Not much has changed...

Well, another week, another appointment, another "things are looking about the same." Fluid is still on the low end, but Ellis's little heart is beating strongly and that makes the doctors (and us!) happy. The doctor said he doesn't worry too much about fluid levels being low if the baby's heartbeat is strong and there isn't any cord compression. So, for now, we continue to wait, hope, and pray.

Conversations with the specialist and my regular OB brought up a few interesting things for us to consider this week:
1. My doctor recommended we begin looking for a pediatrician for Ellis. I was so surprised to hear him say this. It felt so good to hear him talking about the future with a positive outlook. This doctor has been wonderful and very kind, but he's been very careful to not paint any rosy pictures for the outcome of this pregnancy. I think he's pleasantly surprised by Ellis's strong heartbeat and continued growth at this point.

2. The specialist said that as we continue to keep an eye on things, he and my OB will be discussing the possibility of intervening early, if necessary. He isn't saying this is the direction we're headed, but that they're open to it if it provides a better outcome. There's a lot to consider with Ellis's development and his breech position in the womb. Either way, we're thankful for the good relationship our two doctors have and their desire to do the very best for us and Ellis.

Looking back over the last couple of months, it's hard to believe this is where we are. If you had told me at the beginning of May Ellis would still be here and that he'd still be happily growing inside of me, I would have cried tears of joy. At that point we thought it very likely that he wouldn't be here anymore. So, despite the continued waiting and longing, we are so thankful to be enjoying each new day with our little guy. Tim and I are striving to make the most of every day, recognizing that each is a gift. We find great joy in the little things, like his squirms and pokes, but also find that each new joy is followed quickly by sadness. Without knowing the outcome of this situation, we always wonder if this is the only time we'll have with him. Regardless, we're thankful for this time. And we're thankful for you. Your prayers, care, and concern continue to be a great blessing to us.

With love,
Tim and Rebecca

June 14 - Update

Today's fluid check revealed a decrease in amniotic fluid, but the doctor did not seem too concerned. He seems to think that our fluid levels are just going to fluctuate like this. So, we're praying that he's right and the fluid levels go back up again soon. Otherwise, he indicated that everything else is looking about the same. So, another "status quo" appointment. We're always a bit relieved when there isn't any bad news delivered at an appointment, but we, of course, would love to receive really good news at an appointment. Such is the nature of this experience.

Thank you for all your prayers today. We're feeling very at peace today and know that so many of you have prayed that would be true. We're blessed by the love and support each of you provide.

Each new day with Ellis is another one of thanksgiving for us. We hope God will grant us many more. We'd love to share our little gift with each of you.

With love, Tim and Rebecca

Next appointment

We see the specialist again on Tuesday morning. As usual, we appreciate your prayers during this time. This week's appointment is a fluid check, but they usually take a peek at Ellis's brain, heart, and bowels. We go into every appointment unsure of what's to come. Always a little apprehensive, but hopeful. We love getting a chance to see our little guy on the screen, but it's not easy to hear about his problems week after week. We're looking for hope and joy in these days. Thanks for supporting us in this.

With love, Tim and Rebecca

Fluid Check

Today we went in for a fluid check with the specialist. Although the numbers were slightly lower from last week, they were still within the normal range! A quick scan of the other majors (his brain, heart, and bowel) looked about the same. We're thankful for a "status quo" kind of appointment. Every time we go in we're hopeful that we might hear some good news, but for now, no change is good news.

As always, thank you for the love, prayers, and support. We feel blessed to know that Ellis is loved by so many.

With love,
Tim and Rebecca

June 7 - Update

Yesterday we met with the head neonatalogist at our hospital. There are a few things to be very thankful for here. One, our hospital, the one we would've been at no matter the circumstance, is partnered with Children's Memorial. They have a Level III NICU, which is the highest level available. Second, this means the neonatalogists work out of our hospital and Children's. We know these doctors are good at what they do. Third, this doctor was wonderfully kind and knowledgeable. He also comes from a similar faith background to us, which is no small thing for us right now.

