2 week update

Hope had her 2-week birthday on Thursday. We rejoice continually in these milestones, and know that every day with her is a gift from God. She had her 2-week checkup with Dr. Laughlin yesterday, and it went very well. Her head circumference is in the 10th percentile (which is on the charts!!), and her weight jumped an entire pound in the 10 days since we last went to the doctor. She was exactly 6 lbs, 9 oz on the Tuesday after her birth, and yesterday she was 7lbs, 9oz. Dr. Laughlin was thrilled with this weight gain.

Hope is an extremely good baby. She really does not cry, unless she's got a dirty diaper that I haven't noticed, and she sleeps a lot. When I asked the doctor about her sleeping, he said not to worry as long as she continues to gain weight. So I won't--I'll try to bask in these early days when she's easy!

We still have a few more weeks before the trips up to Indy for doctor's visits begin, so I'm trying to recover and get her eating as much as I possibly can. We praise God for the blessings that he has showered upon us, and pray that He will continue to heal our daughter. Psalm 30 says:

"You have turned for me my mourning into dancing;
You have loosed my sackcloth and girded me with gladness,
That my soul may sing praise to You and not be silent.
O Lord my God, I will give thanks to Your forever."

There is nothing that more represents how we feel right now, and we pray that no matter what comes our way, we will continue to sing praise and give thanks to God.

He is risen! He is risen, indeed!

Sweet Hope

1 Week

This picture was taken Monday night, after we got home from the hospital. I'm hoping to get my camera out today, since every day she's looking less jaundiced and more like a real baby.


The hospital did indeed let us go on Monday. As I had anticipated, there were a few speedbumps getting out the door with Hope. Unfortunately, just because I knew there might be some problems did not make those problems any less emotional for me. We started by being given a list of specialists we would need to follow up with. It included a pediatric cardiologist. Hope has a condition called arterial septal defect, or ASD for short. The gist of this is that she has a small hole in one of the walls of her heart. It is non life-threatening, and could possibly fix itself. We are praying that it does fix itself, but if it does not, will require surgery in about a year. We had known about this for a few days, since they do routine echos on newborns with any birth defect. What was new to us, though, was needing to follow up with a pediatric orthopedist. We were told, by a new NICU doctor that we had not been working with, that Hope had hip dysplasia. They did a quick ultrasound on her and confirmed the diagnosis. This condition, when found early (0-6 months), has a non-surgical treatment that is very effective (the baby wears a brace for about 2 months). If not treated, it can lead to all sorts of problems, including varying degrees of lameness. At the time, I felt that the doctor was being overzealous. How come our other doctor had not heard the tell-tale click in Hope's hip that this new doctor had? I was extremely frustrated. When we got home, though, my dad helped me think through the benefits of something like this being found early: it means that Hope won't have trouble walking, and although the treatment will be annoying, it will cure her problem and she will never remember it. What it meant for me, sadly, was yet another impediment to bonding with my baby--which I felt I had already missed 5 crucial days of in the NICU. Our final speedbump involved them declaring our carseat unfit, and David needing to go down to the hospital supply and buy a completely new one. I'll leave that story at that. There were several times where I needed to leave the room and cry by myself, and David took care of the situation. I am so thankful that he had the ability to handle the situation with composure and grace, where I just wanted to throw up my hands and scream.

Finally, they let us go. We came home to 3 big kids completely thrilled to see Hope, and one littler kid less thrilled. In all the worry about Hope, I had completely forgotten to worry about Rose adjusting to being a big sister. And it has been an adjustment. She has cried a fair amount, thrown some pretty decent temper tantrums, and generally been clingy. But each day is getting a little better for her, and I'm trying to hug her and hold her as much as I can.

We also came home to a house held completely in order by grandparents. My parents and David's mom have done a great job taking care of everything: I have not had to worry about entertaining kids, taking sick kids to the doctor or picking up prescriptions, and I think I even heard the vacuum just now. Our parents have been amazing.

While there is still so much I could write, I'll try to hit the highlights of the past few days quickly. Our pediatrician down here, Dr. Laughlin, referred us to an orthopedist here in Bloomington that could look at Hope's hip for us. My Dad took me to see him on Wednesday. He was able to relieve my worries a lot. Hope's hip is a little loose, but that is not uncommon in 5-day olds, and often they tighten up on their own. Additionally, if Hope's dysplasia does not tighten up on its own, it is such a minor case that she would not need to wear a brace--they would just keep a close eye on it over the next year and then re-evaluate. We also learned that Bloomington does not have the technology to do the hip ultrasounds, so we will be needing to go back up to Indy in a month for an evaluation by a pediatric orthopedist who can do the ultrasound. We got paperwork in the mail yesterday from Peyton Manning Children's Hospital with a list of about 5 appointments with different specialists that she will be seeing in the next 3 months. The most significant is the neurosurgeon, Dr. Young, and we will be seeing him mid-May. Until then, we only have routine new-baby checkups with Dr. Laughlin, who has been extremely kind and helpful through all this stuff the past few days. He has even come to recognize my mother-in-law, who had to take Laura in last Friday with a burst eardrum, and then Rose in on Tuesday with an ear infection. She'll be going again today--taking Carver back to see if his strep has reincarnated.

