Saturday, January 28, 2006

Everything is fine... for now

We were at the Dr on Friday and they said that everything is fine right now. Joseph is very active and he seems to be doing very well. The Dr stated that 3-4 weeks following the procedure will give them the best idea of how everything is progressing. He did reiterate the importance of Heidi staying on bedrest.

We were relieved because we have gone to so many Dr appointments and the news at those times had not been good. It was a relief because we have been through so much since January 4th.

Tomorrow marks Heidi's sixth month of pregnancy (week 24). The Dr's in Cincinnati are wanting Joseph to hang on until at least week 31. Every week after the 31st week is good for minimizing such things as pre-term labor, premature birth and the subsequent complications, etc. Joseph's due date is May 19th, but the Dr's think that he will come early, hopefully not before April!

We are eagerly awaiting his arrival. I went and bought the first set of diapers and I was glad that I had a coupon! We are getting ready to make preparation for his arrival. My office is soon to be transformed into his room and I will relocate my office into a corner of it. I hope he doesn't mind all of the office stuff, then again he might get an early start reading with all of the books in here.

I hope that my wife can make it through the bedrest period. I know that it is hard to be cooped up at home. I remind her that it is for Joseph and her to be as healthy as possible before the delivery.

Wednesday, January 25, 2006

We are home

We have been home for one week now. Things are slowly coming back to normal (as much as can be expected!) My wife is on bedrest until the birth of our son and this is not easy for her because she was working up until we left for Cincinnati. I am back at work as well.

Joseph is doing well according to the Dr's here. We go for another checkup on Friday which will probably include an ultrasound.

We are very thankful to those who have been praying for us, for the support of our families and friends, our local church and pastors, and my work colleagues.

Tuesday, January 17, 2006

Day 10 - Final testing, etc.

We went at 8:00 AM for an ultrasound and I was very tense because I was not sure if I could deal with any bad news regarding Joseph. I did not want to eat anything until this ordeal was over. We had the ultrasound and met with the Dr. He said that everything was fine with Joseph and he was doing fine. He also wanted to know if we had any questions and how we were doing emotionally regarding the loss of Jonathan. We told him that we were up and down, but we were doing as well as can be expected. He was very compassionate and told us to keep in touch and to send him a birth picture.

When we walked out, we were relieved to know that Joseph is doing well.

We had the echocardiogram this afternoon. The cardiologist said that Joseph's heart is doing well and functioning normally. He did comment that some of the numbers were up from the previous testing last week before the procedure, but they are saying that could be that Joseph's heart has not had enough time to adjust since the procedure to correct the Twin to Twin. They did notice that the valve leakage that they found previously was now gone, so that is an encouraging sign.

When we left Minneapolis 10 days ago it was snowing there and 60 here in Cincinnati. Now as I am typing this, the rain has now turned over to snow, so it must be time to go home!

Day 9 - Rest

Today was a nice day outside, but we stayed close by. My inlaws went for a drive up North to visit my brother-in-law, so they were gone most of the day. We stayed here, reading, and my wife was working on crocheting a blanket for our son. We had a great breakfast here around 10:30 am -- a group came in and made breakfast/brunch) for us. When my inlaws returned we ate dinner and we went for more Graeters Ice Cream. It is great stuff, but very fattening and rich!. The ice cream is so popular that even Oprah orders it and has it shipped in!

We have an early appointment for another ultrasound in the morning.

Sunday, January 15, 2006

Day 8 - Road weary

My father in law and I decided that we would go to church this morning. We went and attended the morning service at FBC Milford. This church has done a lot for us on a personal level and many people there have been praying for us. Once church was over, we drove back to the house and we went to get some lunch. Skyline Chili was our dining experience. We also went out and got some Graters Ice Cream, another Cincinnati favorite. We stayed pretty close to the Ronald McDonald House. It is interesting to hear the stories of other families and why they are here. We see children who suffer and we are glad that they are getting the same level of care that we have received since we have been here. It is still hard to see a child suffer, but most of them don't even complain, they go on about their daily routines as if nothing was wrong. You can see the stress in the parents, though.

Later this evening, I felt like I was going to lose it mentally, we have been through so much and sometimes there has not been enough time to process these things. I came to a point where I just wanted to go home, but I realized that I was just rundown and exhausted.

It is times like these where we are thankful for the prayers of God's people on our behalf.

Day 7 - Jonathan David Lange

I awoke around 8:30 and got ready. Around 9 am I called my mother in law to see if they had done the ultrasound and to see when they were going to discharge Heidi. I knew when I heard the quiver in her voice and she gave the phone to Heidi that something was not right. Last night, when I talked to Heidi at 9:30pm, both boys heart rates were fine. But apparently sometime between 9:30 pm on Friday and 8:30 am on Saturday morning, our son Jonathan David Lange, went to be with the Lord.

