Monday, January 28, 2008
Sunday at a diaper shower given for us in honor of Kathryn by our Sunday School class (yet another outpouring of their support of our family!), we were given a prayer quilt for Kathryn. It has strings on the blanket that had many knots in the strings. Each knot represents a prayer said for Kathryn. I have brought it to the hospital and placed it over her as she sleeps so that she is truly covered in prayer and that each person who visits can tie another knot in her prayer quilt. I know that everyone can not visit her so I thought that I would throw this out. For anyone who would like to pray for her, please post a comment on this site and I will print all the comments. I will take the prayers back to her hospital room and pray each of them at her bedside and tie a knot for each prayer. So if you would like to add a knot to Kathryn's prayer quilt, please respond here.
I will take pictures and post them later. It is difficult to post pictures from the hospital - I have to wait until I am home!!
Kathryn's spinal tap is tomorrow. Please pray that it is negative for meningitis. It still will not mean that we are going home since her oxygen is still increased. Both the doctors and Greg and I are not sure that we have gotten the right mix yet for her medicines for her to be able to come home yet, but hopefully it is not too much longer. She is up to 6 pounds, 7 ounces by the way. She has also started to take 2 1/2 to 3 ounces per feed and is now skipping the 2 am feeding. She has slept from 10:30 pm to 6 am for 3 nights in a row now!!
Please keep praying and comment if you have a prayer you would like for me to pray over her and add a knot to her prayer quilt!
Friday, January 25, 2008
Kathryn is 6 months old today and weighs in at 6 pounds, 5 ounces. Wednesday night we finally got a room around 8 pm. She was on 1 liter of oxygen at that time and she has remained at 1 liter since then. She seems to be doing much better. Yesterday was filled with feedings, weighings, blood work, medicine cocktails, & snuggle time. Her medicine list seems endless right now with 3 diuretics, iron, potassium, MCT Oil for fat, Viagra, 2 antibiotics & albuterol for breathing. Some of these are temporary but we could go home with as many as 3 new medicines! Last night, Greg, Maddie, Kathryn and I had dinner in Kathryn's room and then Greg and Maddie headed home for the night.
Today, Maddie brought Kathryn a cupcake to the hospital for her six month birthday! We let Maddie eat the cupcake, but we put a small dab of frosting on Kathryn's lip and let her have a special treat. It was about the size of a BB pellet and you would have thought that she had just tasted heaven!!
Kathryn also started taking 2 1/2 ounces of formula per feeding yesterday and she is doing well with it. The doctors said today that if she keeps it up, we can let her start to skip the 2 am feeding if she wants to sleep through it!! The doctors also reduced her Lasix today to once daily instead of twice. They seem to be pleased with her progress. The plan is to repeat her spinal tap next Tuesday. If there is no further indication of meningitis, then we may be discharged mid to late next week.
We have been so blessed with all of the phone calls, emails, cards, letters, prayers, and gifts for Kathryn. Our amazing Sunday School class at Riverchase UMC has showered us with love, prayers, letters, dinners, and their time. Yesterday, they surprised us with a tremendous box of drinks and goodies for our hospital room to help us pass the time. Greg and I are so blessed by each of them and their commitment to a class of friendship and Christian marriages. It is from surrounding ourselves with other Christian families that we have truly grown in our marriage too!
Please continue to pray for strong lungs for Kathryn! But most of all, I ask that you pray fro the other families at Children's Hospital. A lot of these families are dealing with much more dire circumstances that we are and it may be our prayers that help them get through each day. Everyone praying for Kathryn are some of the strongest prayer warriors I know! Bless you!!
Wednesday, January 23, 2008
I listened this morning on the radio to the Rick and Bubba show and they the aired the speach that Rick gave yesterday at the memorial for the death of his 2 year old son. I was in tears at the thought of losing a child, but Rick remained strong in his faith as he talked about this great tragedy. I encourage you to go to the website - www.rickandbubba.com and click on the link that says A Father's Heart. Rick talks about the greatest tribute to his son is for you to consider your walk with our Heavenly Father and your commitment to the Kingdom. In memory of William Bronner Burgess and in honor of my little sweet Kathryn Bryan Ellis, I ask you that look inside your heart and really focus on the important things in your life. As Rick said, stop measuring your life by your successes at work and your worldly possessions, but instead fight to keep your family focused on the prize that God promises to all who will proclaim his name and accept his challenge. Please grab on to the Great Commission!!
I think that there is nothing special about the circumstances that Greg and I are facing. We are surrounded by families here at Children's Hospital that are in much more critical circumstances than we are in. We just have a peace about the way we handle it because we know that we are not facing this alone. We face it with Our Father and all of our Family of Believers. In one of my favorite songs, it says "pray for the grieving even when you don't think that you can." Greg and I have a lot to pray about with Kathryn and yet I find it just as important to pray for all the other families here (including the Burgess family). That's just what we are called to do.
