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Sunday, January 29, 2012

Meet the Doctors - Final Round

We met with the second and final surgeon, Dr. Mendeloff,  Friday at Medical City. I thought he was very personable and spent a lot of time ensuring we knew what Adeline's first surgery would entail. He didn't really elaborate on the second and third surgeries, but he did reinterate the survivability was much greater and surgeries were a lot less complicated. He was very patient with our questions and encouraging as to Adeline's journey. The procedures he described for all three surgeries were pretty much the same as what Dr. Forbess told us.  What keeps coming up in these meetings is the fact that the surgeries have only been around since the early 1980's.  Before the development of the Norwood, this condition was fatal.  It is hard to imagine the babies lost and the families hurt before these procedures were created.  We just hope medicine keeps progressing and getting better as how to correct these congential heart defects.

One of the biggest differences that we saw was that Medical City doesn't have a Safe at Home type follow up program after the first surgery like Children's has. The Safe at Home program provides parents with tools at home (pulse oximeter for daily sats measurements and scale to weigh them) to ensure their baby is recovering safely at home. At Children's, we would call in weekly to give measurements and would be assigned a nurse if we ever had any problems arise. Being a worry wart, I think I would need this type reaasurance each week to make sure we were on the right track.  This type of active involvement and monitoring by us in team with the doctors and nurses held strong influence over us in our decision.

Both facilites, along with the doctors, were impressive and obviously knowledgeable and passionate about their work.  It is a blessing to be living in Dallas where we have a choice of two great hopsitals.  It is not lost on us how good it is to not have to travel to have all of this done for Adeline.  We know that this will help us and Ellie cope with all that lies ahead for our family with Adeline.  We have decided to go with Children's. We are both glad to have this decision behind us. Now we know where I will be delivering and that my OB will be a part of the process. I am pretty glad about this since she is the only person that isn't new this time around.  Having a familar face in the delivery room will be very comforting. 

What's in a Name

As you might remember, we named our Adeline after my mom's Grandma. My Grandma was kind enough to send us some notes about the Adelines in my family. She was especially pleased that Scott and I chose a name that was very close to her heart. Hopefully Addie will enjoy reading this as much as I did. By the way, we picked a middle name. It's Camille. :)

Below are some highlights of what she wrote about each lady.

Mary Adeline Teeter McDorman (1856-1907)

-Always called "Addie."
-Mother of 7.
-1/4 Cherokee Indian (Granddaughter of Sarah Santee, a Cherokee from N.C.)
-Reported to be "full of fun and full of music."
-She was a "very strong lady physically and morally."

Inez Adeline McDorman Taylor (1890-1962) - Adeline Camille's namesake

-A strong lady - mentally, morally and physically (and musically).
-Gave birth to 11 children (10 daughters & 1 son).
-Married to James Leroy (Roy) Taylor for 52 years.
-Attended Tehuacana College ("Normal" school) a Methodist Protestant College in Tehuacana, Texas (near Waco) graduating with "an emphasis on business."  She attended college when most women only went through the 8th grade.
-Her home was always full of children - her own plus friends and relations.
-Besides her own she raised 2 of her husband's nieces (Joann & Frances) and kept her own nephew and niece (Binks & Marjorie). And during WWII kept 2 grandsons (John & Joe Ligon) for about 2 years. And remained happy and uncomplaining!
-She made all of her own and her daughter's clothes - commenting that her sewing machine was never closed for 40 years.
-Her house was also always filled with the aroma of fresh baked bread as she baked almost every day.
-She canned for herself & others ("on shares") as she had both a "canner" and a "sealer" for cans.
-Attended (with children in tow) church every Sunday.
-Started the nursery at Robert Lee Methodist church as a service to young parents.
-Was "Room Mother" to all her children, helping host at least 4 holiday parties in each child's room each year (seemed other mothers didn't have the time (?!) or the money (?!))
-Started the local Girl Scout Troop.
-Played piano, violin, accordian, guitar, mandolin and anything else available.
-Taught piano and violin.
-When asked how she managed to rear 10 daughters - all healthy, intelligent, married and having no "out of wedlock" pregnancies, she replied, "We had a lot of help from God and the Methodist Church."
-Wrote to all her children on a regular basis - type-written and utilizing carbon copies.
-Her comment on what heaven would be like, "I can't tell you for sure, but there is one thing you can be sure of - it will be far greater than anything you ever could have imagined."

And that is a small picture of a great person - Inez Adeline McDorman Taylor, Mrs. Roy Taylor, Grandma Nickey, Mom, Mother.

Some awful big shoes to fill.  I just pray Adeline Camille can be half the woman they were. 