Please pray that our children will heal. All 4 of the big kids have a cough and runny nose. Laura and Rose are on antibiotics for their ear infections, and we'll see what Carver needs today. The kids all want to touch and hold Hope so badly, but we're trying to hold them back a little bit so they don't cough and sneeze on her. It's tough.

But, above all, we are still rejoicing in our miracle baby. We pray that she will continue to grow strong, and that we will be able to handle whatever comes her way with grace.

Moving Forward

Bless the Lord, O my soul,
And all that is within me, bless His holy name.
Bless the Lord, O my soul,
And forget none of His benefits;
Who pardons all your iniquities,
Who heals all your diseases,
Who redeems your life from the pit,
Who crowns you with lovingkindness and compassion;
Who satisfies your years with good things,
So that your youth is renewed like the eagle.



We feel extremely blessed today. We gaze in wonder at our sweet baby, and cannot help but praise God for the gifts that He has given us. We know that as time goes on, our memories will dim, but we pray that we will remember how God has healed our diseases, redeemed our lives from the pit, crowned us with lovingkindness and compassion, and satisfied our years with good things. We feel that He has pulled us back from the edge of a cliff, and given us more than we dared to hope. He has been so good to us.

This is my last full day in the hospital, and Lord willing, Hope's as well. The neonatologist has cleared us to go ahead and start preparing to take her home, and will be monitoring her today to double-check that she is completely ready to come with us. She is nursing as well as any of our other babies did. This morning, they pulled her NG tube (the tube that was going through her nose down into her stomach so they could feed her supplemental meals) because my milk has completely come in. She and I are on our own for feeding, and they are just going to watch her today to make sure she's getting enough. David's assignment today is to jury-rig the carseat so that we can get her home. He went to JoAnn's last night and bought several different sizes of foam padding, and today he'll be working on that to get it to fit into the carseat and provide support for her encephalocele. And tomorrow, we'll be discharged!

I am looking forward to bringing Hope home and introducing her to the big kids (Rose has now graduated to this elite status :) I am looking forward to resting up and being able to attend holy week services at our church. I am looking forward to being able to introduce her to many of you, and letting her testify to God's amazing power in our lives. Thank you for your unceasing prayers for us. Thank you for letting God work through you to minister to us and encourage us. We would ask that you would continue to pray that Hope would grow strong and healthy for surgery this summer, and that God would continue to be merciful to her and to us.

Hope pictures!

Successful Delivery!

Hello, everyone. This is David writing, so things will not be as eloquent as usual. Here is the quick version, since we are still tired and short on time.

Hope is alive and doing very, very well! She was born on Thursday, April 14 at 11:25 AM. She weighed 6 lbs. 12 oz. and was 17 3/4 inch long. She had an APGAR score of 9 -- she came out of the womb screaming with her lungs open wide.

Hope has continued to do well since then. She has breathed on her own from the beginning. She has not needed any life support of any kind. Other than her encephalocele she is completely healthy. We give God glory for His kindness to us in this. As far as Hope's health goes, this is just about the best outcome that was possible. She is alive and strong.

Hope is still in the NICU, but only because her blood sugar level has been borderline from the beginning. The NICU here at St. Vincent in Indianapolis is "aggressive," in their own words, on the blood sugar level because of the way it helps babies to remain stable and grow. So, they want to see her able to keep a consistently strong blood sugar level before they are going to release her (either to Anna's room or from the hospital). In order to keep her blood sugar level up Hope is getting supplemental nutrition from donated breast milk (check it out if you are able to donate. If you are having a baby soon and he needs extra nutrition, ask if donated milk is available instead of formula.) Because Hope is not very interested in eating -- like all our other kids at this point she falls asleep after a few sucks -- she has a tube inserted in through her nose in order for the additional milk to be given to her. This is apparently pretty common in NICUs and they do it because it is less invasive than giving nutrition through an IV.

Anna was very tired yesterday and in a lot of pain. She was grateful for a few women who stopped by to visit, and especially for her Doula, Barbara Lehr, who was faithfully by her side throughout the day. I was often with Hope, making sure she was getting the kind of care we wanted. Barbara was able to stay with Anna for the many times that I was not able to be with her. Barbara's wisdom, experience, and godliness was of great help throughout the day -- thank you!

Anna slept well last night: "Well" relative to sleeping in hospital rooms! She is feeling much better today. She is still tired and in some pain, but nothing compared to yesterday. She has been in to see Hope twice today and both times Hope was able to latch on.

About two hours after she was born Hope had an MRI done so that neurology could get a clearer look at what is going on her brain. We have met with our pediatric neurologist and our pediatric neurosurgeon to discuss the results and what their recommendation is going forward. Neither of them thought that there was any substantial change in the condition of her brain from what it was when she had a fetal MRI done. The sac is about 1/4 the size of her head and is filled almost entirely with fluid. There is a small amount of brain matter in the sac that should have been part of the cerebellum. As a result, the cerebellum is slightly undersized. This is exactly how things stood 6 weeks ago.

