Sunday, December 30, 2007

Singing the praises of Zicam cold swabs!! (and all about the rest of our weekend)

What a weekend. Of course the days kinda run together lately!! Thursday, Kathryn had her checkup at the pediatrician and showed weighing 5 ponds, 10 ounces. Then Thursday night we noticed that she had "goop" in her eyes, indicative of conjunctivitis. So the doctor called in some eye drops for her. Friday I had my annual checkup with my regular doctor and got a clean bill of health. We were very fortunate to receive two amazing dinners on Friday night from couples in our Sunday School class that we have eaten on all weekend!! Friday night Madelyn asked if she could spend the night with her Nini so we let her. They went to see the Water Horse movie and then went back to Nini and Pawpaw's house to watch Madelyn's new movie, Underdog!! During the night Friday night, she got sick at their house and threw up. (She is ok!) Meanwhile, at our house, Kathryn started to show signs of dropping her oxygen sats a little so we had to increase her oxygen again. We telephoned the doctors and they said that was alright but if we started to notice any other signs, call back. Well, about an hour later, at bottle time, she seemed very uninterested in eating and went almost 9 hours with no bottle. So we called back and our pediatrician wanted to see her.

After being seen in his office and getting an xray of her lungs at the hospital, they have determined that she seems to be ok and we will be seen on Wednesday of this week by our pulmonologist to see if they want to tweak any of her medicines. They did go ahead and up her albuterol treatments to 4 times daily. So hopefully after the pulmonology appointment we will know a little better.

Saturday night, Madelyn went to the Alabama basketball game with Nini and Pawpaw while Greg and I stayed here with Kathryn. Sunday morning, Maddie woke up to a significant cough and since we are all trying desperately at our house to stay well, I told her that medicine would be coming. Well, if you know us well, you know of the struggles that I have with her to take medicine. She will absolutely make herself throw up from taking medicines - and I have tried it all - liquid, chewables, thin strips, granules, etc. She throws them all up. Well, the pharmacist recommended Zicam cold swabs and Claritin for Kids. The cold swabs are little Q-tips with medicine that you put in each side of your nose 4 times daily and they are safe for kids 3 and up. They are amazing!!!!!!!! The Claritin is clear, but grape flavored (a parent's dream because at least if they throw up, it's clear) and you only have to give it once a day - Hallelujah!! Well, Madelyn is feeling much better, so I think we have found our medicine!

All in all it was a great weekend!!


Friday, December 28, 2007

Birth Announcement

We mailed announcements today for Kathryn's homecoming. Unfortunately, there was no way that we could send announcements to everyone who has been so supportive of us and Kathryn over the last five months, but we wanted to share this with each of you. Thank you all for your love and support during this time in our lives.

2 Corinthians 9:15 - Thanks be to God for his indescribable gift!

His Love to All,

Greg, Kelly, Madelyn and Kathryn

Thursday, December 27, 2007

Christmas Pictures

Kathryn enjoying the bouncy seat - you have to brace her in!
Reed and Kathryn - Reed was born October 16 and cousin Kathryn is 2 1/2 months older!
Maddie and Santa at the Birmingham Zoo!

Maddie and her new American Girl Doll named Sarah!

Maddie and cousin Reed.
Maddie visiting Kathryn in the hospital when Kathryn was readmitted.
Kathryn and her Phillis Diller/Rod Stewart wig!! Someone knitted this hat for the NICU babies - isn't it too cute!!
Mommy, Maddie, and the Claus Family on our trip to the Polar Express!

