DiGeorge syndrome, CHD and other Gonzales family adventures

Life as a Mommy

2009-05-14T12:41:00.003-05:00

It has been such a crazy journey so far in my new adventure as a Mommy that I have not had time to stop and take it all in. It is such an amazing thing to have this little baby begin it's life inside of you and then to watch it grow once it is outside of you. That in itself is a miracle. The moment that cry is heard for the first time you instantly become a Mommy. Instantly forgetting they are still sewing on you or whatever but all your focus is away from your discomfort and placed on this living miracle. Up to that point in my journey I was a "normal" mommy. The next day we found out our angel had her heart condition and it all changed. My story would forever be different from most anyone I would ever talk to. So many women only days before discussed being pregnant together, shared our stories and they were all the same. Talking to those same friends with their babies now who are all about the same age we no longer have this same connection to discuss where our kids are developmentally. I am thankful my baby girl is here and really thankful she is so tiny still and enjoying every move, every new discovery she makes, every new noise.. I love it all. But when I look at her and realize she is a week away from being 8 months and as all mom's do look at other 8 month olds I can't help but feel a little.. I do not even have a word for it but different. I have no point of reference to know she is doing what she is suppose to do. Most babies her age are spoon feeding, sitting up on their own and eating more then 20 oz a day. I feel like Jenny is making progress and doing better then she was but, as all mom's do, I worry is she catching up? And then in worrying that I feel guilty for not being just grateful she is developing in all the necessary areas even if it is a lot slower then most her age. Even typing this now.. I think I should not even post this but I can't help but feel that other mom's with these special little kiddos struggles the same. My husband and I find ourselves for the most part just taking in all she does and second guessing when we should try spoon feeding, should we just keep at it or push it or just let her develop in her own time. My only gauge is her cardiologist who says she is doing great. So we have resigned ourselves to just accepting she is continuing to develop at her own rate and that it does not have to be measured by other baby norms she is working on her own scale!! We are getting some peace in this and just enjoying each new skill she learns in awe and wonder as most parents do.

Thoughts after my day

2009-04-24T19:55:00.002-05:00

OK.. Well today I sat from 9-6:30ish listening about 10 different kiddos situations. As I thought about my day and all I heard I question can we really help these kids? Are we really helping the situation or just delaying the inevitable? I know circumstances where we get outcomes that we call successful but could those kiddos have made it without CPS intervention anyway? Sometimes I feel like we are nothing more then abunch of Talking Heads analyzing the childs life.. watching from a far picking apart at the alien. Some kids break my heart.. We as adults see this potential, see this kid as an awesome leader or has something to offer this world but with all they have been through in there life they just can't see it for themselves. How many of our homeless, criminals, drug addicts, alcholics, and on and on really were these kids who have all this potential all to offer the world but they themselves can never see it. Unfortunately we can not save them all, there will always be homeless, criminals, drug addicts, alcholics, and on and on and some of which are tomorrows (list above) the very kids in foster care today. Sometimes is seems futile, sometimes it seems like we are spinning our wheels.. but then there is one or two who surprise us all and become or future nurses, doctors, child care workers, lawyers that have been to the bottom early in life and dug themselves out to change this world. THOSE ARE MY HEROS!! Those are the people who I admire most and I am thankful that through all the darkness that can surround my job there is hope and light. This is my prayer, for all the kids in foster care who everyone has let down, who has been thrown away from placement to placement, I pray for peace in your spirit, I pray for you to see your worth and to know that someone behind the scenes thinks you can do this, that you can make it and that your opinion is worth while!! I pray for you to find that thing that everyone is lookng for, your purpose, your place on this earth. We all have a place and a mission.. I pray you find yours! Mine is to pray for you and hope that I get a minute at least to let you know how important you are in this world!! Please keep fighting and know the harder things are in life the more you appreciate things and can give back. You are loved by the nameless, faceless people who make it their lifes work to care for you behind the scenes. GOD BLESS!!

