121 days old

Hello,

Well Emily had a rough day yesterday. She was desating a lot and had a hard time even getting into the 80% range. She also looked pale to me but I thought it was because she was desating so much. They tried raising her canula oxygen to 100% then they raised her oxihood oxygen to 70% with humidity. She had brief moments of goodness then she would drop to the 70-60% range again. She didn't look puffy (a sign that she needs her diarall) and the night before she didn't gain a ton of weight. When they suctioned her the did get a some but it didn't seem to help her that much. Also she was very relaxed for her nebulizer treatment and that didn't even seem to help her that much. So they decided to give her blood. We knew this was coming. The doctor said that she wants to give her blood before she went home. Unfortunately Emily has her mom's veins and they are very tiny. They had to try 5 times before they got the IV in her. She went through 3 nurses also. Needless to say she wasn't happy about that! I hope that they don't keep it in her that long since I don't like her not being able to use that limb for while. They also stopped feeding her (which confused me and Tony since she loves to eat).

All told it was an emotionally draining day for me. She has had days worse then this but lately she has been having more and more "bad days". The good news is after she had her blood and diarall she was a "new baby". I guess she was sating in the 90's and they decided to feed her at 4 am.

In more positive news, the count in the nursery was down so they were finally able to wax the floors. So Emily was moved to a little corner of the nursery for about 12 hours yesterday. The floors look great! They were really bad before and you can tell that they looked like they really needed to be done. She is now back in her normal spot and I get the impression she will stay there till she is released, provided they don't suddenly get a large amount of really little babies.

Today we have our family meeting. I had wanted it to make sure we are all on the same page when it comes to a lot of things. I also wanted to talk about what her needs will be when she is discharged. I know we can't talk about discharge planning (per say) but I don't want to find out in the 11 hour that we need something for her at home that I need to try to hunt down. I have started the process of trying to find an Oxygen supply company for her but I am finding out that there isn't one that caters to pediatric patients. Ironically, I know one company that is in Florida that does cater to pediatric patients so I am going to e-mail them today and find out if there is a network of them for the country. I would hate to get a company that really doesn't deal with babies and doesn't know about the needs that she will have. Any suggestions are welcome!

I am starting to get the hang of driving the minivan. Though I must admit that parking it is going to take some getting used to! Especially in the tiny parking lot at the hospital. However I am getting better so hopefully I will be doing really good in little while.

We did take pictures yesterday but I am too lazy to get up and download them. I will do it tomorrow and also post some more (especially if Emily is doing well today).

Talk to you later!
Jennifer

Emily 1 week corrected

There was very little change in her yesterday. She took every other feed by bottle and took the whole thing when she did. I think she really likes the Dr. Brown bottles! She is now on a nebulizor type treatment for her inhaled medications. They rarely do this in the hospital but I would like her to be on that form for when she comes home. So far so good but I will say she hates any kind of mask! She is on the same oxygen requirements.

Sorry for no pictures today. I will try to get some today!

Jennifer

Happy little girl

Well Emily took a whole bottle twice in a row yesterday. This is how she felt about it.

We used the Dr. Brown bottle with the preemie nipple. I must say that this is a miracle bottle. She took to it right away and didn't brady once! The first time she took the whole bottle she did it in 15 minutes the second time it was in 20 minutes. Also unlike the Advant bottles, she didn't leak out that much. I didn't have to watch how much she had in the nipple she controlled that so she could breath and she didn't need to be burped really when it was done. The picture above was taken right after she had finished the second whole bottle. As you can see it didn't wear her out and she was awake for a while after she finished both bottles.

Emily had the occupational Therapist come by yesterday. She did really well and the therapist said it was a good session. She worked with her about 20 minutes at bath time so that was good.

Emily's breath rate was down for the last 24 hours and she is more or less just with the canula and doesn't need the "blow by" oxygen that she gets from the Oxyhood. She is on 2 liters per minute for her flow and about 70%. Perhaps the drugs that she is taking are starting to work!

