Friday, September 26, 2008

Choosing a Name

Greg and I both felt we needed to decide on a name for our precious baby boy. Originally we had decided to wait on choosing a name until we knew the gender of the baby. We tend to have a hard time agreeing on names, so we figure why try to come up with two sets of names when we’ll only need one. Of course once we found out we were having a boy, we were hit with so much bad news, it was hard to think about a name. But as time went on, I really felt the need to have a name. And we had several people ask us for a name so they could pray for him specifically. So, we decided to take the opportunity of some downtime on our vacation to think about and come up with a name. The meaning was really important to us so we spent quite a bit of time trying to find a name we liked and had a special meaning to us.

When Kyler was born, we were trying to decide between the names Kyler and Caden. We ended up choosing Kyler because we didn’t feel the meaning of Caden fit him. Caden means “fighter” and Kyler means “handsome one”. When it came to choosing a name for this baby, we kept coming back to Caden because we feel he is definitely a fighter. But the middle name proved slightly more difficult. After much deliberation and thought, we decided on Joshua, which means “God rescues”. We fully believe with all our hearts that God does rescue, so we have decided to name our baby boy Caden Joshua. If you are praying for him, now you have a name to pray for specifically.

Saturday, September 20, 2008

The Anointing

Last night we had an anointing service for our baby. We did this based on the biblical instruction given in James 5:13-16 which states “Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing psalms. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much.”

In preparing for this service, I did some research to gain a better understanding of the specific instructions for this ceremony. Here are the criteria that I found:

  • Exercise faith in God’s promises
  • Have purity of heart
  • Be free from natural or spiritual sin
  • Have a submissive spirit
  • Make intercession
  • Ask according to God’s glory
  • The person who is sick should call for the Elders
  • The elders should pray over them
  • They should be anointed with oil, which is symbolic of the Holy Spirit.
  • They should pray in the Name of the Lord.

Preparing for this service did require some effort on our part. We spent time in prayer seeking God’s guidance, confessing our sin and asking for His Spirit. We talked about what it meant to have faith and how our faith was a key factor in this healing process. We recognized that without faith God would do nothing, but that even with great faith, God in His wisdom may choose to answer our prayer in a way that we did not anticipate. Let me just say that I believe God will answer our prayer and He will do so with the affirmative. 1 John 5:14-15 states “Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us. And if we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him.” It was never God’s will that our child or any other child in this world ever develop problems or be anything less than perfect. However, He has allowed these things because of sin and even though He has allowed them, He always has the power to overrule. Whether God chooses to overrule now or some time in the future, He will overrule that is His promise. God never says no to a request that is made according to His will. He either says “yes” or “wait” with the latter being more difficult for us humans to accept.

In thinking about the logistics for the anointing, we decided we wanted to do it on a Friday night at sundown as a way to bring in the Sabbath. We decided to have it at our home. We asked our pastor (Walt Groff) to perform the anointing and we invited the head elder (Sam Wallington) and his wife (Sharon) along with my parents (Dan and Mary) to take part in praying with us. Of course this leaves the obvious question of what happened to the kids? Sharon Cox graciously agreed to come over and entertain Nicole, Becca and Kyler while we had the anointing.

Walt began the service by reading the passage from James that is quoted above. Then we all gathered around Carey and placed our hands on her. We began our prayer time by confessing our faults and asking God to cleanse us from any sin. This is something we had already been doing in preparation for this, but we wanted to make sure there was nothing hindering our communion with God as sin cannot exist in His presence. Next we moved to praising God and claiming His promises. We recognized Him specifically as Creator and Healer. We acknowledged His power and His ability to bring restoration. We ended our prayer time by asking for complete and total healing of our baby. Not just enough so that medical intervention would be feasible, but complete healing so God could be glorified. We recognized that God already knows this child and has a purpose for Him. Jeremiah 1:5 states,”Before I formed you in the womb I knew you; Before you were born I sanctified you…”. We prayed claiming Philippians 1:6 that God would finish the good work that He has already begun in this child. And we concluded by praying all of these things in the name of the Lord, who as Paul so eloquently states in Ephesians 3:20, is able to do exceedingly abundantly above all that we ask or think. What an amazing promise that is!

God is able, no question about it and we are excited to see how our prayer is answered.

To end on a couple specific instances of God’s blessing we are thrilled the Amnio results came back with an all clear on everything they can diagnose. Of course the doctors won’t commit to there being no problems, but to us it is evidence of God’s hand. Secondly, we received Carey’s chromosome results and they were all clear as well, which tells us we do not have an elevated recurrence risk should we decide to have another child. Praise the Lord.