A Whole New World

2009-04-16T23:17:00.003-05:00

It has been a whole new world with my Jenny. She is ready to get up and go. She finally started sleeping through the night, she takes a brief morning nap and about an hour and half afternoon nap. Sounds normal huh!! THAT IS THE AMAZING thing to me!!! It is so strange how quickly it is like I have this baby who I no longer am worried about 24/7. I can actually sleep mostly through the night too. I still wake to check if she is breathing but I do not get out of bed to check I watch until I see the blanket move and go back to sleep from my bed. I am assuming this breathing check with go away at some point. It is awesome watching her start to grab for things for hours and not get worn out. She can play on the floor for hours seeing how many toys she can get wrapped around her arm..LOL she is sooo funny. I am getting excited with the new spoon feeding progress and for her to sit up on her own and so on. But I am taking in every moment trying not to miss anything. It has felt like we have had a newborn for 7 months and I really do not want to rest to go by so fast I miss a step. Thanks to everyone for the prayers. I really thought the anxious feeling in my chest would never leave but Peace and Rest are here. I watched my daughter tackle this surgery like it was nothing, with joy and with ease. So I am a proud mommy of a little girl stronger then I think I can ever be!!

Being a New Mom to a New Baby

2009-04-07T07:18:00.003-05:00

Before the surgery, I had a quiet, sweet, baby who slept, ate, did her diaper business and smiled and cooed and her daddy and myself. NOW I have a sweet baby but she is anything but quiet, refuses to sleep and wants constant attention and wants all her demands met 5 mins before she started crying. LOL it is amazing. She definately likes some things and does not like others (especially her daddy or me leaving a room). Even if the other parent is in the room she shows her discomfort with the other one leaving. I know part of it is her being 6 months but another part of it is she now has the energy to show you what she really feels. And boy she can have a temper. It is awesome though. No matter what, not sleeping because she refuses too or if she is crying cause her music toy stopped playing music. Her cry, her smile, her looking at us like "what you expect me to sleep now?", whatever it is, is beautiful because she is here to do it. We are definately in for a brand new ride!! AND she is still healing!!!

Jenny is doing great!

2009-03-31T18:41:00.004-05:00

Jenny is doing so great. She has had some blood pressure issues but that is normal according to the doctors. They have her on blood pressure meds and she is back to normal. She will get the chest tubes out tomorrow for sure and will be moved to a regular room. She is off all pain meds just Tylenol as needed. Today she has only needed it twice. She is an amazingly tough little girl. I got very broken up about an hour ago because straight down the hall a little kiddo coded and everyone was rushing in that room. I am very thankful that it was not our little girl and very upset for that family. I can not even begin to imagine. Tomorrow Joe and I are going to join the Parents Project and go do some arts and crafts and meet other PICU families. Everyone is so shocked at how good Jenny is doing and even though the amount of time expect to recover is 7 to 10 days.. they wonder why she is still here. She will either go home on day 6 or 7 depending on how well she does getting her chest tubes out. Well as usual, I will keep you updated.

Jenny's first sort of smile~~

Tomorrow is the big day

2009-03-26T17:32:00.005-05:00

Well tomorrow we will actually get this surgery done. Jenny does not seem to be nervous at all (LOL). Daddy and I are just getting through today before the reality sets in again and they start preparing her for surgery. She has an Upper GI this morning and they found she has Reflux so she has some new meds for that. Other then that we are just chillin and trying to get through today. Here are some other pics of Jenny while we wait in the hospital.

Grammy and Jenny

Surgery Day

2009-03-24T22:35:00.004-05:00

We were all geared up for the surgery today. We went through the early morning process, got her checked in, the family that came and gave their hugs and kisses and off she went with the surgeons. About two hours later we call to check on her because we have not heard anything. The Family care person comes to tell us the surgeon wants to see us. Of coarse I think.. he was not suppose to come and see us yet??? So I get nervous... Well it turns out after getting Jenny sedated that a code blue patient came in the ER and they had to tend to that child and that child was going to take all day to work on. So they were going to begin waking Jenny and sending us to a room to wait for her surgery to be done on Thursday or Friday. UGH.. We are here stuck in the hospital waiting for her surgery still. She has woken up fine and is now resting like the angel she is and Daddy and I are pooped emotionally and physically since we have been up since 3:45 AM.. Good night all and I shall keep you updated.

