June 2, 2010

There are often times that I can't go back and read some of the previous entries. It is emotionally draining. We praise the Lord for Geneva's good health and thank Him for that.

Geneva went to see her favorite pediatric cardiologist a couple weeks ago. Again we are so thankful that she called us in to see Geneva's great charts. I think this was the first appointment that we have had since I was pregnant with her and we first noticed a problem, that everything was within normal limits!! Isn't that exciting? Her Z score for her mitral valve is still (-) 1.9 but somebody has to be at the bottom of that curve. It was (-) 2.4 at one point so we will take the improvement. Her next appointment isn't until OCTOBER!!! I don't know what I will do with 4 1/2 months and no long drives! ;-) I am keeping an eye on her weight as she is still under 17 lbs. However, she did have RSV and she is a lot more active now. I have to also remind myself that Virginia was 18 lbs on her 1st birthday and she was a pound heavier than Geneva when she was born.

Geneva is very active these days so getting her to hold still for an echocardiogram proved to be a challenge. At home, she wants you to barely hold her fingers so she can walk, walk, walk and quickly. She might skip official crawling but I assure you she combat crawls, lunges and rolls to where she needs to go. I know the next 9 months to a year will have their own set of challenges as they do with most children this age. Geneva loves the tiniest pieces of paper to put in her mouth and scare her mommy as she gags. Jewelry, any phone and remotes are still her favorite "toys" at the moment.

I can again never, ever, ever thank you all enough for your prayers and support, love and encouragement. If you would, please pray for Geneva today. She has broken out in hives all over and has had a couple doses of Benadryl. I don't know what might have caused them. We took her to a play area the other day that had sand and she had sunscreen but it was a safer sunscreen. She did get a tiny pinch of a peanut butter cookie but that was two days earlier so she is on a very strict diet until we find out the source. May the Lord richly bless you!

April 19, 2010

Monday, April 19, 2010 6:18 AM, EDT

I can't believe that it was a year ago that we knew our little darlin' would need heart surgery. I was in shock that day. Yes, I knew it was a possibility but I didn't let myself "go there" too often. Praise the Lord for Dr. Bremer. She was and has been such a tremendous blessing to us. She was so calm that day and I needed that. And it is truly amazing that there was a cancellatio

n so I was able to get in quickly because I think it was just a week or two before she was gone from that practice and we might not ever have met because of the timing had we not gone in that particular day. I cried to my mother on the way home. She always knew when my appointments were and would call me right after if I didn't call her right away. It's still so difficult to not talk to her every day. I'm sad that Geneva has gone through so much during her little life but give thanks to the Lord for allowing my mother and I to be closer then we were ever before. There was even a much stronger bond because of Geneva and I praise Him so much for allowing me that precious few months with my mother before her passing. Not a day goes by that I don't think of her and have a terrible longing to hug her and tell her how much I love her and to hear her talk to the children and encourage them.

I looked over some of the emails we had exchanged this past year and there was one from her just a few months before her passing. I asked for family history regarding heart conditions and she told me she had SVT but other than that the doctors ran extensive tests on her and said her heart was "perfect". I still don't understand how her heart could have enlarged overnight because she had an echo and all kinds of other tests less than 48 hrs before her passing. I just need to review her medical records so I can try and have a peace with her passing. I know it was her time and God's timing is perfect. I so just wish I could have known for even 5 minutes so I could have had that last goodbye.

Geneva loved talking to her grandma and she's still quite the talker. She has special words for her siblings and she says doggie and pretty, hey, hi and a few others. She loves to pretend to go to her daddy at night and then cling to me. She'll laugh and laugh about that. I'll ask her if she's a mommy girl and she bobs up and down for yes. I'll ask if she's a daddy girl and she shakes her head violently back and forth no. She then loves to giggle. If anyone claps or sings happy birthday then she lights up and thinks it's all about her.

Within the past few weeks, I had her on the floor on a little playmat and I heard Weston (5) say "Whee" and Geneva giggling. I looked directly behind me and not even two feet away and there he was holding on to her sleeper footie and twirling her around in a circle. I told him to be careful because she could get hurt. Not skipping a beat, he bent over, felt her chest, and then todl me she was fine because her heart was still beating. He said, "she likes it" and went back to playing with her. We had a little talk about safety and how we don't necessarily do something we like or somebody else does just because it's fun but that we could find some other way to play together. I can tell they are going to be a dynamic duo!

