Monday, August 31, 2009

Update - August 31

Yesterday was probably the worst day our girl has had since the day she was born. Before church, we went to the hospital to see her. She seemed to be doing well and was awake and alert when we saw her.

Micah went back in the afternoon so his sister Liz and her husband Scott could meet Lydia for the first time. The nurses told Micah that she had another apnea episode where she stopped breathing, but they brought her back without too much trouble. During the time Micah and Liz were there, she had a second episode when she stopped breathing, and unfortunately, Micah had to watch her turn blue before the oxygen was turned up and she started to breathe again.

Micah came home and an hour or so later we got a call from the chief neo-natologist. He was calling to tell us that she had another apnea and that protocol at this point would be to put her on a respirator to regulate her breathing for her. He had to ask our permission before they would do the procedure. Apparently, many parents in our situation with a child whose brain could be permanently damaged would choose NOT to put in the respirator and allow whatever is going to happen to happen. He said that if we didn’t intervene and put her on the respirator, she would continue to stop breathing and suffer pretty severe brain damage due to lack of oxygen and she would probably eventually die from one of the episodes. We of course opted for the respirator. While Micah was on the phone with him, Lydia was having another apnea and the doctor hung up with us quickly to take care of her.

We went immediately to the hospital. When we arrived, they had already intubated her and she was breathing easily. They wouldn’t let us see her for a few minutes because they wanted to finish getting blood to test her blood gas level (to make sure she’s getting the right amount of oxygen). The doctor did tell us that she was continuing (as she has always done) to breathe on her own. Her breathing is just very irregular and sometimes stops. We were also told that if at any point we want the tube to come out so we can see if she’s ready to breathe on her own, we can do that.

When we could go out and see her, it was upsetting. To see her with the tube in her mouth is heartbreaking. When they let me hold her (which, THANK GOD we can still hold her), the tube would sometimes pull at her throat and make her gag which was so painful to watch. It’s awful that we have to hurt her to help her.

When we put her back, things started to get even scarier. We watched as she had seizure after seizure. All told, she had probably five or six in a span of about a half hour. They gave her a bolster (a huge dose) of the seizure medication to make the seizures stop. Thankfully, she was on oxygen the entire time, so there won’t be any damage to her brain. After the medication kicked in, she was fine. She was squirmy and uncomfortable and let us know. She can’t cry because of the tube in her throat, but her face showed us she was MAD.

They discovered from some of her blood work that she may be suffering from an infection of some kind. The results take a little while to get back to show specifically what the infection is, so they treat it with two kinds of anti-biotics to knock it out. We’ll let you know when we know more about that.

The doctors decided it would be best to get an IV line started to get the meds to her more effectively. Unfortunately, she takes after her mom in that her veins are easy to find, but very difficult to stick. Our nurse Donna, who is just the sweetest woman, tried five or six times and wasn’t able to get a good line. We were thankful to see that Lydia responded to the pain of being stuck and even started to pull away whenever Donna came in and touched her.

She was calm and restful when we left her last night and we didn’t get any calls telling us anything else happened last night.

So, they’re still trying to figure out what’s happening to cause her apnea spells. The most likely possibility is that the seizure medication dosage got too low. They say that she can have seizures that don’t show physically as seizures because she might stop breathing before there are any signs. Once they gave her the medication, she calmed down and was fine. Again, we’re not sure if this is actually the cause, but it’s a possibility.

I don’t even know how to ask you to pray anymore. Those of you who have children know how painful it is to watch your child suffer and there’s just absolutely nothing we can do to stop it. This isn’t what we wanted for her or for us, but we continue to rest in the knowledge that she is upheld by our God who loves her infinitely more than we can ever comprehend. We don’t understand why He’s asked our family to walk this road, but we know that in all things He will be glorified.

Sunday, August 30, 2009

Lydia had to be put on a respirator to help with her breathing tonight. It was a rough night but she's resting calmly now with no stress on her breathing. We'll give a full update sometime tomorrow, but please continue to pray for our sweet little girl.

Friday, August 28, 2009

Pictures - August 28

All bundled up!

So awake!


Update - August 28

I know we just updated yesterday, but there’s more to tell today. So here’s another one!