With the doctor, we discussed what it might be like for us and Ellis after delivery. He talked us through some of the scenarios we might encounter and decisions we'll need to make. He also explained the varying levels of intervention, as well as what it would be like should we decide "heroic" intervention is not what would be best for Ellis. These are hard things to talk about. These are scary things to consider. But, we are thankful to have the time to think through it. So often, we remind ourselves that some people find themselves in these situations at delivery with no warning. They are asked to go through the shock and grief while making heavy decisions. Please pray for us as we consider the birth and care plan for our little guy. We have no idea what his needs may truly be, but we need to be ready for anything.

Something else he made clear to us yesterday is that Ellis's ability to breathe at birth will be one of the most crucial indicators of survival. Along with all our other prayers for Ellis, we are praying that his lungs will develop strong and healthy. We're praying for healing, all the while asking for God's grace to meet us no matter the outcome. Thanks for praying and waiting with us.

With love,
Tim and Rebecca

May 31 - Update

Well, we've made it through another week. Tomorrow marks 8 weeks since we found out about the possibility of complications. 8 weeks ago today we were functioning under a very different, much more carefree, mindset and yet today, we still have so much we are thankful for. One being the overwhelming love and support of family and friends. We've learned to lean heavily on others when our own strength is weak. God has placed us in the midst of some wonderfully kind, supportive, and sensitive people.
One of the ways in which people have cared for us is through prayer. Many of you saying, "I don't know what else to say or do, but I wanted you to know I'm praying." Friends, prayer is the best thing you can do for us and we never tire of hearing that someone else has joined us in doing so. So many of you have shared our story with others, allowing countless numbers to be flooding heaven's gates with our requests. I know God already knew all about Ellis, even before we did, but I'm confident that the names Tim, Rebecca, and Ellis are familiar to him now. I've been told time and again that our emails are being forwarded on to people's friends, family, co-workers, neighbors, etc. So, in order to make it easier to share updates and specific prayer requests I've started a blog. I will post updates there and those of you who care to receive updates via e-mail will still be able to do so, as you can "subscribe" to the blog by typing your email address into the form. Feel free to pass on our blog's address to anyone who might be interested. You can find us at http://henryhouseofhope.blogspot.com/.
Today's appointment went relatively well. Ellis is definitely growing, although his head is still measuring quite small. The doctor is seeing some possible malformations in the area of the eyes and nose. All of this would contribute to his diagnosis of HPE. The development of his brain is our greatest area of concern for Ellis. As you pray, please keep his little brain and sweet face in mind. Some of the good news is that fluid levels went up again this week! We are well into the "normal" range and this contributes to less cord compression and a healthy heartbeat. The doctor spoke optimistically about carrying to term and the likelihood that Ellis would tolerate a typical delivery. This is an answer to prayer for us! Ellis's bowels continue to be dilated, but even at the point of build up we were able to see where the bowels are continuing to try and push the fluid through. We're praying that we would be able to see improvement in that area of development as well.
So, despite exhausting appointments that are nothing like what we envisioned going through 8 weeks ago, we are thankful for the good news we heard today. Perspectives can alter greatly in the midst of such circumstances. Although we are daily tested, there is so much that is changing us for the better these days. We are learning a great deal about having the courage to hope and the faith to believe in prayer. In the last week alone we've been up on our feet rejoicing in the miracle of a friend's healing of cancer, only to be back down on our knees pleading on behalf of another friend's diagnosis. Joy and sorrow are so closely intertwined.

Thanks again for praying with us and for loving our little boy. We are truly blessed.

With love, Tim and Rebecca

Ellis's story: May 2011

The letters below were written as e-mails. The story began in April. We write as the story unfolds.

May 3, 2011

Dear friends and family,

 Our ultrasound today showed there to be little to no amniotic fluid surrounding Ellis. This most likely means his kidneys are no longer functioning, as there was fluid a month ago when we last did an ultrasound. This new development is of great concern to the doctors and has set us on a new course of direction. Without amniotic fluid, it is likely that Ellis would miscarry before coming to term and the best opportunity we can give him is to deliver within the coming days or weeks. At this stage in the pregnancy, 25 weeks tomorrow, this obviously carries significant risk as well. This is particularly true for a baby like Ellis with many other complications already known. His chance of survival is very low. Today I was given the first of two steroid shots that could aid in quickening the development of his lungs.