I spoke with my boss at work yesterday concerning the new situation and once again he has been flexible. I keep worrying about their reaction, knowing that if I have to make a choice there is only one obvious choice and so far I have not had to make a choice which is amazing!! I certainly have done a lot of praying about this and have told God that whatever he needs me to do, I will and I will listen and trust faithfully that he will provide!
Here's praying for a room today!! Oh and yesterday, I gave my family a surprise. When I get around to picture taking, I will post a picture of it, but yesterday, I chopped my hair off in a similar cut to Katie Holmes (not that she is my idol - it's just a cute cut!!) I think it looks cute!
Tuesday, January 22, 2008
A friend sent an email to me today that the very center verse in the Bible is as follows:
Psalms 118:8 "It is better to trust in the LORD than to put confidence in man."
I am trusting in the Lord each day to make Kathryn better!!
Monday, January 21, 2008
We have had some extensive conversations with the doctors to let them know our general frustrations with the lack of communication we are feeling at this point. I think that was a great thing, because we got some big answers today.
First an update on Kathryn's status: when I left today at 2:15 (because the unit closes), she was down to 2 liters of oxygen. I have no idea how because they made no changes to her treatment. I was with her, holding her, most of the morning, and I know that about a million prayers went up for her and those two things combined is the only explanation I have. She was still holding on her feeds since midnight last night, however, Dr. Lozano came in (on his day off) and has added back the bottle feedings so she should get one very soon!! They have also decided to start her on a new medication to help with the pulmonary hypertension called Sildinafil, which is a form of a very well known drug - Viagra! (Isn't that strange??)
Now on to the clarity of her situation: Dr. Troxler (pulmonology team) confirmed this morning that she is in fact being treated for meningitis. They can not pinpoint whether it was viral or bacterial for several reasons, but they can confirm meningitis because she had white blood cells and red blood cells mixed in the spinal tap testing that they performed. Also, earlier in the week, she had an echocardiogram done by the cardiology team that showed she had some inflammation in the arteries to from her heart to her lungs that would indicate pulmonary hypertension which is high blood pressure in the arteries that supply the lungs. This is very common in BPD babies (or broncho pulmonary displasia - meaning chronic lung disease). So at the time that they noticed it they did not think it was a big deal since it is common in BPD babies. Now that Kathryn continues to rely so much on Lasix (she is getting them twice a day - with the ability for an extra dose if needed), she is adding extra strain on her pulmonary hypertension which is making it more of a factor than before while she is fighting this infection. So in order to allow the Lasix to do what they need to do without raising her oxygen requirements they have added the new medication - Sildinafil (Viagra). They do not necessarily think that she would need to come home on either the Lasix or the Sildinafil - they think that these two things are a result of fighting infection and that they are counteracting each other.
So you can see that we finally got some clarity today. As long as Kathryn continues to do well on decreased oxygen and shows signs on staying stable she will be eligible for a room again. We hope that will be Tuesday or Wednesday at the latest. Please pray for continued stability. Pray for good responses to the medication. Pray for continued wisdom for the doctors - some days I feel like they need it more than others!! Pray for peace and comfort for Madelyn - I know the last six months have been strange for her, but she seems to think it has been one tremendous party!! Pray for Greg and I for some much needed peace of mind, relaxation, and time together as we have a few days together until Kathryn returns to her own room. Although we would like to be with her, it is giving us some much needed time for the two of us!!
Sorry for the novel - I will write more as things change. Please know that we appreciate all of the prayers, calls, and emails. If we don't respond, please forgive us!
Sunday, January 20, 2008
Pray that Kathryn will improve and be moved back to a private room again soon. Keep praying for wisdom on the doctors' part and that they will accurately diagnose her.... they are now considering the possibility of pulmonary hypertension as part of her issues, but we won't know more about that for a few days.
Please put on your prayer warrior hat!
Maddie and I are headed to church and then to the hospital.
Saturday, January 19, 2008
Greg said that Kathryn continues to require 3 liters of O2 and the doctors seem unsure as to why so we will just hang in there.
- Kathryn seemed fine the majority of the day yesterday at 1 3/4 liters of O2.
- Last night Greg stayed with her at the hospital and I came home with Maddie
- Greg said that through the night she had some issues and is now requiring 3 liters of O2 but we still don't know why
- The doctors are due in any time this morning to assess
Please pray that the doctors can find the missing link to this puzzle. She doesn't seem to be uncomfortable as long as she gets enough O2, but that is a big question mark as to why she requires so much! They thought yesterday that they had figured out that it MAY be bacterial meningitis, but that still is unconfirmed. I think it is all still a guessing game!
