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!!

July 17, 2009 (post 1)

Friday, July 17, 2009 9:31 AM, EDT

One thing I highly recommend for mothers, especially of young children, are two CD's from Serene and Pearl from Above Rubies. Life can be hectic with little ones and you're trying to have a nice home that runs smoothly and then perhaps add in homeschooling on top of that. The music helped me keep things in perspective as I went about my hecticness. I've always tried to remind myself that their are seasons to our lives and to appreciate each season to it's fullest. I think of that during this time when my heart is torn. I want to be with my family and comfort my Virginia Pearl (7yo) and give her extra lovin' and help her stay comfortable with a broken collar bone. I want to snuggle with Dabney (almost 6) and hear him tell me how pretty I am like he likes to do every morning. I want to smell Weston (4) after he has a clean bath and see him sleep with his little bottom in the air and see him show me some of his new dancing or kung fu moves. I want to watch Avonlea (10) take care of Virginia and dote on her like a loving sister and have one of her drawings and hear one of her stories. I want to watch Jay (12) work with all the other children on the 10 commandments and teaching them Latin. I want to feel my husband's arms around me and have him pray with me and assure me that everything is going to be all right. And I want to be here with Geneva and love every second we spend together, getting to know her personality, reading the Bible with her, praying over her, fixing her hair and cheering her on as she makes progress...just cherishing our moments together.

Geneva was supposed to have her MRI last night at 7pm. I was concerned about the dye they use for the contrasting images. Girls with Turner Syndrome will often have kidney problems and the dye can be hard on them. However, I also wanted to have the MRI done before she was 8 weeks old because I didn't want her to have to be sedated for that testing. We want to know if there is a tumor causing the seizures but they appear to be managed right now and we were told the plan of action would be no different for the moment even if they did see a growth. I prayed and asked the Lord to not let it proceed if it wouldn't be the right time or unhealthy for her. As we pulled up to the MRI department, we were told the day shift didn't put Geneva in the schedule and we would have to come back in an hour. The problem with that is that I adjusted her feeding schedule so she would be snug as a bug at 7pm for the MRI. We didn't get back down there until after 8pm and by that time, she was rearin' to go and it was getting closer to time for her medicines and next feeding. Needless to say, she was squirmy. It wasn't long before the radiologist came out and said she wasn't going to proceed with the MRI because she didn't want to inject the dye in her and have her squirm and not get any good pictures just to have it repeated. Also she had just met the bare minimum level required that morning for kidney function and she didn't want to chance it. We should find out this morning what neurology said about what they saw. I've been told second hand that there was nothing that jumped out at everyone right away so we are thankful for that.

Since Geneva had to be transported and she couldn't quite stay off the oxygen, she had to be put on a tank whose smallest amount of oxygen was over 4 times the amount she was on before trying to wean her off. So, last night the nurse tried weaning her down to point 5. Now she is down to point 25 and the monitors keep beeping but I don't think she's dipped below 85%. She needs to stablilize again at that level and then try to get off completely.

Yesterday she was able to breastfeed and we were both so relieved to have that special bonding time. She was feeding okay on the "enriched" breastmilk before then. Well, now that she's had some of the good stuff, she is boycotting the bottle. It takes around 30 minutes for me to get 17cc in her whereas before she would get 60cc in less than 20 minutes. I put the bottle in her mouth and she spits it out because it doesn't taste good. One of the staff said tastebuds aren't developed yet and she shouldn't be able to taste it but that is clearly not true. I tried telling them I think she is burning more calories fighting me with the bottle than she is taking in! We are going to try seeing if she will take the bottle from the nurse at the next feeding at noon. Meanwhile, a supplemental nursing system has been ordered to see if she will take the formula while she is nursing. Jennifer, I may have tossed in the towel with the pumping by now if you wouldn't have encouraged me, along with Christine, Katherine and others. Thank you. I really am completely wiped out with pumping and bottles but I see an end in site. It might be several weeks yet but I do see an end. I was reminded that I'm not getting enough calories either. If all the above fails and we can't feed with a syringe, they want to put in a feeding tube.

Since she's still on oxygen, they can't remove her final IV. I hate to have it in there because of risk of infection but it's better than having to poke her every time for a blood draw. Poor baby. Since it's uncomfortable for her to nurse with that against my body, she's only nursing on one side until that is removed.