Thursday, December 27 - Kathryn's first trip to the doctor and our Christmas

We had a wonderful first Christmas with both of the girls. We spent a little time with each of our families, but not too much time so that we could keep the girls well (most especially Kathryn)!! Kathryn was able to meet her cousin Reed for the first time as we kept them on separate sides of the room. Madelyn loved being able to play with two babies!! The girls received so many nice things for Christmas. Maddie asked Santa for a purple bear, a bee toy, and a toy stocking and he seemed to have come through!! Greg and I gave her a jewelry box and a necklace and she thought she was such a big girl. She also received dress up clothes, a doll, some movies, a camera, clothes, a zoo membership, and toys. Kathryn got several toys from Santa and a My First Christmas bear. We gave her a sign for her room like her big sister's! She also received a diaper champ, formula, various baby needs, Baby Einstein videos, several neat baby keepsakes for her room and a few gift cards for later!! Both girls were very lucky to receive such nice and thoughtful gifts!

Kathryn has managed to stay home this time for five wonderful and exhausting days!! She is doing so well!! We went to the doctor today for her first official visit and she is now showing a whopping 5 pounds, 8 ounces. Dr. Stansell was very pleased with her progress! We will go back again in two weeks. Her sat levels at home are staying in the range of 97 - 100 most of the time and she is still on 1/2 liter of oxygen. Her schedule keeps us busy (along with that of a 4 year old), but it is such an amazing blessing to be all in one house!! I Samuel 1:27 says, "I prayed for this child, and the Lord has granted me what I asked of him."

God has certainly blessed us this Christmas with more than we could ever ask for! As it says in Psalm 126:3, "The Lord has done great things for us, and we are filled with joy." We hope that your holidays were also filled with joy!!

In His Name,


Saturday, December 22, 2007

Saturday, December 22, 2007

We are home again!! It finally feels like Christmas at our house!

Please pray for Kathryn that all goes well and she stays home.


Friday, December 21, 2007

Day 9 - Friday, December 21

Kathryn is supposed to come home again tomorrow!! Pray that all goes well and that she stays home!!


Tuesday, December 18, 2007

Day 6 - Tuesday, December 18

Kathryn appears to continue to improve. She is now off of the lasics and is only on the medications she will return home on. They are monitoring her at the hospital now to ensure that these will be enough for her to be manageable at home without another return hospital visit. She will come home on two new meds for her lungs and on albuterol treatments twice daily and percussion treatments several times daily. The percussion treatments are actually kinda fun. It's a small rubber mallet that you tap with medium strength against her back. The sound of it sounds like you are hurting her, but if you do it to your hand, you can tell it's no big deal. She actually loves it! We'll have to make sure to keep it away from Madelyn because she thinks it's great too!!

I also forgot to share that she was due to go to the eye doctor today for her final checkup. Since she is in the hospital they had the doctor come to Brookwood. She passed with flying colors and he said that the ROP is completely gone!! He seemed very impressed and said that with a baby as small as Kathryn was, the chances of the ROP completely regressing is very small. Yet again, Kathryn the miracle micro-preemie impresses the doctors!!

The doctors are suggesting as of this evening that Saturday would be the earliest 2nd discharge date. I am hoping for that date, but I also want her to be well when she comes home so that hopefully she can stay home this time!

Please pray that she does well with the new meds!!


Monday, December 17, 2007

Day 5 - Monday December 17, 2007

Well, Kathryn seems to be improving. They had reduced her lasics to once a day on Saturday and Sunday and then today they stopped them completely. She has been losing weight because of the lasics, but she is still almost 5 pounds. She is on two new medicines that she was not taking before she came home. They are both diuretics which will help her from getting "wet" lungs. Like I said, she is off of everything now that they have been using over the last few days to get her back to well!! Now they want to monitor her at the hospital for a few days on just the things she would be taking at home and watch her xrays to make sure that they do not get any worse. Dr. Dicarlo said that they are just trying to find the right mix for her to be at home on. She was wide eyed and alert today at my visit and she is getting a little personality!!

Today was Madelyn's school Christmas party and she made many Christmas ornaments for our tree and a Christmas plate for Greg and I. Her teacher, Ms. Rhonda gave each of the children a book and Madelyn loved hers!!

Please pray that all goes well over the next few days so that Kathryn can come home before Christmas and stay home this time. They are thinking probably around Friday or Saturday!!