I got my father in law and we raced over to the hospital. I walked as fast as I could to get to Heidi's room and she was weeping and then I began to weep as I heard the news. I could not believe that our son was gone. I saw him on the ultrasound, I talked to him numerous times, usually at night before we went to bed. We prayed for our children every night. He was gone and our hearts were broken. Heidi and I spent some time alone in her hospital room, we cried and held each other, we had prayer and then just sat there in silence for a few minutes. Her parents had left us alone and then they returned a little while later. I had to call my family and that was not easy. I called my mother and told her and she wept with me and she agreed to call my father since I was not able to talk to him.

They discharged Heidi about noon and we went back to the Ronald McDonald House and she was able to get cleaned up and she wanted to get some real food, so we were able to locate a Golden Corral. My brother in law also came down from Piqua,OH to be with us for most of the day.

I spent some time later in the evening sending emails out regarding our sons and answering others.

We know that our son is with the Lord and we will see him someday!

Day 6 - Procedure day (Friday the 13th)

Well we arrived at the hospital at 7:30 and they took Heidi back to a room to get ready for the procedure, there were two nurses already waiting and then there were two more. These folks were very thorough and would also be in the operating room. We were also glad to know that Connie (our Monday ultrasound nurse) would be in the operating room to do an ultrasound just before the surgery. We liked Connie because she was so friendly and nice to us. She was also nice to our sons, she told us on Monday that she "talks to the babies" while doing the ultrasounds. This also has a calming effect for the parents who are obviously here because of serious problems. Once the anesthesiologist came in and talked to us and then we heard that everything was ready, they allowed me to walk with Heidi to the operating room doors, the nurses stepped away and allowed us to say our goodbyes. It was very hard because we just don't know what will happen during surgery and this would be the first time during the entire process that I would not be with Heidi. It was probably for the best, because I would have probably drove the doctors nuts. I like to ask a lot of questions. There were 15 people present in the operating room during this procedure.

As everything was explained to us previously, the majority of the time would be spent mapping the placenta locating every vascular and arterial connection that is shared by both boys. Once that was complete, then they would go back and double check their work then start the laser coagulation process which takes a very short time.

Karen, the nurse practioner, who has been a great help to us during the process, was also in the operating room, she came out and told us when the procedure actually started. As always, my inquiring mind wanted to know what the largest number of connections that they have found in doing this procedure. Being naive, I thought maybe 100, but Karen told me that the most they have ever found was 14 connections. She told us that when they were completed, she would come back for us to meet with the Dr.

I was glad that my in-laws were here with us during this time. We could have never dealt with all of this without their help and support. Also, my brother-in-law who recently moved to Ohio came down to wait with us, along with a family friend from Springfield, OH. It is never easy to wait for a surgery to be completed, but at the same time, you want the Dr's to take their time and do their best possible job.

Before we knew it, our name was called around noon and we went back to meet with the Dr. During that meeting, he used a white board to explain the procedure and told us that there were 18 shared connections between Jonathan and Joseph. He also told us that there was one rather large vascular connection and they were a bit concerned because they coagulated it last and when they did, Jonathan's heart rate dropped to 35 and then rebounded to its normal rate. The Dr also told us that the next 12-24 hours were critical for Jonathan. I told the Dr that my son has my fighting spirit, because my parents were given a death sentence for me when I was born 3 months early and I survived without any long term effects or problems.

I was able to go back and see Heidi and she was a bit groggy but doing well and they were getting ready to transfer her from Children's over to University for observation. It was a three block ambulance ride for her. In the meantime, we got a call that the Ronald McDonald House had an opening and we had to claim it by 2PM. So we were glad to be able to check out of the hotel. We enjoyed the hotel, but it was getting expensive. We went and got some lunch in the hospital cafeteria and then went to get everything moved from the hotel to the Ronald McDonald House and then went to see Heidi.

We finally got everything moved and then saw Heidi, she was doing remarkably well. The magnesium was not making here sick, she was not contracting and her vitals were good. Both boys heart rates were doing well. We went to get some dinner so she could get some rest. When we returned, we decided that my mother in law would stay with Heidi at the hospital since both boys were doing well and she would be discharged in the morning. It also gave my mother in law a chance to see the boys on a live ultrasound instead of printed pictures.

Sleep has been a fleeting thing, some nights we were able to sleep and others we could not because of different issues.

Day 4- Waiting and Wondering

This post is being done on Sunday evening, but I am trying to chronicle events from Thursday.

We went today for a pre-surgical physical and were able to hear the heartbeats of both Joseph and Jonathan and they were strong. The Dr's seem to think that everything is okay for surgery. We had some free time today and then later in the afternoon, we have a final consultation before surgery.