That is about it that is going on. She had a good day all told yesterday!

Jennifer

Corrected 6 days old

Hello,

Well we didn't get as much time with Emily yesterday as we had planned. Funny this whole long weekend we have really only been spending about as much time with her as we normally do when Tony is working. Yesterday we had to pick up Maya at 1 pm and after signing the papers, getting a quick lunch, and the traffic down to her (who thought that doing road construction on the busiest travel weekend of the year was a good idea?) we didn't get down there till about 5 pm.

Emily had a much better day though (I hope that doesn't mean that she wants us to go away). Her oxyhood was off her most of the day and she was doing well with her saturations. Her canula has been lowered to about 60% from what we hear as of this morning and she is sating in the low 90%. I am not positive but I think that her flow rate was lowered to 2 liters as well. We were told that she even took her inhaled meds good too. We were told that yesterday they sucked out a hard dried blood clot out of her nose. I guess it was quite large and once it was out her stats went way up!

They are going to try her with her oxyhood open when she is in her bed. For those who don't know the oxyhood is much like a plastic box. Only it is open on one side (the side that is down so Emily is not laying on plastic) and on another side it has loose plastic that can be wrapped around her body or around her feet so that she is enclosed in a bubble for lack of a better word. The thought is that since she clearly needs the humidity but the humidity makes her really wet (often we can't see through the bubble) that maybe the best solution is to open the "wrapped" side so air can get in but she is still getting humidity. One thing we have noticed is the hospital air is EXTREMELY dry. Also all the babies have vents over their cribs/isolattes so they have moving dry/cold air over them. Hopefully this would help Emily.

Emily did okay with the Advant bottle yesterday. It was tried 2 times during the day and once with me. We were told that it was also tried at 4 am this morning. The first time she didn't brady but much was leaking out. The second time it didn't leak out as bad but she had a few minor bradys. When I did it with her she seemed to drink too fast, have a drift (heartrate) then get herself out of it. After 11 ml she was done (she had a big brady then). At 4am she took 29 ml from it. I also have the Doctor Brown bottles so I might try them today with her. For those who don't know Dr. Brown bottles are suppose to prevent gas. They have a ton of parts (other then just a nipple, ring and bottle) and we are told they along with the advant bottles are the ones they see the most in the ICN. I have a "preemie" flow on them so she might like that. We will have to see. One thing I like about her bottles (any of them) that the hospital bottles don't have is the clear silicone nipple so I can see exactly how much milk is in the nipple so that I can control how fast she is getting it better. I will let you know how the Dr. Brown bottle goes. Oh for those who don't know Emily normally has big bradys when she feeds by bottle. This is due to her immaturity.

The nursery is getting quiet again. The count is really low (at least that we have seen since we have been there) and so that could be why Emily had a good day yesterday. She doesn't like noise and light when she is trying to sleep. Also the baby next to her is not there now so there is very little reason for anyone to be near her unless they are working with her. I guess Emily can now get her beauty sleep!

That is all the news for now. Sorry there are no pictures. We didn't take any yesterday and forgot the camera (in the car) the day before.

Jennifer

5 days old... Corrected

Emily had an okay day yesterday. She was desating a lot and so they tried various things with her until they found something that worked. First they tried mask c-pap (they use the mask instead of the elephant look c-pap) that didn't work. Then they oxygenated her bubble. That didn't work. Finally they gave her Lasix to remove extra water and that seemed to work. They were a bit surprised also since she didn't appear to have that much more fluid on her. They have since be able to wean her oxygen so she is about 80% through the canula and 55% through her bubble. I am able to hold her though and she seems to really like being out. However she has been mommy needy lately so unfortunately Tony hasn't been able to hold her as much as we like. Emily is continuing having a high breath rate though. Normally 70-80 or more per minute.

