Saturday, May 31, 2008

New Developments

What a weekend we've had so far and we're only to Saturday night. I've got so much I want to write, that I've got to detail each thing separately or I will end up rambling.

Heart
Elaina had her unsedated echo on Friday. From a cardiac standpoint her heart looks okay. One of the atrial chambers is shunting a little more than before and she has a valve that is a little more leaky than on her last complete echo. They are planning on starting a blood pressure medication to control this. We are waiting for lab results to verify her electrolites before starting this new medication. Her cardiologist is comfortable at this point to schedule her sedated echo and her cardiac catheritization in 6 weeks, with surgery for a Bi-Directional Glenn to follow 2 weeks later. So, we're looking at the beginning of August. Better than had been anticipated up until now.

Blood Work
Like a lot of other "heart babies", Elaina is a hard stick when it comes time to draw blood. In fact, none of the phlebotomists will even touch her at this point. The IV team is extremely reluctant, but will give it a half-hearted try, they usually give up after 1 or 2 tries. Last night, the Hospitalist came and tried to do an arterial blood draw, but was only able to get 1 small vial after 2 pokes. SO, this morning the doctors talked to me about getting a picc line. I debated, but finally agreed. We need to know what is causing her illness to be able to treat it properly, and lab work is one essential way to do this. Up until this morning 90% of her blood samples have clotted before they even get to the lab. The other 10% have either been negative or have been considered contaminated. In fact, one of the cultures from yesterday grew out as "Gram + cocci in clusters". The fact that it is in clusters makes them think that the sample was contaminated by something on her skin. So, they took her down to Radiology for the picc line, and the Radiologist was unable to get it in. So, back to square one with the blood work. Tonight, someone got the bright idea to try getting blood from her scalp. Not only were they successful in drawing the needed amount of blood, they were able to put an IV in the spot. Good thing too, they started her on Vancomycin just in case the Gram + cocci are legitimate. We should know more by Monday. The doctors are also toying with the idea that she may have some type of blood disorder that is causing so much clotting. Ugh.

Respiratory
Elaina still has an increased oxygen need. In fact it's increasing as time goes on. This is very puzzling since all her respiratory virus panels are coming back negative. She is still on the blended oxygen. Thursday she was on 1 1/2 liter flow with a 30% oxygen blend. Friday she was up to a 45% blend and today she is up to 60%, but her oxygen saturations are still low. She keeps hovering between 72 and 77. One of the Respiratory Therapists (RT) actually wanted to transfer her to the PICU so that she could be monitored on a High Flow Nasal cannula or C-Pap. Luckily her new team of doctors didn't feel that this would be in Elaina's best interest, so for now she just stays put. They are going to perform a "sweat test" to see if she might possibly have Cystic Fibrosis. It's a shot in the dark, but they are looking for some reason to explain all the mucus and secretions that just don't go away or get better. In the meantime, they are doing CPT respiratory therapy. This is where the RT uses vibration or thumping on the chest to loosen the mucus before suction. They are also giving her Xopenex first to open the airways and help thin out the secretions. They are doing this every 6 hours. Her saturations went up to 82 for about an hour after her first session, so hopefully this will help as well. The RT is with her right now, so I snuck away out of the room to write this update!

Well, that's all I can think of for now. She's been pretty zonked today since they gave her Versed when they tried to put in her picc line. I'm gonna go snuggle her for a bit before I go to bed. I'll try to update more tomorrow or Monday when I have more detailed information!

Thursday, May 29, 2008

Nothing new

Nothing really new to report. We sat around waiting all afternoon for the call to go down for the echocardiogram. They were backed up and over booked, so at 5:30 I found out that it has been rescheduled for 1st thing Friday morning. Since I have to work, I won't be able to be there holding her hand. I'm sure she'll be brave though and and will do just fine. They are still planning on no sedations since she's bouncing up and down with the fever. They drew lab work on the 27th for new cultures, but so far nothing has grown. I'm not surprised. It's the same mystery illness that she had last time. This time I think I just acted on it sooner and we didn't have to go through the trauma of aspirating, not breathing and being Life Flighted in the wonderful helicopter at 2am! She had to have a calcium bolus today because her ionized calcium was low. This was the 2nd day in a row. They will check it again tomorrow. This is one of the lifelong issues we will have with her DiGeorge Syndrome. She's already on Calcitriol (Vit D supplement) and Calcium Carbonate (4 times a day), but her level was still low. Go figure. If it dips too low, she's at a greater risk for seizures. Anyway, her temp today stayed at between 38 and 38.5 not super high, but still a fever. She was super sweet and cuddly today. I couldn't stop myself from kissing her chunky little cheeks. She's lost her smile, but she did attempt to give me a couple kisses back. So cute, she just sticks out her tongue when I'm kissing her, but I can tell from her eyes that she's loving me back. (I'm the Mom, I'm entitled to my delusions!) I felt so bad for her when the nurse came in to suction her nose. Her saturations had been kind of low (70-72) for over 30 minutes, even after increasing her oxygen. The nurse decided it was time to clean out the nose to help her out. Poor Elaina saw the suction hose and spit out her pacifier and started crying. It just broke my heart. As soon as the nurse was finished I picked her up for some snuggles and she was soon asleep with her saturations back up to her beautiful 82. Lesson: Nasal suction is not fun, but is sometimes necessary. And you get cuddles from Mom when it's over. :)