We've received some wonderful reports from doctor's over the past week or so. Geneva's bloodwork has come back perfect and she has no signs of celiac disease, good thyroid function, no kidney malformation from sonogram finding, no neuro issues, very little webbing, and fingernails are improving. All around great reports. We still just LOVE all of her doctors and are soooo thankful. It's awesome to talk to her neurologist about sustainable living and organic food, her endocrinologist has TS and is such a kind doctor and inspiration, her geneticist is great and we talked about our families and Dave Ramsey, and of course, we would never trade her cardiologist for anyone in the world. I am so praying that none of them ever move because I'm really at peace about them treating her and the thought of finding other doctors causes me great stress.

We are seeing her cardiologist every 2-3 months. Next appointment is in a few weeks. I am praying for great news and for those valves to keep growing! We are trying to continue living as though we will need no more surgeries but there is always that possibility and it's difficult to not have that nagging at the back of my mind.

Geneva is slowing down in growth. Some of her weight issues are likely due to the fact that she was sick for so many weeks and fighting RSV. We are not going to use growth hormones because of the stress it could put on her heart. They could help with the tubes in her ears to line up properly but PRAISE GOD, she hasn't had an ear infection and her hearing test was perfect. So, the risks aren't worth the benefits at this point nor can I ever see them being that way but we'll take it as it comes.

Thank you all so much for your support, love, prayer and encouragement. I thank the Lord for the time with Geneva and try not to think about the uncertainty of the future. I know others who don't have their daughters to hold right now and it causes me so much pain for them, from one mother to another. Those women have offered such love to me and so many others. I think of them and pray for them often. Please do the same. The Lord has called us all to different paths and we know His ways are perfect. I don't know what the future holds but I have to trust Him completely.

Have a lovely week. We have new baby chicks that will be laying some yummy eggs this fall. We can't wait. I'm hoping to get some compost delivered for our garden so we can get more things in the ground. My last batch of honey lipbalm turned goopy because I added too much honey to try and make it sweeter. :-) Ive had lots of positive comments about the all natural deodorant I make so that is encouraging. We are hoping to find out this week if we will be getting a few beehives!! Oh, the apple trees will like that!

Love,
Stephanie

March 12, 2010

Friday, March 12, 2010 10:17 AM, EST

Phillipians 4:11b-13

I have learned, in whatsoever state I am, therewith to be content.

12I know both how to be abased, and I know how to abound: every where and in all things I am instructed both to be full and to be hungry, both to abound and to suffer need.

13I can do all things through Christ which strengtheneth me.

Well, I can't say that I have learned to be content but I am learning and I'm afraid that will be a lifelong challenge for me. Yes, I trust the Lord and yes, I know His ways are perfect but I sometimes struggle and have to remind myself to be still.

So very often I say how thankful I am that things aren't worse and we've come so far. And I am truly thankful.

Geneva goes to endocrinology, neurology and urology appointments the first week of April. At that time her kidneys will get a ultrasound to check for horseshoe shape, which is a common issue for girls with TS. We are praying those appointments go well. Praise God she hasn't had any more seizure episodes since leaving the hospital and has been med free for about 5 months!!

I might have mentioned before but we received her newborn screening in the mail in December or January. It stated that although she passed her newborn screening, she is at an increased risk for hearing loss and needs to be tested every 6 months for the first 3 years of her life. Her hearing test is scheduled for Monday, March 22nd. The interesting this is many years ago I told the children I wanted to learn some sign language because we just never knew when it would be useful and a blessing to someone. I even said that you never know if the Lord would bless us with a child with a hearing impairment. When my husband's grandmother lost more of her hearing, I so wish we all knew more sign language to help us communicate better. Our oldest daughter was able to learn some when she want on a missions trip to help build a school for the deaf. So, we've decided that now is a wonderful time to introduce sign language to Geneva. We have shown her some signs but I would like to buy the Signing Times DVD set so we all can learn some more. It comes in very handy when in public, especially in quiet places like church and the library, and is also a blessing to use when everyone has sore throats. : ) Hearing loss seems so minor compared to other conditions.

We love our cardiologist and are so thankful for her! I suppose I just pray and hope one day we'll walk into her office and just for once be "out of the woods" and not feel like we are going to possibly face another surgery. It is frightening to think of that possibility but the fact is that Geneva's valves are just barely large enough to be adequate. The good news is that they are growing but just not by leaps and bounds and that is where I struggle with contentment.