 We have many hard decisions to make in the coming days and are obviously still processing this hard news. We still believe in a God of miracles and continue to pray for one right now. But, our hearts are heavy with the reality of losing our baby boy so soon. Please pray with us as we navigate this new path.

 With love,

Tim and Rebecca

May 9, 2011

Dear family and friends,

Tomorrow we go back to the specialist. We do not know what tomorrow will bring, but I guess we never did before either. Today we are more painfully aware of how little we know about what lies ahead, but we are so very sure that what is to come is already known by the God who loves us and is forming Ellis right now. This past week has been one of questions and worry, but also a deep reassurance that God is caring for us, even in this. We have been absolutely amazed by the widespread impact of Ellis' story. People we don't know sending us cards and emails. A group of  8 women fasting together for two days in earnest pleading on our behalf and only one of them has met us before. A man's passion to minister and serve restored as he began to fill heaven with requests regarding our comfort and Ellis' healing. These kinds of things amaze us as we dwell in this uncertain time of life. Thank you for caring for us through meals, phone calls, cards, emails, kind words, and prayers. For those who work with me, you've written my sub plans and made it so I don't even have to think about what is happening at school. It means so much. Thank you. Despite all the heartache and worry, our hearts our full. We are blessed by each of you.

 We'd like to ask you to join us in prayer for tomorrow. The doctor will be checking amniotic fluid levels and Ellis' current condition.  Decisions will need to be made and they are not easy. We are still boldly asking for a miracle and hope that tomorrow may provide us with that. Our appointment is at 10:30. We're asking for clarity in conversations with the doctors, wisdom as we make decisions, and peace as we enter unchartered waters. Ellis' heartbeat was strong again today and I have felt his kicks with great frequency. We are learning to experience the joy of these things amidst the sorrow of what may come. It's a delicate dance.

 With love,

Tim and Rebecca

The LORD your God is with you, the Mighty Warrior who saves.

He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.

-Zephaniah 3:17

May 10, 2011

Dear friends and family,

 Today's ultrasound revealed that amniotic fluid levels are still very low and Ellis' already known complications are causing further difficulty with his growth. We went in today thinking we might be scheduling a c-section for the coming week or so. That plan has now changed. The c-section would pose signigicant risks to any subsequant pregnancies, as well as my own health. It seems likely that Ellis will not tolerate a typical delivery, but we do not know how long he can survive without amniotic fluid. We will be checking back in with the doctor on a weekly basis to monitor his well-being.

 Our hearts are heavy and hurting tonight as it is likely that we will have to say good-bye to Ellis before he makes it here. Of course, we still believe in miracles and will continue to earnestly pray for one. In fact, this really just gives us more time to do so. But the fact of the matter is the reality of this situation is just plain hard.

 Thank you for praying with us today and on into the coming days. It gives us great strength.

 With love and thanks,

Tim and Rebecca

May 17, 2011

Hi everyone,

Today we had our standing weekly appointment with the specialist. We were happy to find out the ultrasound tech, Janet, we had at our first Level 2 was going to be conducting the fluid check today. She is a truly kind woman and makes it a little bit easier to endure the appointment. When Tim stepped out of the room for a moment she graciously asked me how he was doing. As she laid her hand on my shoulder, she offered her sincere condolences and wishes to be able to do more to help us. It may seem like these are such tiny gestures, but in the midst of this storm it is so encouraging.

 The fluid check revealed an increase in amniotic fluid. Although this sounds like a positive, it is a likely indicator that Ellis's bowels are not absorbing the proper amounts of fluid. The increase in fluid did give the doctor a chance to see some things a little bit more clearly on the ultrasound. Last week he had indicated a possibility that Ellis has something called holoprosencephaly. This has to do with how the brain develops. (Unless you truly feel the need to, I wouldn't recommend looking up holoprosencephaly...some of it can be quite alarming). Basically, the front and top of the brain are not fully forming. This does not carry a very positive prognosis. It can also cause some serious impact on the way a baby's face develops. We had been warned about holoprosencephaly weeks ago, but it is hard to hear that this is Ellis's likely diagnosis.

 Currently, we are in a bit of a holding pattern. Ellis's heartbeat continues to be strong and we feel him kick and squirm with great frequency. For now, it seems like he is content in his current home. We go back in to see the specialist every week, along with regular OB appointments and meeting NICU doctors. We are thankful that the specialist we are working with has actually seen and worked with holoprosencephaly cases before. This is not always the case, as it is very rare.