Quick Update

I work in the mornings, so I can't get to the hospital to be with my sweet girl until this afternoon. I called the nurse this morning to check on Elaina. She still has a slight fever, so the echo will be unsedated. Phew! There is still confusion as to what is causing her fever. They were finally able to get all the wax out of her ears. By the way, they do this by putting Colase (a stool softener!) and a cotton ball into the ear canal. It dissolves the wax and the remnants stick to the cotton ball. Then they irrigate the ear canal with water and scrape out what's left behind. Anyway, once her ears were all cleaned out, they don't think it's an ear infection after all. There just wasn't any obvious inflamation. They think the redness they saw yesterday was just the wax and irritation from their efforts to clean her ears out. So we're back to square one with the fever. For all we know at this point it's just a random virus that they are not able to test for. No antibiotics, they don't want to create antibiotic resistance..... I will know more after I get up there today, and will try to post when I get home tonight.

Wednesday, May 28, 2008

Frustrations abound

No echocardiogram today. I walked down with Elaina for her echo this afternoon. The plan was to give her a sedated echo. This way her heart wouldn't be working so fast as she wiggled and squirmed away from the cold ultrasound gel. Once we got there, a big debate ensued about the proper way to sedate her since she was not "drug naive". Since there was no counter agent for most of the sedating medications and they were worried about her being naughty and deciding not to breathe, it was decided to give her versed. They started to prep her; blood pressure, temp, etc. and she had a temperature, 39.0 celcius (borderline 104f). No sedation with a fever, so we went back to our room.

Small detour. One we got back upstairs to the room, our nurse was confused about her temp, so she took it again. The first time was in her ear. Michelle (the nurse) didn't think that was very accurate in a small baby. The 2nd time was under her arm, this is how they've been taking it since we were admitted. It was 36.5 celcius. That's a titch below normal. Very confusing, so it's discussed by all the nurses and a doctor or two, and they finally decided to take a rectal reading. It's 38.0c, about 101f. Since rectal is the most accurate, they decided to go with that, so it's officially a fever. The doctor wrote orders that from now on all temps are to be taken rectally. Who knew that taking a temperature could be so involved!

They have scheduled a new echo for tomorrow, maybe sedated, maybe not. It will all depend on her temperature. There is a slight chance that if they do decide on a sedated echo that it will be done in the PICU in case she has problems with the sedation. I'm hoping that they will just do it without sedation. On a side note, Dr Pulver said that he doesn't think that going to the cath lab would benefit her at this point and thinks it will be fine to just have it done before surgery in July. Surgery is tentatively scheduled for some time in August. He thinks that the cath can be done on an outpatient visit, and she can probably go home the same day. Hooray for that! Her only other cardiac cath took place in the NICU when she was only 6 days old and was only 4lbs 9 oz., so I really didn't know what to expect.

OH! So get this, they are cleaning her ears out tonight because there is a lot of wax and they think that this fever just might be an indicator of, are you ready??, an ear infection. At this point, I would like to ask you to please refer to my post on Friday May 16th "Going to the Doctor". Did I or did I not say that I thought she might have an ear infection??????? Hmmmmm. Do they ever listen to Mom?? I think I will pull out my hair in frustration if this is what has been the underlying issue the entire time. We have been there for 12.5 days. Now they are wondering if she might have an ear infection. I'm so exhausted from all the driving, being away from Ben, not to mention the expense of gas for my 120 mile round trip every day!! My stress level is through the roof! If all of this nonsense could have been avoided with a simple prescription of Amoxicillin, I will just .........grrrrr. Okay, so maybe I'll just give a sigh of relief. After all, she is immune compromised (DiGeorge Syndrome) and has a severe heart defect. I would rather have them over react than under react (like last week with the Resident that shall not be named). Besides, being admitted did give me the opportunity to discuss and evaluate alternate feeding methods. Oh, she didn't throw up today! Yippee! One day down and a million (I hope) more to go. Fingers are crossed and prayers are being offered that she might make it home before the weekend is out.

Tuesday, May 27, 2008

Preschool Graduation

Discovery Preschool Class of 2007-2008 Graduation took place tonight.

Ben announced that he is no longer a little boy. He has graduated, so now he is big. This is his preschool class. He's spent the last 2 years with this teacher and most of the students. It's going to be a difficult adjustment for him to not see them again.
He was so excited that he got to wear a "real" graduation hat. What a cutie. He wanted so desperately to be able to throw it in the air and shout "WooHoo!", but it was itchy under the chin so Teacher had them take the hats off early. They had a nice program and performed a bunch of the songs that they had been singing all year. This is Ben's friend Hailey. She was his dance partner for a couple of the songs. They had a whole wedding planned out earlier in the school year, but then decided that they were too young and had better wait until they were old enough. They thought 10 years old would be about the right time! How cute are they!?!