I asked the doctor about the brain bleed and the calcification yesterday. She seemed to think that it wasn't really there. She said that the blood vessels in the brain get bigger at this stage in development and that the Ultrasound reader mistaked that as a bleed. She also doesn't believe that there is calcification on the brain as well. So that is why she didn't mention it. She has also discussed this with the doctor who is head of the ICN and he agrees. She doesn't believe it is worth getting an MRI from her either. So that was all good news.

The doctor is also trying various things to help her lungs. The two medications that she is receiving are delivered via a "puff". This is just like Primatine Mist if you have ever taken that or had to take a similar product for a really bad cold. Well puffs work great if your able to control your breathing so that you get the full dose of medicine, unfortunately Emily HATES the mask. She doesn't even like it being close to her. If she sees it she screams. Therefore often she holds her breath when it is on. This makes giving her medicine that way difficult. Luckily one of the respitory therapist who is always tinkering was on yesterday. He modified a device that they call a spacer. It is basically a long tube (the doctor said they used to use toilet paper tubes for this. I could see why it looked like one only clear) that allows Emily to slowly take in the medication. Therefore even if she holds her breath the medication will go in. There are problems with this though. You can't see the medication, therefore you can't tell if she actually got it, therefore you are guessing. Also if she wiggles too much the medication will not stay in the tube regardless. They are thinking about increasing her dose of these medications since she is not getting all of it anyway.

We haven't heard the results of the urine test. We expect them on Monday.

I decided that since the storage room can't find the Habermen Nipple (a nipple that the speech therapist recommended) that I would go out a purchase a similar product that I know about. The Habermen nipple for those who don't know is a variable flow nipple that you can change the speed that Emily can drink simply by turning the nipple in her mouth. I recalled that Advant bottles have a similar nipple (I remember because they always confused me). So I brought those in for Emily yesterday. She has yet to try them out but hopefully it will help her.

In other news, we are getting our second vehicle today. Tony was not really comfortable with me not having a car when Emily comes home. She is going to have many doctor's visits and it wouldn't be fair to her to have to take daddy to work then go to the doctor then pick up daddy again. This would be really trying when she is on oxygen too. So we are buying a Honda Odyssey. We are getting one with cloth interior (which is soo soft that if it were a blanket I would have got it for Emily!!!) The color is Desert Sand, or beige with ivory interior. This will match the carseat well and works well with the name Maya. Those who don't know I name everything. I have wanted a minivan for years and decided last year that the minivan's name would be Maya. Our current car, a Camry, is Sally.

Today is also Emily's big aunt Jazmyn's birthday. She turns 5 years old today. Happy Birthday Jazmyn!

Oh one final thing, the doctors are still trying to get her home by Christmas. This is our goal. Please pray that we will be able to have our little girl home by this Christmas. Thanksgiving was okay but I would hate to have to spend my favorite day of the year not being able to be with my little girl for the whole day. The way I figure from what I have learned about her discharge, if she is not ready (or about ready) by December 13th then she will not come home for Christmas. The reason for this is we need time to get the home oxygen set up, as well as the monitors and such. Typically they have told us we would know about 1 week before she comes home that she is going home.

Thank you for your continued prayers!

Jennifer

Thanksgiving Update

(We have tried to upload pictures but it is not working. We will try again later 1608, 1617)

Emily now weighs 2450 grams. (5 pounds, 6 ounces I think).

We got some bad news yesterday and Emily has had a setback. She was desatting constantly yesterday and quite frequently last night, so the doctors increased her oxygen to 100% and the flow on her cannula to 2.5 L.

We were also told that Emily has a grade 1 IVH (intra-ventricular hemorrhage). She also has some calcification in her brain. They are trying to collect a urine sample to test if she has a virus called CMV which could cause this. There is no treatment. We are still trying to talk to a doctor to get an explanation as to how she could get a brain hemorrhage this late since 1) all of her previous ultrasounds have been fine, and 2) she was supposed to be past the danger zone. Fortunately, the doctors don't consider this to be a problem. In fact, they consider it to be so insignificant that on Wednesday when the doctor gave us her ultrasound results, she didn't see fit to mention it. In fact, the doctor on Thanksgiving didn't mention it either; a nurse practicioner did.

