August 28, 2009

Friday, August 28, 2009 4:04 PM, EDT

Showers of blessings! We are so happy that Geneva's oxygen levels are high even though she has fluid around her lungs still. Unfortunately she is back up to two doses a day. Thankfully she seems to respond to the diuretics. We are praying the pleural effusion clears up completely and soon. It would be wonderful if she was clear by the first of October. Avonlea's 11th birthday is on the 6th of that month and that is what she wants more than anything for her birthday. Our next follow-up to check fluid levels is next Tuesday.

I just received a phone call from her neurologist and he was concerned after reading her EEG from Vandy and requested she have another done last Wednesday. However, after reading her EEG from this week, he is very optimistic about a complete recovery. He said it's not uncommon for young babies having heart surgery to have a small blood clot and stroke with seizures happening 3-4 days post-op, which fits right in with when I first noticed Geneva's. She appears to be very alert and responsive so I'm thankful and encouraged by that. She is going to stay on a 2/3 dose of her meds until her next check-up in about six weeks. At that time, if all looks good, she'll probably be able to stop that one. Of course now that it's grape flavored she doesn't mind it so much. It's the Lasix diuretic that she loathes.

As I watch Avonlea hold Geneva, it reminds me of when I held my baby sister. We are also 10 years apart and I can still see her now as that little precious baby. Ginny and her husband, Ryan, are getting ready to celebrate their first anniversary on Monday. Last week they discovered my brother-in-law, Ryan, has cancer and they need to operate quickly to remove a tumor the size of a fist. He has surgery scheduled for Wednesday. Please pray for them and that the Lord would continue to comfort them during this time as only He can.

August 20, 2009

Thursday, August 20, 2009 11:58 AM, EDT

I will enter His gates with thanksgiving in my heart! How I've tried to remain focused on the Great Physician during this time. During times of trouble we lean on Him but I want to do that all the time and pray my children will watch the example of their parents and remember this time as a time of faith.

When we left the hospital, I thought we would only be looking at outpatient procedures unless there was a problem. And, I thought once the pleural effusion cleared up, it stayed away. Well, I was wrong. But, the Lord in his infinite wisdom knows our limitations and I think it's a good thing I thought that. : )

Two weeks ago Geneva had a follow-up echocardiogram which showed some fluid around her lungs and heart and she was placed back on her diuretic (which she LOATHES to take). As I was speaking with her doctor, she mentioned possible future surgeries. Lord willing, she won't need those if her valves continue to function properly. Our prayer has been that they would grow and even become normal sized. That day Geneva's oxygen was at 90% and I was trying not to panic.

After being on the diuretic for a week, she lost about 7 oz or so but her oxygen was back up and at 97%. Thankfully her doctor is wonderful and I felt comfortable calling this week when I was concerned about her coughing a bit more and just being "off". So we went in yesterday and I am so thankful I did. It's a long drive. There and back is just under 6 hours and yesterday was my husband's 40th birthday, but it was worth the trip. I started crying tears of joy when I saw her oxygen level hit 100%!! This was the first time since she has been weaned off oxygen at the hospital that her sats were that high on her own, that I have witnessed! And, during the echo, Dr. Bremer showed me that the fluid is looking better AND her valves have grown some! They are still small and I realize it could change if her heart works too hard BUT I am going to hold on to this hope and encouraging news! Thank you Lord!

This has been a busy month as our entire family adjusts to a new baby and we make some modifications of how we normally would hold our little girl and are extra cautious around her wounds. If she peeps, she has many siblings running to tend to her every need. : ) Apparently nobody has explained to her yet that she has Turner's Syndrome and is supposed to be shorter because she keeps growing. : ) Again, I realize she could slow down later but she's adorable and a blessing no matter what. Also, she just rolled over from her back to her tummy today and didn't care for being on her tummy yet. It's so exciting to watch her discovering her fingers and images around her.

We meet with her neurologist next week for the first time and have another echocardiogram that day. We're praying for that fluid to go away, oxygen levels to stay up and valves to continue to grow and amaze everyone!

Thank you all so very much for your faithful prayers!

Today is Dabney's birthday (Geneva's big brother). He's my middle little man and six years old so I better get busy finishing up his cupcakes.

Many blessings to you all!

July 25, 2009

Saturday, July 25, 2009 7:12 PM, EDT

It's hard to imagine it was just three weeks ago that we were waiting on Geneva's arrival and all that has transpired since then. I told Harry today that it seems like a horrible nightmare and if he hadn't taken so many pictures and video and Geneva didn't have any wounds, I wouldn't be certain it was real. Although we are trying to "normalize" our lives, I know they will never be the same. I shared with a friend today that as Christian parents we often speak of trying to be wise stewards with the children the Lord has entrusted us and to cherish our moments with them but somehow it's more real now. If Geneva sleeps too long, I ask myself if she had a seizure that I missed and is now sleeping it off. I check her breathing often to make sure she's still breathing but not too fast. I pray she does well and lives a long, healthy and prosperous life but the fact of the matter is, we don't know how long she will or any of our children will be with us and I want to make wiser use of our time together then I have in the past.