Okay, Elaina update time.



She's still just hanging out at the hospital. She's doing so well on the blended oxygen that she's not allowing them to wean her down. She starts to struggle once they go below 1 1/2 liters on the flow. Mixed with room air, she's only getting about 1/2 liter or a little less, but she really likes the flow. Our new resident talked with our Cardiologist today and they decided to have Elaina re-evaluated by Cardiology. The cardiology team looked at her the night she was admitted and didn't think that there was anything wrong from a heart standpoint at that time. Now they are wondering if her increased oxygen need might not be a respiratory problem after all, it could just possibly be her shunt not working properly because she's out growing it. They spent a couple of hours evaluating and looking at her this afternoon/evening and are going to do another echocardiogram on Wednesday. They are debating sending her to Cath lab a little early just to see how her shunt is working. She will have to go to Cath lab before her surgery, so they don't think that it will be a wasted trip. Still, I'm nervous. I think that any time they have to put your baby under anesthesia is worth getting nervous over..... I'll know more tomorrow, so I'll post again with updated information. There's no need to get worried before it's time!

Monday, May 26, 2008

Weekend overview...

Elaina has had a pretty rough weekend, she's not home yet. She's still having problems with throwing up. Because her feeds are going into her small intestine, there is nothing in her stomach but acid and saliva, so it's pretty yucky stuff that comes back up. I asked the doctors to adjust her reflux meds for her current weight, so hopefully that will make a difference soon. Also, I can't remember if I'd said how congested she's been. This is complicating things also. The resident didn't really take it seriously, but Elaina really seemed to be struggling on Saturday night. We had the most awesome nurse that night, her name was Wendy. She could tell that Elaina was having a hard time and so she called in a Respiratory Therapist (RT) to take a look. He said that she was moving air well through her lungs, but sounded congested in her upper airways, so he did a deep suction and a nasal wash. I felt so bad for her, because it didn't look pleasant, but there is not much else to do for a kiddo that can't blow their own nose. To those of you that are unfamiliar with this procedure, the RT takes a suction hose (like the dentist uses on the saliva in your mouth) and sticks it into the nose and sinus. Deep suction means that it goes all the way through the nose to the back of the throat. To understand how far that is, measure from your nostril to your ear. Ouch. Of course she cried the whole time, poor bug. At least it really seemed to help her out. The nurse had the RT come in a few more times through the night and suggested that it continue through the day Sunday. Sunday was hard too. She had a low grade fever, only 99 something, but it would come and go. She wasn't able to really get any sleep either. She would fall asleep for a 10-20 minutes and then wake up whimpering and crying. Her heart rate was in the 180's. Her baseline is usually in the 140-150 range, so to be around 187 all day was really high for her. Her respiratory rate was also very high again, up in the 70's and 80's. By mid-afternoon she was starting to look "dusky", she had a bluish tinge to her skin, it was darker around her eyes, nose and mouth. Her oxygen saturations still looked good, so to be blue in the face was kind of concerning. Our nurse paged the on-call resident to come and take a look. Elaina was sent for a chest x-ray and blood work was requested. I talked with the doctor and asked her if putting Elaina back on the "blender" might not be indicated at this point. After all, she responded very well to it last weekend when her heart and respiratory rates were elevated. She thought that was worth looking into and called for a consult with Respiratory. Luckily, the same RT that had suctioned Elaina the night before responded to the page. He said that it was a great idea, and he immediately set it up and then suctioned her out again. It was like a miracle for my sweet little girl. Within 30 minutes she was resting peacefully and her coloring had improved. Her chest x-ray looked okay, there were a couple of areas that looked cloudy, but I was told today that was probably just a little extra fluid in her lungs that will go away with the lasix they are currently giving her.