Another Day

2009-03-19T16:10:00.003-05:00

I was able to stay home with my little girl today! She has pretty much wanted me to hold her all day, sleeping for only 30 mins or so when I lay her down and then we start over. I have loved it!! I needed a day to do nothing else but hold my girl and talk and play with her. She is amazing. We have 5 more days until her surgery.. I am trying my best to not get anxious and just rest knowing God has this but the thought of her having to go through this is hard to face. I have no doubt she will go through this and heal quickly. It is just the going through it and anticipating getting on the other side of this mountain. I know we will all make it through stronger for just having gone through it. Please keep us in your prayers.

2009-03-11T20:20:00.003-05:00

This is how I feel right now.. Exhausted and cozy at home. I had a rough day at work. I was very emotionaly challenged today. The hits just would not stop coming. I am very overwhelmed with work and awaiting Jenny's surgery. But there is nothing like having a bad day and coming home to a hubby that has cooked you dinner and daughter smiling so big the moment she sees you. Somehow it melts the anxiety completely away.

Each Day a Reminder

2009-03-10T16:11:00.008-05:00

It is a blessing to have a reminder each day of the fragility of life. Jenny has taught me how to look at the truely important things in life. Those things being, loving God and trusting Him, surrounding yourself with those who love you no matter what, and letting all the rest come and go as it will. I can not express the strength this little miracle shows me everyday. I feel so weak next to her. On just about a weekly basis she has blood drawn, x-ray's done (she actually loves this one), and has to be tested for urine infections by being catherterized.

After all she has to go through she will smile at the doctors or nurses or lab tech who had to do these things to her. Every where she goes people are shocked at her ability to be so joyful and peaceful through this all. When she is hospitalized the nurses from the whole floor will come to see her because they say she is the happiest baby in there. Like I said she has shown me such strength that I am in awe. Maybe you will think I am crazy but I see the compassion she already has for others in so many ways. She looks with concern on the TV if she hears someone crying or someone who seems sad she will give them a quick smile. My husband and I are truely in awe of this amazing little girl who, as most children do, is teaching us more then I think we will really ever teach her.

A LOT HAS HAPPENED

2009-03-05T21:07:00.003-06:00

Well this picture says it all. Since I last blogged I have gotten married and had a baby girl. Her name is Jennifer and she has been a miracle all the way around. First of all my doctor told me for years he was not sure how easy it would be for me to have a baby due to two surgeries for endometriosis. About four months into the pregnancy I almost miscarried but Jennifer hung on miraculously. The day after she was born we learned about something brand new and I am not talking about how to change a diaper but we learned about Tetrology of Fallot. My daughter had a hole in her heart. Jenny has had a heart cath and it showed that not only did she have a hole in her heart but also was born without her pulmonary artery. She has a duct that remained open at birth that is providing blood to her lungs. Amazingly enough she has done so much better then her doctors have expected and is just about ready for her open heart surgery to repair her defect. She will have to have several surgeries over her lifetime but I do not doubt that God will completely show off in her life as He is already doing. It has been a journey that has brought my husband and myself so much closer to each other and to God so already miracles are developing out of my baby girls life. She is an instrument of Joy and Peace and I am blessed that God is letting me be apart of her life.

Wordless Wednesday

2007-07-04T10:31:00.000-05:00

For more Wordless Wednesday, go here

Friends

2007-07-03T15:21:00.000-05:00

I recently have been back in contact with friends from my youth group. It is amazing to go down memory lane with them. So many fun, silly memories. Sometimes it seems life would be better if you could go back to those carefree days but isn't that just like our memory to forget all the bad stuff we went through. That makes me think of the Children of Israel wanting to go back to Egypt. So many times we go through things and maybe they were awesome fun things and maybe they were bad times that we struggled through but we went through them. Where we are now would not fit that place in the past and then we needed to be where we were so we could stand today. So I say all that to say this. I am thankful for my friends from my youth group. I am who I am today because of your encouragement and because of your walking this Christian walk with me. Thank you for going with me and thank you for keeping in touch with me. Lets keep marching on to the new places in God because we still have mountains and valleys to get through! GOD BLESS

NEW JOB

2007-06-29T09:13:00.000-05:00

I am so excited! I got my dream job! I recently graduated in December and have been searching for a job in Foster care. I was hired yesterday for a job where I will be an Admissions Specialist, which means I will interview Foster families and place the right foster child with the right foster family. I am so excited to be walking into this job. Even as I type tears well up in my eyes because it feels like I am walking into my destiny. I will need every prayer I can get for this job but I know I will love every moment of it. Just to know everyday I will go to work and be able to connect Foster parents with children who need them is so amazing. I also realize having worked in this field previously that everyone who signs up as foster parents do not have the most honest of intentions. I will need decernment and guidance beyond my own wisdom and knowledge. So please pray for me! God Bless!!