The other night Emily took her entire 2 oz. From the bottle in only 15 minutes! Meanwhile, the speech therapist is still insisting that Emily shouldn't be allowed to feed from the bottle at all. Fortunately, the doctor has told us that they aren't going to stop feeding Emily from the bottle just because the therapist says so. We think that part of the problem is that Emily doesn't know her and she didn't take the time to get to be familiar with our little girl before shoving her finger in her mouth at their first meeting. The physical therapist and occupational therapist told us how important this was and they each spent two weeks getting Emily to be comfortable with them before they started the real sessions. No wonder Emily was breathing fast. We've seen her with the OT before she got comfortable with her. She would desat and her heart rate and respiratory rate would increase. The physical therapist said that Emily's muscles are a little tight, and she is going to start therapy for this.

Something funny that happened yesterday was, Emily decided that the urine collection bag that they had on her, was for poo not pee. She pooed in it 3 times and finally the nurse said she would wait till night shift to see if they could do it. We don't know the results of this venture.

Emily was desating a lot yesterday. Mommy thinks that it is because she has been off the steroids for a while now and we are starting to get a "real picture" of where her lungs really are. Luckily, they have started her on Flowvent, an inhaled steroid, so we should see an improvement soon (it could take a week as opposed to the oral/IV steroids that take a couple days). Emily can go home on Flowvent as well as her Albuteral (sp?) treatments. Yesterday the doctor decided that they would not try to lower her percent oxygen but rather lower her flow rate (thus lowering her O2). The reason for this is Emily is going home on oxygen. The oxygen that she will go home with will be at 100% and they will reduce the flow rate. Therefore this is the protocol that she will be on when she goes home.

On Wednesday they decided to order some more tests on Emily. This happened after they talked to the pulmanogist that will be following Emily when she goes home. These will happen next week. They also increased her diarall, to remove extra water weight (that could be in her lungs as well).

The first test they ordered is called a "milk scan". This test is similar to a HSG (for those who battled IF) only it follows where her milk goes. For those of you that don't know, they will feed Emily a dye and follow where it goes via x-ray. This is a relatively simple procedure and the results should be immediate. They are checking for acid reflux. The thought is that perhaps Emily has minor reflux that is going into her lungs and therefore making her desat at her feeds. If she does have reflux they will put her on Xanax (sp?) or Reglan. Ironically Mommy was taking Reglan to help boast milk supply.

The second test that she is going to have is a Renal Ultrasound. This is not the result of what the Pulmanologist said. When she was born she had a condition that her urine was going the wrong way. It was a minor issue and it didn't really need to be followed closely. At the time we found out (she had had 2 US by this point) we were told that they would do a follow up ultrasound close to her going home to make sure it cleared up. There is no reason to believe that it hasn't cleared up so we think this will be uneventful. On the off chance it hasn't cleared up she will need surgery that is relatively routine.

Emily might also get a CT scan or an MRI before she goes home based on the results of this last head ultrasound. As it stands right now this is not scheduled though.

I hope everyone had a good Thanksgiving!!

Tony and Jennifer

16 weeks 2 days

Hello,

Sorry I don't have any new pictures today. Emily is sleeping a lot now and when she is not I am trying to encourage her to do so.

Anyway, Emily has been doing well. She had the speech therapist come and see her again on Monday. The therapist still thinks that Emily should not be bottle feeding. Which to us is a great surprise since Emily took 2 full bottles yesterday (60 ml or 2 oz.)!! There are clearly times when Emily wants to eat from a bottle. However with the speech therapist recommendations we are scared that someone will come in and demand that Emily stop taking anything from a bottle. We have been assured that will not happen. However just to be on the safe side I have requested a family meeting to discuss this and to get everyone on the same page.