Friday, September 19, 2008

The Amnio Results

Thursday, September 18 – I was out all morning with Kyler and when I got home, there was a message from the genetic counselor saying she had our amnio results. I called her back as soon as I could but she didn’t answer so I left a message. I was anxiously waiting when she called me back about 45 minutes later. I was bracing myself for the worst. When she said the amnio showed no abnormal chromosomal problems I was shocked! This means that our baby boy does NOT have Trisomy 13, Trisomy 18 or Down Syndrome. And, in addition to that, it showed negative for spina bifida which was another concern the doctors had. Praise God!

She did say they are going to check for one more potential chromosomal problem with chromosome #22, Velocardiofacial Syndrome, also known as DiGeorge Syndrome. She said it was unlikely it would show anything, but they were going to test it just to be sure. She said babies with this syndrome can have anything from a mild problem to a severe problem with birth defects, it really depends. But we will need to wait another week or so for those results.

In addition to the amnio results, she had received a copy of Greg’s chromosome analysis (mine hadn’t come in yet) and they came back completely normal. Great news! God is good!

There is still possibility for some genetic or other neurological problems that aren’t tested in the amnio, but the major ones are ruled out! There is no other testing we can do at this point, so again it is more waiting.

As soon as I got off the phone with the genetic counselor, I called Greg and told him the news. We are both relieved, shocked, happy and praising God. It makes us even more grateful for our decision not to terminate the pregnancy and to wait and see what happens. We had prayer together on the phone and thanked God for being with us and for this incredible news we received today! Our anointing service is tomorrow night and we are looking forward to that. We’ll keep you posted as we learn more information but we are overjoyed today with the wonderful news we received!

Thursday, September 18, 2008

The Cardiologist

On September 11, Kyler had a regular follow-up appointment with Dr. Van Gundy to see how his pulmonary valve was doing. We do this about every 6 months just to make sure things sound okay. Dr. Van Gundy had told me he would be more than happy to spend a little extra time with us during this appointment so he could answer any questions Greg had about the baby since he wasn’t at the echo. It was so nice to be able to have him sit down with us and explain how things were working in the baby’s heart. He also went into more detail about the possibilities of surgeries involved to fix the heart problems. It could be anywhere from 1 – 3 surgeries depending on the severity of the aortic valve stenosis at the time of birth. But, the surgeries would be delayed because of the diaphragmatic hernia as well, so we still can’t ignore that problem.

I know I have said this before, but we feel so grateful to have such a caring pediatric cardiologist who is willing to take the time to answer our questions and not rush us out the door. I understand from nurses and other doctors who have worked with him, that he is well-liked and respected. This is also not the case for all the cardiologists so we feel blessed to have him for our children’s doctor.

The Amnio

Our amnio was scheduled for Tuesday, September 9 at 11:30 am. I dropped Kyler off at a friend’s house, then picked Greg up and we drove to the doctor’s office together. We were a little anxious about it because neither of us like needles. First we had to meet with the genetic counselor to sign the waiver for the procedure. Then, a technician called us back and did a quick ultrasound on the baby and took several pictures for their documentation. When she was done with that, she went out and we waited for the doctor to come in.

At this point, Greg was already ready to pass out because he really doesn’t like needles and because he desperately needed to eat. I didn’t know entirely what to expect with the amnio, but knew I would be staring at the ceiling and NOT looking at the needle. When the doctor came in, he quickly went over my abdomen with the ultrasound and found a large pocket of amniotic fluid where he could easily draw out what he needed. In fact, he was so confident that the baby wasn’t in the way, he didn’t even use the ultrasound during the amnio. He just plunged the needle in really fast. It surprised me because I expected him to do it slowly. The pain was immediate as well as the cramping. The needle remains in place for about a minute as they draw out the fluid they need for testing. When he was done, he wanted me to look at the syringe to see how much fluid they had taken. It was all I could do to bring myself to look at it, but I did. I was so grateful to have Greg there with me and that I could squeeze his hand during the procedure. We didn’t know how long it would take to get the results for sure, but they said probably 10-14 days. So, more waiting…

Chromosome Analysis

After talking to Dr. Sweeney regarding chromosome analysis for me and Greg, we decided we definitely wanted to do it. So, we took the lab slips and went and had our blood drawn on Tuesday, September 2. We figured it would take about 2 weeks to get the results and this way we would know whether or not either of us was carrying something recessive we were passing onto our children without even knowing it. We thought we should know this because it would help us in the future regarding the possibility of having any more children. But, just more waiting…

Sunday, September 14, 2008

The Will of God

This is an excerpt from my journal where I wrote about the will of God in this situation. I thought it may be a blessing to someone so I am posting it here.

