Pain is all Emily sees

Hello,

Well Emily got transferred to the Si-Pap machine that they were waiting to get in. She hasn't done that well on it though. She figured out rather quickly how to turn the machine off by holding her breath and is often doing that. Therefore defeating the purpose of the machine. Her stats on the machine are not that great also so they are often switching her back and forth between the C-pap and the SiPap.

We think that Emily has a Kidney stone. She is prone to them because of the diarill that she is on to make it so she can live (fluid build up in her lungs is common with her condition). She was screaming uncontrollably for most of the afternoon evening yesterday. They were trying to keep her sedated last night but from what I hear her stats started drifting down and would hang there for long periods of time. While short times of this are not bad (they are not good either) hanging there is really bad!

They are running a series of tests on her today (unfortunately no ultrasounds because of the holiday, this would tell if she has kidney stones) and hopefully we will have some answers soon. We are going to the hospital early today to be with her.

This is about all the news we have for now. Sorry for no pictures but who wants to look at a baby in pain?

Jennifer

Go Emily Go!

Hello,

Sorry for no pictures. We did take video of her yesterday but that was it. I forgot to mention that Emily rolled over 2-3 times front to back on Wednesday. She clearly knows what she wants and is not going to wait for people to do it for her! Also Emily scooted across her crib yesterday. She was on her belly and made it about 5 inches. This was even in the P.J.'s that are a bit big for her and made it so her legs were well within the body of the outfit. She was funny doing it too. She would complain and kind of commando crawl then get tired sleep for a minute or two and then do it again. Very funny!

I realize that I should explain the photo of Emily in jail. I was talking to my father the other day and he was walking to work. He told me that he has pictures of Emily on his person. I asked him if he had made a button of Emily like he made of my sister before they brought her over from China. He said he hadn't. I said he should and I would take a picture of her "behind bars" so he put "Free Emily" on the button. Therefore the picture. I am going to try to see if I can get a better one of her "behind bars," but she has to be doing a bit well for that since she needs to cooperate with me.

The only other new thing is Emily is now on 27 calories per oz. This is equivalent to Emily drinking Ensure everyday. She is actually getting the same calories.

That is all that I have for now!

Jennifer

Emily and her Christmas

"Free Emily!!"

Hello,

Sorry we haven't been able to post till now. The Internet was down for 2 days at the time that I normally post. Then when it finally got back up I had a backlog of things to do and so posting got pushed back.

Emily has been doing okay on the c-pap. She has been at 100% (though the machine says 94%) for about 3 days now. Yesterday they even increased her c-pap to 8. She has occasional desats that I think are more or less mechanical then anything else. Normally they don't go below the high 80's. She was able to eat from a bottle/breast and was put on the high flow cannula to do so. However the last few days it has been clear that she needed the C-pap so I haven't even asked if I could do it.

We put her in her Christmas dress on Christmas and she promptly decided to throw up on it within 30 minutes of getting in it. So unfortunately we were unable to get a family picture. We are planning on trying again but I don't know when that will be.

She had some hum dinger of poo's recently. Grandpa Billings you smell like roses compared to her. She actually makes your eyes water and one nurse said she felt like she was going to throw up just testing it (they test the poo for blood). In other words, when she stinks, run for the hills!!

What else can I say about her... Well the doctor talked to me yesterday and said that he is going to try one more c-pap machine that they are trying to bring into the hospital. This c-pap can give inspitory pressure (or pressure when she breaths in, I still don't quite understand how it is different then C-pap but it is) which they tried to do on one of the other c-pap machines that they currently have and couldn't get it to work. He says that if this doesn't work then we should plan on going to the children's hospital by mid January for the trache. We are nervous, scared, and I think I am a bit excited for that day. Excited because then we will have a set plan and road to head down and hopefully this would lead to her going home sooner rather then later. Also I want her to be able to take from the bottle and we can't really do that now. I know that no procedure is not with out it's risks but I hope that Emily will be able to come out of this relatively well.

That is about all the news I have for now. Talk to you all later!

Jennifer

Emily becomes an Elephant

Emily was put to the C-pap on Friday. The doctor says that this is one final effort to having her not be trached. I believe that Emily is close to not needing to be trached. She does many things that normally put a baby down that route, including breathing on her own and being of the vent for 2 + months now. She clearly can do what she needs to do, but she can't keep the pressure in her lungs to help her breath. Which is a small but vital thing to do.