I'm excited to see my babies!!! Please pray for Virginia and all while they travel tomorrow. Virginia is taking Tylenol with codeine and rotating that with Motrin. Even between the two, she is still in so much pain that she has had on the same dress since Tuesday. She's getting sponge baths and fresh unmentionables but she can't even take off the dress. She said she is okay traveling in the car but that is going to be 12 hrs for her and I want her to be so careful and not hurt any more. If it hurt her to sit in the carseat then I would ask them all to stay home as I couldn't bear the thought of having her there with friends by herself while I saw the others but she insists she's okay. It's just walking and sleeping that hurts so we'll have them come and then get her a wheelchair while she comes to see us in the hospital. From what she and Harry are describing, it's hard to imagine that she will be healed in just about 2 1/2 more weeks but that is what we are being told.

Cherish your moments with those you love.

July 15, 2009

Wednesday, July 15, 2009 10:22 AM, EDT

Isaiah 58: 8-9a

Then your light shall break forth like the morning,
Your healing shall spring forth speedily,
And your righteousne

ss shall go before you;
The glory of the Lord shall be your rear guard.
Then you shall call, and the Lord will answer;
You shall cry, and He will say, 'Here I am.'

I was reading in James 1 yesterday when Geneva and I had our quiet time and I had previously made a reference to Isaiah 58.
When I read this I just broke down. He is there for us always. I know that but sometimes I have to quiet myself down even more to be able to get closer to him. Yesterday was one of those times and I was so encouraged and blessed by His Word above.

Geneva has such sweet nurses and staff. Yesterday her nure made me prop my feet up and sleep all day after I had my ultrasound. I'm very thankful because my blood pressure went down and so did the swelling in my ankles. They are about 1/4 the size they were previously. Although not normal, they are much, much improved, as is my blood pressure. I found out that the numbness in my right leg is likely a side effect from my spinal and may take some time to go away but that isn't a top concern as long as I know there aren't any immediate health risks that would prevent me from taking care of everyone.

We had a pleasant surprise last night when the other chest tube came out 12 hrs early! Oh, what joy I had when I could pick up my baby girl without as much fear of pulling on that and I could stand on my feet and not think they were going to collapse under me. I know she is so much more comfortable now. Geneva has been doing great with her feedings (except when she was on morphine) and we think we have a formula that will work. She'll need to put on some weight and have some extra calories while she is recovering from surgery and then we can gradually try switching to breastfeeding over a couple of months. I'm thankful for those that rallied to get me a breast pump here at the hospital. That really means a lot to me.

Oxygen levels are around 98 to 100% on the point 1 level so she is going to hopefully be weaned off this morning.

Her diurectic will begin to be given by mouth this morning now that the chest tube is out. I'll have to learn how to give her all of her medications but I'm not sure how many that will be. I think there are four or five of them.

Our main concern right now are her seizures. They seem to be under control but every time she moans, I run over there to check on her and see if she is having one or if she's just making normal baby noises. I have so much to learn. If it weren't for the seizures, I would be comfortable leaving. The goal is to get a contrasting MRI to see if there is a growth anywhere but that is something that could be done at home if not here but our preference would be to know something before we go home. They could be nothing or a tumor or effects from going on the bypass machine or any number of reasons. We may never know. She might need to be on medication her entire life or she might be weaned off this year.

One of Geneva's incisions is still weeping a little and I'm trying to be extra cautious to make sure that doesn't get infected.

She is sleeping peacefully next to her new toys and one that sings her a lullaby she particularly likes already. Thank you Karen and family. That was a nice surprise.

Our 7yo daughter, Virginia, did break her collar bone when she fell off the swing. We don't know yet if it is the same one she fractured 5 years ago. She's in a sling and I need to find an orthopedic doctor in our town where she can get it examined next week.

Another blessing is that we are so happy with our pediatric cardiologists. One of the nurses said she's never known people to be so crazy about two cardiologists as much as the two we know who will be joining practices next week! Thank you Lord for that sweet blessing too. : ) I feel so much more comfortable knowing they will be providing care to our little angel.

I'm feeling a bit more like a normal "new mom" in that I am still terribly sleep deprived but giddy about our baby! I need to try and rest as much as possible because there will be plenty to do when we get home. Thank you to those who've stopped by. I'm sorry that I don't even remember everyone's names or maybe even who I've spoken to. It just seems like everything over the past 9 days have been a big blur to me. Again, please know how much we appreciate all your prayers and support.