Finding the Blessings in the Small Things

2007-06-28T11:35:00.000-05:00

My money has been tight lately, not a surprise since I am a recent graduate. But God has been giving me (as my seister and I say) handfuls on purpose. I have been asked to make deliveries and pick ups at work which gives me an expense check for .40 a mile I travel. It takes about $30 to fill up my tank and I have used a little under half a tank of gas for these trips and I make about $54 a trip. I have been making one to two trips a week. WHAT A BLESSING!!! Today I even got another parts run that earned me $20 more. So sow your seed and God will bring your blessings in the oddest of ways. God bless

Our Counselor

2007-06-27T10:57:00.000-05:00

Our Counselor
TGIF Today God Is First, by Os Hillman

But the Counselor, the Holy Spirit, whom the Father will send in My name, will teach you all things and will remind you of everything I have said to you. - John 14:26

I was driving down the interstate feeling discouraged from an appointment I had just had. A former employee's company was seeking to displace me, and my company, as their source for our services. It had been one of many difficult events during those months. As I was driving, some words popped into my mind, No weapon formed against you shall prosper. I could not tell you where those words came from other than I knew the Holy Spirit was speaking them to me; I knew they were in the Bible. I knew they were in the Old Testament.

When I returned to my office that day, I searched for the key words in my concordance and found the verse. "No weapon forged against you will prevail, and you will refute every tongue that accuses you" (Is. 54:17a).

Jesus said that the Holy Spirit would remind us of the things He desires us to know. There are times in our lives when the Holy Spirit speaks into our spirit words designed to encourage us or give us what we need at the moment. That is just one of the roles of the Holy Spirit in the life of the believer. The more you know God's Word, the more often you'll recall verses the Holy Spirit will bring to mind for a given situation. Study God's Word and allow the Holy Spirit to remind you of the things He desires you to know.

Struggle Within

2007-06-27T08:33:00.000-05:00

Paul talks about this struggle in Romans. We've all heard or read the confusing passage where he talks about doing what he does not want to do but not being able to do what he wants to do. It is the age old battle we all fight within. It seems there is this destiny, or promise lying within us that we feel we are to accomplish yet the things we need to do to actually accomplish that destiny seem lost to us. Maybe this doesn't make sense to anyone but me. But I feel I have this promise, calling or destiny (whatever you want to call it) and I so desperately want to achieve this promise! The question is how do I get from where I am in my day to day to where the promise is?? I have heard it said that what you do today will determine your tomorrow. I know it is in the baby steps, the planting seeds, but sometimes that promise, that destiny, seems so far from who and where you are. Sometimes it feels like you made it all up somehow in your mind. Well, I will keep you updated on how this destiny/promise plays out. I have my fingers crossed!! God Bless

Wordless Wednesday

2007-06-26T14:53:00.000-05:00

Singles bowling night turned into three ladies bowling alone.
For more Wordless Wednesday, go here

Blessing of Jacob

2007-06-26T08:53:00.001-05:00

A friend of mine sent me an email of his testimony. He had gone through horrible health problems and had been believing for his breakthrough all year. God spoke to him using the story of Jacob. God has been speaking to me using Jacobs story as well. In Gen. 32 Jacob wrestled with an angel until he got his blessing. Some background on the story, Jacob stole the birthright from his brother and fled his country. He was now headed back to face his brother again and he was fearful. He encountered the angel and began to wrestle with him. He was so determined in his wrestling that the angel touched his hip to attempt to break free. Jacob refused to let go. The angel asked what his name was and he told him. The angel changed his name Gen 32:28 "Your name will no longer be Jacob, but Israel, [e] because you have struggled with God and with men and have overcome." I have not received full revelation on this story yet. I do know that there are things, breakthroughs I am waiting on that I feel like I am wrestling with God over. I, like Jacob, will not let go until I get my blessing. I will be an overcomer and will rise above the struggles set before me. I will ,as Jacob did, walk into the destiny God has set before me regardless of what man's ways or rules has set up against me. God's ways are higher and I will overcome because I will not let go until I do.
Be Blessed

God Shall Provide

2007-06-25T09:35:00.000-05:00

My God Shall Provide
TGIF Today God Is First, by Os Hillman

And my God will meet all your needs according to His glorious riches in Christ Jesus. - Philippians 4:19

Have you ever gone through a time of complete dependence on God for your material needs? Perhaps you lost a job and could not generate income on your own. Perhaps you got sick and could not work. There are circumstances in our lives that can put us in this place.