Oh, I need to go off on a tangent for a moment, but I promise it will lead back into current events. I have not
been very happy with one of the Resident "doctors" assigned to Elaina. This woman was lousy, I was not at all impressed with her. Her goal this last week has been to get us out of the hospital. Not to treat Elaina. She's the one that came up with the not so brilliant feeding plan that didn't work. She also kept insisting that "babies spit up", so why was I making such a big deal out of it? Grrrrrr. If Elaina was only spitting up, I wouldn't be making a big deal. It's only a big deal because she chokes and turns blue whenever it happens! Well, when she was doing her initial assessment of Elaina, she wrote down all of her medications and then input the information into the computer as orders so that the pharmacy could fill the medications as needed. Somehow, she missed the Prevacid. It was in the handwritten notes, just not in the computer. So for 5 days, Elaina didn't get her Prevacid. This is not good for a kiddo with acid reflux. Anyway, I caught it on Saturday when I was helping the nurse administer the medications through her NJ. I asked where the Prevacid was, and the nurse said "She's not on Prevacid..." Hmmmm, wonder why she's still throwing up stomach acid..... That's been fixed now, so hopefully Elaina will be able to control the acid reflux a little better. Also, this "doctor" wrote discharge orders for us on Saturday and ordered a suction machine for me to have at home. The idea behind this machine was so that I could suction out Elaina's mouth and nose if she threw up. I would just use it occasionally, for minor suctioning, because it's faster and more efficient than the bulb syringe. Well, when Elaina was having her problems Saturday night, this doctor said she was still planning on sending us home Sunday and that I (mom) could suction Elaina whenever she needed it. The nurse told her that RT was having to deep suction due to congestion, and this woman basically insisted, "That's okay, Mom will have a suction machine at home that she can use if needed." This really ticked off the nurse. Wendy told her that she didn't even feel comfortable doing the suction, she had called in a respiratory therapist to do it. Why did the doctor feel that Mom could do this? The final straw for me was after all this, I asked if Elaina could get some Tylenol and this doctor told me "NO" because she would really hate to mask a potential fever. Nevermind that Elaina cries every time she coughs. Nevermind that her throat is raw from the insertion of the NJ and refluxing stomach acid. She's just a baby, so her comfort didn't seem to matter. At this point I asked to talk to the Attending Physician and told him that I didn't want this resident working with Elaina any longer. I really gave him an earful! He said that he would make the change for me and he did by the middle of the day Sunday. What a relief. This is why we got the on-call resident Sunday night. I loved her, she was actually Elaina's resident after her RSV and she was doing her rotation in Neurology when Elaina had her seizures, so she was VERY familiar with Elaina and her history. It was her last night in this rotation, but she said that she would recommend an awesome resident to start on Monday.
So now we're to Monday (told ya the tangent would lead somewhere!). We did get a really good resident assigned to us now. She was on the "team" last week, and didn't agree with how aggressively the other resident was trying to get us home. She told me this afternoon that she had taken the time to read through all of the notes from Elaina's last 3 hospitalizations and that she wasn't even going to talk to me about Elaina going home at this point. She said that she just wants to take it one day at a time and let Elaina set the pace. She also wrote an order for Tylenol as needed. What an answer to prayers. Finally, a resident that cares about the patient and is willing to treat her as an individual, not according to the textbook. Elaina is still on the blender for oxygen. They are weaning her very slowly, 1/2 liter every 6 hours. If she struggles with this and her heart and respiratory rate go up, they will bump her back up. She did very well with the first wean this afternoon. I was holding her and she seemed to sleep very peacefully the entire time. She is throwing up less, which is a good sign that the Prevacid is working again. (It takes a minimum of 3 days for it to start working, and since it was stopped for 5 days we had to start all over again with it.) I'm praying desperately that she will continue to improve. She really looked a lot better to me today than she did over the weekend. Her little body is working so hard to stay alive and to grow. She is getting close to her next surgery, we only have a about 1 1/2 lbs to gain until she can have the procedure done. I was told after her last surgery that she would really struggle in the weeks leading up to the surgery, so I guess that's where we are now. Elaina is supposed to see her cardiologist on Thursday. If she's still in the hospital they will arrange for him to see here there. I will know more about it later this week. What an exhausting weekend it's been. Ben is super glad to have me home tonight. It's really hard on him when I spend so much time at the hospital. I know that Ben needs me, but I feel really torn. Elaina needs me to speak for her and to hold her. If I'm not there, then who knows what will go wrong! Ugh. Somehow I will muddle through and come out stronger on the other end! :)

Friday, May 23, 2008

Still at the hospital

Elaina had a good night last night. The Attending Physician said that she looks better than she has all week. He feels that making the change to the NJ was the right choice for her. That said, they are changing her formula a little bit. She's always been on a higher calorie formula, I've had to fortify it to 24 calories. In talking with the dietitians it's been decided to increase her caloric intake to 27 calories. This will make the formula thicker and also increase the fat % to help her gain the weight she needs to gain before her upcoming surgery. Because of this change and the new NJ, the doctors want to keep her for observation for at least one more night. I'm okay with this, I want to make sure that she is stable before I bring her home! So I'm off to the hospital now to spend the remainder of the day and spend the night with my cute little Elaina-bug. ugh, I miss her......

By the way, Ben got to go see the real Thomas the Tank Engine today. My Aunt Kathryn and Uncle Don took him. Thomas is spending the weekend at Heber Valley Railroad, so I got tickets for them all to take a ride. Ben is in Thomas heaven! This is Ben's 3rd year attending the event, and I think he gets more excited each time he gets to go. I made Don promise to take lots of pictures, so I'll try to get some of them posted later this weekend.