Again, I will emphatically state that the people here at Cincinnati Children's Hospital are some of the finest people in the medical profession. They have been kind, gracious, and very patient with us, answering our questions, addressing our fears and concerns.

We had the meeting and it was pretty straightforward about the risks and benefits of the surgery. The doctors are not giving us much hope for our son Jonathan, but he seems to exhibit the same fighting spirit that his father had many years ago. We are praying that the procedure will be a success and that mom and both boys will be fine. The procedure is scheduled for 9:30 am but we have to be at the hospital bright and early around 7:30 am.

We are very thankful for the prayers of God's people during this time. We also found out that our return home will be delayed a day because of Monday's Federal Holiday. We are also still waiting for a room at the Ronald McDonald House, which will help us save some money. We planned on being gone at least a week, but it looks like it will be a longer stay because of various scheduling issues.

During our downtime, we went and did some shopping for baby items because my wife will be on bedrest once the procedure is done. I liked playing with the toys that make noise at the Baby Gap! I did not realize how much fun it can be to shop for clothes for your children, but it is tough knowing that one son (Jonathan) is still struggling, but he is hanging in there.

Wednesday, January 11, 2006

Day 3 - The Day After

I do not think that we slept very well. We did have prayer last night just before we went to bed. Today we had a pre-operative anesthesia consult along with some blood work and an EKG. We also were able to get away and visit with some friends who live in Milford, OH and attend the First Baptist Church in Milford. It was good to get away from the city and the routine that we have gotten ourselves into.

We are thankful for our families, friends, and a local church who are praying for us as we also cry out to God for our boys and for God to do His Will in this situation.

Please continue to pray for us, the Dr's and our immediate families. We are truly grateful and we know that God is good all the time!

We have a consultation tomorrow at 9 AM EST with the post operative care Dr and a 3:30 PM surgical consult with the surgeon.

Tuesday, January 10, 2006

Day 2- Meeting with the Dr.

We received some devastating news yesterday.  We are still in shock, but we
ultimately realize that God is in control.

When we met with the Dr yesterday, he gave us a primary diagnosis of placental
insufficiency with a small component of Twin to Twin Transfusion Syndrome. This
diagnosis was not good for our smaller twin. They are not giving him much
chance to live.

We were given a couple of treatment options, one we rejected because we did not
feel it was the right thing to do. We are going ahead with the laser procedure
and trusting the Lord to do what He will in regards to both children.

Incidentally, we have decided to name our children early because of all of this.
The larger child or as the doctors refer to him as the recipient twin, or the
bigger baby, we have named him Joseph Edward. The smaller twin, or the donor
twin, we have named Jonathan David. We were tired of hearing references to
smaller baby, large baby, etc.

The laser procedure has been scheduled for Friday, exact time to be determined.
We will not be able to return home until sometime on Monday evening, but that
could change.

We have not been able to talk to many people outside of our immediate family,
because it is hard for us to talk about these things without becoming very
emotional, it is especially hard when we have seen both of our children on the
ultrasound moving around,etc.

The other thing that the Dr mentioned was now we will deal with the distinct
possibility of three things: 1) Heidi will be on bedrest once we return home
for the duration of the preganancy 2) We will most likely be dealing with the
premature birth of Joseph and the risks and complications with that 3) Also,
there is a possibility of some neurological difficulties with Joseph once he is
born, but that is uncertain also.

This procedure does not guarantee us the survival of either child, but it is the
best option for both children and we know that they are in the hand of God and
He will do what is best for them. Please pray for us, our families, and the
Dr's during this process.

Day 1 - Welcome to Cincinnati Childrens Hospital

Our day started early, we boarded the shuttle for the short trip to the Cincinnati Childrens Hospital. We arrived a few minutes early and we were met by a nurse who escorted us upstairs to the Fetal Care Center for the beginning of many tests.

The first test was another ultrasound where they took extensive measurements of both babies. This was a humorous time because our larger baby was very active and moving around. When it came time for measurements for his brother, he kept getting in the way, sticking a hand or a foot in the picture. The nurse was amused by this also, all three of us had a good laugh.

After the ultrasound, we went upstairs to cardiology where they were going to do an echocardiogram on the hearts of both babies. I sat there thinking about how God allowed me to live, when my parents were told that I would not make it (I was born 3 months premature). I asked God if it were possible for these boys to defy the odds as well and overcome these health problems. After the echocardiogram, I was not sure if I could deal with anymore bad news. We already were dealing with the initial diagnosis of TTTS, but any heart abnormality in addition to this would probably push me over the edge. The cardiologist came and in said that he did not find any abnormalities in either twin, but that the larger twin had a slight amount of valve leakage which he referred to as "trivial". So instead of bad news, we got some good news.

