Tuesday, February 26, 2008

How I know that I am raising my children right

Madelyn has been home with me in the afternoons during my leave of absence. Today on the news, there was a piece about a home that was damaged in the weather last night in Birmingham. The newswoman mentioned that one person had not survived and Maddie looked at me and said that we should say a prayer right now for that family. Wow - every mom's dream that she actually listens to me and learns from me. Now I just pray that it stays with her during her teenage years!!

Kelly

Monday, February 25, 2008

New Pictures

Kathryn getting ready for her sleep study - she doesn't really know what's happening yet!!
Now she is getting the picture - get me outta here - I don't like this anymore!
The next morning after the sleep study - all of her attachments!!
Kathryn in her cool outfit!
All tuckered out!!
Maddie headed to the library to get her library card.
Success!!!
Madelyn and Nini at Kelly's birthday dinner at Sumo!
Maddie and Kathryn in their chairs. Do we have enough toys?

Enjoy - Kelly

Happy 7 month birthday to Kathryn!!

Today Kathryn is 7 months old!! She and I are hanging out at home until it's time to pick up big sister from school at 1:00. A day of rest sounds in order!

Sunday, February 24, 2008

Celebrating Mom's Birthday

I had a wonderful weekend at home for my birthday!! Saturday morning snuggles with both the girls was fantastic (and sleeping in a real bed - not a fold out chair - was phenomenal). We had breakfast and then Maddie and I headed out to get her library card. She is now the proud owner of one and she checked out 12 books her first time around!! Saturday night, some friends of ours stayed with Kathryn at our house while my mom and Billy took Greg, Maddie, and I, my grandmother, my brother Beau, my sister in law Brittany, and my nephew Reed to eat at Sumo!! It was a nice relaxing meal and a great birthday celebration!!

Today, Maddie's choir at church, the Cherub Choir, sang "Father I Adore You" so our nanny Cheryl came over to keep Kathryn so Greg and I could both see her sing. Greg's parents came over too and all of my family was there. We had lunch, cake and presents at my mom's house and then back here for an afternoon of rest!!

It is so great to be away from the hospital and to have all of us under one roof again tonight. God is good!!

Kelly

Friday, February 22, 2008

We are home again!

Well, we are back home again and we pray that this time it is to stay!! We had our family meeting yesterday with the doctors and got a little bit better understanding of Kathryn's diseases - BPD (Bronchiopulmonary Displasia - Chronic Lung Disease) and PHT (Pulmonary Hypertension). I don't think that we or the doctors realized the severity of Kathryn's case of pulmonary hypertension until this last hospital stay. The doctors feel that it is the primary reason that Kathryn's oxygen requirements were increasing and once they increased the Viagra, it seems to be holding steady at 2 liters. At home this afternoon, she has been at a tad less than 2 liters and keeping her sats in the high 90's so that is great!!

I went this afternoon to pick up her medicines at discharge and literally received a small grocery bag full. Praise God for Medicaid for Kathryn or I also would have forked out a house payment to receive them and this was just for one month. The meds she is now taking amount to 10 different ones - 3 diuretics for her BPD, potassium due to all the diuretics, iron, viagra due to PHT, zantac due to the viagra that can upset the stomach, MCT oil for fattening Kathryn up, and Albuterol and Flovent inhalers for her lungs. Believe me, it sometimes takes 30 minutes to draw her meds for the day!!

Being home this evening has been a true blessing. I have not been here for two weeks (literally) and I sure missed it. We all had dinner at the kitchen table together and Greg said that he had missed his girls. Simple tasks that we usually take for granted were wonderful to accomplish this afternoon - such as vacuuming, washing clothes, grocery shopping, and actually cooking dinner without dialing a phone number. We are also trying once again to settle into parenting two children under the same roof! I remember how hard it was when we first had Madelyn to experience the exhaustion of first time parents, the hassles of preparing formula non-stop, washing what seemed like 15 bottles a day, changing what felt like 20 diapers a day, etc. Now I step back and realize how precious those things are. With Kathryn it's much more than that and that too is a blessing.