July 14, 2009

Tuesday, July 14, 2009 10:07 AM, EDT

Hi all. I want to thank everyone so much for your outpouring of love and support. We had a rough night last night. Oxygen leevels continued to drop and fluctuate. It's amazing to me how much a decimal point can now mean to me. We are going to wait on the feeding tube for 24 hrs and see if Geneva can pick up feeds. I think I saw her have a seizure around 2am but can't say for certain. Neurology came in and said they want to rule out some things. When I asked about it further, I was told they want to rule out a possible tumor but need to do a contrast MRI to find out. Because of her poor current kidney function, they have to wait.

I'm waiting for a call from doc for me as my numbness in right leg is now up to my hip and I'm not sleeping at all.

Please also pray for our 7yo, Virgin

ia Pearl. She may have broken a bone yesterday while playing at cousin camp. She's having a great time but very homesick, as we all are.

I can't really talk to anyone right now on the phone as I'm just physically and emotionally drained. Thanks for the love, prayers and support!

Pressing on,
Stephanie

July 13, 2009

Monday, July 13, 2009 1:17 PM, EDT

Many praise reports today! Neurology came in and we found out that sedation is not needed for the EEG. They want to do an MRI after her other chest tube is out. She is sleeping through the EEG right now. She has made a couple of moaning noises and I don't know if she was having a seizure or not but something changed on the screen and her oxygen levels dropped. I should have some kind of consult this afternoon with the neurology department.

Platelet levels are beginning to stabilize. They are convinced that she shouldn't have a lifelong problem since I had such low platelets during pregnancy and she had surgery, hopefully all will stabilize within the next two weeks and she won't need any more platelets but might need a couple more.

Pleural tube is getting better. Still has output but not as much, chest x-rays are clearer today than they were yesterday. She is going to switch back to enriched breast milk again and see if she can maintain those levels. If all looks good, pleural tube could come out in 2 days! Thank you Lord! I would rather it come out when safe then have to go back in again but that is a huge milestone and one I very much look forward to seeing.

Harry was so thankful for the meals from our homeschool friends. Thank you. The boys might have eaten waffles and cereal all week had they not had something else there. : )

And to add to all the blessings, some of our sweet neighbors did more yard work for us then I think the yard has ever seen before. My mother-in-law said there were three mowers and a weedeater going all at once. I hear it looks beautiful so I told Harry to take a picture. Thank you all so much!

July 12, 2009 (post 4)

Sunday, July 12, 2009 10:25 PM, EDT

The new seizure medicine seems to be working. Thank you Lord that we haven't had any seizures since 1pm!! I just had the most precious "coo time" with Geneva since she's been born. She's alert, swaddled, looking at me with both eyes and I prayed and prayed that she would just give me a little sound and then we started having some chat time. Oh how that encouraged me so.

EEG is scheduled for the morning. I didn't know it required sedation. The good news is the new meds stopped the seizures. If I understand correctly then that means the bad news is that she likely won't have a seizure during the EEG which means we won't know what type of seizure she is having. I'm so confused.

Also a blessing that sweet Amy stopped by with some real food and even cookies. : ) I had never met Amy before but thank you Jennifer for asking her to come see me. : ) And you were right, I do have to continue hoping.

July 12, 2009 (post 3)

Sunday, July 12, 2009 5:59 PM, EDT

Thank you for all the kind words of encourageme

nt and support. So many friends and family have asked what they could do for us. I know and I've been in your shoes and read about these precious heart babies and want so badly to do something for those families that are hurting. The fact is that only God can heal her or take away her pain which is all I want right now. Just please continue to pray for our entire family. If we are here much longer then we will have some physical needs that I could use help with but I just can't allow myself to go there yet.

Geneva's chest tube won't be out for awhile yet as there were three pediatric traumas that came in since I met with the surgeon. It should be some time tonight if nothing else happens. We are praying that by changing her formula and using some kind of diuretic (if I understand correctly) that some of that will be drained away from her lungs. The long chains of fatty acids need to break down into smaller ones. The only way I can think of describing it is that right now they are like pieces of spaghetti and they need to be like pieces of rice to be assimilated by the body and not pool up around the lungs.

I heard some odd noises come from her last night and again today that I mentioned to the nurse. X-Rays came back fuzzy and confirmed my fear that fluid might be developing around the lungs. This could very well be from knicking the lymph node.