(Also please pray for some friends that we have met in the NICU. They are really experiencing some health concerns in their family and could certainly use some prayer warriors!)


Saturday, December 15, 2007


I forgot to post this - A family at the NICU who we had become friends with was very surprised last night to see us back. He joked with us that we had lost our seniority by going home and coming back and that they were now the family in the NICU the longest. Greg told him that once you hit 120 days, you get tenure and you don't lose seniority!! We all had a good laugh!

We all get to be a big family through this experience and it's nice to know that we can sometimes still have a sense of humor about it all!!

Saturday, December 15

Yesterday we had a new company come out to set up Kathryn's oxygen and monitors. The first company was absolutely awful. Terrible service and we couldn't get accurate machines or supplies. Greg even went to fuss with the branch manager and he was told that oxygen is not a life or death situation. Excuse me, it is for Kathryn!! Well, anyway, we are done with them and the new company appears to be much better!! (If you live in Birmingham and are ever in this type of situation, may I advise, please do not use Apria Healthcare.)

Kathryn seems to be improving at the hospital. When she was admitted they started suctioning her nose before each feed. Evidently we will need to do that at home too. Because of the canula she gets very stopped up. I was chicken to do that at home because to do it you have to move the canula for a few minutes and I didn't want to be the cause of a desat. But it looks like it will be necessary - gotta put on my big girl panties!! They are also still doing the vibration therapy and the albuterol treatments at the hospital. They don't think that we will have to do those at home, but we don't know for sure yet. She will come home with two new medicines that are given in her bottle. Dr. Dicarlo joked with Greg and I that she can follow her four medicines with a little swig of formula! They are also still giving lasics in the hospital. She won't come home on those just yet, but she certainly could if needed (they are also by mouth or "PO" as they call it). At the hospital, she is already back down to half a liter of O2 so it looks like these things are helping her. They are doing chest xrays daily to see if her lungs look like they are improving. So far they haven't seen a huge improvement but they know that there is some since she is requiring less oxygen and her sats are back up.

Dr. Dicarlo said it looks like the earliest she would be back home is Tuesday or Wednesday of next week. They just need time to be confident that these things are working for her so that we are not right back to the hospital again! I think he seems to think that it may even be later next week before he would send her home, but we'll see.

Please pray for Kathryn!


Thursday, December 13, 2007

Here we go again - Day 1 - Thursday, December 13

Well, Kathryn was readmitted to the hospital tonight. She continued to need the 1 L instead of .5 L which would have been no big deal on its own. I had numerous struggles throughout the day with Apria (the home health group) today and once we finally got all the right equipment and working properly, I noticed that her SATs were staying in the range of 87-92. Well, the doctors wanted her above 93. So in essence she would have required more oxygen to stay in the higher SATs. So I talked with Dr. Mena and he consulted both Drs. Dicarlo and Lozano (the pulmonologist) and they all agreed that she needed to be readmitted.

So at about 5:45 we trudged back to Brookwood NICU - the place we hoped we would never be again - and took Kathryn back to the hospital. They started her on antibiotics just to be on the safe side and took blood cultures to see if there is an infection. They don't think so, but they always check for that just in case. They also did a chest x-ray and her lungs looked very "wet". Just means that she was having trouble with them. They started her on Lasics again to help with that (it's a diuretic) and they put her back on vibro therapy every 3 hours and albuterol treatments every 6 hours. They think that this is just an issue with her lungs since she has Chronic Lung Disease from her very early birth and 3 months on the vents. She will have to stay for at least 3 days so Monday is the earliest she would come home, but they suggested that it could possibly go to Tuesday or maybe Wednesday.

She is eating wonderfully and seems to be doing well everywhere else, so they really think that this is simply a lung issue. I think that when she comes home next time, she will probably come home with albuterol treatments and lasics given at home.

