Pictures

Thanks Kristin :)

Surgery went well

Surgery went well today. Hannah is now resting on the vent. We hope she will be able to start feeds tomorrow and also quickly wean off the vent.

Thanks for your prayers for surgery!

Hannah Update

Things have been much more stable with Hannah. She has pretty much weaned off of CPAP and back onto her trach collar. She has had no other episodes of breathing trouble, though we still have not figured out what happened during the episodes. We are just thankful she has been stable.

Her nissen g-tube surgery is scheduled for tomorrow morning. Before they can do the surgery she needs to be tested one more time for her infection to make sure it is gone.

We had a family conference with the doctors today to talk about Hannah's care plan. If all goes according to plan, we should be able to have Hannah home within 2 weeks after her stomach surgery.

We still have a lot of things to do before Hannah comes home. Please pray for us as we make decisions and ready the house for her to come home.

Prayers for Hannah

Just wanted to send out a quick update. It is hard to explain everything that has been going on.

Yesterday, Hannah had two episodes where she had difficulty breathing and then eventually stopped breathing all together. She needed to be bagged and turned blue before they were able to get her going again.

We are not sure what happened. There are a lot of theories involving trach placement, trach length, and other things. At this point no one knows what really caused the episodes.

Hannah is back on the vent and has been stable now for over 24 hours. They have been weaning the vent again and she is doing fine right now.

Please pray that either we figure out and fix what caused the episodes yesterday, or they just plain do not occur again.

Adam and I were there to witness one of her episodes and I'm not sure I will ever forget seeing everyone rush to her bedside and work on her.

Please pray for a stable airway and strong breathing for Hannah.

How did this happen?

It is now clear to doctors and to us that the genetic mutation the girls have is autosomal recessive. That means Adam and I have a 1 in 4 chance of having a baby with the disease.



The disease we carry is obviously very rare, or at least presenting itself in a very rare way. Yesterday we met with a biochemist metabolic specialist from U of M who, like everyone else, is very puzzled by our case. He, along with specialists from Cleveland Clinic, Johns Hopkins, and DeVos Childrens, is studying our case and trying to figure out what it is.

But how did two people in the world who carried this super rare gene meet up and have children? Adam and I just happened to have this rare gene in our bloodline and just happened to meet up and fall in love? Well, it is something that only God could ordain...

-Adam just happened to go to Calvin for college, even though he had never heard of the dutch reformed tradition

-Nathan just happened to work at Baker Bookhouse with me and just happened to force us to meet

-I just happened to be one of the only people in my family to marry a non-dutch person (LOL)... which should strengthen our bloodline, not weaken it!

Anyway, we are as puzzled as you are, that of all the people in the world to marry, we met and fell in love, and we both have this crazy rare genetic mutation that makes a very rare disease. It could only be from God! He ordains everything, including the fact that we now have two very special girls to love and take care of.

More photos and an update

Hannah had a great day today. She successfully weaned off of CPAP and is just on a little oxygen with a humidity collar! This is great progress and also confirms to us that she will not come home on a vent. This is great news!

She is doing a great job fighting the infection and is waking up a little and starting to interact a little more. When we got there tonight she was awake and we saw her eyes for the first time. It was very exciting. Adam and I also got to hold her for a long time, as well as suction her ourselves (I know-a weird accomplishment, but it makes us feel good to take care of her ourselves).

Big Sister

Here is what Hannah looks like today. Check out the IV in the head :(

Hannah Update

It was an eventful weekend for Hannah. On Saturday evening, she was weaned off the vent and on to CPAP. She was doing great with it until the early morning hours of Sunday, when she started having labored breathing. The docs put her back on the vent, but even with higher settings she was still having trouble. They called in the ENT to check out her trach and he decided to do a trach change to see if that would help. It helped immediately and she seemed to breathe better. They think it might have been positioned funny or something, causing her breathing trouble.

But, Hannah also started to burn a fever and have a high heartrate early Sunday morning. They took some labs that indicated she has an infection. So, she is also now on some pretty strong antibiotics. They think the infection may have come from her UAC (umbilical IV site).

Today, Hannah is looking much better and they were able to wean her back off the vent and on to CPAP. She is breathing well on CPAP right now.

Hannah seemed to be waking up a little and squirming around when we visited around lunch time. She also had to have a lumbar puncture today to check to see if the infection spread to her spinal fluid. Preliminary results show that it has not.

They have pulled the UAC line and will have to start a standard IV today to administer the antibiotics. I am hoping they are able to get a site in her arm and not have to put one in her head. I don't want her hair touched!

So, this is a little set-back for Hannah, but it will hopefully not affect the plans to have the g-tube surgery and get her home in a couple of weeks. She will have the rest of the week to heal and rest, and then they will probably set up the stomach surgery for next week.

Please pray for quick healing for Hannah, and also that she will be home soon!

Surgery was a success

Hannah's surgery was a success this morning. She is now trached and recovering on a vent. As soon as she is awake they will try to wean her off the vent and then re-start feedings again. It will take about a week to recover from the surgery, at which time the doctor will do the first trach change and then it will be up to us!



Waiting for the surgery



Recovering after surgery



Seeing her precious face

Hannah Update- Wednesday

Hannah has been struggling to breathe on CPAP. She often gets into a position that makes her start to retract in her breathing and it is very sad to watch her work so hard. Because of that, we asked that the ENT consult be moved up.

The ENT was able to come this afternoon and told us what we thought we would hear: that he is recommending a trach. Hannah is not handling her secretions well and her vocal chords are not moving as well as they should. All of this is causing her difficulties with breathing.

Frankly, getting a trach will be a relief for us. It will stabilize her breathing and help her handle her secretions so much better. We are comfortable with a trach, and though we would love it if Hannah could breathe well without one, it is obvious that is not in the cards. So, having accepted that fact, we asked that the doctor perform the surgery as soon as was possible for him.