Dear Lord,

After listing to a sermon by Doug Batchelor on the Your will I wanted to go through and apply the criteria to our situation with the baby. I pray for your guidance as I go through and consider each of these items. May you bring additional clarity and wisdom to this situation through this process. I will list these as bullet points and comment on each one in turn:

  • Be surrendered and willing. John 7:17; Is 45:9; Ps 25:9. Lord we have surrendered to you in this situation and we continue to do so with your help. We recognize you know what is best and You desire our happiness more than we do. Please help us to continue to let You lead and guide.
  • Consult the word of God. Ps 119:105; Ps 40:8. James 5:14 clearly states that if there is anyone sick among you they should call for the elders to pray for them. Though our unborn child cannot call for the elders we are interceding on his behalf. In addition, the scripture says that Christ is not willing that any should perish. Further this child has been knit together in Carey’s womb and is fully known by God. It was never God’s will that this child be sick, He has only allowed it to happen because of sin. He is capable and willing to use this situation for His honor and glory. O Lord, let your name be glorified in all of this.
  • Be faithful to God’s revealed will. John 12:35; Matt 13:12; 3T 425; Ed 211. In getting pregnant and living our lives we have tried to honor God by being healthy so we could pass on healthy genes to our kids. We have also prayed over this child. Lord we are willing to follow. We recognize there is still more we can do and we pray for your grace in applying all we know to our lives.
  • Obtain Christian counsel. Prov 11:14; 1 Cor 15:33; Ps 73:24. We have been seeking the counsel of Christian friends who have been through similar situations. We desire to gain their perspective and listen to their counsel. So far they have affirmed our decisions and been very supportive of us.
  • Observe Providence. Ruth 2:20; 2 Cor 2:12. O Lord, this is one of the first things we did when faced with this situation. We recognized how you had put people in our lives, how you had arranged our schedule, how you had made provision for us even before we knew this problem existed. Please help us to keep our eyes open to your providential workings.
  • Pray. 1 Jn 5:14,15; Jn 15:15; Gen 18:17. Lord, we have been seeking your through prayer and we need to do more of it. I am comforted by the words in first John that when we ask according to your will you hear us and give us what we ask for because we are asking for your will in our lives.
  • Pray and Fast. It is necessary to fast on occasion so we may clear our minds to be more receptive to God’s leading. Our physical health affects our spiritual perceptiveness and at these times of great need we must do all we can to be able to hear the Word of the Lord. I have begun that cleansing process and I pray for strength and leading over the next 11 days as I allow my body to be cleansed and my mind to be cleared of the clutter.
  • Have faith. Prov 3:5,6. Lord God you know we are trying to muster as much faith as we can to go through this process. We believe you are able to heal our child and we believe you desire to do it as it was always your will that we have a healthy child. However, in faith we submit to you knowing that your ways are so much higher than ours and there may be another outcome that would bring more honor to your kingdom and in faith we submit to you on this.
  • Do the safe thing. I am not sure how this applies to our situation completely, but we have consulted the doctors and we are not taking any unnecessary risks by continuing the pregnancy. When it comes to the available alternatives they all have risks and we have chosen to go through the natural process which was designed by God.
  • Make sure the decision brings glory to God. 1 Cor 10:31; Matt 6:33. Lord you know we have said this all along and I say it again here. Our desire in continuing with this pregnancy is that you might have an opportunity to heal this child by performing a miracle. We have spread the news of our situation widely so that however you decide to handle this situation your name may be glorified by the outcome.
  • How does this decision affect others? Rom 14:7; Gal 5:14. To the best of our knowledge our decision is not impacting others in a negative way. Our decision to carry the child certainly requires the support of many good friends, but it is support that has been given willingly out of love.
  • Be guided by the Holy Spirit. Is 30:21. O Holy Spirit we pray for your continued leading in our lives and especially in this pregnancy. We have been at peace with our decisions so far and we pray that should we make a decision that is contrary to God’s plan that you would bring us distress that we might know to turn from it.
  • Be patient. James 5:11; Luke 21:19. There is no other option in this case because you cannot speed up a pregnancy and hope for positive results. However, we recognize our need to take each day as it comes and not to stress about what lies ahead. Lord God we know you have already made provision for us and we ask that you would help us to honor you by being patient.
  • Tally the evidence. We continue to try and count our blessings each day. We have been writing down specific instances where we have observed God’s leading and even in this list that I am going through right now I have not been convicted of anything that is out of sync with our decision. This brings me courage because it affirms the promise that as long as I am living in God’s will I will have peace.
  • What is your hearts desire? 1 Chron 17:2; Ps 21:2; Ps 20:4; Ps 37:4. Our desire and our prayer is that God would perform a miraculous healing on our baby boy. We are asking for this and we are submitting to His will. I will end by claiming Ps 37:4 – Delight yourself in the Lord, and He shall give you the desires of your heart.