When God brought the people of Israel out of Egypt through the desolate desert, they had no ability to provide for themselves. God met their needs supernaturally each day by providing manna from Heaven. Each day they would awake to one day's portion of what they needed. This was a season in their lives to learn dependence and the faithfulness of God as provider. By and by, they entered the Promised Land. When they did, God's "supernatural provision" was no longer required. "The manna stopped the day after they ate this food from the land; there was no longer any manna for the Israelites, but that year they ate of the produce of Canaan" (Josh. 5:12). In both cases God was the provider of the need.

For most of us, we derive our necessities of life through our work. Like the birds of the fields we are commanded to go out and gather what God has already provided. It is a process of participation in what God has already provided. Sometimes it appears it is all up to us; sometimes it appears it is all up to God. In either case we must realize that the Lord is our provider; the job is only an instrument of His provision. He requires our involvement in either case.

You may say to yourself, "My power and the strength of my hands have produced this wealth for me." But remember the Lord your God, for it is He who gives you the ability to produce wealth, and so confirms His covenant, which He swore to your forefathers, as it is today (Deuteronomy 8:17-18).

Acknowledge the Lord as the provider of every need you have today. He is a faithful provider.

God's Preparation for Moving Out

2007-06-20T13:48:00.000-05:00

I receive this devotional in an email and thought I would share this great Word with everyone! GOD BLESS!! :o)

God's Preparation for Moving Out
TGIF Today God Is First, by Os Hillman

In this way the man grew exceedingly prosperous and came to own large flocks, and maidservants and menservants, and camels and donkeys. - Genesis 30:43

Jacob left his homeland after suffering a broken relationship with Esau for stealing the family blessing. He went to work for his uncle Laban where he stayed for 20 years. It came time for him to leave, but he had no physical assets to show for those years under Laban. Laban had taken advantage of his nephew in every way. (In some ways, Jacob was reaping the seed he had sown his entire life as a manipulator and controller.) Nevertheless, God's hand was on Jacob, and He had plans to prosper him. However, Jacob had one problem - he had no resources of his own. For Jacob to launch out on his own, he would need resources. In those days, resources often meant large flocks of animals. God gave Jacob a dream that resulted in a strategy for creating wealth by multiplying his sheep. Even though Laban sought to thwart Jacob's efforts, God overcame the evil in Laban to allow Jacob to prosper.

There are many important lessons for us in this story. First, when God decides it is time to move you into a larger place of His calling, He has the ability to provide the resources you need to support the call. God gave Jacob a dream that resulted in a strategy never used before to build wealth. It was totally from God's hand. It was creative and new. God called Jacob to move out after he had demonstrated his faithfulness in 20 years of serving Laban. He learned to live under authority and served Laban faithfully, even though he knew he was being taken advantage of.

God will do the same for you and me. However, a word of caution: Be sure the strategy is born from above, and not from self-effort. The difficulty for most of us workplace believers is to learn the difference between the strategies born of God versus the strategy of self-effort.

Blogging

2007-06-20T13:36:00.000-05:00

My seister and I have been working on my page to get it up to par. All the while the computers at work have been down and my time at home has been minimal. But while the computers are working and things are somewhat set up here on my new page, I would like to say that God is up to some exciting things in my life. I can not even begin to tell you where I am today compared to where I was just last year. It's amazing. There are things He has done in my life and through my life that truely are farther than my imagination. I am on the brink of my new career, which I have interviewed for and things are really looking very promising, and spiritually I feel like God and I are on a whole new level. I look forward to sharing this walk with my Family and new friends that join me in this new blogging world. GOD BLESS!!!

For my Dear Seister

2007-06-19T13:26:00.000-05:00

I switched to be more family friendly! I do blog on myspace but I must admit my seister has made this blogging site seem so much more fun. So this one is for your dear Seister!! :o)