Well, please pray for Kathryn!! (and Greg, Madelyn and I too) Maddie was devastated that we had to take Kathryn back - she said that she wants Kathryn to still live with us. She was in the tub when I told her and she got out (naked as a jaybird) and cried in my lap. (Of course, I cried with her!) Not that I am worried about Kathryn - she is in excellent hands and she is doing fine - but I hated having to take her back. Our house is really quiet tonight - no beeps, buzzers, or children. Just Greg and I. I miss the commotion!


Wednesday, December 12, 2007

Since we have been home

I sit here typing at 1:43 am on Thursday morning as I prepare for the 2:00 am feeding. It's a quiet moment in the house - a rarity!!
Kathryn had a huge day on Monday with the coming home. Once we finally settled in that night, she was satting in the 70's and 80's so we turned her oxygen up to 1 L instead of 1/2 L. She has stayed on that since we have been home, but the doctors are aware and we think it could be either a difference in equipment or that she is having a lot more activity. Hopefully it will be short lived. We also came home on a SAT monitor and an apnea monitor. I was ready to throw out the apnea monitor the second we left the hospital. It was alarming for false apnea's almost every 10 minutes from Monday until Tuesday morning. We made an executive ("parental") decision to turn it off on Tuesday morning and have not turned it back on. The alarm on it is loud enough to wake the neighbors. Long story short, since we have the SAT monitor, we will still have an "alert" if something were wrong with Kathryn, so when the home health nurse came yesterday for Kathryn's checkup, I posed the question if we could please send the apnea monitor back to Apria Healthcare and not use it!! Through a series of phone calls, we got to the right doctor (Dr. Lozano - her pulmonologist) who said he was writting an order to discontinue it and would fax it to Apria this morning!! Yeah - one machine down already!!

Kathryn's home health visit yesterday was just a routine check. No big deal, but they did weigh her. She was 4 lbs, 15.5 ounces as of yesterday - she gained 3 ounces since discharge Monday!! Other than that, it has been a crazy few days getting used to an infant schedule and Kathryn's special routines!! Here is a picture from her first bath at home.

Madelyn had her Christmas concert at school on Tuesday night and they were wonderful!! She looked just wonderful in her beautiful Christmas dress from Nini. Here she is with her friend Jalyn!

We are exhausted, but pleasantly!!

Please keep Kathryn in your prayers!


Monday, December 10, 2007

Pictures from the homecoming

Kathryn is Home!

I announce with fantastic joy that all four of us are under one roof tonight. Kathryn Bryan Ellis is home with her family and is doing wonderfull!! She was discharged today at 4:00 and we have spent the afternoon and evening settling in! In the coming few days I hope to post coming home pictures and her birth announcement! Just know that she is safely home and receiving tons of love!! She is now 4 lbs, 12.4 ounces and 16.5 inches long (up from 14 ozs and 11 inches at birth!!).

Dr. Dicarlo came today to see us off (he was not the attending physician). I asked him now that we are going home, what were Kathryn's chances of survival. He said that on day one he would have given her between 5% and 20%. Just look at the odds she beat!! He also said that she is the smallest baby at birth that he has been able to send home (in 17 years). Of course . . . . I cried!!


Thanks to all of you for your prayers!! Please continue to pray for Kathryn!


Day 140 - Monday, December 10 - Graduation Day Morning

Well, I just talked to nurse Kim for the last morning and Kathryn had a great last night in the unit. The nurses have been seeing first hand what I meant about the crappy leads on the apnea monitor and there is an official order from Dr. Dicarlo to get us something better TODAY before she heads home. (Apria, you better find us something quick!!) I went to bed last night around 11:30 and am already up at 6:00 am. Of course, I did not even sleep well last night. It was like Christmas Eve when I was a child and I was so excited about what Santa would bring. I know what Santa is bringing today and it's the best present ever. I get my family under one roof!!!


