Friday, August 31, 2007

Friday 4:04pm

I don't want to jinx anything by telling numbers, but Kathryn is doing a little better today. Keep praying!!


Friday, August 31 - Day 38

Forgive me for the post today, but I don't have a lot of time to write. I still wanted to write down everything that is happening though, so I am just going to give the bullet points.

Yesterday, Kathryn wasn't doing as well and her sats would drop when the nurses would mess with her - diaper change, blood work, chest xray, etc. At about 4 pm, I was at the hospital and she dropped and took a while to come back up so they moved her to 100% oxygen again. Since then, here's the basics:

-100% oxygen since yesterday at 4 pm
-vent settings have been turned up
-sats were staying in the 60's (sometimes lower and occasionally higher) from about 4 pm-7pm
-pavulon (the paralyzer) was started again around 7pm
-as the pavulon kicked in, sats were going into the 70's (still 100% O2 and higher vent settings)
-chest xray showed that one lung was mostly blocked and the other was open
-started vibration therapy to help her "break up" the congestion (she can't cough to get it going)
-started albuterol breathing treatments to help (maddie had this for asthma/rsv)
-started decodrone to help with some swelling issues
-took another blood culture and suction culture to test for another infection (orig infection worry from the other day has been negative so far, so this is just to see if one has creeped up)
-continued with chest xrays through the night to see lung progress
-turned her to her stomach around 10 pm and lifted the hood to her bed for xrays
-when they turned her and lifted the hood, her sats improved
-she stayed the rest of the night (and is still this way) on her tummy and with the hood open
-sats elevated to 80's and 90's through the early morning (12 am - 5 am)
-ventilator settings are still elevated and oxygen still at 100%

Greg and I stayed at the hospital and got some sleep from 12 or 1 am til about 5 am. We are both working till 12 and then going to the hospital. We're ok, just tired. We don't know what the next steps are. A lot of this is wait and watch to see how she reacts to different treatments. What a long road ahead. Please pray for wisdom, patience, love and understanding for the doctors and nurses. Dr. Dicarlo is on this morning and Dr. Mena this afternoon. We were with Dr. Strange last night and I think we finally had a good connection with one of the doctors. Our baby is their baby too and we know that they will do everything that they can, but it's so hard as a parent to sit back and watch.

As parents, we are supposed to fix things for our kids and right now we can't fix a darn thing and that really sucks!! We can pray though and so can you - for all of us.

Love, Kelly

Thursday, August 30, 2007

Thursday night 7:13

Please pray for us tonight. Kathryn is having a rough spell.

Thursday, August 30th 8:00am - Day 37

Tuesday night there were no big changes. On Wednesday Kathryn remained "stable" as well. Her chest xray on Wednesday was the best one she has ever had according to Dr. Strange. As of yesterday, the results on the bacteria cultures were still negative showing no infection yet. Her urine output was returning to her normal, blood work looked normal, oxygen saturation looked good, and her ventilator settings were down. I finally found out the name of the drug that kind of "paralyzed" her that she is on - it's Pavulon.

Well, they weened her from that yesterday, which is a good thing. However, she is now more alert and looking around and moving little tiny bits, so she gets "mad" when they mess with her to take xrays, blood work, weigh ins, etc. Her "mad" spells basically means that she drops her oxygen saturation levels and they then have to bump up her oxygen percentage and ventilator settings until she can get back to normal. Then they slowly bring her back down. Each time she has a spell like this they call it a BPD spell - which stands for bronchopulmonary dysplasia - which is basically chronic lung disorder - somewhat common for preemies this small. Anyway, they think she is having these partly from coming off of the Pavulon, so they may consider upping her fentinel (her sedation medication) so that she is not as alert when she is awake. Our nurse last night described it like she is groggy on that medication.

She is still retaining some fluid, so she is a little "puffy" right now. But Dr. Strange says this is because she isn't moving a lot, she's on medications that contribute to that, she is having some lung difficulties, etc. She says it is not a pretty side effect, but it is not a medical concern at this point. She also had a blood transfusion yesterday evening, so she received lasix before the transfusion and then again 12 hours afterwards.

I talked to Dr. Strange this morning and she said that Kathryn had a rougher morning. She is a real "touch me not" since early this morning. Every time they touch her - for care, labs, etc. - she drops her oxygen sats. She says that this is not a critical thing at this time, that she has seen this with many babies. That's the reason for considering the increase in her fentinel to help relax her some more. Still, it's scary to hear that she is having the spells. I asked if the things she is experiencing are recoverable things - meaning can she recover from them or are they definitely life threatening. She reassured me that she can recover from these things, but that they are still very serious. They can lead to situations that babies have a very difficult time recovering from.

All in all, she is stable today right now. They also weighed her last night for the first time since last Saturday. They said that the weight could be inaccurate because she is retaining some fluid and did just have a transfusion, but it showed that she went from 1 #, 10 oz to 1 #, 14 oz. If this stays accurate, then she would have gained an entire pound since birth in 5 weeks.

Anyway, please pray for Kathryn. She is definitely doing better, but she is still not on the other side of this and still has a lot of progress to make.