Thursday, May 22, 2008

The Feeding Solution

The feeding plan didn't work out very well. Elaina was still having episodes of severe vomiting. The Resident Doctor that came up with the feeding plan didn't think it was that big of a deal. It was, after all, her brilliant plan. I don't think that she truly appreciated what this vomiting meant to Elaina. It wasn't just spitting up. Elaina would choke on whatever came up and it would block her airway not only in her throat but her nose. She would turn purple. She actually burst blood vessels on her nose and under her eyes. If someone wasn't right there next to her, she would stop breathing. This isn't something to be treated lightly. She's already had two very unpleasant trips with LifeFlight. We don't need to have a 3rd. When Elaina was on the continuous feed Wednesday night, she had 3 times where she threw up. The nurse was right with her and was able to turn her over to help her get it out and then suction her nose and mouth so that she could breathe. Today, the Resident Doctor (who was SO pleased with her plan) decided that it was okay that this had happened, no big deal. Babies "spit up". Elaina could go home with the continuous feed at night and if she had a problem, Mom could be right there. Besides, she has a monitor at home that will sound alarms if her heart rate goes down. OK - whatever!! Needless to say, I didn't like that idea. So I refused to take her home. I insisted on talking to the Attending Physician. Now, this doctor was MUCH better at grasping the situation. He talked to me about other options, and told me that he felt Elaina would probably do best on a continuous feeding schedule through an NJ tube. This is the tube that goes into her small intestine. This way there is nothing in her stomach to throw up! We talked about the pros and cons of the NJ as well as the pros and cons of sending her home as is on the NG, and decided that the NJ was the best solution at this point. Right now, Elaina's job is to grow big enough to have the strength to get through her upcoming surgery. She gets so tired when she eats that she's making herself weak. She breathes harder and her heart rate goes up. That combined with the loss of calories and fluid from vomiting (which can lead to dehydration) makes the NJ the most logical choice. The tube has to be inserted by a Radiologist under an X-Ray. She had it done this evening, and came back to the room slightly traumatized, but no worse than when we've had to change her NG to the other side of her nose. Once the feeds were started she went right to sleep. Her breathing rate went down, her heart rate went down, and she stopped her squirming. She'll still get her reflux medicines, this will keep her stomach acids under control. Since she's no longer eating by mouth, she will have to re-learn how to swallow once she has her next surgery. Like I said, I had to weigh the pros and cons. If everything goes well tonight, Elaina should be home by Friday afternoon. It's one more thing to have her tied to, but not having to worry about her choking to death is worth it!

Tuesday, May 20, 2008

New Feeding Plan

Can you tell that I finally got myself a digital camera? I'm loving it. I actually took this little video clip on Monday. I thought her cry was so cute. She was letting me know that she wanted to be held, but I was able to distract her with her little bear for a few seconds. Don't worry though, I held her as soon as I was done with the camera!!!

video

OK. The doctors have come up with a new feeding plan for Elaina. They are going to give her 60 cc's (2 oz) every 3 hours during the day. The schedule is 7, 10, 1, 4 and 7. They are going to let her eat from the bottle "recreationally", meaning as much as she wants and when she stops showing interest, the bottle goes away. The remainder will be put through her NG tube by a pump at a very slow rate, 1 cc every 2 minutes. Then from 9pm until 6 am, Elaina will be put on a continuous feed getting 30 cc's per hour (again the rate is 1 cc every 2 minutes). The idea behind this is to let her rest while she's getting her nutrition and growing. I've been told that when a baby eats, it's like their body is running a marathon. Well, when a baby with 1/2 a heart "runs a marathon" the outcome probably isn't that great. The doctors think this is why she's throwing up. She's just exhausted. So if this is what we need to do in order for her to grow enough for her next surgery, so be it. The plan is for her to come home on Thursday. One of the Resident Doctors wanted her to come home today, but I didn't think that was such a good idea. I think that this new feeding plan needs to be tried out for a couple of days to make sure that it really is going to work well for her before she gets sent home. Now don't get me wrong, I want Elaina to come home as soon as possible. I just don't want her to end up back in the hospital any sooner than is necessary (like surgery this summer). I'd rather have her spend a couple of extra days in the hospital getting everything right, than come home and have the same or worse problems. I also asked the Resident Doctor to call Elaina's pediatrician to make sure that he is in agreement with the feeding plan. I know from my previous conversations with him that he wasn't too keen on the idea of having Elaina on a continuous feed through an NG tube. He was worried about her throwing up at night and me not being aware. He told me that he would be more comfortable with an NJ for continuous feeds. (An NJ is a tube that goes down the nose and through the stomach and then into the intestine). The Resident said that she would call my pediatrician on Wednesday and let him know how Elaina's first night went. I hope that they can come to a good agreement. Getting this right is such an important thing for this kiddo!

Elaina sure was cute and snuggly today. It is so hard to leave her and come home. Of course, Ben is worth coming home to. He's being so cute. Taking the training wheels off his bike yesterday really grew him up. He's decided that he's a big boy now and so he can do a lot of other grown up things too. He was so fun tonight. We went for an ice cream cone when I picked him up and he wanted to open all the doors for me and get the napkins, etc. He kept telling me that he's grown up now, so he can do it all by himself. What a funny kid. At least he's behaving better at the moment. I'll take good manners and obedience from that kid any time he wants to give it to me!