So on Friday they tried her on one machine (it was actually the last vent that she was on) to give her pressure support via C-pap. They were not able to give her the pressure support (limitations of the machine not Emily) that they thought they could give her and since she had about 2 inches hanging from her nose they put her on the conventional C-pap machine. She seems to be doing well on it. Her oxygen has been able to be weaned, albeit slowly. Yesterday it was around 95% and she was statting in the upper 90's, though they did have her as low as 85% at one point. I don't know what they were able to do overnight.

One thing we are not happy about is she has stopped taking the bottle. I talked to the doctor prior to her starting the C-pap and he told me that he didn't want to stop her feedings (by bottle) for that long. He was thinking that she could go back on the high flow cannula for feedings and then go back on the C-pap machine, that is if she couldn't handle them well on the C-pap. (It is hard to eat on C-pap.) This was my understanding all the way until yesterday's 4 pm feeding when the doctor said that the doctor on service said that she can't take any bottles till Monday at the earliest. To say this makes us mad is an understatement. We know that she needs to be bottle fed. She is 45 weeks gestation tomorrow. They keep telling us that she may loose her sucking reflex if we don't feed her yet they think it is okay to leave her like this (mad and all since she like eating from a bottle) for 3 days! Tony and I have our own opinions about the doctor who was covering for yesterday and we are trying to keep them to ourselves. Last time this happened though it took her 3 weeks to recover to where she was before they stopped letting her take the bottle. I guess we have g-tubes in our future (a tube to put food directly into her stomach).

Emily is tolerating the c-pap as well as she can. She doesn't like it but she does okay with it. We have noticed that she is awake a lot now and then crashes and "power naps."

That is about all for now.

Have a Merry Christmas!

Jennifer

A Rough Day

We got some bad news about Emily yesterday. The flow rate on her cannula was increased to 6 liters / minute, and they haven't been able to wean her off of 100 % oxygen. The doctors have said that if she gets to the point where she would require a CPAP, they are going to send her to CHOP (the children's hospital) and have a trache put in and put her on a ventilator. If this doesn't happen, the best we can hope for is that she stays in the intensive care nursery at Pennsylvania Hospital for many more months until they can wean her flow rate down to 1 liter/minute or less. In any event, she will likely be on oxygen for several years after she is released.

Tony

Emily's Weekend

Hello!

Sorry it has been a while since we posted. Emily is doing well. She had a really good day on Saturday and was awake for most of the time that we were there. On Sunday she had a bad day though and was desating a lot. She looked pale to me and they ran a blood test and she was anemic. So she got blood and a diarill. She looked better afterwords (yesterday) but she is still desating. Not bad (into the high 80's low 90's) but still desating. She stopped her inhaled steroid, because we didn't think it was doing anything for her and now we are all wondering if it really was doing something for her.

The occupational therapist saw her on Saturday and was shocked by her. She started showing off all of her tricks. She said that Emily is developmentally around 2 months of age. That was good news to hear!!

I started the ball rolling (or maybe I gave it a good hard push) on getting a high flow cannula at home for her. There used to be a one type but the FDA recalled it. Now Emily is on a second type but it is new and not very many home care companies have it or can deal with the high flow systems. The respiratory people were looking into it with no avail so I e-mailed the company directly (that makes the heater for the cannula) and told respiratory I did so. I guess now the rep for the company that they are leasing this system from (just for Emily) was there yesterday and she is looking into it for us. I just don't want to be in a situation where she is ready to go home except she is on a high flow rate that we can't accommodate, because we haven't done the research. I guess it pays to be the squeaky wheel sometimes!

That is about all that is going on now. Emily is going to be supplemented with Formula soon (maybe even today) but I am now not worried about my milk supply. I know that pumps are only marginally effective and Emily can draw more from me then a pump can. I think I am just going to do my best and hopefully when she comes home then Emily can get what she needs from me. I may have to rent a scale though just to be sure though.

Talk to you all later!
Jennifer

Blue Jean baby's milk

Emily has had some good days recently. She had her milk scan on Wednesday which I was there for. I was actually able to be there for the whole test. The test was simple enough, lay Emily on an imaging table and feed her a bottle with radioactive (slightly) material in it with her milk. Then feed her the rest of her bottle. Then lay her flat on this imaging table and leave her there for 1 hour. We, the nurse and I, were able to watch her radioactive milk go into her belly via monitor and then watch the whole time she was on the table. It started to go in to her intestine while we were there. The whole point of this test was to see if she had any acid reflux and to see if this went into her lungs. In my opinion, she has no reflux at no time did we see it go back into her lungs, or even come back up for that matter. The downside to this test is she was radioactive for 24 hours after the test and so they had to take extra precautions with her. Keep her diapers in a different spot and not wash her bottle for 24 hours and such.