Tuesday, August 28, 2007

Tuesday 5:52 pm - Day 35

Greg and I went back to the hospital today at 10:00 am after shift change and stayed until 5:00 this afternoon. Basically with the exception of shift change last night from 6-8pm and shift change this morning from 6-10am, we have been there a full 24 hours. I can honestly say, we now know the beginnings of the NICU roller coaster. I am not sure whether to zip my shoes or lace up my pants, we are so tired!!

She did much better today SO FAR. Everything right now is day by day and sometimes hour by hour. She seems to be responding well to the steroids and stayed at a saturation level of 90 or above the majority of the day while only requiring oxygen levels of much less than 100%. She started to ween from the high oxygen levels this morning, first with 90% and went as low as 50% when we left at 5:00. She is still on the fentinal (I think) for pain and she is on the other medication that relaxes her to the point of no movement - I can't remember the name of it. From what we found out today, the steroids is going to be longer than what I expected. She will take doses of it every 6 hours for 7 days. Then they will ween the amount down and every 8 hours for 5 more days, ween the amount down again every 12 hours for 5 more days, and then ween it one last time once a day for 5 final days. (I THINK. - Don't quote me.) So, she is likely to be on the steroids for 22 days. Most of that time she will probably remain on both the fentinal and the other medication (name escapes me). The second medication basically "paralyzes" her temporarily so that she doesn't expend her oxygen.

While she is doing all of this, she will still continue her liquid nourishment - her hyperal and her lipids - and she will still continue her antibiotics too in order to fight infection should she have one. Remember, she is being checked for an infection right now that we should better know about by tomorrow of Thursday. As of now, the cultures have come back negative yesterday and today. They probably will wait a while to re-introduce the gut priming. Also, no news about any weight gain. With all of the occurrences the last few days, they have not been concerned with weighing her for right now.

She is still having good urine output. Chest xrays are still improving, but things are still day by day and hour by hour.

Greg and I plan to return to work tomorrow provided that things continue to be more positive. This is a really rough ride! Please pray for Kathryn.


Tuesday 6:11 am

Kathryn was stable last night and even improved a little. Her ventilator settings were up to 100% oxygen yesterday for most of the day and she wasn't responding. We got a call yesterday around 4:45 pm that the doctors needed to talk to us. Basically, with her oxygen at 100% and the vents breathing for her, she wasn't responding very well and her oxygen saturation was staying in the range of 45 - 70. I think that they were concerned that her lungs could be failing. They started her on steroids last night around 6 pm to help her recover from this and she will get them every 6 hours until she is better. She is also on a pain medication and a medication that relaxes her to a point that she does not move at all. This is so that she doesn't fidget and fight the ventilators and she can calm down enough to let them work for her until she is much more stable. Last night she stayed in the range of 90 for oxygen saturation which is much better and they were able to ween some of the jet ventilator settings. She is still up on her conventional ventilator settings and her oxygen is still at 100%. She is also finally having good urine output too.

We stayed at the hospital with her last night in the parenting room and will go back this morning at 10:00 when they open. The doctors don't know if there is an infection yet, the cultures for that will show best by Wednesday or Thursday. If there is one, this could have all been related, but there is no way to know. Chest xrays are improving, but still a little cloudy.

Dr. Dicarlo was not sure if she would recover from this when we got there last night. He told us that she may not make it through the night if they could not get her to respond to the vents, the oxygen, and the steroids. He seems to be pleased with the improvements she made last night, and we are certainly relieved, but she is not out of the woods yet. Greg and I will be at the hospital today and if she has a better day today, we will return to work tomorrow.

Please pray for Kathryn.


Monday, August 27, 2007


This was sent for us by a friend to our Sunday School class. I will try to explain more tomorrow or when I can. She is having breathing difficulties. She is listed as critical right now. She is getting steroids to help and should everything be ok, she will have a rough few days ahead. Jack is our pastor. Please pray "unceasingly." We will be at the hopsital tonight.

"Greg and Kelly Ellis's baby Kathryn, is in trouble, and may not live through the night. Kelly was too upset to speak, so we are not sure of details -- just that it is serious. Jack Hinnen has gone to the hospital to be with them. Please lift up this precious infant and her faithful parents to the Lord."

My first morning back at work

Well, it's Monday and my first morning back to work. I was doing ok about it until I drove over the hill on Hwy 31 and saw the hospital. It was like, "well, crap" and then I lost it. I said good morning to Kathryn and said a prayer for her and her doctors and nurses as I passed Brookwood.

Like I said, I am back to work. I am now working 7-4 until Kathryn comes home so that I have earlier afternoons with Madelyn and maybe an opportunity to go visit Kathryn before the NICU closes at 6pm for shift change. Then home for dinner, give Maddie a bath, back to the hospital at 8 for visitation and home to put a 3 1/2 year old to bed. Then maybe a few minutes for me before I head off to bed somewhere around 10 pm so that I can get up around 5 am to start over.