We had a short break for about 25 mins and went outside to see if we needed to contact anyone, we made a couple of calls and then headed back inside for the MRI. The radiologist came in and talked with us about the procedure and answered our questions. We had to wait a little while because they were running behind. If you have never had an MRI before, it is an experience to say the least. I will summarize it by saying two words: loud and long. I was able to sit in the room while my wife was undergoing the MRI itself.

After the MRI, we went upstairs for a meeting with a genetic counselor, who took our family histories and discussed the different stages of TTTS and the various treatment options. We were not able to meet with the Dr because he had gone home ill. That meeting was rescheduled for Tuesday in the afternoon.

We finally concluded our day at almost 5:30pm and we were tired. My in-laws had arrived and we all went back to the hotel to regroup and then find somewhere to eat dinner.

How it all began

Back in late August or early September, just before Labor Day. I came home from work on Tuesday and my wife suprised me with the fact that we were going to be parents in nine months. I was very happy and excited at the same time. At first I wanted to keep it quiet until we were definitely sure about it, but that lasted about five minutes. Then I decided that we should at least tell our families. I called my mom first but she did not answer, we then called my wife's parents and they were excited also. We did finally get a hold of my mother and father. Their reactions were different, my mom was very excited and could not believe the news that she was going to be a grandmother. My dad was pretty excited, but it took about 24 hrs for the news to really sink in that he was going to be a grandfather.

We did not tell anyone else, except my wife's employer and I told my work colleagues. We wanted to keep things quiet at least after the first trimester.

I went with my wife to the second dr's appointment and was so thrilled to hear the heartbeat. I left to room to go back to the waiting room and I was almost in tears because I got to hear the heartbeat of our child.

Everything proceeded as normal, my wife become very nauseous, not a lot of morning sickness, but a lot of sensitivity to smells and certain foods. This was a good way for me to lose weight because she was not able to cook much, and what she was able to cook was limited.

At one of the appointments, the Dr drew blood for an AFP test which checks for the probability of birth defects, etc. About a week before Christmas we came home and there was a voice mail from the Dr asking us to call her. We did and she was concerned about the results of the AFP test and now so were we! We called our families to see if there was any history of birth defects on either side and there was none. We were a bit troubled, but were not overly worried because the test was not an exact science, but a probability!

On December 22, 2005 we got another call from the Dr's office asking us to come in for an early ultrasound just to make sure everything was okay. During the ultrasound, it was revealed that we were having twins. We were very excited and relieved, because the elevated AFP also is an indicator of twins! What a Christmas present!

We had another appointment scheduled at a perinatal center at the hospital where our babies are to be delivered. This ultrasound was on January 4, 2005, Wednesday. We went in like normal parents, excited and hopeful that our twins were healthy. We did know that at least one twin was a boy, but they were not positive about the other twin. They did the ultrasound, taking extensive measurements of both twins and told us that we were having two boys! But that excitement was short-lived, when the Dr came in to discuss the ultrasound with us. He informed us that our twins had Twin-To-Twin Transfusion Syndrome and that we needed to make plans to travel. The Dr. was very kind in dealing with us and told us that there was nothing we did to cause this problem and there was nothing we could do to prevent it either. We left the perinatal center in shock and made it to the car in the parking garage, where we both wept bitterly.

As we were driving home, I told my wife to call her family and let them know. My mind was racing with all the thoughts of the unknown, what was going to happen to our boys and how were we going to be able to travel and get the necessary medical care. When we arrived home, we gathered ourselves together, I called my parents and then called our pastor. We went to meet with our pastor and he was gracious and kind to us, he had prayer with us and said that he would try to contact a medical doctor in our church to see if he could provide us with some information and support.

As the day progressed, we found out that we were going to be travelling to the Fetal Care Center in Cincinnati. We did not have to be there until Monday, and it was late Wednesday. We were still very apprehensive about the whole situation. We went back to work on Thursday and Friday, to keep our minds occupied and not dwelling on all of the unknown things.

We were able to make travel arrangements via Delta Airlines where I was able to redeem some SkyMiles that I had accumulated over the years and had not used. The hospital was very helpful in making arrangments for lodging at a hotel near the hospital.

Our church has rallied around us. Before we left on Sunday, many people pledged their prayers and support to us. Some folks gave us money to help with the last minute expenses. My mother is helping us with the lodging costs and my in-laws drove down here to be with us through the duration of this process.

I am putting these events into writing so that our sons will be able to read about this someday.

Saturday, January 07, 2006

New blog

I have started this blog for two reasons, to make it easier to convey information regarding our twins and to have a written record to show them about their journey.

I will have another post detailing the information thus far in our journey and then updates as they are available.