Thank you Lord for this time together and this affirmation of the path we have chosen to follow. May you continue to pour out your grace upon us that we might live for you. Amen.

Tuesday, September 9, 2008

The Journey of Life - Letter to Family and Friends

The journey of life takes many turns, some of them positive, others difficult, some planned while others unexpected. Carey and I were thrilled to get the news during our ultrasound that we were having a baby boy. Little did we know we would be gaining a new perspective on the phrase "ignorance is bliss." After seeing the doctor we learned there were some significant medical conditions. We did some follow-up testing only to find out the situation was actually worse than initially thought leaving us with little hope our baby boy would survive outside the womb.

We wanted to share this information with you for several reasons. First, we need your prayers. We plan to continue the pregnancy and pray for a miracle. Second, this process is emotionally and physically exhausting. Talking to people about it can be therapeutic, but most of the time it requires a great deal of emotional energy, which we probably need to make other decisions. For those of you who are interested in keeping up with the progress of our journey we have set up a blog at http://careymcculloch.blogspot.com. We will post updates to this site as we get them. Finally, we recognize this whole situation as an opportunity for God to be glorified either by performing a miracle or by giving us the grace to live through the alternative.

Feel free to share this information with others. We do not intend to keep this a secret, but we would like to keep the record straight along the way, which is another reason we set up the blog. We do not expect you to know what to say or how to respond. We are at a loss for words most of the time. Please lift us up in prayer and we will reach out to you if we need something specific. Thanks for your understanding.

Love,

Greg and Carey

Saturday, September 6, 2008

The Fetal Echocardiogram

Thursday, August 28, my appointment for the fetal echo was in the afternoon so I had all day to think about it. I was relieved when the time came. I got to the office and ended up having to wait for quite awhile before being seen. This worked out okay because Kelly wasn’t able to get there at my appointment time anyway. All the while I waited I was under the impression the technician would be performing the echo. However, when I got to the exam room and the cardiologist himself came in, I was really surprised. Dr. Van Gundy is Kyler's cardiologist as well. We have known him since Kyler was about 2 months old and really like him. He is very down to earth and easy to talk to and willing to answer questions. Of course, I was disappointed Greg wasn’t there because he would have come if we knew Dr. Van Gundy would be doing the echo himself. But it was too late now.

As he performed the echo, he told me that he agreed with some of the things the perinatologist said, and disagreed with some other things. He calls himself an optimist and will give us hope where he sees it. But he will also tell you the truth and not let you believe things are great when they’re not. At the end of the echo, he told me he could see all four chambers but there were still problems. He said the biggest problem was the aortic stenosis (narrowing) and that he did still see the hole where the septum didn’t fully form between the ventricles (VSD). However, he said since we had chosen not to terminate the pregnancy, we still had 20 weeks left to see how the heart changed. He said a lot can change during that period, especially with the heart, and since he wasn’t forced to make a determination right away, he had time to monitor it. We will be doing echos every 4 weeks to see how things progress. Dr. Van Gundy said if the heart was the only concern we would be in fairly good shape, but since that is not the case, we really will need to look at everything.

I asked him about the diaphragmatic hernia and he said that is really bad because with the liver pushing on the right lung it might not develop normally. Without the right lung (it does 60% of the work) in combination with the aortic valve narrowing, he said the baby would have almost zero chance of survival. However, he said if the liver shifted down and allowed the lung to develop, there was some hope but it would mean months in NICU on machines and even after that it would be a long, hard road.