Please pray for all of us.
Thursday, January 17, 2008
As I looked around the room during the puppet show, I had tears in my eyes. Just seeing all of the families here is very touching. It makes me very thankful for how far Kathryn has come. There are so many children here in much worse health conditions than my precious Kathryn. Some of these families have been here for many more months than what we have experienced between Brookwood and Here.
My prayer request tonight would be for all of the families in this Children's Hospital and each of the other Childrens' across the country. Somehow, I feel like we are all in this boat together. These families are strong, tired and courageous. And I know that they can certainly use prayers from far and wide!
Wednesday, January 16, 2008
I am over at the Harbor now for a little break for awhile. Our dear friend Cyndi is keeping Kathryn and feeding her while I take a small mental break to experience a piece of the outside world! The plan of treatment at this point is 13 more days of hospitalized antibiotics until they can determine any further plans for discharge. The hard part is that now that she is in a hospital room and not the NICU, someone has to be with her at all times. I have been here since Sunday and have gone home two times for about 20 minutes each for change of clothes and once to CVS for a few toiletries.
For everyone's peace of mind, we have asked the doctors about contagiousness and they assure us that we are all fine and should not be at increased risk to catch anything. This includes Maddie, she is fine too.
Please pray for rest and continued progress. Greg is back at work as of today and I am pretty much living here since I am still on leave of absence. Madelyn is back and forth between being at home with Greg and being with my mom. We are trying to keep her as much on her schedule of school, dance practice, and choir as much as possible. I think this weekend, I will be free to leave the hospital for a while and Greg will stay with Kathryn to give me some time away.
Tuesday, January 15, 2008
I am at Children's Harbor right now. It's a place for families to get a break. I am heading off to one of the nap rooms in a moment to try to catch an hour of sleep for the first time since Saturday night. Greg and Madelyn are with Kathryn. Please pray for wisdom for the doctors to figure out what is going on and for some much needed rest.
Monday, January 14, 2008
Good news is that she started smiling at us in the last 2 days and she is smiling at every doctor and nurse that comes in!! She is already a heartbreaker and had Dr. Makris wrapped around her tiny matchstick sized finger!!
Please be in prayer for us- we are exhausted!! Pray for Kathryn to grow stronger! Also pray for the doctors that they are able to figure out what is going on. The problem is that she acts comfortable and happy, but the numbers on her sat monitors say differently. I hope that one of the doctors has a breakthrough moment where they realize just exactly what the problem is.
And the prayer offered in faith will make the sick person well; the Lord will raise him up . . . pray for each other so that you might be healed. The prayer of a righteous man is powerful and effective." James 5:14-16
Sunday, January 13, 2008
Well, Saturday, my mom (Nini) was planning to take Maddie to Montgomery to the Shakespeare Festival to see the Winnie the Pooh play. Greg told me he thought it would great for me to go too and he would stay with Kathryn. So, the three of us girls headed out to Montgomery after we stopped at the Pharmacy for all of Kathryn's meds!! In Montgomery, we had lunch with Uncle Beau, Aunt Brittany, and cousin Reed. Reed is getting so big (and so cute) - but really just typical size for a baby his age. (Just looks big to me!!) Then we went to feed the ducks at the Montgomery Museum. Nini and Maddie went on to the play and the rest of us went shopping for a little bit. Later we headed back to Birmingham and Greg and Kathryn picked up Maddie and I at our church. Then the 4 of us went out for our first dinner out together - you can stop holding your breath - no, we did not take Kathryn into a crowded restaurant!! We went to Sonic and ate in the car. Well, it still counts as our first meal out together!! After the girls went to bed, Greg and I watched Hairspray the movie. It was pretty cute!!
Today is Greg's week for church so he and Maddie went together this morning while I stayed home and did laundry, gave Kathryn a bath, and worked around the house!!
Ready for another week!
Friday, January 11, 2008
Thursday, January 10, 2008
Mommy and the girls!
We had her doctor's checkup today and Dr. Stansell said that she looks just fine. She got her Synagis shot today and then promptly spit up her entire bottle for the first time ever. So once we got home from the doctor's office, I gave Kathryn her bath. She was showing low sats today after that for quite some time, so this afternoon, I suctioned her nose. Since then, she has been just fine with sats at 100%. Most babies don't have problems with their nose, but because of the oxygen, we have to suction Kathryn twice a day or so to help her breathe!!
We are preparing for bad weather in Birmingham in the next few hours, so Greg is headed home. Certainly an inconvenience for work purposes, but the girls and will welcome him home early with open arms. I was actually planning to make homemade chicken noodle soup tonight and I hope that our power stays on. Greg said he may actually pick up a pizza on the way home just in case. Also, if our power goes out at all, we'll be switching out oxygen tanks all night and staying up to watch Kathryn in case our monitor battery dies. Let's all pray that the power stays on!!!