Kathryn had some troubles this weekend. On Friday she received another blood transfusion. She gets them every 3-4 days so this was a common thing for her. After the transfusion, she had an impressive weight gain of 2 ozs to 1 #, 10 oz on Friday night. Saturday morning they started her on lasics (I probably misspell this!!) to release some fluids - remember like a diuretic for her. When they noticed at 11:00 am on Saturday morning that she was elevated and her chest xray showed cloudy as if there was extra fluid. They started her on antibiotics Saturday in case of an infection and then gave her some saline to help increase the urine output. She did have some more urine output last night, but they are giving her another bout of lasics to help with even more urine output. All this sounds awfully scary to me, but they assure us that there are no excess worries today other than common worries for preemies and specifically for Kathryn. With the blood cultures, it is the same as last time, we get preliminary results each day, but the best indication of an infection would appear 48 - 72 hours after the initial blood work. So, we will know more about this on Wednesday. Please pray for no infection!!!!!

They also had started the gut priming again yesterday, but they decreased the frequency to 1/2 cc every 8 hours instead of every 6 hours. They are taking it slower this time.

I called to check on her just now. They are still continuing with the gut priming and she hasn't had much change since last night on her vent settings. She is on a type of pain medication to help her feel comfy right now with all of this going on and this seems to calm her a little.

Please pray for Kathryn over the next few days that she does not have an infection!!!

Oh and she did get her UAC out this weekend so we are now doing heel sticks every 12 hours for labs.

And please keep responding and letting us know who you are, where you are from, and how you know Kathryn. I want to put this in her baby book and show Kathryn one day how many people were praying for her.


Friday, August 24, 2007

Friday, August 24

No big changes today so far. We are still holding 1 1/2 pounds and still holding off on the gut priming. Dr. Mena mentioned that he may consider starting back with the priming tomorrow, but he is not sure yet.

I took one new picture specifically for my mom. She has commented each time she sees Kathryn at the hospital that she thinks her skin looks so dry. Kathryn doesn't get real "baths" unless you count the cotton balls soaked in Carakleanse that they use to wipe her down every few days. And with all the things that stick to her for monitoring, her skin looks like it's peeling sometimes. So, this picture is for you mom. In the top right of the picture, there is a bottle of lotion and a hairbrush that nurse Donna used on her for the first time today.

Oh by the way, I wanted to ask something of you if you are reading this blog. I thought it would be really neat one day to tell Kathryn how many people were praying for her to get big and strong. Would you mind to comment on this post and let us know who you are, where you are from, and how you know Kathryn (for example: family, friend of Greg and Kelly, friend of Grandad Ellis, friend of Pawpaw Gause, friend of Pops Daniel, etc, etc.) I just thought it would be really neat to let her know someday - I'll put it in her baby book!!

Thursday, August 23, 2007

Ladies and Gentlemen . . .

Today we hit 680 grams . . . . . 1 1/2 pounds!!!!!!!!!!!! What a monster sized baby!!! No other big changes. They did stop her feeding today because her belly was looking a little rounded and she couldn't expel gasses, but stoping and starting is to be expected!!

I can't believe she is at 1 1/2 pounds!!

Moving on up

Quick update - Kathryn had a good night last night. Nurse Heather said that she did very well with her "food" last night. They switched her to Similac Lacto Free instead of preemie formula and she handled it better!! She had less residual with that formula. She also gained weight to 650 grams which is 1#, 7oz (9 ozs in one month - pretty impressive when you consider that her only food so far had been HAL and lipids!!) We are so close to 1 1/2 pounds now!!

Wednesday, August 22, 2007

A few pictures from Kathryn's one month bday celebration

Here is a picture of our girls!! Maddie likes to sing to Kathryn through the port hole!!

Kathryn was wide awake tonight at our visit - like she knew that there was a milestone to celebrate!!

Happy Birthday to Kathryn!!!!!!!

Today Kathryn is 4 weeks old!!! We have lots of news to tell!!

Kathryn continues to do well. Her weigh in last night was 620 grams, which is 1#, 6 oz!!! As I said yesterday, her head ultrasound and her chest xray were normal!!! That felt wonderful to type!! Her chest xray showed that she should technically be on higher ventilator settings than what she is on. She is on 40 - 50% oxygen, but her xray showed that she should be on about 80%. Basically, what I take from that (and Dr. Strange confirmed this) is that she is doing better than she should be doing according to xrays!! (That's your prayers and ours at work!!) She has pretty much been on 35-50% oxygen since birth. Room air we breathe is 21% oxygen I think, so she isn't that much above room air. Dr. Strange says that she is on moderate ventilator settings. She really wishes that Kathryn could be lower, but she seems to require 40-50% lately. According to Dr. Strange, some babies start out on lower settings and then go up, so it is good that Kathryn has stayed steady, but we want to get her down!! No one can hold her (not the nurses and doctors or Greg and I) until she gets off that ventilator!! So, I asked how she gets off the ventilator. Dr. Strange said it's a combination of her growing and getting nutrition. That said, here is the next piece of BIG news.