I am pleased to say though that she is not radioactive anymore. In fact I can say with some certainty that she doesn't even have it in her system anymore. This is because she had not one but 2 blow out diapers yesterday and this is with the size 1 diapers and not the newborn diapers!! The first one happened around 3 pm yesterday and it was EVERYWHERE! I decided to give her a bath right then and there. Then I put her in her swing and scrubbed her whole crib, and the counter behind her crib (not that it got all over all of that but that area did need a good cleaning!!).

Oh one more thing about the Milk Scan. She is on a high flow cannula which is giving her a flow rate of 4 liters per minute and it is well humidified. In order to be transported down to where the test was going to be performed she needed to get on a regular cannula. This means no humidity and no 4 liter flow. So she was on 2 liter flow during that time (about 2 hours). They had her hooked up to a portable pulse ox machine (to measure her oxygen in her blood) and most of the time she was sating 98 and above. It was really nice to see with her.

Emily also has been taking her bottle well. Last night she took her whole bottle at 8pm, 12am, and 4am. The night before she took the whole thing at 12am and 4pm. It will be interesting to see if this pattern continues. I did ask if she could be on a trial "ad lib" or eat when she wants, and the doctors are not ready for her to do that yet.

Many of you have wrote to me about Domperidone and the wonderful results you have received from it in regard to milk production. I have looked into it, and even went to a compounding pharmacy who said that they don't carry it anymore. So after a bit of research I found out why the FDA doesn't allow it in this country anymore. Here is the link http://www.fda.gov/bbs/topics/ANSWERS/2004/ANS01292.html Emily already has heart problems so I will not be using this drug even if it were allowed in the country. I just wanted to share with you in case you are using it what effects it may have on your child.

Talk to you all later!
Jennifer

Emily and the bunny with a heart

As you can see Emily had a new outfit on last night. This one her paternal grandmother got her. Isn't she too cute! The one with me holding her is taken right after she fed off of me. I don't know why but her eyes just bugged out after that.

Emily had a good day yesterday. She took some partial feeding from the bottle and some partial feedings from me! She did well on both counts. She also had her echocardogram yesterday. The doctor just was getting ready to do it when I came into the ICN. He wanted Emily to calm down before he started though so I picked her up. She calmed right down then. So the doctor did the Echo with me holding Emily. She did really well. The medicine that he recommended giving her really has helped her a ton! Her heart is so much better he said. He recommended no more changes in her medication and said that he would see her again during the week after Christmas. I must say that while watching the ultrasound of Emily's heart I could help but see the similarities with the Rolling Stones tongue that they often use for their tours. Perhaps it was the angle of the ultrasound picture.

In other news while we were waiting in the family center during the shift change (we are not allowed to be at Emily's bedside during shift change which is an hour every 12 hours) we inadvertently heard a poor woman getting beat up by her boyfriend/husband. This guy actually beat her in the family center. We were the only ones in the family center other then this "couple". The police were called and we are assured that he will not be allowed to go back in the ICN again. They have a baby in the same nursery (there are 4 nurseries in the hospital) as Emily and we are worried for Emily's safety if he were allowed back in again.

Thank you for everyone who offered suggestions on how to boast my milk supply. One thing I am realizing is that I am lucky that Emily will suck and suck and suck on me. Last night I nursed for 40 minutes with her. She would have done it for longer but I had to stop her for fear that she would wear herself out. Anyway when I got home about 1.5 hours after her nursing I pumped and got about double what I normally get. I have one of the ICN doctors looking into all the herbs in the http://www.traditionalmedicinals.com/?id=30&pid=79 mother's milk tea to make sure nothing will harm Emily.

Thank you for all of your help. I will try some if not all of them and let you know how it goes.

Jennifer

Don't we all wish we could lose our water weight?

Hello,

Emily had a good weekend. She handled both the bottle and breastfeeding well. However on Saturday night we noticed that she gained about 3 oz overnight! This is not normal. Also her output had went down. Needless to say she had fluid build up on her lungs and this made her oxygen requirements go up. So yesterday they gave her a boast of a diarill. This really helped! She got rid of over 100 grams (or ml) of weight the very next diaper. Tony says this would be the equivalent of him peeing 10 lbs! Now she is doing much better I am told.