When we talked about the neurological problems, he said it was hard to tell. Originally we had been told the baby probably had Down Syndrome by Dr. Sweeney. But when we saw the perinatologist, he said it was unclear what the neurological problem was and without an amnio we really would have no way of knowing. But, Dr. Van Gundy said that based on the baby’s activity level in utero, that he didn’t feel it was Down Syndrome. He said it was more indicative of Trisomy 13 or Trisomy 18, both of which are much more devastating chromosomal disorders to have. Life expectancy is quite short and if the baby were to live, there are much more severe levels of mental retardation. Also, in talking to Dr. Van Gundy, he felt it would be beneficial to us to do the amnio just so we could be prepared for what we would see at birth and know better what to expect. He also said if we were to go the route of heroic measures and try to save his life that this would allow the right teams of surgeons and specialists to be ready and waiting at birth.

Anyway, the appointment with the cardiologist was very helpful and he took a lot of time with me. We also already had a follow-up appointment scheduled for Kyler for September 11, so Dr. Van Gundy said he would be happy to talk to us about the baby at the same time. That was great because it means that Greg can be there and he can ask questions as well. This appointment really gave me and Greg a lot to talk about and a lot to think about over the coming weekend.

The Perinatologist’s Office

Waiting for our appointment with the perinatologist was very difficult. It was hard to wait even another day, so we were very grateful when Wednesday arrived. We had a list of questions to ask the specialist after the ultrasound and were looking forward to getting some answers.

When we first got to the office, a technician took us back and performed the ultrasound. She spent about 45 minutes getting detailed images of everything she could. Then she left the room and the doctor reviewed the ultrasound in another room. After what seemed like forever, he came in and continued the ultrasound with us and described what he saw along the way and the multiple problems he saw.

First of all, he started with the skull: it was abnormally shaped, like a lemon, indicating some kind of neural tube defect or neurological disorder of some sort. Then, he noted something else in the brain that indicated it was possible the baby had spina bifida as well, but he couldn’t confirm that in the ultrasound. Then he pointed out a thickening of the skin at the back of the neck and fluid pockets there as well. He said this usually is indicative of some kind of chromosomal problem but he couldn’t be sure without an amnio. Then he moved onto the heart where he said the baby didn’t have all four chambers, the aortic valve had significant narrowing, and the septum between the two ventricles didn’t completely form, therefore leaving a hole in the heart. He also said the heart was tilted to the left. If none of this was enough, the baby’s diaphragm didn’t completely develop (diaphragmatic hernia) causing the liver to be shifted up into the chest cavity and pushing everything over to the left and probably preventing the right lung from growing and developing normally. Any one of these things by itself might not be insurmountable, but together, it makes for a very bleak situation.

When the perinatologist finished with his ultrasound, we wanted to ask him the questions we had prepared, but he practically ran out the door, passing us off to a genetic counselor. The feeling we got from him was that his assumption was we would get the amnio and choose to terminate the pregnancy so it wouldn’t be worth his time to actually answer our list of questions. It was very frustrating to say the least. And we felt the genetic counselor was really unable to answer any of our questions and was quite useless in general. All she wanted us to do was sign the agreement to do the amnio and showed us a couple pictures of various chromosomal problems which we might be facing. But we certainly didn’t feel like she had much knowledge about the situation.

Greg and I had originally chosen not to do any of the screening tests that are available to pregnant women because we felt that it didn’t matter what the results showed, it would not affect our decision to carry the baby to term. The genetic counselor was unable to give us any real reason why we should do the amnio because she told us we would be able to test the baby’s blood at birth and find out at that time what showed up. So that day at the specialist’s office, we opted not to do the amnio and solidified our decision to carry the baby to term. Once the baby was born, they could test his blood at that point and let us know what the results showed.

We left the doctor’s office feeling very frustrated and seeing no hope for our baby boy. We were given a much bleaker picture of what was wrong with our baby boy than originally thought. And, we weren’t able to get our questions answered. I felt really bad for Greg because he had to go back to work and somehow manage to be productive there. At least I could go home and have some time to absorb things.

Later that afternoon, I got a call from my OB, Dr. Sweeney. She had received the report from the perinatologist’s office and wanted to talk to me about it. I was so happy she called because it gave me the opportunity to express my frustration to her about the specialist. She was able to give me some answers and even suggested that Greg and I get our blood drawn for chromosome testing to see if we had something recessive we were passing on to the baby. She told us this was something we should do during pregnancy because that is the time that insurance covers it. We had specifically asked the genetic counselor about doing this and she kind of blew us off and said we could do it at some time. She didn’t bother mentioning the time to do it would be now. But, Dr. Sweeney wrote up the lab slips for both me and Greg so we could get that process started.