They started "feeding" her formula through her tube. Actually, the amount that she is getting is so minor, that they don't call it feeding, instead it is called "gut priming." She basically gets 1/2 cc every 6 hours. In a 24 hour period, she gets 2 cc. To put it in perspective, a teaspoon is 5 cc, so Kathryn has 2/5 of a teaspoon per day. Huge nutrition for such a tiny girl; I think the rest of us would starve though!!! They check her residual to see how she is doing in "digesting" it. So far, she is doing well with it. They don't want to go too fast with feeding because with babies this small, the risk with feeding is called NEC. It is short for necrotizing enterocolitis, which is an intestinal infection unique to preemies. Basically, part of the intestine can be destroyed or perforated and it can cause serious issues in feeding. Because of the dangers of this, the doctors and nurses go very slow on feeding babies this little in hopes to avoid it. All this said, she does NOT have NEC at this point and hopefully she will not get it.

We also found out that her labs have moved up to every 12 hours, which is another great thing for her. If she can stay stable enough for them to continue with every 12 hour labs, she may eventually be able to get her UAC line out. That's the line that caused the purple toes, so getting it out would be another great step!!

Anyway, we've had a few great days with Kathryn and I certainly can't believe that she is already 4 weeks old!! 28 days in the NICU and counting. Please keep praying for Kathryn!! She is getting bigger and stronger by our prayers and Greg, Madelyn and I are able to face each new day smiling because of the peace we get from these prayers and the love and support we receive!!

Love to all!! Kelly

Tuesday, August 21, 2007

Normal results

Quick update - the results of the head ultrasound and chest xray were normal!!!!!

Tuesday morning - a few new photos

Good Tuesday morning! Today Kathryn is 28 weeks gestation!! Sunday and Monday were fairly uneventful with Kathryn which is good news. She had gone up in her weight gain and has gone back down to 590 grams (1 #, 4 oz - almost 1#, 5 oz) for the past two weigh ins. Still keeping her weight above one pound though which is excellent. She has also grown another little bit - but I was confused about her length. I kept noticing her growth thinking she was putting on inches - well, it was centimeters. Still though, she has grown from 11 inches at birth to 11 3/4 inches now. And her head circumference has increased by 2 cm too!! She had her head ultrasound yesterday and we should know results today late or sometime tomorrow. From what we understand, if we don't hear anything right away about it, then there was nothing blatently obvious so they wait for the actual results to confirm or deny this. She also had a chest x-ray this morning early and we should know more about those results sometime today or tomorrow. If you haven't been praying, it's never too late to pray for routine results!!!!!!!!!!!!
Here are a few new pictures from our house!! Maddie took this one. Not a fantastic picture of the new parents, but it shows off Maddie's photography skills.
Maddie at the park this past Sunday. She was learning the balance beam.

Here Maddie shows off her playground skills!!

New shot of Kathryn. See her toes on the right foot. At one point, half of that foot was dark like that. Now we are down to a few toes!!

Another eye shot!!! Kathryn looks at us occassionally when we visit!!

Dad and Madelyn goofing off at the NICU! We usually take her at night in her jammies since we go at 8:00 and get home around 9:00. Maddie has made friends with many of the nurses and they are all aware of her singing abilities.

Sunday, August 19, 2007

Sunday, August 19, 2007

Last night's weigh in showed 640 grams which is probably 1 #, 7 oz. She had a blood transfusion yesterday so they think it might be partially due to fluids. Because of that they have put her on the lacics again (diuretic) to see if that is why the big weight gain. She will probably drop some tonight, but all else is still the same.

Kathryn is having another head ultrasound tomorrow and a cardiac ultrasound too. They are just making sure that nothing has developed with the brain or heart. Kathryn has had several of these, so this is just routine. Please pray for routine results too!!


Friday, August 17, 2007

Some new surprises!!

We have so much to tell!!! Last night's weigh in (Thursday 08/16) showed Kathryn changing her weight from 550 grams (1#, 3 oz) to 610 grams (1#, 6 oz - almost 1#, 7 oz)!! We were thrilled!!!! Because that was a dramatic jump for her, the doctors put her on a mild diuretic today to make sure that she wasn't retaining fluid. She had a very good day and her toes are looking much better. Her left foot has little if any duskiness. Her right foot is much better than before. Her big toe and second toe are still very dark at the tip and the next two toes are a little bit dusky, but that's all. We still won't know how this affects her for several weeks or months, but it's much better than we expected.

After the diuretic today, Kathryn's weight tonight was 580 grams which is 1 #, 4 1/2 oz. Still an overall impressive weight gain for the two days!!!

Imagine our surprise when we got to the NICU tonight and this is what we saw:


Here's a closeup. She looks so peaceful!!!

And here's a view of her that no one had seen yet, us included. The back of her head!! (And she doesn't have a flat spot yet!!!)

We are headed to sleep for the night. It was so relaxing to see her snuggled up on her tummy. For the first time, she looked like a comfortable baby. I couldn't stop smiling at her!

Thursday, August 16, 2007

Just a short post

I'll write more in the morning, but today was uneventful which is good for Kathryn!! She added a few grams at last night's midnight weigh in but not enough to push her to the next ounce. Hopefully with a little weight gain tonight she will top over to the next ounce. Two toes are still fairly purple but look so much better than they did before!! We are very lucky today for another good day.


Wednesday, August 15, 2007

3 weeks old

Wow - today Kathryn is 3 weeks old and she was officially 27 weeks gestation yesterday. Her weigh in last night showed that we now have a 1 #, 3 oz Kathryn!!!!!!! That's the first new number in a while!! (And that's after a nickel size poop that I got to experience yesterday!!!)