Other then that you can see she played dress up for us on Friday night. This clothing is size 0-3 months on her. You can see it is a bit big but she will be there soon. Tonight I am planning on having her play dress up again after her bath. She normally tolerates it well.

By the way, we looked up her heart diagnosis (or what we thought was her diagnosis) and it scared the living daylights out of me. We went to the doctor yesterday and he told us there is still a ton of stuff they can do for her so we shouldn't worry. Also the cardiologist isn't calling it what we thought it was, he is calling it pulmonary hypertension and not cor pulmonale which is what we thought it was called. Has anyone had experience with the later? There isn't much out there for cor pulmonale and what is out there scared me.

She still needs to be treated extremely well though. We have talked to people who talked to the doctor (head of the ICN) who is going to talk to the nursing staff about making sure whoever is in charge of her (nursing wise) has a light load so that she will not be allowed to cry. While I know that every parent doesn't want to see their child cry, Emily has a medical reason for this. Which I must admit for a parent that doesn't like to cause trouble if I don't have to (the nurses in the Antipardom unit when I was pregnant knew to leave me alone!) this is hard but a vital step for the care of our child. We are still hoping to keep her in this hospital though if at all possible. The count is really low now and provided it doesn't go up high we should be alright. She may also be moved to the transition nursery if the count goes up since there are normally more people to take care of her in there.

I have given my all to nursing her. I believe I am still producing less then she is consuming and the Reglan that I was prescribed is not good for me. It causes too many side effects to the point that yesterday we had to leave the hospital early because I wasn't feeling well. I am still going to continue to pump and try oatmeal and "mothers milk" tea. But I think that the day of supplementing with formula is close at hand. Which for me is a big bitter pill to swallow. If anyone has any suggestions on this or what else I may try please let me know. I still hope to nurse her when I am at the hospital for her feeds but that will only be for 20 minutes at the most (total), hopefully 3 times a day.

Happy Holidays!

Jennifer

P.S. Those of you who were on the Lefse Leaflet please post to it I have been really out of the loop lately but I can easily read that blog. Let me know if you need to get access to it again. Thank you!

Emily's New Dress

Hello,

Well Emily is able to eat from a bottle or breast. She is completely in control of the situation because of her heart. However there are a few ground rules. She can only have breast or bottle and if she chooses breast she can only be there for 20 minutes tops. As you can see this can cause all sorts of problems. She prefers to go to breast but when she doesn't get all of her feed she wants the bottle. So they have resorted to giving her a pacifier dipped in a sugar solution to try to calm her down. It works... sort of.

Other then that Emily is doing well. To look at her you wouldn't think that she is as sick as she is. She sleeps a lot but all babies do that. She is normally only awake when it is time to eat. She also knows which people she can demand attention from and which ones she can't. I have noticed that around shift change she demands attention from me even though I have been there all day and she hasn't wanted that much! Silly Emily!

I am told by talking to different people that people are not looking at the sidebar on this site. I have included various things and links on it recently. Including Emily's registry, an appendix to this blog with more detailed information of stuff on this blog, a way you can get prints of our pictures and see more pictures then we have on this blog (if you want earlier photos let me know), and just today I posted my friend Sonia's blog. Those who don't know Sonia and I met about a year ago when we were both battling infertility. She got pregnant with twins last November and ended up having many of the same problems in her pregnancy as I did in mine. She delivered at 23 weeks on April 4, 2006. She sadly lost her daughter but her son Isaac is doing very well. He came home after a 6 month hospital stay. Having known her has made me feel like I am not the only one that has went through all of this and I believe has made me even more thankful to the time I have with Emily.

Emily got to see Santa today so we put her in her holiday dress. The pictures of her with Santa are on a different camera but here she is in her dress. She is sooo cute!

Jennifer

My pretty little girl

The bumper in the previous shots I made in college as an assignment. She seems to really like that it is up.

Hello,

Well Emily had a good day yesterday. They were able to wean her oxygen down to about 60% and she was doing well at her feeds taking at least some of the bottle if not all of it.

However after her noon feeding the cardiologist came by and talked to me. I guess Emily's Echocardogram showed that her heart is enlarged on the right side, the side that pumps to the lungs. This is because her lungs are stiff and it is harder to pump blood through that side. They have many treatments for this we are told. The first one they are trying is a blood vessel dilator. This is a oral medication. They actually have to grind it down and put it in a suspension just for her as it is typically given to adults and not children and therefore it is only available in a pill. This condition will not go away tomorrow or even next month. This condition will last as long as her lungs are in the state they are in. So 2 years seems to be the consensus from all that we have heard. That is not to say that she will be in the hospital for 2 years though. The doctors all believe that we have months not years though until we can finally take her home.

