried about Emily disconnecting herself from the oscillator, which she has managed to do by herself several times already. We're debating whether she does it because she wants attention or whether she's just sick and tired of being shaken by the oscillator.

Tony

Nine Weeks Six Days Old

Emily now weighs in at 1190 grams (2 lbs, 11 oz.)! She's growing out of her size micro clothes. (You can see her almost bursting out of her outfit in one of the pictures.)

Not too much exciting has happened the past few days. Her oxygen requirements have pretty much been in the 40-50% range, and she had a few days (nights) this week where she didn't really have any desats at all. Yesterday and today during the day however, she's been back to her old habit of desatting every five minutes or so and coming out of it on her own. She had another explosive diaper yesterday. The poor victim was the same nurse she had on Thursday, and she hadn't had a BM since then, so we figure that she's been saving them up for this particular nurse.

Emily has another eye exam on Tuesday, and tomorrow a new doctor takes over her care for the next three weeks. So far, she's had Dr. Optimistic, Dr. Pessimistic, and Dr. Conservative. We'll see what tomorrow brings us.

Also, Jennifer modified the settings on the blog so visitors should be able to post comments now.

Tony

Nine Weeks Four Days Old

As of last night, Emily weighed 1180 grams (2 lbs, 10 oz.)! Her feeds have also been increased to 15 cc's every two hours.

Emily had a good day most of Wednesday, but later that evening started desatting badly and needed to have her O2 and MAP (mean airway pressure) increased. Today, she was back down to breathing 40% oxygen, but they have not reduced her pressures. Her doctor says that the reason for this is different than the reason for raising her pressure several weeks ago. Apparently her x-ray on Saturday was slightly improved, but showed pockets of collapsed lung. Her x-ray this morning showed that her lungs were properly inflated, so the doctor is reluctant to reduce her MAP at this point. If she contintues to have good blood O2 saturation levels and her nurse tonight can wean her oxygen some more, they will reconsider whether or not to reduce her MAP.

Emily also had some massive bowel movements today, the size of which have apparently safely ensured her place in the annals of the Pennsylvania Hospital Intesive Care Nursery. While her nurse was changing her diaper this morning Emily wasn't quite finished. All we were able to get out of the nurses was that there was some sort of explosion in which Emily got the ceiling and walls of her isolette dirty. The nurses were unable to clean her isolette with her in it, and had to exchange it for another one, kicking another baby out of it in the process. The good news is that the top comes off of her new isolette, which should make the nurses happy. Not content with her early morning exploits, Emily had three more full diapers today, the last one weighing in at a record (for her) of 48 grams. Needless to say, she probably doesn't weight 1180 grams anymore, but likely won't be weighed tonight.

Tony

Nine Weeks Old

Emily was nine weeks old yesterday. She now weighs 1110 grams ( 2 lbs, 7 oz)!

Today she had a bit of excitement. She seemed to be sliding a little backwards last night; she was having trouble keeping up her O2 saturations, and she had a bad blood gas this morning. This afternoon as the nurse was giving her the last eyedrops to dialate her pupils in anticipation of her eye exam, she threw up, then aspirated her breathing tube. She needed to be reintubated, and when Jennifer changed her later she found a very heavy diaper. After all was said and done, she had great blood O2 levels and the nurse was able to wean her. Clearly Emily just wanted a new ET tube and didn't know how to ask for it!

Her eye exam showed (fortunately) little progress in her ROP. She still has stage 1 retinopathy in zone 1 (the center) of both eyes. She is 33 weeks gestationally, and ROP peaks at 36 weeks, 5 days, so if it doesn't progress to stage 3 by then, she should be in the clear. We keep praying that her eyes continue to be relatively OK.

Tony