Everything else is still the same. No big changes with Kathryn so that's good news. We did hear that as of yesterday, there is still no bacteria growth showing in her blood sample that they took last Saturday. It could still appear over the next several days, but it is not that likely and even if it does, there are two good things with that. If it appears as bacteria growth this far out from the original sample, the growth is very weak AND she will have already been on an antibiotic since Saturday so it doesn't stand a chance to grow further. No big changes with her toes, they still are dark, but it does not seem to have gone to her feet. And there is no further darkening which leads the doctors to believe that the new UAC line helped the situation to not grow further and that the darkening that is there now is left over from the first line. We just keep massaging those feet!! By the way, the new line is working well! They have also taken her off of one of her fluids (HAL - the one with Vitamins and Minerals) for 4 hours each day and they replace that 4 hours with glucose water. Supposedly, being on HAL for too much, too long can damage the liver, so pulling back on the HAL is a normal process that all NICU babies go through. So that's a good step - they must feel like she is ready for that!


Monday, August 13, 2007

UAC causing problems

OK - so a short post this evening. This afternoon has been very rocky. Her toes turned purplish very quickly this afternoon and even turned half of her right foot a purplish color. Maddie says it looks bruised and that is probably a good way to describe it, except to say that they look VERY bruised. Anyway, I got very worried this afternoon and shed some alligator tears. They did replace the UAC line this evening and they were successful in getting it back in and functioning. So now we wait to see how it affects her feet. At any rate, the new UAC line was necessary so there was no choice, but it's a relief that it went smoothly.

Greg, Madelyn and I are retiring for the day. We all need it.

Love, Kelly

A tough weekend

What a weekend. The honeymoon period is over I guess! Still no news about the possible infection. They should have some preliminary results back today on that and the best results are 72 hours from the initial test so we will have those tomorrow.

We called on Sunday morning after church to check on Kathryn and Dr. Mena said that he wanted to have a chance to talk with us when we came to visit that afternoon. I am sure that we will get accustomed to that, but it's not a great thing to hear over the phone!! Well, long and confusing story short, here is the news:

Kathryn has to have her UAC line. This is what the doctors and nurses use to draw her labs to check her every 6 hours. Without this line, they would be "driving blind" as to her care right now. However, having this line can cause poor circulation to her extremities, namely right now, her toes. They have a purplish hint to them, or as Dr. Mena calls it, a dusky appearance. She gets regular foot massages and warm compresses on her feet to help this. Removing the UAC line would most likely correct this, but they must have the line. In some babies like Kathryn, if this remains a problem, there is a risk that she could lose her toes. Wow, that was a tough one for us to stomach this weekend. I ran through every scary scenario I could think of. I cried thinking of my child not being able to walk because I thought surely you need toes to walk, right? Greg, my mom, and Dr. Mena all reassured me that this is not the case. I guess Greg and I are at peace with this. We both know that there is nothing that we can do other than trust in her doctors and pray for them, the nurses, and for Kathryn. I mean in the grand scheme of what we could face, I guess we have been blessed so far.

Dr. Mena did mention that changing the UAC line out and reinserting a new one could help this problem. Of course, it could also make it worse or not change it at all. They don't want to do that if it is functioning properly. So naturally my question was, "well is it functioning properly?" Expecting to hear "yes", imagine my surprise when Dr. Mena said that it was starting to give blood very sluggishly. So, long story short, is that they may be forced to change her UAC line anyway. They assure us that this is a normal procedure and is not complicated. It is a little more than putting in an IV, but certainly not a major procedure. Each time they draw labs (every 6 hours) could mean that it is time for a new line. We won't know until it happens, but we are peaceful that it is a fairly minor thing.

I just checked in on her this morning. She is holding steady at 1 #, 2 oz today (8 days of a pound and counting) - kinda like the record heat in Alabama of over 100 for 7 days. She has not received a new UAC line as of yet and there is no change in her toe color. No better this morning, but no worse - that's great!! Her first labs have come back and there is still no bacteria growth, meaning no infection has popped up yet. (Remember we'll get our best results tomorrow.) Let's all pray for good results tomorrow too!!

Kathryn is hanging in there and growing some. She is so much a part of our family already and very are so proud of all of her accomplishments so far!! Please keep praying for her. Today specifically pray for great labs tomorrow morning, a great day for Kathryn, wonderful toe massages, and for her nurses and doctors.

Greg asked me last night if I think we are handling this any better or worse than some parents would. I told him that I think we are handling this like Christian parents with previous experience with parts of the NICU. I truly don't know how people face big experiences in their lives without the faith that we, as Christians, have. We look to each other and to God each day to carry us through this and I think that's why we can smile about it so much. (Of course, we cry about it too because it's scary.) But can you imagine how much scarier this would be without the faith that God will wrap his arms around Kathryn and carry her through this?) Greg, Madelyn and I all love you and appreciate the wonderful support you are giving our family of four!! You give us peace to face each day. God's blessings to each of you - he sure has granted mine!!