I thought about it this week and realized that God blesses special babies with special parents. I am not so sure why God considers us special parents, but I feel privileged that He chose us to raise one of His miracles (exhausted, but privileged)!!! We are certainly learning a lot about working together as a parenting team, about what's important in life, and about slowing down sometimes to take a little time to enjoy the little things. Speaking of little things, it's off to bed with me. Tomorrow morning we are all enjoying some snuggle time together, breakfast together and I am taking Madelyn to the library to get her library card. She is so excited - it's like it's Christmas!

Thanks for checking in on our corner of the world. Thank you for the privilege we have of being part of your prayers. I pray each day for everyone that is praying for Kathryn.

Faithfully, Kelly

Wednesday, February 20, 2008

Still no news

This is Kelly again - I have about 10 minutes away from the room since Sunday and it is wonderful!!! So I am over at the Harbour where they are celebrating February birthdays!! (My birthday is Sunday so of course I snagged a celebratory piece of cake!)

The CF Test came back showing that she did not produce enough sweat to get any results so they are repeating it tomorrow. They also told us that they are fine with the tubes in her ears but that they would suggest waiting several months until her lungs are more stable. The current plan is a possible discharge of Friday and a family meeting with Drs. Rowe and Lozano tomorrow at 11:00 to discuss the long term plan for Kathryn.

Please keep us in your prayers. And I am feeling a little relief from my surgery, but am still experiencing some discomfort.

Faithfully, Kelly

Tuesday, February 19, 2008

Quick Update from Dad

Kelly asked me this afternoon if I would jump on the computer and give a quick update as to what the latest is... After 15 minutes trying to remember how to post I am finally starting to write. That what I get I guess?!?

Anyway no major informative news today really. Kelly saw the doctors early this morning and was given the same general initial 7am report that they were continuing to watch her levels and were looking for signs that the viagra was doing what they had hoped. Kelly informed them that Kathryn began her pattern of desats during the night last night and that it was concerning to us that now at 3.5ml of viagra and 2L of oxygen that she was starting to show signs of repeat again. The basic response was the we should probably expect for a while that she will do it off and on until she can get past it, and that as long as the episodes were not too frequent or long in duration that it was not something that we should worry about. Unfortunately for us right now, not being concerned is easier said than done since this pattern is exactly why we have spent almost 6 of the past 9 weeks at Childrens Hospital.

Later this morning Dr. Rowe came to speak to Kelly and reitterated the same basic report with respect to not worrying about the pattern repeating. He noted that yesterday's experiment with feeding every 3 hours was not a success and that he was in ageement with our executive decision as parents to go back to 4 hour intervals and just see if she can take 3-3.5 oz per feed. Dr. Rowe also mentioned that he and Dr. Lazano had consulted yesterday and would like to continue to hold off on cardiac catheter and biopsy procedures for a little while longer. His reasoning behind holding off was that he wanted to add another dose of viagra so that she is getting it 4 times per day. If that seems to help then the plan is to watch for a few more days and then revisit any thoughts on invasive stuff. While I guess this is semi-good news he did drop a mini-bomb on Kelly which is planned for tomorrow...

They plan to perform a "Sweat test" sometime tomorrow morning to test for Cystic Fibrosis. Based on what Kelly told me over the phone it sounds like more of a "lets just rule this out" more than something that they truly feel she has. Nevertheless, I know that it took me a few minutes of web surfing for CF symptoms and causes to settle down about the mere mention that they wanted to test for it. To my surprise I was actually somewhat relieved in what I read related to CF and the advances in care, treatment, and the fact that of all the places we could live Birmingham has one of the best CF treatment centers in the nation at Childrens Hospital. I never really knew that it was a genetic disorder, and that for a person to have the possibility to have it, both parents must have the gene. Even then there is only a 25% chance that they will have a positive test. As you can imagine, Kelly and I both have talked with our families today and we are relatively sure that no one that we are aware of has ever been diagnosed with CF or has been a carrier of the gene. While that doesn't exactly mean that we are positive that tomorrow will result in a negative test, it is something that we feel pretty confident in today. We also think that while Kelly was in the hospital before Kathryn was born that they ran some tests and determined that Kelly was not a carrier, which would again suggest that tomorrow is just a exercise to rule out the possibility for sure. I guess in the end if they do find that she has CF then we will at least know what to deal with... I am sure that is an odd thing for a dad to say given the serious nature of the disease, but at this point we would really like to start getting some more definitive test results so that the doctors can better plan a specific course of action.