She is up from .3 to .8 and now 1 liter for oxygen which is not good and she has had low saturation levels. We're trying for .5 now to see how she does.

I'm going to put my feet up again and seek some comfort from the Lord. Harry has been so wonderful and reminds that we need to just take one step at a time and sometimes that means just taking a minute at a time.

July 12, 2009 (post 2)

Sunday, July 12, 2009 12:39 PM, EDT

One chest tube will come out in the next hour. The pleural chest tube hit a lymph node in the thoracic cavity. It could take days, weeks or they could have to go back in to fix it and she likely wouldn't fair well. I can tell by the vagueness of the doctors that this could be a potentially grave situation. Seizures about once an hour almost with regularity. Please pray for comfort for her, whatevever that might be.

July 12, 2009 (post 1)

Sunday, July 12, 2009 7:41 AM, EDT

When we first began this journey, I used "if" often. "If" she has a genetic disorder, "if" she has to have surgery, "if" we make it home together. I knew the Lord was the only one who had the answers to those scenarios.

It seems so long ago that Geneva was born and yet it was a mere 6 days ago. Will I ever stop hearing alarms in my head from oxygen levels dropping? Will I ever get to hold my baby without tubes all over her body? Will I get to take her home? Will I know if something is wrong if she does come home?

Again, I don't know but I trust the Lord and His perfect plan and yet my heart aches. I ache when I hear the baby on the floor cry with no one to console him. I just want to grab his bed and move him next to us so he can get some love. I want to stand up and be next to my baby without leaving her side. I ache for those on the medical transports when I hear the helicopters fly overhead day and night and I pray for those patients and their loved ones, the pilots, crew and doctors. I ache to hold my other children and be with them. And I ache so longingly for my precious little girl. How I long to have her cuddled snuggly by my side.

It's difficult to imagine that just two short days ago everything looked so optimistic and it appeared as though our family would be reunited by Tuesday or Wednesday at the latest. Geneva was not only meeting but surpassing all goals set for her. And then everything changed.

I mentioned before that I saw her make some startle type movements her first night on the new floor. I noticed again in the middle of the night and then once more in the morning. Now that I know what she sounds like before beginning, I'm guessing she had several more episodes during Friday night. I thank the Lord that she had one when all the doctors were outside her door yesterday. Things seemed to go downhill from there. The "episodes" continued all day yesterday. After several hours of requesting a consult, the neurologist finally showed up. She was started on anti-seizur

e medication even though we requested she first have an EEG. The neurologist isn't convinced she is having seizures and told us she would have an EEG today and hopefully we would catch one of these episodes and know if it was a seizure. However, right before I went to bed last night, I was informed one wasn't ordered and they don't know if they will be able to reach someone since it's a Sunday!! Needless to say, I'm not happy right now and am going to rest a little more so I can throw a fit if necessary.

We did have some good news yesterday and that is that the CT scan showed no blood on the brain! Thank you Lord. Her electrolytes and other blood tests came back good and her platelets doubled after her transfusion. I was also able to bathe her, put on a little shirt and some new hairbows in her hair after it was washed. I love the smell of a clean baby.

Prayer requests:

Originally, we thought the chest tubes would be out yesterday but the one around her pleural cavity is having a lot of output. That needs to slow down so they can come out and we don't want any extra fluid around the lungs. Our cardiologist informed us that this could be a potential problem, especially with girls with Turner Syndrome.

Oxygen levels - her oxygen level has been doubled since yesterday. She was so close to being weaned. Now she is up to .7and yesterday was on .25 and .3. Her oxygen levels are difficult to maintain above 90%. Once the chest tubes come out then I heard it's easier to get off the oxygen because usually children take deeper breaths when the tubes are out but it's not a good sign that her levels continue to drop.

My cankles - Feet have been up all night but after just pumping then holding her and feeding her, they are almost back where they were hours ago before elevating them. Also, I broke out in hives on my feet last night so I had to take Benadryl which meant dumping two pumpings of breast milk as well. Then I woke up 2 hrs later literally shivering and chattering my teeth and it was just about 75 degrees here. I suspected I had a fever yesterday and might be developing mastitis so that might have been from a fever breaking.