Well, that's about all the news from our house for now!!
Tuesday, January 8, 2008
Greg is going strong back at work and juggling his time between projects at Auburn, Alabama, Jefferson City Schools, the Zoo, etc. He is staying extremely busy, but is also enjoying his time at home with the girls!!
I am enjoying the rest of my "maternity leave" until the first of February. I have already decided that if Regions would just continue to pay me without me needing to be there, that I would stay home with Kathryn!! It has been neat to be at home with her, a "housewife", a mom who goes through the carpool line at 1:00 in the afternoon to pick up Maddie from preschool, and a little relaxing for myself too. (Not much though.) I have spent quite a bit of time on the phone too with Doctor's offices, pharmacies, insurance, etc to determine how things are covered for Kathryn and what to do in certain circumstances. We have to ask permission to give her anything - we got permission the other day to give her Mylicon if she acts as if she needs it.
Madelyn is enjoying being back to school. She was invited to a birthday party for Alex Redmond yesterday. The party is in two weeks and is a racing party. Maddie is so looking forward to it - she asked if it was today.
Other than that we are all hanging in there! Looking forward to a quiet week. We have one home nursing visit on Wednesday, a doctor visit on Thursday (complete with a Synagis shot), and hopefully that is all for the week!!
Thursday, January 3, 2008
Well, yesterday Kathryn had her first doctor visit to Children's Hospital with Dr. Lozano (the pulmonologist) and that is definitely an event!! We got there at 12:00 and left at 4:00. Kathryn and I went to this one by ourselves and it was definitely a chore with one parent. Navigating to the building with all of her gear was interesting. Once you get there, we had to go downstairs to the specialty clinics. They look like an airport concourse with glass partitions and number along the ceiling with the number of the clinic. I looked for my "terminal" #6 and headed there. They checked us in and then sent us on a "tour of the facilities." First upstairs to xray where we had to take her out of the carseat, undress, get a chest xray (the tech asked if there was a chance I could be pregnant - is she nutty??), get Kathryn dressed again, back in the carseat and back downstairs. (With all of the machinery and oxygen attached to Kathryn.) Now on to the lab for bloodwork. Maneuver down a hallway not built for strollers into a tiny room (not built for strollers), back out of the carseat, back undressed (partially), try to find a good vein in one arm, try to find a good vein in another arm, try to find a good vein in her hand, stick her - it doesn't take very well, take out the needle, her hand starts to bleed so the nurse squeezes (gently) the blood sample from her hand so that she doesn't have to stick her again. (Big bruise on the hand now!!) Dressed again, back in the carseat, wheel back to clinic #6 (or terminal #6 whichever your preference) and wait, and wait, and wait. Go back to the office, wheel into a small vital signs area not built for strollers, get weighed and measured. Get moved to a room. Nurse from vitals realizes that she forgot to get a blood pressure so brings us back to tiny vital signs room (not built for strollers) and tries to get a pressure 5 times unsuccessfully. Then realizes she forgot to get a temperature too. Then back to our room. Out of the stroller, undress, realize it's time for bottle, feed, nurse comes in for 20 minutes, doctor comes in for 15 minutes, nurse back in for another 15 minutes, then finally on our way. At that moment I realize that the noise I keep hearing is my tummy growling because at 3:45 I have not eaten all day and have been smelling the fantastic food in the cafeteria. Wheel Kathryn over to cafeteria - CLOSED. Go by the gift shop and get a diet coke and a bag of chex mix. Head back to the car - get Kathryn in the car - barely since the car next to me parked too close and I am trying to get her, her monitor, and her oxygen all in at the same time. Pull out of the parking deck at 4:01 pm. What an adventure.
By the way, the doc increased one of her meds and said he would see us back in 5 weeks - everything else looked ok. He wants us to try weening oxygen back down by Friday and if not, call back. He thinks Kathryn may have caught a small cold - but nothing huge if she did.
We may also have found our Nanny, but I will post more on that later. Let's just say that it was definitely a God thing if we did!! You won't believe the circumstances.
Wednesday, January 2, 2008
Madelyn has been home all this time too (away from school). She enjoyed being home with her baby sister and spending time with Greg and I. She also was able to spend some fun times with my mom and Billy at times when Greg and I needed some rest. I know that she is ready though to see her friends again.
Kathryn has an appointment today with the pulmonologist at 1:00. Our first visit to Children's Hospital! (And of course, since I have to get my preemie with lung issues out of the house, it would just so happen to be below freezing today!) Anyway, please pray for good results at the doctor. Maybe he can make some adjustments to Kathryn's medicines or treatments so that she can get back down to 1/2 liter on her oxygen!