We also got a visit from the ENT resident who looked Kathryn's ears again and was able to determine that she still has fluid present. As a result she said that we will most definitely need to have tubes. They have recommended that we keep the appointment next week at Children's South because unless we are sure that Kathryn will be in the hospital for a while they prefer to see the children in office prior to scheduling the procedure. All in all we kind of expected that this would be something that would be needed at some point. For those of you that know my dad (aka grandad) and his lifelong history of ear-related issues and procedures, my children are destined to need tubes at some point in their lives.

I guess that is the major updates from today. We will update tomorrow on the results of the tests and let you know if we are adding in more viagra yet again...

Finally we got an email from a friend tonight at home that was particularly timely and I thought that I would cut and paste to share with everyone. Thanks to Lurenda for passing this along to us and being a friend and support to us!

Malachi 3:3
"He will sit as a refiner and purifier of silver."

This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God. One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study. That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining Silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities. The woman thought about God holding us in such a hot spot; then she thought again about the verse that says: "He sits as a refiner and purifier of silver." She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed. The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?" He smiled at her and answered, "Oh, that's easy -- when I see my image in it." If today you are feeling the heat of the fire, remember that God has his eye on you and will keep watching you until He sees His image in you.

Sunday, February 17, 2008

Where have we been?

Well, since my last post last Monday you won't believe the kind of week we have had. Throughout the week they have tested Kathryn on two reflux studies - the upper GI and the PH probe study of 24 hours. Both returned negative for reflux as an issue. She also did a sleep study (I took pictures - poor thing). That also returned with no true sleep issues such as sleep apnea, etc. Then a CT scan of her lungs to see if she had additional lung damage other than BPD but the scan showed typical lungs associated with BPD. So then around Thursday they began increasing her Viagra to see if it would help any with her pulmonary hypertension. She started at 1 mg 3 times a day and is now up to 3.5 mg 3 times a day. Greg stayed with her starting Thursday night through the weekend because about mid week last week I started to feel kinda bad and was running temps over 100. Friday my mom took me to the doctor because I could not drive. I had a large red place on the back of my upper right leg that was very uncomfortable so for 3 days it had been difficult to walk or sit. Anyway, at my doctor's appointment at 10:00 on Friday, they sent me straight to emergency surgery at Brookwood Hospital for an infection that had abcessed and I had surgery Friday at around 4:00. They had me stay overnight at Brookwood for 2 nights and released me today and Greg has been at Children's with Kathryn.

There is more concern for Kathryn with Greg and I and the doctors because we can't quite figure out the problem and she is really kinda at a stale mate with 7 pounds, 5 ounces. They may consider some more invasive tests this week like the cardiac catheter (which would mean a transport to UAB and under anesthesia) and a lung biopsy. Those are not definites at this point, just things that they brought up to Greg this morning.

Wow, we've been through the ringer the past few days. I am feeling better after surgery and some percocet!! Maddie has spent a good bit of the weekend with her Pawpaw since Greg was with Kathryn and my mom was with me. She had a Valentines' date with him on Friday night and then spent the night with Nini and Pawpaw for the weekend. Greg's parents came over on Saturday to check on every one too. I am headed to Children's to see Kathryn soon!

Please pray over our whole family - me, Greg, Madelyn and Kathryn!! I know that my mom and Billy are tired too with all the assistance that they have been giving to us!! We all need some rest and it doesn't seem to be around the corner by any means.