In the meanwhile Emily has to treated very well. Whatever she wants she gets. If she is stressed at all it puts added pressure on her lungs and therefore her heart. Also they have stopped feeding her by bottle till they get recommendations from the children's hospital on how to feed her. I hope it is soon since Emily really likes eating for herself! This is because any choke that she may have can cause extreme damage to her. Same is true if she were to become ill. Emily has very little to no "reserve" to breathe with and so she needs to be well at all times. Most babies don't get the RSV shot in the hospital (hospital is suppose to be a controlled environment) but Emily will because she is that ill.

The doctors seem happy that they finally have a diagnosis for her. Before they were trying anything to help her not having the ability to do things scientifically. Now that she has this diagnosis they can treat her more effectively.

While this is a hard pill to take, we believe that Emily will continue to fight as she has her whole life. She is truly a miracle. All of the doctors say that.

Yesterday I thought I would try to let daddy have more of a role in her so I let her change her diaper (a good start I thought). Well Emily got daddy. Just as he lifted her legs she went all over getting daddy in the process. Amazingly she got the only section of her bumper that is covered in plastic! Good aim Emily!! Needless to say he will not be changing any more of her diapers for a while!

In other news my father and his wife, who already have a 5 year old adopted from China, has sent in the application to adopt a "waiting child" from China. These are often children, to my understanding, that may have slight medical problems. They also can be older children. They are almost always girls and I believe that they requested a girl this time. They hope to get their doctuments (including a picture of little Miss Emily, as last time there was a picture of me) to China by this spring, with a hopeful going to China and a homecoming of next summer. This is much faster then the 2 years that they waited the first go around. My sister came over when she was 10 months old for those who don't know. Hopefully they will (hint, hint) create a blog of their own so everyone can follow their progress. I will let you know more information as it is available to me.

Jennifer

Emily's new device

Hello,

Well Emily did rather well yesterday. She couldn't get her oxygen lowered over night and didn't take any bottles but by the time I saw her she really wanted to be held. So I did that. She breast fed well from me taking about 15 to 46(!) cc's or 1/2 oz. to 1.5 oz from me. Her stats also improved with me there. They decided to try her on a different nasal canula. They can give her more humidity and more flow with this canula. The hope is to eliminate the oxihood. So far it has worked well. She is on a flow rate of 4 liters per minute and an oxygen rate of 70% last I heard. Hopefully they will be able to lower her flow soon. The only bad thing about this canula system is has a tube that is only about 4 feet long so she is really tied down as far as how far she can be from the source. In other words her already small world got smaller! However this new canula is helping her and last I heard she took 1/2 of her 12 midnight and her 4 am feedings by bottle!

That is about all the news I have for now. Sorry for no pictures I didn't have the camera with me when I sat at the computer and I am multitasking as it is. I will tell Tony to post some pictures tonight.

Jennifer

Thirteen Days Old, Corrected

Emily is still packing on the weight- she now weighs 2600 grams, or 5 pounds, 11 ounces.

She had a pretty good day yesterday and did well through the night. She was very congested yesterday and had to be suctioned, but she had a good session with occupational therapy and slept a lot. She has also started taking her feeds from her bottle again. The pictures today show Emily in her brand-new hat that her Mom made for her yesterday. (All of the nurses seemed quite impressed.) Jennifer held Emily on her knee while doing some knitting, and she seemed to enjoy that. Emily has also been getting much more expressive with her eyes and face. It's hard to describe, but she's furrowing her brow and moving her eyes in more suble ways. She's also starting to look to her left more while she's in the crib because people have started to approach her from that direction and she's starting to get some stimulation there.

Although it looks like we'll be spending Christmas with Emily in the hospital, I think that she would like it. To put it another way:

Brand-new pacifier - $2.00
Yarn for cute little hat - $5.00
Brand-new pulse-ox - $15.00
Cute little preemie outfit - $30.00
Christmas dress to have my picture taken with Santa - $40.00
Dr. Brown's bottle with preemie nipples - $60.00
2007 Honda Odyssey- $29,400.00
5+ month stay in the NICU - $???,???.??
Spending the holidays with Mommy and Daddy - Priceless

While Emily was breast feeding yesterday, she got tired and grabbed Mom with both hands (a double-fisted drinker!), turned her head, put Mom's nipple in her ear and fell asleep. Mom thought that this didn't look too comfortable and tried to move her. This led to some of Emily's loudest screams yet, accompanied by some oxygen desaturation alarms before she finally won the argument, put Mom's nipple back in her ear and went to sleep. I'm not sure that this was the kind of drinking problem that the doctor was referring to when she said that Emily still needed to work on feeding before she could go home.