Sunday, August 12, 2007

Testing for infection

Good Sunday morning. I am so tired this morning, but am up getting ready for church. Kathryn had her first set back last night. I called about 9:30 to check on her before we headed to bed. I spoke with her nurse, Robin, and Dr. Mena. Kathryn started to show signs early last evening of a possible infection. They said she looked the same, but from her labs they could tell that there was a little bit of acid in her blood and her urine output was decreased a little. This can be (but not always) signs of a possible infection.

So, they drew lab cultures which means a new stick for blood drawing and they have sent it off for cultures to see if there is an infection. Meanwhile, they have started her on antibiotics to treat an infection if there is one. The antibiotic she was started on is supposedly the top one for preemies. They reassured me on the phone that she was OK and that this was mainly precautionary for babies so little and that if it was an infection, they had plenty that they can do to treat it, but of course, I wanted to see her. So at 10:15 last night I trekked to the NICU to check on her, while Greg stayed here with Madelyn (she was sacked out!!).

Kathryn looked the same, but it's just scary because it's the first setback. Several of the nurses that she has had so far came to me to reassure me that this is common and so did Dr. Mena. I stayed with her and watched and prayed for a while. Needless to say, I did not get much sleep.

When I spoke with Robin, her nurse, this morning around 6:30, she said that Kathryn's blood looked much better and that her urine output had been great through the night. Kathryn "looks like she feels much better" is what she told me. She will be getting another blood transfusion today (normal) and she is back to 1 #, 2 oz again. What a trooper!! She has now held that pound for a entire week!!

Anyway, we should know better about the results of the cultures for an infection today and even better by tomorrow. They test the culture every 24 hours for 5 days to see if anything develops. Please pray specifically today for no infections for Kathryn!!


Saturday, August 11, 2007

My visit with the heart doctor

Oh yeah - my visit with the doctor went well. He did an EKG again which was fine and he looked over my pressure diary for the last week and was pleased. He told me to start taking half a pill per day and he will see me again in 3 months! (And he prescribed 30 minutes of walking a day.) Of course, he suggested doing it before 6 am or after 7 pm due to the unbelievable heat here of over 100. (Or I could fast walk in the mall, he said.) He said if I chose the mall to walk, no stopping and no shopping - just walk. I am sure that Greg will thank him for that! Do you know how many adorable preemie clothes there are??

A busy day and some great photos

Yesterday was a busy visiting day for Kathryn. I saw her in the morning, Greg went yesterday afternoon for a Daddy visit, and the three of us went last night for a family visit. We took Madelyn last night for some "white dip-it". For those who don't know, ketchup is dip-it at our house. Somehow, Madelyn has named cheese dip, "white dip-it." We are so used to it, that I sometimes catch myself about to order "white dip-it" when we are at a Mexican restaurant. Anyway, we went to have cheap Mexican last night and then took Madelyn to see Underdog at the "big" movie. (Cute movie for those with kids her age.) Then we went to see Kathryn.

Kathryn weighed in last night at 1 #, 1 oz. I know it's a drop, but if you look at her weight chart for the past six days, she has been either 1,1 or 1,2. So she has held her pound for almost an entire week!!!!!!!

I took a few new pictures too. Check out below.

This is an eyes open shot. She was looking right at Mommy to take this photo.

This is Madelyn's picture for Kathryn I was telling you about the other day. By the way, Madelyn wrote her own name on the picture. I wrote it for her on another piece of paper and she copied it here. Genius, if I must brag!!!

A new hand holding picture with Mom this time. Aren't her fingers so tiny?!!

A picture of Dad and Maddie with Kathryn. Now you can tell just how little she really is in her Giraffe bed!!

I almost forgot, a picture of Kathryn with her new PICC line. That's it in the leg closest to the bottom of the picture. Looking good isn't it!!

Friday, August 10, 2007

The PICC line

I saw Kathryn yesterday afternoon and visited for about 45 minutes. Her PICC line looks just wonderful and I am especially relieved to see that the band aid on her head marking the PICC territory is gone for now. No other big changes in her care though. She will go on and off the different liquids during her NICU stay. They had taken her off the lipids a few days ago since her triglicerides were up and they had taken her off her HAL (her vitamins and minerals) yesterday when they put in the PICC line. Yesterday afternoon they were adding back both which is great!! (Remember these are what Maddie calls her apple juice and milk.) Oh and I forgot to share, about two days ago, they changed her labs to every six hours instead of every three hours. That's a good sign because it means she was having less changes and becoming a bit more stable. There is always a chance it will change back to every three hours, but we will take minor victories as they come!!

When I went to visit yesterday afternoon, I checked her weight gain and she is back up again to 1 #, 2 oz. No official word yet as to last night's weigh in at midnight, but I will check today when I see her.

I go back today for a checkup with my heart doctor that saw me in the hospital. In all honesty, one of the ones I saw was a real pain (Dr. Rao) with bad bedside manner and the second one (Dr. Colon - not pronounced like a part of your body, pronounced with a French accent) was extremely lax. Guess which one I made my follow-up appointment with?