Faithfully,
Kelly

Monday, February 11, 2008

Results - no news

The nasal swab showed negative for RSV and Flu. The upper GI study showed negative for reflux as an issue. They are possibly doing the sleep study tonight to see if that is part of the problem. After that, we will re-evaluate. Another thing that they may be considering is doing a cardiac catheter. I sure hope that we don't have to go that route. Please pray for some answers!!

Kelly

Sunday, February 10, 2008

Back to the hospital. . . here we go

Kathryn was readmitted to Children's yesterday afternoon because at 2 liters of oxygen, she could not hold her sats. She is on observation right now and they plan to do some procedures tomorrow - a nasal swab to test for viral infections and an upper GI study to see if reflux is an issue for her. They also may do a sleep study since she drops her sats more at night.

We are so tired of the ins and outs of hospitals!! We would like to get somewhere and stay put!! Please pray for clarity for the doctors. At this point, I think that it is one of two things. Either she has another issue they aren't aware of (thus the route towards testing for viral infection, reflux, and sleep study) or the mix of her medicines is still not right for her!! At any rate, I feel like we are living in an episode of House and the doctors are trying to figure out what is wrong. I hope that they get it soon.

And, by the way, now I am sick!!

Please pray for all of us!!

Faithfully, Kelly

Saturday, February 9, 2008

I finally figured out how to load videos!

video

Kathryn playing!

video

Just to compare - a video from one of the early days! Boy do we have a lot to be thankful for!

Kelly

More pictures

Maddie and her two best girlfriends at a birthday bowling party!Hannah Montana made a guest appearance at our house - bet you didn't know that we knew her!
Maddie and Kathryn!


Maddie shows Kathryn the ropes of her new toy. Notice all of Madelyn's jewlery - she said that she was getting pretty for Daddy!! I have a girly girl on my hands!

Enjoying the new toy!
Kathryn played herself to sleep - notice she can't even hold the pacifier in!



Thursday, February 7, 2008

What's been happening around our house

Well, we've settled into being at home again I think. Monday morning, our Nanny, Miss Cheryl, started and jumped right in taking care of Kathryn. Like anyone, she was a little cautious with the monitors the first day and I explained that with time, she would get comfortable knowing which alarms were real and which were "equipment errors." (I think by Tuesday she understood exactly what I meant!!!) We spent Monday getting familiar with Kathryn, her feeding schedule, her medicines, her physical therapy exercises, her chest percussion therapy (to help with her lungs), and all her toys. Maddie went on to school and I picked her up that afternoon leaving Cheryl and Kathryn twice and I felt so comfortable with her here!! Monday afternoon, Greg came home around 3:00 and fell asleep saying that he did not feel well - for him to be home that early, you would know that he did not feel well! Anyway, I pressed him to go to the doctor on Tuesday and he did, ending up with a decongestant and nose spray. He is slowly getting better.

Tuesday morning, Cheryl had gotten here at 7:00 am and we were talking and around 7:30, Kathryn spit up. I know that seems like no big deal for a baby to spit up, but the only other time she has ever spit up was when she got her Synagis shot 45 minutes after a feed. So I was a little concerned. Well, Cheryl and I jumped right in and cleaned up and gave Kathryn a bath. Maddie went on to school and I headed to the Health Department. Because of Kathryn's low birth weight, she has Medicaid from the state. Well, because she has Medicaid, she qualifies for WIC because she has specific nutrition requirements. I double checked with our nutritionist in the pulmonology clinic because I thought that WIC usually depended on income, but she said that in our case, in did not because Kathryn had specific dietary needs and was receiving Medicaid due to her birth weight. So, I spent two hours at the Health Department and got what we needed. Then I headed to the DMV to pick up our temporary handicap hang tag. Since Kathryn is on supplemental oxygen, the pumonology clinic approved a hang tag for us so that when we take her to doctor's offices, we can park as close as possible. Surprisingly, the trip to the DMV only took 15 minutes and I was out the door. By that point in the day, it was only 45 minutes to the end of Madelyn's school day so I checked in with Cheryl and kept on with my errands. I got Kathryn a new toy at Babies R Us, ran by the drug store, ran to Publix to get the first month's worth of formula, and picked up Maddie from school. After her minor spit up early that morning, Cheryl said that Kathryn had a great day.