Thursday, January 26, 2012

At a Why In The Road

At the crossroads of my faith/beliefs and the real world is an intersection I simply call "Why." Up until this time in my life, I just assumed that my faith and the real world were just two lanes on the same road heading in the same direction. A turn signal, a check of my blind spot and over I would move freely between the two. Yesterday, I was met with the harsh reality that these are not two lanes of the same road. They aren't even two parallel roads. They intersect. But you see at this intersection there are no yield signs. No stop signs. No traffic lights. My faith doesn't stop to let the real world pass by without incident. The real world doesn't yield to the right to allow my beliefs to navigate safely. Yesterday a collision occurred at this intersection and it was violent. In the debris of the collision lie the biggest and hardest questions I hope I will ever face and the constant in them all is "why." It was inevitable that I question God on this whole mess. I mean who wouldn't? If you wouldn't then you are either naive as to whole picture or have faith exceeding those of any person I know. But really where is God in this? Why has he forsaken us? Has he? It sure feels like it.

People talk about raw emotion. My emotions, when I think about all that Adeline will have to endure are more than raw. Even just the crap we know about, the emotions go way past raw, they are sickening, literally. They tear me up. They make me ill. To see my wife, who is the most important human being to me on Earth, suffer so much kills me. Why does an innocent child of God have to go through this? How does God, a presumably loving God, set up a long, hard road of, what appears to my eyes to be, physical torture? How is that possible? Why is it even possible?

My brother reminded me that even Jesus wanted an easier way to be our Savior. May this cup pass from me. So even Jesus doubted God. And he prayed THREE times to have the burden removed. Even He wished for an easier route. How much more do I wish and pray for an easier route? I am no Jesus. I don't have that strength. Not even close to it. If at the end He asked why have You forsaken me how much harder do I ask and plead the same. I know Jesus followed up his prayers to the Father by saying, "Yet not what I will, but what you will." That's the problem. I can't get to that next part. That's where I trip up. Where the injuries from the collision seem debilitating.

"Eli Eli lema sabachthani?"

About a week ago I wrote that. I wish I could say that in the interim I had a vision or obtained an inner peace that answered my whys. Something that assured me that everything would be ok. That God revealed just enough of his plan in all of this to ease my worries. To be honest none of that happened or at least it didn't feel like it did. But what I did do is continue to pray. Continue to learn about God. Continue to look for answers, sometimes by asking even more and harder questions. And I continued to listen. To listen intently to those around me. To those that have pain and needs of their own. I had a friend going through a tough time of his own with a sick child who is in the hospital text me asking for some Bible verses of hope. What a honor to be asked such a thing. To grab a Bible and scour for passages to lend aid in tough times. I have too often lately been reading these for myself. It was nice to send them out to someone else who needed them worse than me at the time. Maybe that was what the last few days of struggle were for. Maybe that is the stretch of road I was meant to travel these last few days. I know we have a long road ahead with many whys in it. But at least this part has been traveled and I am better for it.

Saturday, January 21, 2012

Meet the Doctors - Round 1

Camille and I had our first meeting to interview surgeons on Tuesday. It was definitely a long, exhausting day! Camille had another ECHO, we met with Dr. Catherine Ikemba (pediatric cardiologist), met with the Fetal Heart Coordinator, a social worker, then finally Dr. Joseph Forbess. We were there from 11 to 3:30. Thank you, Lindsey, for babysitting Ellie all day!! Camille and I were both very impressed with everyone we met. You could definitely tell all of them were very knowledgeable and passionate about their work as well as a love for children! We had all of our questions answered as well as some that we hadn't even thought of. Everyone was more than willing to take the time to explain their roles, what we are to expect and address even simple logistical issues we had (parking and can we sleep in the NICU). Although we were told of some additional complications that Adeline might face later on in life (ie need for a pacemaker) the doctors and nurses were straight forward and honest with the good and potentially difficult things about Adeline's condition. This was both a blessing and hard to hear. A lot of the information we were given was the same and even though we have heard most of it before it just never gets any easier to hear. The types of surgeries are the same, however, the timing of them may be a bit different. This all really depends on Adeline and how things go after she gets here. Dr. Forbess explained that he prefers to wait a bit longer if everything is going well for the last surgery (The Fontan). His experience is that kids do better when they are around 5 years of age to have this surgery.

Dr. Forbess was on the show Children's Med Dallas if you are interested and want to check him out. He is on Episodes 2 and 3.

We also discovered that the pediatric cardiologist we met with (Dr. Ikemba) knows Camille's OB (Dr. Dullye) well. They have kids on the same soccer team. Small world.

Because of the amount of time it took to get through the ECHO and meetings we decided to fore go the tour of the facilities. We will go back to do that part and meet with the financial adviser (that part should be a blast).

Round 2 is 1/27 when we meet with Dr. Mendeloff at Medical City.

Continued thanks for all of the love, prayers and support.