Actually, I was a little worried with Dr. Colon, the lax one, because he seemed a little too lax for how uptight Dr. Rao was. At any rate, I am really hoping that he will adjust my medicine today, because my pressures have been a lot lower on this medication. I am staying in the range of 115/72 or even lower which is such a shock to my body lately because my pressures were so high. They mentioned that if I got too low (bottomed out) that it would cause some headaches, etc. They were correct!! Anyway, I have to take my blood pressure diary and hopefully they will see that and make a change.

Thursday, August 9, 2007

The PICC line is in

Greg tried to run for a lunchtime visit with Kathryn and they were inserting the PICC line so he wasn't able to go in. I spoke with her nurse and they were able to do it in her leg and not her head this time. (Minor victory!!) She did just great with it and she is now "sacked out" to use her nurse's words. I will get to the hospital later to see her so I can report more!!


Wednesday, August 8, 2007

Two weeks old

Kathryn Bryan Ellis is two weeks old today!!! God continues to bless us with miracles!!!

We went to the NICU last night to visit Kathryn and had to wait for about 45 minutes to go in. They were removing her UVC tube from her umbillical cord area. This is how she gets her fluids, "food," and medications. These little lines don't last long and the fact that hers lasted 13 days is wonderful. Instead she now has a temporary IV in her foot for "feeding" and an IV in her arm (to replace the one that had been in her other foot) for blood transfusions. (I think I have this all correct.) The new feeding IV in her foot is what will become her PICC line which I mentioned the other day. The PICC line will be in her head - which as a mom is visually tough to imagine and will be equally tough to see. The nurses say that at this early, it won't hurt her at all, but it sure seems like it would. Anyway, her "food" right now is a mix of glucose water, HAL liquids (vitamins and nutrients) and lipids (fats to make her bigger). Madelyn calls them her water, her apple juice, and her milk since one liquid is clear, one is yellowish, and one is white.

When we went last night, her weight was down to 1 # and 1 oz, but at least she stayed above the 1 pound mark for now!! I spoke with the nurse this morning and her midnight weigh in last night was the same so she maintained that pound. The nurse also said that she may have her PICC line inserted today. Oh yeah, her nurse Susan told us last night that she has started to pass the meconium (for those who don't know what this is, this is the first baby poops!) Sorry for the gross details, but Susan said that Kathryn probably pooped her weight in a single day! Given that, I think it's wonderful that she still weighs 1 # and 1 oz!! Like I said, sorry for the gross details, but I thought that was impressive.

Madelyn colored a picture last night for Kathryn and nurse Susan taped it near her bed so Kathryn and everyone could see it. Madelyn even wrote her name on it - I'll get a picture of it so you can all see our little artist in action before she becomes famous.

I am attaching a few new photos. The first two are reading to Kathryn the other night.Dad and Maddie reading Mommy Hugs to Kathryn.

Mom and Maddie reading Daddy Hugs to Kathryn.

Here's a new shot of Greg holding hands with Kathryn from two nights ago. The bandaid on Kathryn's head is where they have marked their territory for the future PICC line. (See what I mean that it looks like it will be scary!)

Please pray for Kathryn!! Pray specifically today for healthy lungs and a tough girl as she gets her PICC line soon.

By the way, I return to the doctor on Friday for my blood pressure. So far my blood pressure diary that they required me to complete looks great - mostly pressures are normal!!

Tuesday, August 7, 2007

Please pray

If you happen to check the website frequently, it's Tuesday morning at 8:45. I called to check on Kathryn this morning and couldn't speak with her nurses because they are putting in a new IV right now. Please pray for steady hands and Kathryn to take well to the new IV. Last night when Greg and I went to visit, they had taken out the original IV she had in her foot since she was born. It had infiltrated (to those who are medically illiterate like me, I think that means that it slipped from the vein). Her foot was wrapped in a warm compress last night to keep it from swelling. It seems that this is a normal thing for preemies. The doctors tell us that if it is something major they will call us to come to the NICU. Since we weren't called, this must be routine. Still prayers for the nurses and for Kathryn would be great.

By the way, she is back to 1 pound 2 ounces as of Sunday night. No official weight gain news from last night's weigh in. It also appears that her head is another inch in circumference and she has added an inch and a half to her length coming in at 12 1/2 inches now! (She still looks shorter than that though since she usually sleeps like a frog with her legs scrunched up!)


Quick update before I close, I just spoke with the nurse. The new IV insertion went well. She has a new one in her arm. They are looking into taking away her UAC line and putting in a PICC line. A UAC line goes through her umbilical cord and that is how they draw labs every 3 hours to check on her. A PICC line is very similar but is a catheter instead of an IV. It is much more stable from what I understand and much less invasive to the baby and can stay in one place for longer than an IV. Most likely the PICC line will go in a few days.