Yesterday morning, Cheryl called and said that she wanted to run by the doctor's office before she came over because she had a stuffy nose and didn't want to be around Kathryn until she could get some sinus medicine. After she went to the doctor, she called and said that her doctor said she had the flu. So, she is on some big guns medicine and she is taking today off too! My mom has also been sick (and staying away from our house)!

My prayer this week is that Kathryn stays well. With Greg, Cheryl and my mom sick, Maddie and I have escaped it so far. I just pray that Kathryn stays well and home!!

Kelly

Sunday, February 3, 2008

Sunday morning

So, now that we have finally had time to settle back in, wash some clothes, clean up a little, and enjoy living under one roof again, I thought I would post. Kathryn finished her round of antiobiotics on Tuesday morning and they repeated the spinal tap on Tuesday afternoon. She did great through the tap and the results were clear meaning no signs of meningitis remaining. We stayed at the hospital until Friday morning because the doctors were helping us get the Viagra approved by insurance for Kathryn. Apparently men can walk into their doctor and ask for some and have no problems getting it approved through insurance, but getting the prescription for babies for the original purpose that the medicine was invented is a little more difficult. Apparently, the prescription would have been close to $500/month if not approved. I told Greg that I might have to consider a job on a street corner in order to afford that, but since I had now had two babies that I might not even be able to rake in that much per month. Fortunately for us, I won't have to go that route. Kathryn has Alabama medicaid due to her ELBW (extremely low birth weight) so Medicaid approved it for her. (Thankfully!!)
Before leaving the hospital Kathryn had a hearing screen on Tuesday since she had been on an antibiotic course. One of the side effects for antibiotics in small babies is that it can cause degrees of hearing loss. Well, Kathryn passed in one ear and failed the test in her other ear. The audiologist then did a second test (called a tympanogram?) and determined that Kathryn's eardrums were recessed. So they came back Thursday to repeat and found that she now had fluid behind her ears. They don't think it would have been an ear infection since she had just been on two big guns of antibiotics. So we will be following up with the audiology clinic at Children's in 4 weeks. Basically, their thought is that if she still has fluid at that time, they will see us again a few weeks later, and if she still has fluid at that time, they make insert tubes in her ears. If I remember correctly with Maddie, getting tubes may limit the amount of ear infections that Kathryn would have so that might be a blessing for her. Anyway, we will know more about that later. We left the hospital with Kathryn on eight medications this time and with follow up appointments with audiology, cardiology, pulmonology, pediatrician, newborn follow up clinic for babies born in Alabama under 1000 grams (Kathryn was 400 grams at birth), and the eye specialist for followup on her ROP surgery done in the NICU. It will be a busy month for us and those are just the first round of appointments. Then there will be follow ups to the follow ups!
Three wonderful things happened while Kathryn was in the hospital. 1. She found her hands and now inserts her whole fist into her mouth. 2. She found her smile. 3. She sleeps through the night - she takes a bottle at 10:00pm and then sleeps until 6:00am.
Here are a few pictures from our hospital stay.
This is Kathryn's first hospital room on the night she was admitted at 1:00 am.

Her first tub bath!

Finding her hands!


Maddie and Kathryn in Kathryn's second hospital room (after her short stay in Special Care).

Kathryn and her prayer quilt!


Kathryn and her contagious smile!

Faithfully, Kelly

Friday, February 1, 2008

WE ARE HOME

We are home - I will update more later but we are trying to settle in from the last three weeks!!

Thanks to all for the prayers for the latest hospital trip!!

Faithfully, Kelly