Geneva is quite a determined little girl. She is growing and such a joy for us. She is not usually too interested in toys these days, except for a few, and mostly prefers computer cords, remote controls and phones. Oh, she loves phones but not fake phones, just the real deal please. :-) Instead of crawling like conventional babies, she likes to crawl on her back and shoot herself backwards and then dig in her feet and do it again. It gets her to where she wants to go.

On the homefront, we've had strep throat pass through and Geneva had a positive test for RSV. It was a huge blessing that her oxygen wasn't below 93% and she didn't need to be hospitalized. If she were to need a breathing treatment, it could cause some tachycardia which would put an extra strain on her sweet little punkin' heart. Thank you Lord that she did so well. We moved from there to the stomach virus and every day for the last nine days, someone has been throwing up between 1 and 3am and I've gotten up with them and am exhausted. Please pray this passes quickly and doesn't hit anyone else again and Harry and Geneva will stay healthy.

Thank you for your continued notes of love and encouragement! They mean so much to all of us. I still haven't taken the time to set aside to figure out how to resize photos. I tried something one day and almost wiped out a whole slew of pictures. LOL So, I need to set aside some undisturbed momma computer time and there are just other pressing needs at the moment. In the meantime, Harry has uploaded pictures to: LittleGeneva.com and you can see how much she's grown over there.

Many blessings,

Stephanie

January 6, 2010

Wednesday, January 6, 2010 10:20 AM, EST

You are an angel without wings
You are a princess without a crown
You are a star that has fallen down
And I'm happy
Little miracle child
Little gift from God
Little sister of mine

Avonlea (11yo) is working on a song for Geneva and has started with the lyrics above.

Happy 6 month birthday Geneva!!! I can't believe it's been only six short months ago that she was born and yet it seems as though she's been with us forever. Thank you Lord for our time together!

Geneva continues to grow and is close to the 50% for weight and 75% for height! We have so many praises. Her left ventricle looks great and is about the same size as the right. Her aortic arch repair looks good. There doesn't appear to be any scar tissue causing issues. Her pleural effusion hasn't returned. Her mitral valve is still on the small side but is growing.

My prayers are for continued health and growth and that her aortic valve will grow and surprise everyone so much that there will be no explanation for her healing but to give glory to God! I know He can do great things but I also know He has a plan and it may not be the same as mine. If I begin to think too much about the future, I find myself at times getting anxious and I continually have to run to Him to find my comfort and peace. The thought of my doll having to endure another, and more complicated surgery, tears me apart so I am praying and petitioning the Lord that when we go back to her cardiologist in February, her valve will measure at least a 9. Harry and I will be looking into and asking about various options if she does need a Ross-Konno procedure so we can narrow down our decision should it be a possibility.

I'm sorry that we don't have more recent pictures. I've tried loading some but the file sizes are too large and I don't know how to make them smaller. Feel free to email me if you know how to do this. :-) I'm technically challenged. I would love for y'all to see how much she's grown.

Geneva now loves to bite me while she is nursing and see my reaction, blow raspberries, roll over from front to back and vice versa, try to combat crawl and laugh. I love the way she watches my lips and furrows her brow and thinks so intently about how my lips are moving and forming words and sounds. I can't take a drink of water without her trying to grab my cup. We've found that because of the extra skin on the back of her neck, she can't wear some things her size that need to be buttoned and has to use a larger size bib. She did lose a spot of hair in the back and it's coming in a much lighter color and very coarse texture. Before my mother passed away, she told me my hair was the same way and I was blonde for several years.

As I go through some seed catalogs, I dream about taking Geneva out to the garden next year and having her helping me plant the following year. Weston loved to go out to the garden and get the snow peas and cherry tomatoes right off the vines and eat them like candy.

Thank you for the continued words of encouragement and for prayers. Please continue to lift us up and ask for complete and total healing for Geneva.

Much love,
Stephanie and family

October 30, 2009

Friday, October 30, 2009 2:19 PM, EDT

Geneva was able to meet with her endocrinolo

gist a couple weeks ago. What a delightful doctor and we were so thankful to her attention to detail. She printed out a huge stack of papers for us to read about Turner's Syndrome. Imagine our surprise when we found out the doctor has Turner's Syndrome! It was very encouraging to see a woman doing so well and so familiar with this condition. We have much to read, research and pray about in regards to growth hormones and hormone therapy. If the growth hormone is just for growing taller than we will likely not put her through that but there is some research that indicates it could help prevent other problems as well so we are looking into that further.