Monday, May 19, 2008

Mr Daredevil

Today the training wheels came off Ben's bike. He hasn't needed them for months. He's been zooming around the cul-de- sac like a madman. He actually called them his "parking wheels" and it wasn't until he found out that he could trade in the training wheels for a kick-stand, that he was willing to take the step.
He has no fear. In fact, he just about gave me a heart attack!! video

Chillin' at the Hospital

We spent our day just hanging out at the hospital. This is Elaina just kicking back with Mom in the recliner.Now she's loving her new Teddy Bear friend. This bear will travel home with Ben on Wednesday. It's currently getting her "magic loves" in it, so that he doesn't miss her so much. There is another bear at home that will take it's place. That bear is getting full of his "magic loves" and they will be making the swap on Wednesday.

She had a little accident, and needed to have a bath. She really liked looking at her nurse. I think she wanted to pull her hair or take off her glasses....

She's just zoning here, looking up at her mobile and listening to the music. She really loves to watch it turn in circles.
I'm not really sure what she's looking at in this picture. She was just content to lay in the crib and let me take pictures of her.
So that was most of our day. She had a throw up session that scared the nurse this morning, so I think that they're ready to take me seriously when I tell them that I get freaked out at the way she throws up. They took her for an Upper GI and told me that she for sure has Reflux. So now we need to figure out how to feed her without aggravating it. It's still going slow, 74 cc's over a 2 hour period. She's off the blender and just on oxygen. She's between 1/4 and 1/2 liter, so we're getting close to our base use at home. I still have no idea when she'll be coming home. Most likely this weekend. My fingers are crossed!

Sunday, May 18, 2008

More tests and a good idea

We got some test results back today. One of the cultures started to grow a staph bacteria. It has the doctors a little baffled, because it is a strain that is normally only found on skin. They drew some more blood and are going to culture it again. They are thinking that she might have had the staph on her skin and it just tagged along when they poked her for the first blood draw. She's on an antibiotic already, and she seems to be responding to it, but it's not one that would work on a staph infection. So there is some confusion. I'm hoping to have a better answer tomorrow. On the positive side, I think we're making steps in the right direction with her feedings. One of the docs had a brainstorm that maybe Elaina is lactose intolerant. Makes sense to me. All the spitting up nonsense started when I switched her to formula since I wasn't able to give her breast milk any longer. She's on a preemie formula, so there really isn't a milder one to switch her to. They are starting tonight to give her "lactulose" which should help her digest the milk better. She's been on continuous feedings since last night, and they're trying to shorten the time now. She's starting with 2 hours on the feeding pump and 1 hour off and trying to work her down to a 30 minute feeding time. This will be done over a several days. She is able to take some milk with the bottle, we started today with just half an ounce and then the rest through the feeding tube. We want to make sure that she can keep everything down before we give her larger amounts at once by mouth. The doctors are also trying to wean her oxygen down. Because she's on the blender, she's also on a higher oxygen flow. She's on 1 1/2 liters of oxygen right now. The goal is to get her back to the baseline she had at home of 1/8 to 1/4 liter of oxygen. At this point I'm being told to expect her to be in the hospital for at least a week so that when she does come home, she'll be in a good pattern and able to stay home. Elaina is such a little trooper. She puts up with the nurses and even flirts a bit now and then. She lets them know when the blood pressure cuff is too tight and she tells them off when they try to take her precious blood (she doesn't like to share!), but otherwise she is content and doing well. I think that she's glad that this trip hasn't included a ventilator or any major sedations! She sure does love to be held and rocked though. I had to come home tonight so that I could spend some time with Ben and get ready for work on Monday, so the Charge Nurse scheduled a nursing tech that can stay with Elaina tonight. This way Elaina can be held and rocked and I don't have to be so worried about her being all alone at the hospital. She's improving day by day and I am truly blessed to have this precious little one in my life!

Saturday, May 17, 2008

Good News

Huge sigh of relief, it is NOT her heart. Cardiology came in last night and did an echocardiogram and and EKG and they said that her heart looks great. I am so glad. It's always a worry in the back of my mind..... They got back the results of her Viral Respiratory Panel and everything was negative, so no RSV, influenza, etc. We're still waiting on cultures to grow, but so far it's all coming back negative. She was started on an antibiotic just to be on the safe side. Maybe it's just a little cold after all! They have been able to control her respiratory rate by putting her on what's called a "blender". If I understand it correctly, this pulls in the room air as well as her oxygen and forces it in at a higher rate. Her resp rate was back to normal this morning at approx 30 breaths a minute. They've stopped her feeds for the moment until we can determine what's going on and they have her on IV. Her potassium levels were elevated last night, so they just adjusted her IV fluids to compensate. The doctors and nurses were in doing her work up until 2am, so I am exhausted this morning. I will update as I know more information!

Friday, May 16, 2008

Here we go again...

So, we're back at Primary Children's. I took Elaina to see her pediatrician today and there was some cause for concern. Her respiratory rate is extremely high, she's breathing 90+ breaths per minute. She should be in the 30-40 range. In addition to the fever she's had since last night, she's also been having periods of being really sweaty. This is one of the warning signs of congestive heart failure, so to be on the safe side we were admitted to Primary Children's for testing and observation. Luckily this time she got to ride in the back seat of my car, no helicopter today! We've been admitted into the Children's Unit and hope to stay there for the duration of this visit. If she gets worse they might have to put her back in the Pediatric ICU, but I'm hoping that they can stabilize her and keep her where she is now.
I snuck out to write this while they were attempting to draw her blood and do a couple other tests. I probably won't have any of the results until some time tomorrow. I will keep posting!