Sunday, January 15, 2012

HOPE

Adeline received a Poowoe and the sweetest lovie from a good friend of my sister who runs the Pink Poodle Pillow Project honoring her daughter, Bailey Catherine McReynolds, today. Inside the box with the pillow and lovie was a notecard that has "HOPE" on the back and the Bible verse, "But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31. I remember Shanda posting this verse on Facebook awhile ago, but it speaks more to me now than ever before!

Upon getting Adeline's initial diagnosis, the thought of her running and not growing weary, walking and not becoming faint were hard to imagine. All we were told was that she would not be able to partcipate like other children. That her heart, or more precisely, the half that she has would only be able to sustain so much and that she would be limited in what she could do. Weariness and becoming faint replaced our thoughts of vibrant and active. But this verse reaches beyond medicine and the physical limitations of any human body. It is with HOPE in the Lord that we become more than what science or society tries to limit us to be. Hope in the Lord gives us that strength needed to exceed. Scott and I can only hope that Adeline hopes in the Lord like we do, because with that hope even half a heart beats completely, fully and without growing weary or faint.

It is people like Shanda who make my heart full! We appreciate your thoughtfulness and I know that Adeline will appreciate these wonderful gifts when she gets here.

Tuesday, January 10, 2012

Grateful

Scott and I wanted to express how grateful we are for those people who are praying for us. We are also so thankful for those of you who have kept Ellie or offered to keep Ellie over the last 5 weeks while we go to doctor's appointments. The last 5 weeks have felt like an eternity and have been so trying for our little family. Please continue to pray for Adeline, our family, and all the doctors as we continue our journey. Maybe the doctors will be spared, and Adeline's heart will be fixed before she arrives. We can always hope!
My faith was renewed a little yesterday as I sat in noon prayer with a good friend. I met a wonderful group of girls over a year ago that have enriched my life greatly. They asked me to attend noon prayer at their church one day this week and they would keep Ellie while I went with one of them. It was an hour full of prayer and worship. At the end of the service, their youth pastor prayed for Adeline and my family. It always amazes me how many people know our story and have been praying for us over the last 5 weeks. Their youth pastor mentioned that he had been praying for us for awhile and that it was good to finally put a face with a prayer. I was reminded that we don't always immediately know what God plans for us, and miracles do happen. Our miracle might not be that Adeline is healed before birth, but that she lives a full life. Lately I have been having a hard time not focusing on my fear, and I was incredibly grateful yesterday to be reminded there is hope.
Thank you!

Saturday, January 7, 2012

20 weeks

We went to the perinatologist, Dr. Rinehart, on Thursday and then the obgyn, Dr. Dullye, and the pediatric cardiologist, Dr. Kao, yesterday. Good news is Adeline seems to be growing well and everything else looks fine. She seems to be "tolerating the condition" is the phrase used.

They are looking at doing an induction at 39 weeks. They want to baby in there as long as possible.

The cardiologist gave us the medical diagnosis.

It is:

Double inlet ventricle
L- transposition of the great arteries
Interrupted aortic arch
Hypoplastic right ventricle
Ventricular inversion

Basically the left ventricle is the larger, which is good, but the arteries are flipped. What they initially thought was the smaller artery, the pulmonary artery, is not. It is the aorta that is smaller and interrupted. Long way of saying she will definitely have to have the first surgery. It will involve both placing a shunt and building a functioning aorta from the current pulmonary artery. This surgery will happen within a week of birth. She does have Hypoplastic Right Heart, but her surgeries will be similar to what they do for Hypoplastic Left Heart children.

Biggest thing now is figuring out where to have the baby and where to have the surgeries, and we now have to interview surgeons. Either Dr. Mendeloff at Medical City or Dr. Forbess at Children's Hospital seem to be the choices.

Thanks for all the prayers and support.

Monday, January 2, 2012

More than we can handle

Scott's first post:

Ever heard the phrase, "God doesn't give us more than we can handle?" I have. And it seems I have heard that so many times in the last couple of weeks.

I started to really think about this phrase the other day. I have come to the conclusion that I don't agree with it. Not so much the theology behind it but the actual wording. God does give us more than WE can handle. He sometimes straps us with worries, burdens, struggles and trials that are beyond what we can grasp, control or even comprehend. But isn't that the point? Isn't that the reason? WE, alone, can't handle them. We must seek God's aid. We must "lean not on our own understanding." We must lean on him and trust in him to handle these things for only God can handle these things. It is by giving these things over to God to handle that we can carry on.

God will sometimes give us more than we can handle, but what he doesn't do is give us more than we can handle through our faith and trust in Him. He, with us, will not only handle, but conquer all that is placed upon us.

As our pastor, George Mason, put it during his "Love All" sermon on December 18, 2011,

"Yes, sometimes what God asks of us is hard, but never too hard. God never asks more of us than God promises to do with us, for us, in us, and through us."

God promises us a good life, not an easy life. Right, George?

L'chaim!