We will find out if these are seizures and if not, what they are as everyone is baffled right now. I mentioned to the doctors that if it wasn't an infection or something that could have started because of days post-op, they needed to look at what changed from the PCICU to this room because that's when I started losing a connection to her and she began to have them. I suggested they start with changing the pain meds which they did and she is much more alert and making eye contact again!! But, she's also still having these "episodes". Oh it is so painful to watch. The most difficult part of all is that she knows right before they are starting and it's either painful, scary or both because she let's out a moaning cry and then moans or cries occasionally through them. And she's helpless and there is nothing I can do to fix it for her so I stand by her side and cry and pray.

My sweet little Geneva, Mommy wants to just take all these tubes away and take you home with me. You are our strong little girl and have been through so very much in your short little life. I'm so sorry I can't help you any more than I have.

Oh Father, I want to love on this precious baby and raise her to love You but all I ask is that she not suffer. I will miss her so if she's not with us but please, please don't let her hurt like this. I really don't know how much more I can handle.

July 11, 2009 (post 2 and 3)

Saturday, July 11, 2009 3:40 PM, EDT

Geneva received her platelets. We should be speaking with neurology soon. She had 4 episodes in the past one hour. Hopefully the CT scan will be clear.

Saturday, July 11, 2009 4:03 PM, EDT

Since the episodes are happening more frequently and lasting longer, the doctors are going to give Geneva an anti-seizur

e medicine, Keppra, to see if those control the episodes.

July 11, 2009 (post 1)

Saturday, July 11, 2009 12:13 PM, EDT

We do need some prayers as the jerking movement I've seen her make very well could be caused by her brain bleeding. She will have a ct scan likely today. We're very thankful because she had an episode while the doctors and students were standing outside the doors during morning rounds. Until then I was the only person present during them except towards the end of one with night nurse. We appreciate the prayers so much. Also, Geneva will be receiving some platelets today. About 30 seconds after it dawned on me that she might have an inherited blood clotting condition, my mother called and mentioned it herself. (Thanks Mom.) I mentioned it to the nurse and asked her to notify hematology to test her. If so, that could explain the low platelets perhaps. If she is able to maintain and stabilize her count, we can get the chest tubes out soon. At least one would have come out today except for the platelet issue. Once those tubes are out, we can hold her and try getting her to start nursing after her bottles. Praise the Lord for all things. Although it might seem like a small answer to prayer, it is huge to me. I am now getting twice as much milk from the breast pumping and it equates to almost exactly how much she is currently taking in for her feedings!! I'm ecstatic.

July 11, 2009

Saturday, July 11, 2009 8:40 AM, EDT

Geneva was moved to her new floor and new room yesterday and out of ICU! Praise God! I was able to move in with her. I got virtually no sleep but it was such a blessing to be near her and to comfort her and change her diaper when she needed. One hour she was particularl

y fussy and nothing I did seemed to console her. The nurse walked in and pointed out her diaper was dirty! We had to chuckle a little. I mean, how many children do I have? You would think I could have thought to check! :-)

I am concerned about something else. Three times in one hour last night, she began to have an odd "shake" to her. It looked somewhere between hiccups and a seizure. She did it one other time during the night but stopped when she was swaddled and the nurse thought it might be because she was cold. She just did it again right now. Each time she does it, her oxygen levels seem to drop slightly and it's only her left leg that shakes and not the right and she moans right before it happens. Something in my mommy instinct is just telling me it's not right.

She also has a tendency to not make as much eye contact as she used to. They've changed her pain medicine to oxycodone and it might have something to do with that. However, she only received 2 doses yesterday and she could have received 12. We don't want her to be in pain and the chest tubes are very painful but at the same time, we want to be careful that she only receives as much medicine as she really needs.

We were told that we might be going home as early as Tuesday or Wednesday. Our next major obstacle is for her to have her chest tubes removed. It appeared as though one might have been removed today but I was just informed that her platelets have always been very low. They were hanging out around 35 but have dropped to 25. Once they hit 20, she'll need a transfusion. Until those are more stable, the chest tubes will remain. After those are out, we can hold her and I can begin to try and allow her to breastfeed. Despite all the wonderful help from friends, I'm just not very successful at getting the milk from me to the bottle. Right now every other bottle is breastmilk and every other one is formula. That is really frustrating. I've only used bottles one time and that was for our baby goats and lasted less than 48 hours before turning them loose to their mothers to feed them. I don't know who ever said bottle feeding was easier than breastfeeding but that is so not true. I think I'm going to ask if perhaps we give half the bottle breast milk and half formula.

