Taylor Update - Going on 3 Weeks

"For great is his love toward us, and the faithfulness of the LORD endures forever. Praise the LORD."

So, yesterday we went to see the Cardiologist. Everything is going well . Since she was born, she has gained 4 ounces and has grown 3 inches! The Doctor said that we can expect to see her heart weaken over the next 4 to 6 months, anticipating the surgery around 5 months. In the meantime, they need her to continue to gain more weight before then. In order to do that we will be adding more high calorie formula to the breast milk bottles. Erin is a little disappointed to not be able to nurse her directly but knows this is the best thing for her. If for any reason Taylor is not gaining the weight she should, she would then need the mini surgery to help her get to the 5 month mark. We are hoping that won't be necessary.

I can tell you that God has continued to provide Erin and I strength through this. He has truly taken away our sadness. It is an unexplainable peace and joy we have for little Taylor! We know that He is in control and will use her life for His glory. Everyday our love grows for her. We just want to take it one step at a time, not looking too far ahead, knowing God will provide.

Hayden and Ava thinks she's the greatest. Ava thinks that she is her baby. Now if we could just keep her from squeezing her too hard! We are on constant "Ava Watch". Taylor acts and seems like any other newborn baby, though we hardly ever hear her cry. We all think she has the cutest little wail. She definitely sleeps a lot due to being a newborn and her busy heart. When she's awake, she is really alert and wide eyed... so cute.

Erin and I are still amazed when we think back and reflect on our decision to even have another baby. We had been praying about another baby before hand ..."Should we have another? Should we not?" ... 5 months...nothing. I then lost my job. Then one week after being hired on with a new job, we then found out Erin was pregnant. We were so excited, certain this was God's blessing (another child and a job to provide).

Never did we imagine anything less than our standards of "healthy" when it came to another baby. We are still amazed that this is real and it's all okay. Just knowing that God knew of Taylor all along and she is here, made it so clear to us His love and plans for her. How quickly we forget that we are not guaranteed anything. We live in a fallen world, filled with imperfections. Thinking about this reminded me of a scripture in Proverbs 16:9- "In his heart a man plans his course, but the Lord determines his steps". Thanks God for the reminder! I am so quick to forget that I am not in control...God is. We want nothing less than to be in His will. I will continue to praise Him for all He has done for us! We are learning to be content in all of our circumstances, knowing that whatever may come, we can do all things through Christ who gives us strength.

"Praise the LORD. How good it is to sing praises to our God, how pleasant and fitting to praise him! ... ...He heals the brokenhearted and binds up their wounds. "

Aaron

Got a call today from Inland Reginal Center. They took down all of our information and said Taylor does qualify for their services. We will be contacted within two weeks to make an appointment for them to do a thorough assessment of her.

We don't know too much of what to expect, but they do have an Early Start program from birth to 3 years. We will be assigned a case worker for Taylor that will work with us to coordinate services available to her (assessment, development intervention plan, resources, monitoring, reviews, ect.). Either way, I'm looking forward to some clear guidance and support for her specific needs. Hopefully it's a good place to start. There is so much information out there we haven't even had a chance to look into yet.

On a side note.. We are SO thankful for all the meals we are receiving from friends and our church. It is SO wonderful.. and such delicious food. There are so many recipes I need now... Thank you Lord.. my cup overflows!

Doctor Appointment

Today's Doctor appointment went well. Taylor only gained one ounce. However, the doctor said that she looked really good and had good muscle tone. The official test results came back and the doctor confirmed that she does in fact have Down Syndrome (Trisomy 21), 95% of all Down Syndrome kids have Trisomy 21. We have an upcoming appointment with the Cardiologist next Monday and will go back this Friday for another weigh in. More to come...Aaron.


Taylor with Dr. Hurwitz

Going Well

It's been a great first two nights. Nana got here yesterday and that's been huge. We are learning to balance everything new. Little Taylor hardly makes a peep and LOVES to sleep. I'm hoping to capture a short video of her awake soon. We've got some great pictures finally with her eyes open, I'll have to share.