Last night (after I updated) we headed back to the hospital to see our sweet baby. The nurse told us that during the afternoon, she had an apnea episode. What that means is that for about twenty seconds, she stopped breathing. Normally, when her oxygen levels drop as low as they did, she’ll snap herself out of it and it’s no problem. This time, they couldn’t stimulate her to breathe and had to use one of those bags to stimulate her enough to get her to breathe again and then had to put her on oxygen for a little while. While this is scary (and added to the general awfulness that was yesterday), they think they know what caused it. Since she’s still not so good at sucking and swallowing, they think what’s happened is that the food we’ve been trying to bottle feed her isn’t always being swallowed and it’s pooling in her mouth and then her throat. When she then tries to breathe, there’s too much going on and she isn’t able to.

As a result, they’ve asked that we stop trying to bottle feed her for a while. We will continue to work with her on the pacifier to teach her the sucking motion while they continue to tube feed her. It’s a little backwards step, but we need to focus on one thing at a time - turns out breathing is a little more important than eating :)

Today was a much better day than yesterday. Nothing very remarkable happened, but nothing bad happened either. She was awake a lot more today and worked really hard with us to get her to suck the pacifier while she ate tonight. We met with the physical therapist and speech therapist and got some exercises to do with her to strengthen her muscles and help her learn to eat. It’s nice to have something pro-active to do to move her along in the right direction.

We also got some chromosome test results back and thankfully her problem (as far as they can see) is not in any way connected with any kind of genetic or chromosomal defect. All that really means is that she doesn’t have something super-scary (trisomy 18 or Downs). It doesn’t give us a ton of info about what she has, but it helps us know what she doesn’t have.

We’ll be having a “Family Meeting” on Monday. We’ll meet with the doctors and nurses in charge of caring for her as well as the social worker and therapists. We all get together and start trying to come up with a plan of how best to proceed with her care and we can also get all of our questions answered. We’re looking forward to the meeting so we can at least have an idea of what the next couple of weeks or months is going to look like.

We’re doing much better today. We didn’t cry once today and we count that as a victory. We did our first normal thing since she was born and went out to dinner with my mom and dad. It’s hard not to feel a little guilty going out and doing regular things, but life keeps going whether we want it to or not.

Our God continues to give us grace and strength for each new day and we continue to have faith in Him to protect and heal our sweet Lydia. We thank you again for praying. Many of you we don’t even know but we are so thankful for you and are continually amazed by what the body of Christ can do together.

Our love to you all.

Thursday, August 27, 2009

Pictures - August 27

We are tired.

Holding hands with Aunt Amy.

Aunt Amy!

Grandpa Huff!

Grandma Huff!

Update - August 27

I would really love to tell you that we have nothing but good news to share, but today we don’t have very much. Thankfully, she is regulating her body temperature and is in a regular baby crib now.

Yesterday, she had to go back onto the nasal canula to help her breathe easier. Again, she breathes on her own, she just has to work harder than they would like to see. We’re confident that she’ll be off it soon, it’s just a little step backwards.

She is still not eating much from a bottle, although she seems to be trying very hard. It’s just taking her a while to figure out how to do everything at the same time. Please continue to pray that she can figure things out with her eating.

Yesterday, the doctor ordered an EKG to listen to a murmur he heard in her heart. He said it’s more than likely nothing and the EKG showed no signs of anything problematic. Apparently most babies have heart murmurs and no one knows about them, but because she’s in the hospital they see and pay attention to everything.

The doctor also ordered an ultrasound of her heart, just to check everything and make sure it’s working OK. While her heart is working fine, they did discover that she has a hole in her heart. It was described as moderate in size. If it was large, it would be cause for concern and possibly need to be operated on. As it stands now, she doesn’t need anything like that and the hole won’t get bigger as she grows. It is causing some problems with getting oxygenated blood to where it needs to go, so they will be keeping an eye on her heart to make sure there aren’t any problems. Again, this is apparently quite common and can fix itself, but please pray that her heart would be healed and the hole would close up.

We are really not OK. We know that God has His hand on our sweet girl, we’re just having a difficult time processing all of this and trying to adjust all of what we wanted for her with what it seems her life will be. We believe in a God of miracles and know what He is able to do and would ask that you continue to pray boldly for complete healing, knowing that His will is what we seek above all else.