I've been asked by several how I'm doing personally. Physically I'm a bit of a mess. My feet are so swollen that I can't feel them, even after keeping them elevated. The incision area hurts from the c-section and I have a couple of other issues. Emotionally? Well, that is really difficult to answer. I am so thankful that she is doing so well. Scared of what the future might hold. Hopeful because I trust in the Lord and His perfect plans. Sad for others we've known recently whose daughters are no longer with them. What if I do something wrong? What if I have to perform CPR on her? How long will she be with us? What kind of obstacles will she face? All of these are real and genuine concerns. No, I'm not perfect. I'm not a perfect Christian either but I've never claimed to be. And yet there are some who might read this and not understand this is coming straight from a mother's heart who is simply being honest and real.

The outpouring of love for us has been overwhelming and very much appreciated. We can never thank you all enough.

July 10, 2009

Friday, July 10, 2009 12:25 AM, EDT

This was a good day. Geneva's breathing tube was removed, and though her throat is sore, she is eating quite well. Her stomach is only the size of a marble, but she swallowed an ounce in one feeding. The doctors are so impressed with this that they say she might have a room of her own tomorrow and could be released to go home by Wednesday!

July 9, 2009

Thursday, July 9, 2009 8:23 AM, EDT

I spoke with the nurse at 2:30 this morning before I doing my middle of the night pumping. She said Geneva is a little fighter. Although that is a good thing, we need her heart rate to stay down. Poor precious thing is just so young and doesn't understand. My heart just aches for her.

She is being weaned off the ventilator to see how she does and whether or not it will come out today or tomorrow. She has a CPAP for 1 hr and then on the ventilator for 3 hrs. So far she's doing great with the CPAP and oxygen levels are good. I think they will now try half and half and see how that goes. I would rather we take things a smidge slower so we don't have to take out the breathing tube and then reinsert it. After her tube is out, we need to keep a close eye on her to make sure she doesn't get fluid around her lungs or develop pneumonia.

N

ormally when a person has a ventilator in, no noise comes out. They can still cry but no sound is heard. Well, I said normally. Geneva is above normal. :-) When she cries sometimes a little squeak will be emitted. Watching her little eyes and seeing her mouth open and trying to cry puts both of us in distress. Oh Lord, what I wouldn't do to take that pain away from her. Please show me how I can comfort her best. Please be with us all and comfort us as only You can.

I was confused about her lactates (and still am to some degree). We needed those to be lower, not higher. They are doing better and were 2.5 at 7pm last night and were down to 1.8 by early this morning.

Yesterday morning I noticed her belly looked distended and mentioned it to the nurse. The doctors made their rounds and said she was swollen and they would need to put in a PD drain if it continued. Her urine output needs to be higher on it's own. As of last night, she was processing about 4ml/hr and it would be great if that could climb to 6ml without a diuretic.

I'm doing fairly well but my legs, particularly my right, continue to swell. There is a concern for blood clots developing. I'm trying to balance a need to be moving around and a need to keep my feet elevated and off my feet.

Thank you for your continued prayers for us. I miss my other children and want our family to be all reunited soon.

Wednesday, July 8th 2009

Wednesday, July 8, 2009 7:40 PM, CDT

Today has been a difficult day. Geneva's not as sedated as she was yesterday. When we saw her this afternoon, she kept trying to open her eyes when she would hear my voice and she opened her mouth as though she wanted to cry but couldn't. I tried soothing her as much as I could but her heartrate continued to accelerate to close to 180. After that, I thought it best to just hold her hand a little and sit down and watch from a distance. It just absolutely breaks my heart to see her in pain. Oh how I wish I could take it all away and comfort her and make it all better. I pray the Lord will comfort her as only He can right now. We did receive good news this evening that she is no longer on a Dopamine drip and she may start being weaned off the ventilator. Once that happens, she can again have her pacifier which brought her some comfort the first 24 hrs of her life.

Harry has been a trooper, walking over 2 miles every day to take me to see her. Even though I haven't been walking that much, I'm starting to swell quite a bit.

We aren't sure where we will be staying after I'm released tomorrow. Praise the Lord, a sweet person came to my rescue and is getting a breast pump for me to use while in the hospital. Amazingly an email was sent out to the homeschool group asking if anyone was headed this way (about a 6 hr drive) and lo and behold, there was a couple headed this way just shortly after it was sent out. Praise the Lord for His provisions and for sweet brothers and sisters in Christ. Harry is meeting them now.