The neurosurgeon would like to wait about two months before performing surgery to remove the encephalocele. This is shorter than the 3 month period that he had discussed with us after the fetal MRI. He would like to see her in 1 month to check how she is doing and then hopefully do surgery a month after that. From his perspective, there is no reason at all that she cannot go home as soon as the neonatologists (the pediatricians who run the NICU) say she is ready.

We also met with our neurologist, who is different than the neurosurgeon. Surgeons cut stuff, other doctors don't. So, the neurosurgeon will be doing the surgery (literally brain surgery) to remove the encephalocele and then the neurologist would be doing all of the followup and any future non-surgical treatment. The neurologist basically confirmed all of the things that the neurosurgeon said about how Hope's brain looked. He talked with us a bit about what to expect about after the surgery.

The short version is this: the brain is really, really complicated. We know very little about it. Even with an MRI, that is still just a big-picture fly-over of how the brain looks. There could be little details wrong that we can't see (and even if we could see them all we wouldn't know what they all mean). So, with this kind of surgery and with a brain scan like the one he saw for Hope, there are a lot of possible outcomes. She could have everything from severe mental and physical handicaps to absolutely no ill effects. If the neurologist had to guess, he expects that Hope would have mild to moderate handicaps of some kind. Given the complexity of the human brain, that is the most that the specialists of the specialists can tell us right now.

In other words, as she has been from the beginning, Hope remains in God's hands. He knew her before she was born, and He made her precisely the way He intended to. The neurologist says that these defects in her brain were present well before the first trimester was over. From that point on, all that human hands could do is shear away the excess (the encephalocele) and do our best to nurture her as she is. That is what we hope and plan to do -- to bring Hope home to live as a part of our family, in whatever capacity she is able to. What a joy!

At this point, it looks very likely that we will be able to bring Hope home with us soon. Once she is able to get full nutrition from mom and keep her blood sugar level up that way then we will be able to bring her home. We are hoping that this happens by Monday or Tuesday, which is as long as Anna is able to stay at the hospital. So, if everything goes well, we will all be home together by the beginning of next week.

I also want to thank my mom who has been watching our kids for the past two days. The kids have been good for her, but we know it has been hard (even including taking Laura to the doctor for an ear infection and having two [2!!!!] house showings). We are very thankful that she has come out and is taking care of our children. It is a great burden lifted off me to know that the children are safe and happy. She is truly a "worker at home" who has "washed the saints feet." We honor her and ask you to do the same.

We thank you all very much for your prayers. Please continue to pray:

-- that Anna gains strength and that the pain remains under control.
-- that Anna's nursing progresses well and that Hope is able to get full nutrition from her within a few days.
-- that Hope remains strong.

Most of all, give thanks with us, rejoicing in God's goodness.

Pictures and video will be coming up soon in future posts.

Final Amnio Results

It is a beautiful day here in Southern Indiana, and as I sit and write on the front porch, the kids are running around in the cul-de-sac. Thank you, Lord, for spring!

We finally have the full amnio results! And they are completely normal! We are praising God for this, and I am very, very thankful that we did not receive bad news so close to Hope's due date. I know, I know, we were the ones who chose to wait until the latest date possible to have the amnio, and I would not change that decision for the world, but as we get closer to Hope's birth, I am thankful for good news in the midst of increasing worry.

While this does not exclude the possibility of some over-arching genetic problem, it excludes a lot of them. After Hope is born, we will meet with a geneticist to determine if she has any other signs of genetic defects, and will go from there if he decides there are.

We are within a week of Hope's birth, which is hard to believe. On Tuesday, David's Mom will fly in to help us with the kids during this week. On Thursday, David and I will head up to Indy for a c-section at 11 am. David will go with Hope from there, as they evaluate her in the NICU and then, later in the day, do an MRI. Sweet Barbara will stay with me (actually, they don't allow doulas into the OR except when you get a nice nurse who lets her slip in--so pray we get one of those on Thursday!). What the days after that look like depend entirely on how Hope is doing. I will have my cell phone (but will not put the number up here--sorry!), and will probably be letting somebody else field the phone calls. We will be putting updates up as often as we can, but I have no idea how often that will be.

We are praying for what the doctors would consider a very unlikely possibility, and we would ask you all to join us in that, especially on Thursday. We are praying specifically that Hope will be healthy, stable, and strong, and that her encephalocele has a good skin covering. We are praying that the neurosurgeon decides to send her home with us to get bigger for a few weeks or months before surgery, and that Hope and I can regain strength at home.

We are thankful to our Lord for many, many things, the biggest and most obvious being the medical technology that we have today. We are thankful for our other children, our family and church family so willing to help and encourage us, and we are thankful for baby Hope, who has already made such an imprint on our lives. We pray that she will have many years here with us.