 We are learning to savor every moment we have with Ellis. Both Tim and I have decided that THIS is our time with our little guy and we are going to cherish it. Now is our chance to love him fiercely, make sweet memories, and care for him as our son. So, despite the sadness and desires for the circumstances to be otherwise, we are choosing to celebrate Ellis's life while he's still here...however long that may be. We feel blessed to be Ellis's parents and thank God for this precious gift.

 Thank you for the continued prayers. It is holding us up and carrying us through this valley, especially during the moments when we feel like we might not ever climb out. We are thankful that God's mercies are new every morning and that we don't have to go through this alone.

 With love,

Tim and Rebecca

May 24, 2011

Hi everyone,

 We went in for our fluid check today and found that the fluid levels remained at about the same level as last week! The numbers are slightly lower than what's considered "normal," but still above the number where they begin to be concerned. Since today was not a full ultrasound, they did not check on every part of Ellis's development. What they did look at (his bowels, heartbeat, and brain) looked about the same. The good news is that the increased fluid levels have allowed the cord to move more freely and help his heartbeat to be at a normal rate and rhythm again. Although the major concerns are still a reality, it was nice to hear about something working right. We were also blessed to have Janet as our ultrasound tech again. It's amazing how the little things can make such a big difference. So, for now, Ellis seems content to hang out in his little home. He's definitely growing. Next week we'll be able to measure during the ultrasound.

 For those of you who are interested in learning more about holoprosencephaly (HPE, for short), we wanted to pass along a website that we find helpful. HPE is a rare condition, that is often misunderstood, even in the medical community. We're finding that it helps to know where to look to find the most recent and accurate information. http://www.holoprosencephaly.net/Holoprosencephaly is one such site. We don't put this out there to expect you to become an "expert" on HPE, but more so for those of you who are curious to know a little bit more. Because HPE is hard to diagnose in utero, it is hard to know what Ellis's true problems might be.

 Thank you for continued prayers for us and Ellis. We are so incredibly thankful. You've supported us through prayer, making meals, sending cards, giving gifts, e-mails, phone calls, meeting us for lunch, and more. We feel very supported and loved these days.

 With love, Tim and Rebecca

Ellis's story: Beginning in April

The following letters were written as e-mails. They were written as our story unfolded. If you are new here and want the full story, this is the place to start.

Morning of April 7, 2011

My sweet friends,

  I'm coming to you this morning with an urgent request. Our ultrasound yesterday did not provide the joy and excitement we anticipated. The doctor found something that is cause for concern. Right now, we don't know a lot. We are supposed to meet with a high risk pregnancy ob-gyn today, as well as receive a level 2 ultrasound. Friends, please pray with us. Our hearts our terrified. We trust and believe in a God who can move mountains. I know my baby is on his mind, especially as there have been many flooding heaven with prayers in the last 15 hours. We're praying for a miracle, but also for the strength and peace needed to face whatever outcome.

  I'm deeply thankful for each of you and would so appreciate you joining Tim and I as we plead with God for the safety of our baby.

 love, Rebecca

Evening of April 7, 2011

Friends,

What a long day it has been. Our world has dramatically altered in the last 24 hours. Today we learned that our baby boy has problems with his kidneys, bladder, heart, spine, and brain. It is very likely that this is due to a chromosomal abnormality. The prognosis for our baby's life is not good. His possible syndrome may not be compatible with life. If he makes it to term his life will be fraught with challenges and could only last a few weeks. . An amniocentesis was done today to determine what possible chromosomal abnormalities have impacted the baby. We should know within a day or two if it is a lethal syndrome. Further results will come within the next week or two. We are still praying for a miracle, but also preparing our hearts and minds for what this news means.

 We've been so blessed by the outpouring of love, prayer, and support from family and friends today. This journey has only just begun for us and it is hard to look too far ahead. Please keep our baby boy and Tim and me in your prayers. We are thankful to know we are not going this alone, but our hearts are hurting right now.