Sunday, December 9, 2007

More pictures

Kathryn's bear waiting on her at home!
A wall decoration in Kathryn's room!! I certainly think it says it all!!
Another of our wall decorations in Kathryn's room - fairly accurate right?
Rooming in with Kathryn in the Parenting Room at Brookwood 12/07/07.
Maddie and Santa

Pictures - Maddie Day 2007 and others

We took Maddie to Chuck E Cheese and Bowling today for "Maddie Day" before Kathryn comes home. Maddie had never been bowling and if you want to see sheer excitement - take a four year old to bowl!!

This one was taken by Maddie - not a bad picture!!

Maddie and Daniel at the RUMC Hanging of the Greens last weekend. What a cute pair!

Me and Kathryn after bath time.

Me giving Kathryn a bath!

Kathryn during her bath - wide awake!

Day 139 - Sunday, December 9

Only one more day until we bring Kathryn home!!!!

Friday night was interesting. We got to the hospital at around 8:15 and gave Kathryn her bath in the NICU. After she was dressed, we bundled her up, got her things and took her to our room!! We cuddled and held her until her 10:00 feed. It was so weird to have her by ourselves with no audience around us!! She took the 10:00 feed like a champ so we snuggled until 11:00 and then I laid her down knowing we would need to be up again at 2:00 am. She is so funny when she sleeps. She grunts and snores and wiggles so believe me when I say, we knew that she was there!! At about 1:45, her apnea monitor went off - not for an apnea, but to tell us that the leads were off. That monitor probably woke our neighbors (at our house) by buzzing at the hospital!! You can't get it to quit until you fix the problem so I was trying to fix the leads and it would not quit. (I finally turned it off!!) I was holding Kathryn and feeding her, so I knew that she was breathing. Before we laid her back down, I changed out her leads and she was fine!!

Here is the bad thing about the leads - they are stickers and when she sweats they come off. When they come off, the monitor goes off. And because she is still tiny, we have to swaddle her pretty well, so she stays warm, sweats, and then the leads come off, and then my eardrums burst!! Long story short, they do have another method to keep the leads on. Apria Healthcare says that they ordered us the other method last Thursday afternoon and had it sent overnight UPS to us so it should have been here at the latest on Saturday - guess what - no package!! I raised a little trouble with our rep's manager yesterday and we should have the package Monday or he said he will fix the problem.

Other than that, the rooming in went very well!! It was nice to spend some just us time with Kathryn!!

Saturday, we finished up a few errands and then came home for a Dad, Mom, and Maddie nap. My first Saturday afternoon nap in years!! We went to a party last night with some college friends and new friends. We had a wonderful time and played dirty Santa. Greg came home with a Man's kit - cable ties, duct tape, electrical tape, a tape measurer, and a six pack of the Beast beer. I on the other hand, came home with a bottle of wine.

Well, today is Maddie day. We let her choose what we are doing, so I think we are headed to Chuck E Cheese and bowling for the day!!

Tomorrow is the big day!!

Please pray for Kathryn!


Friday, December 7, 2007

Day 137 - Friday, December 7

We are now "trained" on Kathryn's machines!! The apnea monitor has a deafening scream that we pray we don't ever hear. It alarms if Kathryn stops breathing, so that's another reason we hope to never hear it. She really does not apnea much at the hospital now so we really feel that this is a precautionary machine and hopefully it won't live with us for a long time. The saturation monitor for her oxygen sats is pretty similar to the one in the hospital, just much smaller and portable! (about the size of a portable DVD player for kids - or smaller) It slips into the diaper bag and off we go! The oxygen tanks seem pretty easy too. She will have two portables that will last her 4 hours each, a medium one that would last 16 hours, and a big one for the house that will last her about a week. The company will come out on a regular basis with new tanks and supplies for them and the two monitors. It sounded overwhelming to me at first, but once we really saw it, it seemed to make perfect sense.

They also ordered for her a nebulizer which she won't use yet, but may in the future for breathing treatments when needed - similar to a child with asthma (which I wouldn't be surprised if she developed as she grows up.) Everything is pretty portable so when we take Kathryn to the doctor, we just put our little backpack of oxygen on, put her in the car seat, and carry the apnea monitor bag and the sat monitor in her own diaper bag.