Thank you for you prayers for strength and healing.

Wednesday, August 26, 2009

Pictures - August 25


Aunt Amy picked out this ridiculous hat! :)

Big yawn!


Tuesday, August 25, 2009

Update - August 25

The past two days have been filled with ups and downs. Yesterday (Monday) they were able to take Lydia off the CPAP and put her back on the nasal canula (the smaller machine to help with her breathing). She slept much of the afternoon that we spent with her, including straight through her EEG. Emotionally, it was a rough afternoon. When she spends all her time sleeping, she won't try to eat and that's very frustrating for us. It's the one thing she seems to not quite get a handle on, so it was a little discouraging.

Then in the evening, our amazing God did what He so often does - He gave us something good in the midst of our difficulty. Babies are supposed to eat about 60ml per feeding and Lydia typically will take 2-3ml per feeding from a bottle. Last night, she took 8ml! She worked so hard and was exhausted after, but we were so proud of her. It was a wonderful way to end a difficult day.

Speaking of difficult days, today was also not so great. It was more an emotional day because the reality of what could be hit us pretty hard. The results of her EEG showed no more seizure activity (PRAISE THE LORD) so that means the medication is working. They tested her blood and her level of medication is a little high, so they're attempting to back off a little and we're praying that will make her a little more alert. The EEG showed what the doctors called "not normal background activity" which no one seems to be able to explain to us, because they're not really sure exactly what it means. It's obvious there's something abnormal going on, they're just not sure why or what's causing it.

We tried to feed her again today and she barely took anything (less than 2ml) and the doctor is starting to prepare us for what might happen should she not be able to figure out how to eat on her own. This was probably the most difficult thing to hear today and like I said, made things a lot more real for us. The afternoon for us at home was difficult, but God gave us some encouragement from Jeremiah 17:7-8: ""But blessed is the man who trusts in the LORD,
whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." In the midst of our uncertainty that we can handle this, we know He will give us all we need not only to survive, but to thrive as we seek Him.

Again, after a horrible day, God gave us mercy and grace tonight. When we arrived at the hospital, Lydia was off the nasal canula AND WAS BREATHING WITHOUT HELP! We FINALLY get to see her beautiful face without anything in her nose! She woke up a little and tried to eat - she ate about 3ml, but they gave her her medication before we tried to feed her and that always tires her out. We got to do Kangaroo Care, which allows us to snuggle skin to skin, so she can build up her antibodies and be comforted by being close to me. It's amazing, but when we're snuggled up, her breathing calms down and she moves around so much more than usual. She also woke up and stared up at me for a long time. When it was time to put her back in her crib, she cried! She pretty much never cries because she's so drugged up, so when she does use her little lungs, we get really excited.

So, there you go. A lot of crazy ups and downs these past couple of days and I'm sure that won't stop. What we really need prayer for now is for her to learn how to eat. She needs to be able to take the bottle or they will eventually need to put in a feeding tube before we can take her home. We're watching as our amazing God is performing miracles for her - she's breathing on her own - and we know that's due to so many people praying for her. Please don't stop! We love you all and are so thankful for you.

Thank you again for taking time to read.

A few photos...

Resting in her little bed while Daddy talks to her.

The first time she opened her eyes (that we saw)!

This was the first photo we took of her before she was off the Cpap.

Update #2

Thanks so much for all of you who have offered prayers and encouragement on behalf of us and our little girl. We feel so supported and see progress in tiny ways.

It's hard to believe she's only been alive for almost four days. We had to come home without her yesterday, which was incredibly difficult for us, obviously. It was especially tough because right before we left, they had to put her back on the CPAP (continuous positive airway pressure). It's the big blue tube in her nose you see in the pictures. Again, it's not that she can't breathe on her own, she just sometimes needs a little encouragement. It just felt like a huge step backwards right before we had to leave her.

We did, however, have a very encouraging night last night. The IV that was going into her belly button to give her antibiotics and medication came out. Since we had to be so careful not to accidentally pull the line out, we haven't been able to do simple little things like change her diaper or snuggle with her. We are now able to do both of those things. Snuggling is definitely the best.