I miss my other children immensely and they all want to be here to help and see their baby sister. Lord, please protect them and comfort them also. Keep everyone safe while traveling and please allow us to be together very soon.

Prayer request: She has a distended belly right now and if that doesn't improve, she may have to have a PD drain to get the fluids off her belly. I pray that improves on it's own.

Thank you all so very much for your love and support!

Tuesday, July 7th 2:30 PM CDT

Tuesday, July 7, 2009 2:30 PM, CDT

2pm - just as I was getting ready to send this email, we recieved a call that surgery was faster than expected! Praise the Lord, they were able to close up her chest and it appears as though both chambers and all valves are doing their jobs! : ) The next few days will be touch and go and we'll pray through one hurdle at a time. : )

Tuesday, July 7th 11:55AM CDT

Tuesday, July 7, 2009 11:55 AM, CDT

I just got off the phone (11:55am CST) with the OR and she is doing very well. The next hour is crucial as they will try and take her off the bypass machine and check her bleeding to see if she will have to have her chest left open or it will get to be closed back up.

We were told that it is very likely she has the Turner syndrome. If all goes well with the surgery then there is a good likelihood that I will still have to be here with her for possibly several weeks to get her to learn how to eat. Babies with Turner syndrome have a tendency to have extra fluid buildup around the lungs and also have a harder time eating, resulting in a feeding tube for some time. Please pray that all goes smoothly. There is still a wait and see period to know whether or not this surgery will correct her problem and be the only surgery she will have to have. If not, we will have to evaluate with the surgeon as to whether or not to attempt the 3 step surgery. It appears to be the consensus that the doctors agree that babies with Turner Syndrome do not fair well with those surgeries and we will have to make a decision as to whether or not attempt it or just love on her for the time we have her with us. As always, we cherish your prayers!!

Tuesday, July 7th 9:30am

We were orginally told it would likely be Wednesday afternoon before Geneva went in to surgery. However, we were informed last night by one of the NICU nurses that she was scheduled for 1pm today. Our original plan was for her to be baptized this morning and we could spend some snuggle up and cuddle time with her and then she would be off to surgery. Thankfully the pastor was coming out this morning. Just as they were preparing to take out my IV and we were headed over for her baptism, we received a phone call that surgery was moved up to this morning and we rushed over to see her. The surgery was delayed for a short time so we could hold her and get her baptized. Harry didn't even get a chance to hold her but I held her during her baptism and we snapped a few pictures.

She was born yesterday morning (July 6th) and was our smallest baby weighing in at 8lbs 9oz and 19 1/4" long. She has beautiful long, dark hair that has a little curl to it.

July 6, 2009

Friends, we just received some wonderful news from the cardiologist, but first I'll give you our status.

Steph got through the c-section like it was nothing, and was up and walking around once the morphine wore off. It was her first, and I got to watch, but the doctors didn't want my help, even though I told them that I've helped deliver goats. Since I did watch, I'm in awe at how tough my wife is.

The hardest part was having the baby whisked away after only a kiss on the cheek. It took about 12 hours to get an IV in her umbilical cord, x-ray her, get an ecocardiogram, get another IV in her forearm, and finally clean her.

It was evident at birth that there are at least markers of Turner Syndrome, which is only found in girls (missing X chromosome). We're still waiting for the results of the chromosome test to verify this. If she does have this, it's a miracle that she survived, because 98% of such cases end in miscarriage.

Turner babies don't have a likelihood of success with the triple or quadruple heart surgeries that we anticipated. So when the call came in just now that her aortic valve, mitral valve, and left ventricle are borderline acceptable, it was a tremendous relief. I know God heard your prayers, and I owe you more than I could ever repay.

So the only problem remaining, as far as we know, is a repair of the aortic arch, which is a one-time open-heart surgery in a couple of days from now. Since the valves won't be touched, she has a good likelihood of success. Right now we have a concern about plural effusion, which is excess fluid around the lungs. If she has Turner's, she won't grow very tall and might have some vision and hearing problems. There are a lot of unknowns in how she can turn out, depending on whether she got her X chromosome from me or Steph. At any rate, she'll never be a world-class athlete, but neither are her parents.

We'll just continue to pray for the best, and we thank you all for your support and friendship. Pictures will follow. Geneva will be hospitalized for weeks still, and this is very hard on all of us, but we eagerly await the day when the family can be reunited.

With love,
Harry