 Love to each of you,

Rebecca

April 11, 2011

Dear Friends,

 Thank you so much for the emails, phone calls, and texts. For those of you at work, some of you have written my sub plans, made copies, and filled in the gaps that I couldn't while away. It's been an immense help. More importantly, thank you for your many prayers. Showing your love to us in this way means more than you know. This has been a hard and dark journey, but through it all Tim and I have been overwhelmed by God's goodness to us. He's been faithful, even when it seemed like there was no way out of this mess. I am amazed at the change in our hearts and minds even since Friday morning. Your love and prayers have strengthened us.

 My parents flew in Thursday night. This was also a huge blessing for us. It has been wonderful to have them close, ready to listen, to cry, and to lavish hugs. My mom and sister won't let me lift a finger and so have cooked all our meals. As we speak, my mom is cleaning out my impossibly dirty refrigerator...without any judgement! Through all of this, God has helped us to see the good, despite all that seemed so bad.

 This morning we spoke with the doctor we met on Thursday. (Another one of the "goods" in our life these days. He is very kind and calm. He's been a wonderful help). We were able to discuss the preliminary FISH results from the amniocentesis. This portion of results came back normal, letting us know that our baby does not have abnormalities in chromosomes 13, 18, or 21. This would most likely indicate our baby does not have a syndrome incompatible with life. The rest of the amnio results will come by next week. This will let us know about the rest of the chromosomes. Obviously, there are still many significant issues with our baby's development, but we are encouraged by this bit of information.

 The situation is still serious and we don't quite know what to expect in the future, but we will be meeting with a geneticist and some pediatricians to learn more about what kind of difficulties our son is likely to face. We would appreciate continued prayer on behalf of our baby's development and health.

 As you pray, we wanted you to be able to pray for our baby by name. So, we've decided to share this with all of you. Ellis Timothy Henry has been a blessing in our lives already and we pray that we can enjoy him for a very long time. In fact, we'd love for you to meet him some day.

 Today's news, although not wiping away all of our worry, gives us great hope that we will actually MEET our baby boy and have the opportunity to care for him.

 Again, thank you. We could not have made it through these last few days without all of you who have rallied around us. I am blessed to count each of you as friend.

 With love,

Rebecca

April 16, 2011

Hi everyone,

 We just wanted to send out a little update regarding Ellis. Tim and I met with the geneticist yesterday. It was a bit overwhelming/exhausting. I feel like we left with more questions than answers, but that is where the doctors are at right now too. I think Tim and I are a bit of a puzzle to them, as there is nothing in our health or family history that would indicate this should be happening. The geneticist basically presented us with a number of hypotheses, but nothing definitive. She does have a plan for narrowing down a possible diagnosis, but she also said that we might just have to wait until the baby is here. Her hypotheses vary in level of seriousness, some sounding more hopeful than others.

 The next step is for us to meet with the maternal fetal specialist again to do a 3-D or 4-D ultrasound...this would give them a better picture of what is happening developmentally. Depending on what the rest of the amnio results reveal next week, they may be sending out the chromosomes again to be looked at under an even clearer picture. These results could take a few more weeks. We will also be meeting with NICU doctors to find out more about what they do there and what our wishes are for Ellis's care. Depending on what the next level of ultrasound shows us, there is a possibility they would do an MRI to find out more. Clearly after this whole conversation, I went home and took a long nap.

 We are still hopeful after receiving Monday's news about chromosomes 13, 18, and 21, but there is still so much unknown. It is still scary and we often find ourselves just worn out by the whole thing. Thank you for your continued prayers and support. I know I've said this before, but Tim and I have been overwhelmed by the love and care others are showing us during this time. There are people praying across the country and even around the world. Many who don't even know us! We are so thankful that others are willing to plead on our behalf. No matter the outcome, we know that Ellis is a blessed and loved little boy. Thank you for loving him already.

 As you pray, here a few specific requests:

-The doctors are most concerned about his brain. They weren't able to get a good look at what exactly is happening there and this could give us a better idea regarding life expectancy. We are praying for healing in this area of his body, specifically.

-Tim and I returned to work this week. It's been an adjustment to get back into a regular routine. We are in need of an extra amount of strength to make it through the days.

-This experience has obviously been a roller coaster ride. We are thankful for the grace that has been shown to us thus far, but are aware that we'll need God's grace to carry us through. This isn't going away today or tomorrow and the days ahead seem long.