A few minutes after hanging up the phone with Dr. Sweeney, I got another phone call, this time from my nurse practitioner, Kelly. She is really great and I have gone to her for several years, but I don’t usually see her much more than once a year. She told me she had just talked to Dr. Sweeney and found out what was going on with me. She felt so bad for us and really wanted to reach out and see if there was anything she could do. We talked for awhile and she answered some questions for me. The she asked me about the fetal echo we had scheduled and wanted to make sure Greg was going with me. I told her Greg wasn’t planning on going because it would just be the technician and they wouldn’t be able to tell us anything anyway. But, Kelly said that since Greg wasn’t going, she was going to come with me. It was her day off and she would meet me at the cardiologist’s office for my appointment so I wouldn’t be alone. I was, and continue to be, completely blown away by her generosity and loving nature. She had a lot of patients and for her to take the time to do this for me was extremely thoughtful.

That night, Greg and I talked about how happy we were with Dr. Sweeney and the proactive role she was taking for us. And we were so impressed with Kelly and her willingness to help us out as well. These were more examples to us of how God was working in our lives and putting people in place to support us and lift us up. What an awesome God!

Friday, September 5, 2008

The Beginning

August 21 was a day we had been looking forward to: we were going to find out the gender of our baby who is due January 17. Greg took the day off work and my Mom was home with Kyler so we could go to the ultrasound together. When we were called back to the ultrasound room, we were very excited and told the technician we definitely wanted to know the gender. She proceeded with the scan and commented on things she saw here and there, but was overall fairly quiet. The thought dawned on us that maybe something was wrong, but dismissed it as just being her personality.

When our ultrasound was over, we were scheduled to see Dr. Sweeney, my OB/GYN, immediately following. While we waited, we called family members to tell them the exciting news that we found out we were having a boy. That is what I wanted very much so I was thrilled. We enjoyed our 45 minutes of blissful ignorance before finally being called back to see Dr. Sweeney. We were wondering what was taking so long, but it’s not completely unusual to have a wait at the doctor’s office. When she finally entered the exam room, she apologized for the wait and explained that she had been reviewing the ultrasound. Without wanting to “sugar-coat” things, as she put it, she cut right to the chase and told us that there were several things of concern in the ultrasound.

It didn’t take me long before I was crying as she described issues with the heart and skull development. She gave us as much information as she could before leaving the room and allowing me and Greg some time alone to absorb the gravity of what we had just learned. It was completely overwhelming to hear about the concerns.

Dr. Sweeney referred us to see a perinatologist for a more in-depth ultrasound with the specialist to see if they could get more thorough data. She told us she would talk to her friend who was a doctor in the practice and make sure they got me in right away. In addition, she wanted us to get a fetal echocardiogram at the cardiologist’s office for more information on the heart specifically.

After shedding more tears together, Greg and I left the doctor’s office and headed home. Now came the awful task of calling our family back and giving them the devastating news. At this point, we still didn’t know the gravity of the situation, but all we could do was think about what we did know and things didn’t look good.

That Thursday afternoon, we spent a lot of time talking to family and a couple friends about the situation as well as crying more tears. It was extremely hard to have to wait to get more information. I am a planner and I want to be able to plan for things. So, first thing Friday morning, August 22, I called the cardiologist’s office and scheduled the echo for Thursday, August 28. Then, I called the perinatologist’s office to schedule the ultrasound for Wednesday, August 27. It certainly didn’t feel like it was enough, but it was all I could do at that point. Now, we had to wait through the weekend and somehow survive until the 27th when we could get more information from the specialist.

On Saturday, I was not emotionally ready to go to church and answer any questions regarding the baby and how I was doing so I opted to stay home. Greg and Kyler went for part of church and Sabbath School. The rest of the weekend, we tried to spend as much family time together as we could. It’s hard to know what to do when you’re faced with this type of situation, but we turned inward and upward. We spent a lot of time with our family of three and a lot of time praying for guidance, strength and wisdom.

We already felt the need to be looking for the positive things in the situation and looking for where God’s hand was already working in our lives. It didn’t take us long to come up with a list of multiple things which pointed to God working to prepare us for this moment. The list includes putting dear and special friends in our lives even before we knew we needed them on this level. It also involves the timing of our trip to Hawaii for Greg’s job, the day the ultrasound was scheduled for, and many other things. Being able to see where God was putting people and timing in place for us really helped us get through those first few days when we were just waiting to get more information.

I am confident there are many other ways in which God has worked to prepare us for this journey. Some of them are unseen by us at this point and some probably unknown until heaven. I am grateful for the provision God has made for our family and the provision he will continue to make for us along the way.