Going to the doctor

Elaina has had a low grade fever since last night, so we're off to the doctor. Her home nurse was here yesterday afternoon, and her temp was good and she said that her lungs sounded clear. (She weighs 10 lbs now!! - yay!!) Sweet baby looks like she doesn't feel good though. Her eyes are red and weepy and she is coughing and sneezing. Elaina still has some upper respiratory congestion (sinus, etc.) so I'm hoping it's not something that will send her back up to Primary Children's. Yesterday she was pulling at her face. She keeps trying to pull her oxygen out of her nose, not to mention her NG tube. I'm almost wondering if she doesn't have an ear infection. Maybe it will just be a normal baby thing instead of something major this time. On a good note, her feedings have been raised to 82 cc's (that's almost 3 oz) every 3 hours. She is still having problems keeping it down, so I'm going to be talking to the doctor about that today while I'm there. Wish us luck! I'll post again later once I know what's up!

Monday, May 12, 2008

Mother's Day

Mother's Day was a great day. Ben and Elaina were just precious. I am posting this one day late, it has been a hectic couple of days. I think that this poem says it all, and says it better than I could.

Before I was a Mom -

I never tripped over toys or remembered words to a lullaby.

I didn't worry whether or not my plants were poisonous.

I never thought about immunizations.

Before I was a Mom -

I had never been puked on.

Pooped on.

Chewed on.

Peed on.

I had complete control of my mind and my thoughts.

I slept all night.

Before I was a Mom -

I never held down a screaming child so doctors could do tests.

Or give shots.

I never looked into teary eyes and cried.

I never got gloriously happy over a simple grin.

I never sat up late hours at night watching a baby sleep.

Before I was a Mom -

I never held a sleeping baby just because I didn't want to put her down.

I never felt my heart break into a million pieces when I couldn't stop the hurt.

I never knew that something so small could affect my life so much.

I never knew that I could love someone so much.

I never knew how much I would love being a Mom.

Before I was a Mom -

I didn't know the feeling of having my heart outside my body.

I didn't know how special it could feel to feed a hungry baby.

I didn't know that bond between a mother and her child.

I didn't know that something so small could make me feel so important and happy.

Before I was a Mom -

I had never gotten up in the middle of the night every 10 minutes to make sure all was okay.

I had never known the warmth, the joy, the love, the heartache,

the wonderment or the satisfaction of being a Mom.

I didn't know I was capable of feeling so much, before I was a Mom.

Wednesday, May 07, 2008

Give me patience

Today was just one of those days. You know the kind. Everything just seems to go wrong. I was a grouch. Ben was being a little stinker today! He didn't have pre-school and was cooped up inside because it was raining. Sometimes I could swear that boy is just being naughty for lack of anything better to do. He followed me around the house being my "helper" by un-doing all the work I did. By bedtime the family room was a bigger mess than it was when the day started. Then when I get angry with him, he looks up at me with his great big brown eyes and tells me that he's sorry and he loves me and I lose all my steam. It's really hard to stay mad at such a cutie. (He still lost privileges for tomorrow though, I'm not that much of a softy!)

Anyway, enough complaining. Elaina had a pretty good day. I changed bottles yesterday to the Playtex nurser drop ins. I'm hoping that she'll get less air with these. I've tried a few other bottles that are supposed to help reduce colic and air, and all of them cause the formula to foam when she's eating. I don't see how her ingesting the foam is going to help with gas.... So far she seems to be doing okay with the new bottle. The nipples are a little different, so there is an adjustment that she needs to make, but all in all she seems to be eating more of the bottle than she was before. She's still spitting up the same amount though. I talked with her doctors office today about feedings. She's getting 67 cc's (30 cc is 1 oz) of fortified high calorie formula at each feeding. She's on such a small amount because of fluid restrictions with her heart. Since we want her to grow and have sufficient hydration, she is being fed every 3 hours, even at night. (No sleep for Mom!) We were thinking about putting her on a continuous feed through her NG tube at night. When I try to feed her in the middle of the night she just doesn't want to wake up and take the bottle. She'll nibble 10-20 cc's and then she's done and I'm putting the rest through her tube. I've ended up not even trying to wake her for her 3 am feed and just putting it all through the NG. Well, with all her reflux and spitting up, it's probably not a good idea to do the continuous feed, so I was advised to give her 77 cc's during the day and just let her have the longer period of sleep at night. This way I can get a little sleep too, but she's not missing out on essential nutrition! So tonight I start. I'm on my way to fix her last feeding and then get a few precious hours of sleep before I start all over again at 6am. I'm praying that a little extra sleep will also give me a lot of extra patience with Ben tomorrow.