Emily was seen by the Physical therapist yesterday. She did really well and the physical therapist was impressed with Emily and what she was not only tolerating but doing. It actually turned out to be a real session! (Emily doesn't do well with new people normally.) The therapist said that Emily's muscles are a bit tight, and that she was concerned with Emily's sensory defeniveness in her feet (she doesn't like her feet to be touched). I don't think that is that big of a surprise though since they have been drawing blood from her feet for the last 3 months!! She did say that Emily can be on her belly and suggested that we roll up a blanket and put it under her lengthwise to help her get some feeling on her limbs.

Other then that not much has changed. She is on a flow rate of 2 liters per minute. Her O2 requirements have been around 50-60%. She is now being demanding when wanting to be held. She is pooing all the time so she has a diaper rash. Last night she was fussing right before her bath. Then we heard a noise and this awful smell, I mean awful smell came from her. Her diaper was full!

We haven't heard anything about when we can spring her from the hospital. We were told early on that they normally only keep babies there till a month past their due date and if they need anything beyond that then they will send them to the children's hospital. This is yet another reason why we need the family meeting. We feel that Emily's issues now are not that bad (compared to where she was). Also I seem to be doing a lot of her care now (yesterday I even suctioned her nose all by myself!), which I like doing but I think it makes it more frustrating that I have to drive an hour to take care of my child. Hopefully Emily will turn yet another corner soon so we can bring her home!

One last thing, Emily does have her going home outfit now. You will have to wait to see her in it to though to see what she got. Also we have made a ton of new friends in the last year. If any of you want to be included on our Christmas Card list please email us at littlemissemily@comcast.net and we will put you on the list. We may not send out the cards till after Christmas this year but they will be sent out!

Have a happy Thanksgiving!
Jennifer

Pull My Leg

Emily now weighs 2244 grams (4 lbs, 15 oz.) She continues to feed from the bottle almost every four hours. Today Dad fed her for the first time and she took 20 cc's for him at 8 PM. She also took 30 cc's at 4 PM. While her nurse was taking her blood pressure today, she had to pull Emily's leg to get it out of her little outfit. Then we all heard the noise, which was closely followed by a foul-smelling odor. Then when we were giving Emily her bath tonight, she went in the tub for the first time. (This was fun to clean up.) When we left tonight, she was staring intently at her monitor, probably because of all of the pretty red, blue, yellow, and green lights. (I've included a picture from September showing what her monitor looks like.)

Tony

Fifteen Weeks, FIve Days Old

Emily lost quite a bit of fluid weight yesterday. She was given medication to help her get rid of some of her excess fluids and had three diapers which were 40g, 116g, and 30g yesterday afternoon. She now weighs four pounds, 14.7 ounces again, but is doing much better with her breathnig. She isn't working hard today and her O2 requirements have come down.

We spoke with the doctor who was on service today about Emily's feeding. Basically, her orders are for us and the nurses to keep doing what we've been doing with Emily - to try and feed her if her respiratory rate is good, she's awake, and sucking. If she's too tired or breathing too fast, we shouldn't try to feed her, which we weren't doing anyways.

Jennifer also talked with the doctor about moving Emily to four-hour feeds, which is also something that the doctor is a big fan of, so Emily started taking 60 cc's of milk every four hours starting at midnight. At 4 AM and 8 AM she took 20 cc's from the bottle each time.

One of the pictures last night was taken through the little hole in the top of her hood she's in to get humidity while she's sleeping. (It looks like Emily's in a blue circle.)

In other news, Emily's great grandparents are celebrating their 61st wedding anniversary today.

Tony

Fifteen Weeks, Three Days

Emily has broken the five pound mark! She now weighs in at 2318 grams ( 5 lbs, 1.7 oz). She had a little more trouble breathing today. Her flow on the nasal cannula was increased to 2 liters/minute and at one point she was on 100% oxygen. She seemed to be working harder to breathe, so she wasn't fed by the bottle today. Her feeds have been increased to 44 cc's every three hours. One of the pictures today shows Emily being held by her Daddy and sucking on her thumb. She was asleep most of the day, but as usual, she woke up for her bath and was very alert and active aftwerwards.