Tony

Emily's Lungs

I thought I would post a generic picture of what Emily's lungs are like. Neither photo is of Emily. The one below is what Emily's lungs looked like the last time we saw an x-ray (a month or so ago). We have been told they have seen some improvement but not much since then.



This is what a normal lung would look like if she had been born as most babies are.



Just thought it would help people understand what we are up against.

Jennifer

Our family meeting

The picture below was taken before she got her blood. You can see how pale she is.






Hello,

Well Emily is doing slightly better yesterday. She is stating well most of the time. However she is on 100% oxygen through the canula and through the oxihood. They have increased her inhaled steroids and if they work, they expect to see it happen by early next week.

Now the family meeting. We were told again that her lungs are barely functional. She has very little "reserve" and so minor things seem like big things in her. The doctor even said that she is the kind of baby that you see a few times in your career, rather then a couple of times a year. She is hoping the inhaled steroids will work with her since she can be released with those. However if they don't they may have to give her a oral steroid again. To me this means that she is going to be in the hospital for even longer since she will do well for a while and then she may rebound from it. They may also try her on one other drug that the pulmanologist recommended. Her renal ultrasound looked good but they are seeing the effects of the lasix (a diarill) on her kidneys. They are getting calcification I think.

They have moved the "milk scan" back to next week if they do it at all. She said that there is reason to think that she doesn't have any reflux (or very minor) and that what they are seeing is just that her lungs are in bad shape. She is also getting an EKG to check her heart to make sure it is growing correctly since sometimes they see the heart grow wrong in babies with bad lung disease. (The heart has to work harder to get blood through the lungs so that side gets bigger then the other side that just pushes it through the body.)

As far as when she will go home it is really not looking good for Christmas. She said that if she were to guess it would be months not weeks that we are looking at for going home. There is even a possibility of being transferred to a rehab center. I think that they will make that decision towards the end of the month though. The good news is they are talking about an end game. She is going to go home as oppose to the last family meeting when even that was questionable. Her requirements for going home are she has to be taking every feed by bottle, she has to not desat as much as she does (and we have got used to), her flow on the canula needs to be less then 1 liter per minute (currently at 2), and she has to show signs of having some reserve as far as lung function. These are a lot for her to overcome in a short period of time.

Tony and I at this point are thinking about postponing our Christmas this year. We can't imagine a Christmas without Emily and regardless of how hard we really try we are not going to be able to spend that much time with her on Christmas. Our new goal for her coming home is Tony's birthday of February 25. Ironically this is the one year date of the IUI that helped create her. We have decided that we would take the 25th of whatever month she comes home and call that Christmas. I just hope it isn't in Lent. I am going to let her have a picture taken with Santa though. The hospital offers that. I am hoping they will even let her be in her Christmas dress that I got her. I am also thinking of taking a "family portrait" while she is in the hospital. I figure this would be simple enough when she is having a "good day". After all we have 3 cameras that we bring everyday. Surely we would be able to get a good one with that. I might have to do it a day that she has a lot of people she knows working though since she may not want to look at the camera otherwise.

The thing I am most sad about is her not seeing snow when it snows this winter. Not that I want her playing around in it or even going out in it. The windows in the ICN are really far back behind all of the counter and electrical stuff. So even if we can see it snow she wouldn't be able to see that far. I have asked one of the nurses and they told me that they do have portable oxygen tanks that I can take her to another window in the ICN that she could see the snow. Though this would only be if she were having a good day since she would be off her monitors for a minute. On that note also I am planning on packing a small bag for the car should it unexpectedly snow more then is safe for us to get home in. I don't want to be stuck at home during a Nor'easter (a really large snow storm, like the one when I got married for those of you that were there. That was a Nor'easter in the truest sense of the word). I would rather be at the hospital in that case.

My goal for the remainder of the time that Emily is in the hospital is make it feel as much like home as possible, for her and for us. I don't know what more I can do but if I think of something I will do it.

That is all I have for now.

Jennifer

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