The tracheostomy will be performed tomorrow at 12:30. We are excited for Hannah's breathing to be stabilized and to see her beautiful face without the CPAP setup all over it. We are also excited to hold her comfortably without worrying about her breathing.

We are doing well and excited to push things forward and get Hannah home quicker. We are excited to have her join the family. I already picture myself sitting on the couch with both girls next to me. Noah is excited to have two babies to kiss and love on.

We praise God for the strength to continue moving forward in this journey.

I can’t remember a trial or a pain
He did not recycle to bring me gain
I can’t remember one single regret
In serving God only, and trusting His hand
All I have need of, His hand will provide
He’s always been faithful to me. (sara groves)

We thank you for your prayers. We thank you for coming up to us even when we don't know you to say you are praying. It means so much.

Love,

The Vedras

Hannah update

Sorry for the lack of updates. Yesterday was a busy day as I came home from the hospital and the boys came home from camping. We had a nice evening together reconnecting with the boys and getting settled at home.

Hannah is still doing well, maintaining her breathing on CPAP. She has had some trouble tolerating her feedings, so they took a little break for a day or so and now have re-started them again this morning. She seems to be doing better with them today. She is being fed through a tube that goes down into her small intestine.

We have been waiting for consultations from specialists and they are all trying to come as quickly as possible. Hannah has seen genetics, neurology, urology, and opthalmology over the last few days. We are eager to see the ENT and see what he has to say about needing a trach.

Hannah had an MRI on Sunday which showed very similar to Ellie's MRIs, revealing decreased white matter. The girls appear to have many similarities so far.

The plan is to wait until we get some information back from various specialists in order to make a decision on a course of action. We are hoping that we can be out of the hospital in less time than Ellie's stay.

Thank you for the prayers and words of encouragement. We will keep you updated as we learn more.

Holding Hannah Grace

I was able to hold Hannah Grace for the first time last night. She tolerated it really well and likes to cuddle :)

CPAP time

Hannah was successfully extubated today. She was breathing on her own for quite a while but then it became evident that she needed a little help keeping her airway open. She was switched to CPAP to help provide the pressure to breathe. CPAP does not breathe for her, like a vent, but just provides enough pressure to keep her airway open.

Hannah is following the same pattern as Ellie. It is not the path we were hoping for, yet it is one we are familiar with.

Hannah with no tubes




Hannah with CPAP

Vent update

They were able to turn down the vent even further for Hannah this morning. She is taking most breaths on her own. The settings right now are at 15 breaths per minute, but Hannah is showing on her monitor that she is taking 30-40 breaths, so most of them are on her own.

They are going to check to make sure her numbers look good and then try to extubate her! Ellie was extubated at this same age, but she had to be moved to CPAP because her airway kept collapsing due to lack of tone. That is what ultimately made her need the trach. If Hannah can show that she can breathe without her airway collapsing it would be a huge gift!

Please pray that by this evening we will be watching our daughter breathe on her own. We might be able to hold her this evening too.

In other updates, the boys are off camping with my Mom and Dad for the weekend. Adam and Ellie will keep me company at the hospital with lots of visits to baby sister.

Thank you for all the kind comments and prayers. We are so blessed.

Hannah Grace photo album

I started a photo album for Hannah at Facebook. It should be able to be viewed by the public. Check it out!

Hannah Grace in the NICU

Hannah is still on a vent and not breathing on her own.  We were visited by Ellie's Neurologist (and now Hannah's) to talk about her condition and a course of action.  Like Ellie, Hannah has minimal reflexes and diminished movement, so in a lot of ways this is looking like Ellie's unknown disease.  We are watching, waiting, and praying.  The Lord is my shepherd I shall not stand in want....

-Adam

Introducing Hannah Grace

Hannah: favored grace

We chose the name Hannah because we knew no matter the outcome that God in his loving grace had chosen this path for our family. Believe me, we will need the daily reminder!

I was laboring all day yesterday and by evening it was getting painful. We arrived at the hospital (me, Adam, Mom and Ellie). I was in active labor at 5-6 cm. I was prepped for the c-section and at 12:06 on August 7, Hannah Grace was born.

Hannah did not try to take a breath after birth and was intubated. She was clearly floppy right away, with some similar signs to me and Adam: floppy legs, wrist drop, curving in feet. Wow, it is hard to describe the moment that my prayers went from "please crying baby, please crying baby" to just "breathing baby."

Hannah was settled into the NICU and I into recovery. After an hour or so they were able to wheel me (along with Adam, Ellie and Mom) to the NICU to visit Hannah Grace. The sights and sounds were so familiar- in both a good and bad way really. Hannah was stable, breathing on a ventilator but not needing any O2.

I've been down there again this morning and she is still stable. They have turned down her vent settings a little and she has done well, so that is a good thing. At this point it is assumed that she has what Ellie has. We are just praying that she will have a lesser form.

Please pray that she will not need a trach. That is such a burden and we would love to be spared everything that goes with having a trach. Please pray that Hannah would continue to improve, whether it is in little ways over what Ellie has, or in huge ways too.

We're all still in shock here. It is hard to express emotions and disappointment.

The best laid plans...

The amnio went fine this morning but the results came back that the lungs were not mature enough to do the c-section this week. We're quite puzzled about this since Ellie was born at 37 weeks with fine lungs, but who knows.

This throws all our plans out the window, as they won't repeat the amnio until next week Monday, putting a possible c-section date closer to 38 weeks, which is past the gestation I went with Ellie. Maybe I'll make it until then, otherwise we will be having an emergency c-section if I go into labor.

Trusting in His plan...