Sunday, August 5, 2007

It's Kelly and Madelyn

Hi - it's Kelly and Madelyn writing this time. It's Sunday night at 9:00 and we just got back from visting Kathryn. She looked very good tonight! She has dropped back down to 14 ounces, but is doing great. The doctors and nurses tell us that these 4 ounces could be due to a number of things including wires that got weighed or didn't, weight measurements taken after fluids have been given, or even if Kathryn has an extra wet diaper one day. Madelyn took books to Kathryn's bedside last night to read to her. We bought them for Kathryn right before we went for our nightly 8pm visit. Madelyn picked them out and they are called Mommy Hugs and Daddy Hugs. Kathryn seemed to like hearing them and then Madelyn sang her a song. Madelyn sings songs to Kathryn every time she visits - which is mostly at night! The night nurses have started to ask her what song she is singing tonight and it seems that they look forward to hearing it!! Some of Kathryn's favorites are Jesus Loves Me, Twinkle Twinkle Little Star, a song about Aubie that Madelyn has made up, and the Alphabet Song. Ocassionally Madelyn has blessed us all with the opera version of one of these tunes! Madelyn is also very inquisitive to Kathryn's nurses and has even helped nurse Susan weigh one of Kathryn's diapers. Kathryn's nightime respiratory therapist, Derek, is also educating Madelyn on Kathryn's ventilators and all of the tubes and buttons!

Well off to bed! It was a very busy weekend - or at least in comparison to the activity I was getting in the hospital. My blood pressures are starting to level off. Greg is doing well too - a little tired. I think the past few weeks are catching up to him and the craziness of taking care of three girls, work, the yard, himself, etc is wearing him out!!

Please keep us all in your prayers, but especially Kathryn!

Love, Kelly and Madelyn

Friday, August 3, 2007

Kathryn's prints

I almost forgot to share these. They probably look much bigger than they really are. Her hand is the size of half my thumb and her foot is the size of my pointer finger down to the second bend.

The ballerina and the 1 pounder

Well, Kathryn continues to grow! She hit 1 pound yesterday morning on August 2 and as of this morning, she is 1 pound 2 ounces. She is still doing the same otherwise, but the growth is so exciting!!

I was released from the hospital yesterday afternoon around 4:00. My blood pressures are doing much better, but still not stellar!! They are controlled right now with medication which we hope will be a temporary thing. Normally it will take several weeks or a few months to get back under control following PIH, but some never do return to normal. In the grand scheme of things, I think that this is something I can definitely deal with either way. I just feel lucky that this is the only thing I currently have to deal with!! I am keeping a blood pressure diary and go back to that doctor in one week to see how they think I am doing.

Here is a new picture of Kathryn (not much change other than the 4 new ounces, but she does have a new bed too):

Maddie started ballet yesterday too! Here's a picture!


Wednesday, August 1, 2007

One week old

Today Kathryn is 1 week old! The doctors continue to be optimistic and tell us that they have yet to see anything negative with the smallest Ellis!! She is maintaining her birthweight if not a little above right now, but we have still not seen the 1st full pound. We are certainly waiting to celebrate that milestone!!

I am still in the hospital as they continue to monitor my blood pressures. With PIH (Pregnancy induced hypertension), it takes several weeks to get it back under control and many patients leave the hospital temporarily on blood pressure medication. They have not seen me return to normal enough blood pressures even with medication though to release me at this point. Yesterday I saw a cardiologist and they did an echocardiogram to see if there was a particular reason that I continue to experience blood pressures as high as 196/109 or even higher a few random times. The concern is that they get those blood pressures here in the hospital when the extent of my activity is showering and getting dressed, visiting Kathryn in the NICU (by wheelchair), and lying on my right or left side. If they can't control it with that limited activity, they have been afraid to release me to my family knowing that my activity will naturally increase at home! At this point, I have told Greg that I am convinced that they are simply researching ways for me to be able to work, drive, eat, and play while lying on my left side for the rest of my life!!! :-) All kiding aside, I am extremely ready to leave the hospital as a patient and return just for daily visitation with Kathryn.

Kathryn had a head ultrasound yesterday (not her first) and there were no concerns that they could find. For babies of this gestation, they are looking for bleeding in the brain, but our little fighter is doing just great!!! The chances for any of that decrease to less than 10% when the babies reach 1 week old, so it looks like we just reached our first milestone!!! Another step for now is that the billiruben light is gone for now. She will likely go on and off of that many times, but it's nice to see her now without her little sunglasses!! In case we haven't shared yet, she has the longest blond eyelashes and it looks as if she may be a blond. Of course at this point, it could be just her baby fuzz and her hair color could change as she grows.

Kathryn continues to receive blood transfusions and may be on her 4th or 5th already. The doctors assure us that this is extremely normal and expected for a baby of Kathryn's size and that she will have many more until she leaves the NICU. Her little body only holds 1 ounce of blood and with the tests that they perform on her every three hours, she doesn't have time to reproduce enough on her own yet.

Many people have asked us about blood donations. If you are here in Birmingham, you can go to Life South at the corner of Oxmoor and Lakeshore in Homewood and specify that you want to give in Kathryn's name. (You probably have to give her full name of Kathryn Bryan Ellis.) If you are not local, I believe that you can visit your local American Red Cross office and do the same thing. Kathryn is B+, but even if you are not a match for her, you can give in her name and she will receive a credit. This and prayers are the best things that we can do for her!!

Well, enough of a novel today. My cardiologist just came in to let us know that as long as my blood pressures remain ok today, then I can go home this evening around 6 or so. We've heard that for a few days now, so maybe this time is for good. Fingers crossed! Please pray for all of us!!