Geneva's face first lit up like a lightbulb with smiling and cooing when she spoke to her grandmother. We used to call my mom every day and Geneva spoke with her at least 5 days a week. My mother went into the hospital almost 2 weeks ago and they admitted her. She was diagnosed as having bronchitis and given oxygen. After a day or two she was moved off the cardiac floor and we were all encouraged. My mother was taken for an echocardiogram and someone who brought her back told my sister it didn't look good. My mother had complained that her heart would slow down and speed up and she felt like she needed to be on the cardiac floor. I called and spoke with the nurse secretary on the floor and was told she would pass the message to her nurse but ultimately the doctor needed to make that call. My sisters spoke to the general doctor on call as he was making the rounds and he told them it was up to the cardiologist. The cardiologist came and said my mother's heart was fine and she passed away in her sleep that night. Needless to say this past week has been heartwrenching for all of us. My mother was a hard working woman who raised four daughters. Her girls and their families were her world. She was a best friend to many and I don't think a single person can ever say she said anything unkind to them. She always called if I didn't call her after Geneva went to a doctor's appointment. She would ask, "How is our little angel baby?" Upon returning to her home after her passing, my aunt found her Bible opened no the bed to Ecclesiastes 3 - To everything there is a season.

October 8, 2009

Thursday, October 8, 2009 7:56 AM, EDT

We had a full morning of appointments yesterday. Geneva started off the day with her cardiologist, whom we both adore. She hasn't been too fussy at any of the appointments except when Miss April checks her blood pressure. It appears as though her pleural effusion is gone, praise the Lord! Her left ventricle looks great, arch that was repaired looks good and there doesn't appear to be a bunch of scar tissue. She is still at the end of the bell shaped curve for the size of her mitral and aortic valve. I try to comfort myself and remember that somebody has to be at the end of that curve but I would really feel much better if it wasn't Geneva. The Turner Syndrome would complicate another surgery so much and we are asking for prayer that the Lord would heal those valves and they would grow with her greatly. And also that we would have peace with her condition, even if those valves don't grow. Unless she has any problems arise, our next cardiology appointment won't be until December! Ack! That is a little scary but I know Dr. Bremer will work us in if we have concerns and we trust her. She has always made it clear to check in with her if we needed which is so reassuring.

After cardiology, we headed over to neurology. That appointment went well also. After further reviewing the last EEG, her neurologist stated he was comfortable taking her off her meds and keeping an eye on her. Time will tell if there was permanent damage caused from the first seizures and if she will have more. Sometimes they start off subtle so we are praying she doesn't have any more but we will notice them if she does. She is definitely a little talker like her mother. :-) She just coos and babbles all the time now. She seems to be so very alert that I really don't believe she has suffered permanent damage. Unless we have any concerns, her next appointment with neurology won't be until April!

We have two more doctors to meet, endocrinology and her genetisist. I'm going to switch gears a bit over the next week and research a bit more about Turner Syndrome and try to think of what questions we might have. Interestingly enough, Geneva apparently still doesn't know she is supposed to be little. She just turned 3 months old and she is over 11 lbs and 23 1/2"! Considering all she's been through, I would say she is doing exceptionally well!

Thank you all so much for your love and support and kind words and prayers! Please continue to pray for Geneva and her valves and that the Lord will use her to bring glory and honor to Him.

Love,
Stephanie

September 15, 2009

Tuesday, September 15, 2009 1:25 PM, EDT

Rejoicing so much! Geneva went to see her cardiologis

t yesterday and we were encouraged that she is 9lbs 15oz now and grew another 1/2" in 2 weeks and she turned 10 weeks old yesterday. What a marvelous surprise to see her pleural effusion almost completely cleared up!! I was in complete and total shock but so very thankful. I noticed after she saw the chiropractor the first time she didn't cough for about 36 hours. She went back a second time and didn't cough for 4 or 5 days. I was hoping it was because she was getting some relief but nothing could have prepared me for watching that echocardiogram. Thank you Lord, the great physician!!

If I focus on the uncertainty of the future then I become anxious and continually remind myself to focus on the Lord and His perfect plans and be so very grateful for the time we have together.

Our oldest is visiting this week and we're taking our first family pictures today with the entire family. Her little umbilical cord stump said it's final goodbye this morning. : )