I'm fairly certain that everyone that has followed Geneva's journey is aware of a wonderful organization I've mentioned in the past, Kari's Heart Foundation.

http://www.karisheartfoundation.org/

We are so thankful for the generosity for the hotel room our family was able to use for the two nights before we all came home together. Those were such precious moments to me. I wasn't fortunate enough to meet little Kari but I had an instant connection to her and her family the moment I heard of her life story. Many of you know of them because I posted links to her website and asked for prayer for her while she was in the hospital during her second surgery. Mary Grace is another precious little lady I look forward to meeting some day in glory. Their lives on this earth were so brief but they both touched so many. Please continue to pray for their families when you pray for ours. They mean so very much to me and have been on my mind often.

July 23, 2009

Thursday, July 23, 2009 5:45 PM, EDT

I'm sorry I'm just now updating. We had some modem problems for a few days. We left the hospital Monday afternoon close to 4pm CST and arrived home just after midnight ET. It took longer because Geneva needed to stop and get out of her carseat and eat and stretch. Everyone was exhausted but it was so nice to be back in my bed in our home in the mountains. Thank you Lord for a safe trip and for bringing us back here together. Now we just need our oldest, Dawn, home from her job in Europe and take some pictures of the entire family together.

Virginia saw the ortho docotor on Tuesday and she's feeling better. No surgery needed. We'll go back in two weeks for a recheck.

Wednesday was a long drive but we were so happy to see Dr. Bremer again. Geneva was able to drop one med and will have her last dose of another tomorrow!! That leaves just the seizure meds. We are so thankful for Dr. Bremer! She is a perfect fit for our family.

Today we saw our family doctor and weighed Geneva. Now we have base weight to use. We are going to try and breastfeed only this weekend and see how that goes. I'm keeping an eye on her output to see if she'll have enough wet diapers and go from there.

Thank you all for the prayers for us during this difficult time. Our prayer requests now are that she'll gain weight and grow with exclusively nursing, no infections or colds, no more seizures and no more surgeries.

Many blessings to all!!

July 19, 2009

Sunday, July 19, 2009 4:39 PM, EDT

Oh how my heart rejoiced seeing my family yesterday. Many tears were shed as I tucked them in and sang them all to sleep while snuggling with my beloved. Preparing to say goodbye this morning was not easy. Just as Harry was checking out with the boys, the doctors made their rounds and said we were ready to go home tomorrow as long as we don't have any setbacks. Oh Lord, please let it be true!

July 18, 2009

Saturday, July 18, 2009 12:19 PM, EDT

Family should be here in about an hour. I'm so delirious that I can hardly breathe! Geneva has a rash all over her body. It could be a contact dermatitis issue or she could be having a reaction to some meds or the formula. It's worse then it was last night. By tomorrow, if she continues feeding and gaining, we could go home if she were off oxygen. We are going to try again this afternoon. I'm not comfortable going home without her being at at least 90% (prefer 95%) for 24 hrs before we leave for home. She'll have another quick echo to see if there is still some pleural effusion around the right lung and see if that is preventing her from getting off that last little bit of oxygen. Very tired but ready for a new day

July 17, 2009 (post 2)

Friday, July 17, 2009 11:15 PM, EDT

I JUST found out that Geneva gained 8 oz in the last 24 hrs.

(EDIT: I started thinking a little clearer and realized there wasn't likely any way she was going to gain 8 oz in 24 hrs. Turns out someone made a mistake in the numbers they gave me last night. She actually gained about 2 oz. LOL That makes more sense. : D)

What is particularly interesting is that she ate a little over half what she ate previously but she was able to nurse a few times. I am very encouraged by that news and with some helpful advice from others, I'm going to dig in and stick to wanting to wean off the formula soon. I think it's upsetting her tummy and we're wasting too much energy just fighting trying to get her to eat the stuff and it makes her diapers stink. ;-)

We just need to get feeds down, gain some weight and wean off that last smidge of oxygen. Then we can pull the final IV line and go home.

Thank you for the prayers, love and support. I thought you'd like to hear a praise report tonight.

Please pray for safety for our family traveling tomorrow and back on Sunday. Also, Geneva seems to be developing a rash and likely hives. I suspect two things but we are keeping an eye on her to check it out. Thank you!!