They went ahead yesterday and switched her to the new machines in the hospital so she is no longer on their machine, but is still using the hospital oxygen until discharge.

We are rooming in at the hospital tonight and she will sleep in the room with us. Just Greg and I and Kathryn, but we can call the nurses if we need anything. It should be interesting!

Please pray for Kathryn!! She is up to 4 pounds, 11 ounces as of last night. Only a few more days!!


Wednesday, December 5, 2007

Day 135 - Wednesday, December 5, 2007

We have been so busy the last few days. Monday was a fairly normal day - Greg and I to work and Madelyn to school! Early Tuesday morning (about 4 am) I woke to a cold house and realized that our heater had died!! Well, you can't bring a newborn home to a cold home (plus I already felt like a Popsicle!!) Anyway, I went to work yesterday morning knowing that I may need to leave to come meet the heating contractor at the house. Long, long story is that they called and said that they could be at the house yesterday by 12:00 and that if the heat needed to be replaced (instead of fixed) it would be Wednesday and they would need access to the house all day. Meanwhile the hospital had called to tell us that our training will be on Thursday at 11:00 at the hospital. So I went to my bosses and told them that this was getting to be too much to handle from work knowing that Kathryn was coming home next Monday. So, I am now done with work and am at home until February 4th!!

Well, last night we stayed at my mom's because it was much too cold to sleep in the house. Today they are fixing the heat as I type in sheer cold. I am wearing sweats and a jacket around the house, but it is warming up a little now!! Being home all day has given me the opportunity to clean the house before Kathryn comes home, do some laundry, and various other things that I needed to do to get ready.

Tomorrow we have training to learn Kathryn's machines and we also meet with the OT who has been working with Kathryn in the hospital for baby massage and range of motion. What a busy day we have.

Kathryn is up to 4 pounds, 7 ounces now and seems to be doing so well. She definitely seems ready to be home!! (And boy are we ready to have her!!)

We are going strong to get her home on Monday!! Please pray for Kathryn!!


Sunday, December 2, 2007

Day 132 - Sunday, December 2

What a weekend. Well, Friday I was in a bit of a panic after hearing that they had moved up the date. Excited, but panicked because I felt like we had a lot to learn and understand and set up before she came home. Well, Friday afternoon, at Greg's request, I went to meet with Dr. Mena to understand and that afternoon, he explained that he was taking her off of the MCT oil and breathing treatments and keeping her at .5 liters over the weekend. He said that as long as she gained weight over the weekend without the MCT oil and did ok without the breathing treatments, he would order the equipment on Monday (the 3rd) and train us and we would discharge on Tuesday (the 4th).

I have been shopping all weekend finishing up Christmas, getting baby supplies, and getting ready!! The car seat base is in the car, the tree is decorated, and we are ready!! Well she lost about 2 ounces over the weekend so they put her back on the MCT oil and plan to send her home on the oil!! But she did fine without the breathing treatments and her SATs were great. Dr. Mena talked to us this afternoon and explained that he could still go with the plan for trying to get her home by Tuesday, but he feels more comfortable to not rush us with the training and home health care set up. So he thought it would be closer to Thursday or Friday of this coming week before we would be ready. Since that is the case, he wants to keep us over next weekend and make Monday, December 10 her definite discharge date. He doesn't want to send us home towards the end of a weekend where we couldn't get in to see the pediatrician if she needed to.

So Monday, December 10 it is!!! Here goes the countdown!! I think most everyone knows that Maddie was a preemie too (31 weeker). She was born on October 10, but her due date was guess when . . . . December 10. Isn't God great?? (Not only is he wonderful, but he has a sense of humor too!!)

Please pray for this week. We are so tired and so ready to quit seeing so much of Brookwood. Everyone has been wonderful - we are just ready to have her home. Pray for Kathryn!