Today we've seen improvements as well. Even though she is still on the CPAP, they put her back on the smaller machine so we can feed her. Tonight she ate 3mLs from a bottle. We're working on teaching her sucking and swallowing. The sooner she can learn this, the sooner we can bring her home. We met with a speech therapist and a physical therapist to learn some tricks to help stimulate her and it seems to be working. It's difficult because the amount of medication she's on for the seizures makes her very drowsy and it's tough to keep her awake.

We know you all will continue to pray. Some very specific things would be that she can be taken off the CPAP and not have to go back on it. Also, we'd like to see her eat more and more from the bottle. Please also pray for the nurses and doctors who are taking such wonderful care of her, for continued wisdom as they treat her. She's also having another EEG tomorrow to see how her brain functions have been these past few days. Pray for a good report.

We just can't say enough how thankful we are for all of you. Our God has certainly blessed us through you. Thank you, thank you, thank you.

Lydia Update #1

This first entry was posted to facebook August 21, one day after Lydia was born.

Sorry that we’re lame and are going to do this via facebook instead of calling all of you wonderful, kind people who have been praying for us and our sweet little girl. It’s a bit much to think about trying to get in touch with everyone and telling this several times over. Lame or not, this is what we’re doing. We’ve not been trying to keep things a secret we just haven’t had time or brain power to get anything out to you. Feel free to tell anyone else you might know who would want to know.

Obviously you know that Lydia is here and many of you know that before she was born she was diagnosed with agenesis of the corpus collosum. DO NOT look this up on the internet. It will make you unhappy. We promise. We were told that the outcomes of what she has would be possible developmental problems later in her life and this is what we told many of you. We were not expecting problems with her delivery or anything else for many years to come. Things did not turn out this way.

When Lydia was born, they had pediatric doctors on call. They saw some concerning things in her including lethargic behavior and what looked like seizure activity. They took her away after we held her for a minute or two.

Initial reports the next morning were not good. We met with a neo-natalogist who was less than positive about what the future would hold for our little girl. Seizure activity seemed to indicate there was a bigger problem in her brain than was originally seen or anticipated. The doctors ordered an EEC (to monitor her brain function) and an MRI to get a better image of her brain. We spent much of yesterday in speculation and conversations with the doctors, waiting to hear the reports back from the pediatric neurologists.

We met with the neurologist this morning at 7:00am. Thankfully, there seems to be no other problem any where in brain and the seizure activity has stopped due to medication they currently have her on. These were all great things to hear because we now seem to at least have a cause for her seizures and lethargic behavior, as well as a growing plan on how to help her.

The rest of today was incredibly encouraging as well. In addition to having a ton of visitors (who graciously came and visited with US and not an adorable little baby) Lydia spent a good portion of today with her eyes open. She opened them and looked right at Micah for the first time! She also has been downgraded to a simpler and less involved machine to help her breathe. She can breathe on her own, she just needs a little stimulation. She also ate from a bottle for the first time today! She has had to have a feeding tube up until now.

I know this is a ton of information to digest, and I count you an incredible reader and friend if you’ve made it this far. We are encouraged every day to see her progress and are hoping for a little more each day. We greatly covet your prayers for our sweet little girl and for ourselves as well. One of the sweetest moments came when a social worker asked us if we had a good support system. “YOU DON’T EVEN KNOW!” we told her and went on to describe our own church family at Apostles and the Chapel and the church families of our parents at Calvary and Beacon Hill, as well as the family we have at CHS, in addition to all of you other wonderful people who just love us. We told her how deeply loved and prayed for our girl has been since long before her arrival and we’re so thankful for the testimony of what the Body of Christ can do.

Please don’t stop praying. We know that all the improvement we have seen has been because of the prayers happening on her behalf already, and can only imagine how much she will improve as she is continually lifted up. Though she is still in the NICU, we are hopeful to have her home early next week.

We are so thankful for our girl and for all that God is doing and teaching us in this time. We continue to seek His face, knowing that He will be glorified in all things in Lydia’s life, starting now.

We love you all and are so thankful for you. We might not answer right away, but we appreciate calls, texts or messages here. Your encouragement is such a blessing to us!

Thanks for reading!
Enjoy pictures!

Please feel free to let anyone who might be interested in updates know about the blog. The more people we have praying the better!