Tuesday, May 06, 2008

Spring is in the air

I want to go outside and soak in the sun and fresh air. However, the best I can do at this moment is open my windows and hope that the fresh air finds it's way in. Since Elaina can't go outside, I'm stuck inside with her. (Stuck in a good way, I'm so glad that she's home and not in the hospital!) She's been getting a little sweaty the past couple of days. I'm hoping that it's just because it's warmer inside the house. She doesn't have the best circulation, so her fingers and toes have a tendency to stay cold no matter what I do. Our pediatrician, Dr Later has advised me to keep her inside for several more weeks. He told me that he doesn't even want to discuss it until our June visit. So, in the interim, I only get to go outside to throw away the garbage or check the mail. Oh yeah, or if we have a doctors appointment. Ben played in the back yard sprinklers this afternoon. He had a blast. Maybe I'll be able to take Elaina out to play with him soon. I hope so. It was a long cold winter and I'm ready for spring.

Monday, May 05, 2008

Look for the Silver Lining

What a weekend we had at my house. Friday we had a visit from Elaina's Home Health nurse. This was her first visit since Elaina's last hospitalization, so a lot had changed. The newest addition was Elaina's NG tube. I mentioned in a previous post that the nurses at the hospital taught me how to place the tube down Elaina's nose and thread it to her stomach. Just so you know, this is NOT a fun thing to do to your baby. It makes her cry. It makes her cry a lot. The nurse in the hospital literally held my hand and helped me guide the tube into place. It was very emotionally draining, I think I shed almost as many tears as Elaina did. I told myself that I could do this, that Elaina was depending on me, and besides, I have a nurse coming once a week for home vists. Just knowing that I had this back up really lulled me into a false sense of complacency. The nurse came, she checked all Elaina's vitals. We stripped her to a dry diaper to weigh her (9 lbs 3.5 oz!! YAY), and then down to NG business. Well, I didn't get off as easily as I'd planned when it came time to change the tube. The nurse told me that it was VERY important for me to do it. By myself. "What if she pulled it out in the middle of the night? What if the tube traveled out of her stomach and needed to be pulled and replaced?" Okay, okay. I can do this! I tried 3 times to put the tube down her nose. She coughed, she sputtered, she gagged, she turned red and purple, and she CRIED!!! Worst of all she looked at me as if to say "Mother, how dare you do this to me. In my own crib! You traitor, you've betrayed me!" Okay, so maybe I'm reading a lot into the look, but it broke my heart. After the 3rd try, I gave up. I told the nurse that I would continue to "practice" each week that it needs to be changed, but I could not keep inflicting this torture on my baby. The nurse got the tube in on the first try. Figures. Poor Elaina. After the nurse left, I ran to get her some warm pajamas and a bottle. When I went back into the room she was just laying in her crib, a catatonic look on her face staring at the ceiling. Oh the injustice of it all! It was an exhausting experience for the poor baby. I'm sure that she thought all this nonsense was behind her when she left the hospital. After I fed her a bottle and gave her some much needed TLC, I went to the kitchen to make Ben an ice cream cone. I bribed him with this reward so that he would stay in the family room while the nurse and I tormented the baby. It worked. He'll do just about anything for an ice cream cone. I got out the carton of ice cream and it was all melted. Huh?? Did Ben leave the door open when he made his waffles this morning? Must have, the milk is still cold. Dinner time came. The milk was no longer cold. My fridge was going out. SO, I had to call my landlord and let them know what was going on. You can just imagine how quickly they responded to my 9pm plea for help. I got nothing. I called again Saturday morning and this time I got a call back. It probably helped that I mentioned that I have a baby with a heart problem and medication that requires refrigeration, because by Saturday afternoon I had a brand spankin new fridge in my kitchen. I mean, brand new in the box from Home Depot! With all the bells and whistles. Crushed ice and filtered water in the door! Woo Hoo! I know it's probably silly, but it was the silver lining to my weekend!

Thursday, May 01, 2008

Proud Mama











So, I'm not quite in the digital age yet. My next investment is going to be in a good digital camera. In the meantime, I'm using disposable cameras and waiting until the camera is used up before getting the film developed. Good thing most places that develop film now cater to those of us that are digitally challenged. I was able to have my film developed, get some nice prints as well as having them put onto a cd which I can then access from my computer. Since the current passion in my life is my children, you can guess what I took pictures of. Being such a proud mama, I'd like to share a few of my favorites. Ben loves to be in front of the camera, so it's nearly impossible to take a picture of Elaina without him in the picture as well. Ben is experiencing some sibling rivalry. Having been the center of attention for the majority of his life, this is a difficult adjustment for him. He is a good helper, but sometimes the help is on his terms. "sigh" It will just take time.... The two pictures of Elaina in her crib with Ben are the most recent. They were taken last Thursday, the night Elaina came home from the hospital. The other two are from before her last hospitalization. She's getting SO big, she finally weighs 9 lbs!! The current obstacle is getting rid of her mucus once and for all. She's still having times when she throws up and chokes. I haven't been able to figure out a pattern for this, so I'm not sure if one of her medications trigger it, or if it's related to how fast she eats or even the % of the feed that goes into the NG tube. It's still a mystery. She really panics when it happens though. I'm sure she has some bad memories!!!