It's quite the feeding demand right now. Not only do we do the bottles every three hours, then there is the need to pump ,then measure bottles and add formula. Whew! All to start over again :). I'm looking forward to the time when we can just nurse.

Taylor will meet with her Pediatrician, Dr. Hurwitz tomorrow. I'm really curious to see how much she gained these past two days at home. It will be nice to have all our questions answered that we didn't yet know to ask when we left the hospital. This is the same pediatrician that gave us the news about Taylor's down syndrome shortly after she was born. She was so loving and wonderful through the whole thing and is very well knowledgeable in this area. I know that was just one more touch of God working out all the details.

There are so many people who have called us who either have a child with DS or are close to one that they know. The information, support and stories from these people has been awesome.... Such amazing, positive things. Once things settle, Aaron and I really want to find some time to meet with them and talk. We even have a family that go to our church that have a 2 year old daughter. We had even met her awhile ago during one of the services. I had turned around to greet them in service and she looked at me and held out her arms. I was able to hold her for a few minutes. Aaron and I had talked later about how cute and sweet she was. There are so many little areas we look back on now, wondering how much was of God preparing us.

We've been spoiled already from all our sweet neighbors. We had an amazing meal our first night, Taylor gifts and packages for the girls... it's too much. I can't express our gratitude enough and how much it touches us. I'm looking forward to sharing more of her with so many I love.

Finally Meeting Lil' Sis

Here ya go.. now off to bed (for a few hours anyway..)

More coming soon.. so many cute ones..

Going home

Please pray for us today as we get ready to travel home with Taylor. We are looking forward to laying low for the weekend as we get settled in...Thanks for all your prayers!

Update: Orders to Go Home

Okay, okay.. here's a blog. I know this can be a nice tool to keep everyone updated.

So yes, REAL QUICK.. they're getting everything ready for us to be discharged tomorrow! So now I'm getting all overwhelmed. I know there will be a lot to go over tomorrow, papers to sign, ect. So we'll be busy.

Taylor will still need to be fed by bottle most of the day, breastfeeding only twice a day. She does get tired out easily during feedings. Nursing does take a bit more of her energy than the bottle. We will be scheduling a pediatrician apt for this Monday and she will have her first follow up appointment with her cardiologist the following Monday. She will be on a lasix) medicine to control the amount of blood flow to the lungs. The cardiologist will then follow her closely as she grows and gets stronger. Within a few months her body will then tell us when she will need her heart surgery to fix the defect (I believe this is it) .

We just ask for prayer that everything goes smoothly as they hand her over into our care. I do have a bit of anxiety with her heart condition and working out all the feeding patterns (pumping, bottle, nursing, ect.). I know within a few days, it will all seem more familiar to us and not be so overwhelming. We are really excited to finally bring her home.

We'll see if I can keep this blogging up from time to time, to keep you all updated. Each and everyone of you are so important to us and we really want to be able to share with you more personally than through technology. We are so thankful to have love and support. We have so much to share on that side of things and how God has amazed us through this process. He has been our strength. In time, we are looking forward to telling about it. It's all about what He's doing in our lives..

Love, Erin

She's Here

Taylor Paige
5lbs, 13oz, 17 inch
10/29/09, 6:02pm

She is our special girl.

Hi everyone. We were surprised to learn Taylor was born with Down Syndrome. We are coming to understand and trust, knowing this will prove to be a blessing in our lives. God is glorified through her and we give Him praise. She is so precious to us. Her sisters cannot be any more excited

We were unable to bring Taylor home the first week. She does have a heart defect, called an AV Canal, that will have to be corrected with surgery. This will most likely happen within at 4-6 months. She is doing well today and her heart is stable for now.

God has really been using this first week away to grow us in ways we could never imagine. We look forward to sharing how He has strengthened and brought us so much encouragement through His Word and those around us.

Lots of change, lots to learn, but again, we are amazed how God gives us what we need for each day.

Love, Aaron and Erin

John 9:3 "... but this happened so that the work of God might be displayed in his (her) life."

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