Tony

Fifteen Weeks, One Day

Emily now weighs 2180 grams (4 lbs, 13 oz). The flow rate for her cannula was reduced to 1 liter / hour yesterday, and her feeds were increased to 42 cc's every three hours. We are getting more aggresive with the bottle feeding since this is the only thing keeping Emily at the hospital. We try to give her the bottle every time. Today she took the whole feed from Mom at noon, 34 cc's at 6 PM and 22 cc's at 9 PM. She had another eye exam today and her ROP is still stage two, regressing in both eyes.

Tony

Emily Rolls Over

Emily now weighs 2118 grams (4lbs, 10 oz). She received the rest of her two-month immunizations today and did pretty well. Mom also put her to breast today, and Emily really liked it; her oxygen saturations went up to 100 both times! The only problem was that she was so comfortable that she didn't get much milk. After taking a few cc's, Emily would fall asleep.

The big news is that Emily rolled over with a bit of help from her crib. She was on an incline of around 15 or 20 degrees and laying on her back when she rolled over onto her side. She sat there for a few minutes, eyes wide open and hands splayed out not quite knowing what to do before she completed the roll onto her belly. Then she just lay there, with her head face down and her nose buried in the sheets. (I'm not sure how we're going to break her of this habit.) The developmental specialist wouldn't count it as being real, but Emily now knows that she can do it, so trying it on a flat surface shouldn't be too far behind.

Tony

Fourteen Weeks, Five Days

Emily is having many boring days now, which is why these posts seem to be getting more infrequent. Not to mention shorter. Emily now weighs 2087 grams (4 lbs, 9 oz). We tried to feed her from the bottle twice today, but this ended both times with episodes of bradycardia after the first few sips. She started getting her vaccinations yesterday. They seem to go pretty smoothly. She gets really angry when she gets stuck, then cries for a few minutes before forgetting the whole thing. Mommy and Daddy finally got to experience one of her explosive BMs that her nurses have talked about while changing her diaper. There was a loud noise, followed by Mom screaming and splattering sounds on the floor. On the upside, Emily seemed to feel better after it was done. Needless to say, her clothing and bedding needed to be changed, so we took home two bags full of laundry which need to be done tonight!

Tony

Fourteen Weeks, Three Days

Emily lost a bit of weight today, but this is actually a good thing. She now weighs in at 1961 grams (4 lbs, 5 oz). She was given Lasix because x-rays showed some fluid build-up in her lungs. Her heart rate and respiratory rate were down today, and her O2 saturation levels were in the 90+% range for the most part. At 3 PM she took a full feed (38 cc's) without even stopping for a break. At 6 PM she took 23 cc's of her feed before she got tired, so she's coordinating the sucking, swallowing and breathing well, but she just needs to develope some more reserves so she doesn't get tired.

She was awake and alert for a good part of the day - she was playing games with Dad which included "where'd the cannula go?" and "isn't Mommy funny?". (She kept taking out her nasal cannula and smiling when Daddy put it back in.) She also played with some of the parts of the gym that Mommy got for her. She especially likes this gaudy thing with a brightly colored toucan that has a blue paddle which whirls around when she hits it.

Tony

Emily's going home outfit?

I need help deciding on an outfit for Emily to come home in. Please help! These are my options.

Edited to add: Two outfits were trailing badly so I have taken them out and reset the poll.

Option A

Option B

Option C

Which should be Emily's going home outfit? Option A - Pink dress with white collar Option B - Pink dress Option C - Pink pant suit with circus train Click a link to cast your vote Current results

Fourteen Weeks, Two Days

Emily now weighs 2050 grams, or 4 lbs, 8 oz. We're well on track for 5 lbs by Thanksgiving! Her ROP is still stage 2 in both eyes, but is now regressing in both. The eye doctor says she's 'boring'. Yesterday was a little rough on Emily. Her nose got clogged again; her oxygen requirements started to creep up and she started having more bradys, so Mommy pushed the nurse practitioner for her to get the oxyhood. The NP finally relented, but would not allow Emily to get oxygen through the hood, only humidity. That seemed to do the trick - she was much better overnight. Her nurse said that she suctioned Emily and got some boogies but that she didn't bleed this time. Her oxygen requirements are also down a bit. Her nurse said that Emily took a full bottle for her 3 AM feed this morning. (!), so it looks like she's getting the hang of this 'eating' thing.