 This week a certain line from a song struck Tim and I and I wanted to share it with you.

"For the risen king has given us this gift to love."

 This is exactly how we feel about Ellis and are thankful for the love that others are showering on us and him as well. Our desire is to love this little guy with everything we have. Our prayer is that we will have a long opportunity to do so.

 With love, Rebecca

In my tiredness, I forgot to add one little thing.

This morning our hearts were encouraged by something we hadn't experienced before.

 I've been feeling Ellis move for weeks now, but just yesterday I started to feel what I thought were kicks. This morning I felt it again and was able to feel the kicks with my hand. Ellis kept kicking, which meant Tim got to feel it too! Such a gift. I was feeling a bit worn down when I woke up this morning and those little kicks gave me a new burst of energy and hope.

April 27, 2011

Hi everyone,

 Just wanted to send out a quick update. We don't really have any new news as we are still waiting for the rest of the amnio report to come back. We are told it should be ready in a day or two. Today marks 3 weeks since we had our first ultrasound. Life has changed since then and time seems to have evolved into eternity. We look ahead to the future with a variety of fears, but know that just as God has carried us through this valley so far, He will go with us in the days ahead. My perspective on everything has changed and I'm thankful for what we've been learning so far.

 Our next ultrasound is this coming Tuesday, May 3. We, of course, have no idea what this will reveal. As much as I want to be prepared for any circumstance, I am praying for miracles. What a joy it would be to see little Ellis growing the way he should at this point in the pregnancy! His FREQUENT kicks and tumbles are such an encouragement and provide some of that hope we are searching for right now. A visit to my OB last week also allowed us to hear his heart beating strong.

 Listed below are some of the things we'd like to ask specific prayer for:

1. Amnio results and upcoming ultrasound...our hope is that some definitive news can be discovered from these tests. Of course, we're still praying for miracles. :) (Just as a reminder to you: we are praying about his brain, his heart, his spine, his kidney, his bladder, and his size).

2. Other upcoming doctor visits...We're finding that each and every doctors' appointment is draining, emotionally and physically. Even if we hear nothing new, the appointments make the reality of this situation so heavy on our hearts.

3. Back to work...We've both gotten back into the swing of things at work. We have good days and bad days (sometimes it's more like good moments and bad moments). We're thankful for the support we've received from friends, family, and co-workers and even enjoy some of the distraction work brings, but emotional exhaustion bears down heavy when trying to maintain a normal routine.

4. Worries about the future...we obviously have no idea what the future holds. The plans we had made for this coming year are on hold and that's hard. Aside from the excitement about becoming parents and welcoming a little baby into our lives, we were looking forward to some of the changes we would be making as a family. For now, we don't know what any of that looks like.

I'm so thankful for each of you. Thank you for your prayers, emails, cards, phone calls, and support in other ways. Tim and I are so thankful to not be making this journey alone. What a blessing our friends and family have been...each of you are a part of that. So, thank you.

 With love, Rebecca

April 30, 2011

Hi everyone,

  Yesterday we received the results on the rest of the amnio. The results were normal! (This means that all of Ellis' chromosomes appear to be normal. Genetic anomalies can exist outside of a chromosomal abnormality, but these results tell us there are no duplicated or missing chromosomes). Although not knowing what to expect, Tim and I were both surprised by this. We are thankful for what sounds like good news, but don't fully know what to make of the results either. We have another ultrasound scheduled for this Tuesday and hope that more information can be found then. Further testing will also be done on the chromosomes to get a closer look at each individual band. For now, we are choosing to be thankful with the latest results and are allowing it to bring us some hope about what's to come. Obviously, we still have no idea what lies ahead on this road and we continue to approach things day by day.

  I know I've said this a thousand times, but we are so thankful for the support we've received from all of you. Your prayers mean more than we can articulate. So many of you have shared our story with others, allowing them to pray as well. It's been an overwhelming blessing. This situation is so much bigger than us and we are a bit humbled to be at the center of all of it.  We're praying for miracles and can't help but wonder if a miracle is transpiring as we speak. This we know, God is good and will continue to be good, no matter the outcome. In that, we rest.

With love and appreciation,

Rebecca  

"Be at rest once more, O my soul, for the Lord has been good to you."

-Psalm 116: 7