Tony

Fourteen Weeks Old

Emily now weighs 1974 grams. She had a bad blood gas today (pCO2 of 89), so she was put back on the nasal cannula. Her latest blood gas showed a pCO2 of 80, so there was some improvement. Emily was bottle fed by Mommy today and took 20 cc's of milk. Along with this came two big burps.

Tony

Thirteen Weeks, Six Days

Emily now weighs 4 lbs, 6 oz. She was still off of the nasal cannula today. Her nurse today was surprised she stayed off it all night. She didn't have any bradys today at all. The plan currently seems to be to give her some time for her little nose to heal before trying her back on the cannula at a reduced flow so that she can learn to eat. Mom got to hold her today and give her a bath. We held the mask used to bag babies by hand just a few inches from her face; this is enough for Emily to breathe comfortably. She really enjoyed her tub bath for the first time today. She was very alert and active - and smiling! (I still can't figure out what's so darn funny.) She's also been moved into the bigger crib usually used for multiples because the oxyhood makes things a little more complicated.

Tony

Bubble Girl

Emily had an interesting day. The nasal cannula has been drying out her little nasal passages the past day or so. When the nurses try to suction her, she bleeds and then the blood clots in her nose, blocking her airway and creating a vicious circle. As a solution, they put her in a plastic tent this morning which they can keep humidified. While she was desatting earlier today, one of the nurses turned up the oxygen to her little tent because increasing oxygen through the cannula wasn't helping (she was at 75%). Emily started breathing through her mouth and was doing fine. When one of the nurses checked in on her, she noticed that our little girl had pulled off her cannula, but her O2 saturations were still above 90%! Even funnier, later in the day, her nurse commented that we had put her cannula back in. Mom and I were surprised because we hadn't, and no one else had come over to check on her during that time, so Emily had somehow managed to put her cannula back in correctly all by herself! By this evening, they had taken off the cannula completely to give her a break and Emily was getting oxygen from the air in her little plastic tent, which was ~45%. But, she was doing all of the breathing on her own! Hopefully this little hiatus from the cannula will last only a few days until her nasal passages heal and then when she gets back on the cannula the doctors will start weaning her flow.

Tont

Thirteen Weeks Five Days Old

Emily now weighs 1900 grams (4 lbs, 3 oz)!

She is still on the nasal cannula. Her nurse said that she (Emily, not the nurse) had one brady overnight for which she required stimulation. Dad took these pictures last night. We especially like the first one where it looks like she's praying. The physical therapist was especially happy to see that because of all of the things it implies developmentally. The other picture is of her second tub bath ever. She doesn't look thrilled with the prospect, but she seems to like it better than the sponge baths. Her O2 requirements were around 42% this morning, with a flow rate of 2 liters (per minute?). We hope that she can stay on the cannula (It's been almost 48 hours).

Tony

Emily's Great Leap Forward

Emily now weighs 1880 grams (4 lbs, 2.3 oz)

Emily was moved onto the nasal cannula today! The doctor just wanted to try it out for two hours and see how she did. He also expected her oxygen requirements to go up to between 60% and 80%. Emily had other ideas however, and has been on for twelve hours at the time I write this post. Her O2 requirements only went up to 40-50%, wheras on the CPAP she was requiring 30-40% oxygen. Mom also tried bottle feeding Emily a little bit today. She managed to take a total of 5 cc's. Mom also gave Emily her first real bath, which entailed being put into an actual bathtub with water in it. She didn't even desat!

I think it's safe to say that our little girl will be home for Christmas this year!

Tony