Thursday, March 31, 2011

Putting on Some Weight

The past few days we have really been working on Abigail gaining weight. She is getting all of her feeds through the tube in her nose for now. It seems she was burning too many calories when she was trying to bottle feed, so that is why we are giving her a little rest. They also increased the calories in her formula, so that is an adjustment as well. The newest formula is much heavier on her stomach, so she has been having some spit ups. Hopefully she will begin to tolerate it better soon.

We also got her a new crib mobile. She really does love it! She seems to like music and she spends so much time in her crib that we thought it would be good for her. It is super girly and has several music selections. It is already proving to be a wonderful purchase!

Eyes on the prize!

Sleeping Beauty!

Tuesday, March 29, 2011

A Plan is Shaping Up

Our baby girl was 5 weeks old yesterday. We met with several doctors today and have a bit of a plan for now. One of Abigail's GI doctors made a call to a liver specialist at a transplant facility to find out more about potential liver transplant. They discussed her case in length and decided we really need to wait a full 3 months from the Kasai procedure to really know if it has been successful or not. The doctor explained that sometimes it takes a while for the liver to reconfigure itself. In other words, don't give up on the liver yet!

There are several requirements that she must meet in order to even be put on a transplant list:
1. She must be at least 4kg which is around 9-10lbs. She is currently about 6 lbs.
2. She can't have any other problematic organs, i.e. kidney, lungs (which is why we must correct her heart issues prior to transplant)
3. She can't have any other life threatening illness.

Therefore, at this point she is not a candidate for a liver transplant.
Her liver is simply not in bad enough shape right now to be put on the list.

Another bit of information we received was that the doctors don't believe Abigail having Cat Eye Syndrome should affect her chances of receiving a transplant. This is great news!

In the meantime, we will press on and move forward with Abigail's heart surgery. The cardiovascular team will meet tomorrow and discuss her case with this new information. We expect to find out soon what their plan of action is and when they would like to perform the heart surgery.

For ongoing recovery her doctors have increased calories in her formula in efforts to promote weight gain. They will continue to increase calories until they see steady growth. The liver specialist also recommended starting some antibiotics to fight possible infection, so Miss Abigail got a new IV.

It's been a long day but we are glad a plan is forming that we can work towards. We continue to pray for the healing of her liver and we remain hopeful that the Kasai procedure will prove a success. Thanks for checking in on her.

A visit from Aunt Brittany!

Daddy and his sweet little girl!

The next person who sticks a needle in me is gonna get it!

Saturday, March 26, 2011

A Few Pictures

Not much of an update today. We thought you would enjoy a few recent pictures of our precious girl.

Bath time:

She wasn't much of a fan of the bath at first.

She was a happy girl after it was all done!
Her incision has healed nicely.

She is 6 lbs as of today and we are working hard to put some more weight on her.

We can't thank you all enough for all of the prayers for Abigail and our family. We don't know what the future holds but we have faith and we know that we do not walk this road alone.

For we walk by faith, not by sight. - 2 Corinthians 5:7

Now faith is being sure of what we hope for and certain of what we do not see. - Hebrews 11:1

Friday, March 25, 2011

Liver Problems

This morning was flat out crappy and that is putting it way too politely. In the labs that were drawn this morning Abigail's bilirubin level and another they are watching closely had doubled from previous numbers. It is currently fifteen and a normal baby's should be less than one. As you can see in some of the pictures from the past few days, and even before, she is pretty yellow.

As days go by the signs are showing that the surgery did not take or that the liver is in really bad shape. Either way, the doctors have begun making calls in search of liver transplant options. We don't know if she would even be a candidate for a liver transplant with all of her other complications (Heart Surgery needed being the major one) and the Cat Eye Syndrome. A few cases have had transplants in the UK but those are the only ones our doctor knows about. We also don't know if she would need to have the heart surgery prior to getting a transplant. At this point we don't know much about the transplant situation other than it is likely she will need one.

Additionally, a transplant would require relocating for some amount of time, which is a scary thought considering Stephanie will be needing to go back to work in a little while. Whether east coast or west coast or in between we just have to wait and see.

In the meantime, we ask that you would pray that God would lay his healing hand on this sweet little girl. Also pray that He would comfort us and continue to give us strength while we wait. You more than likely have said a few prayers on our behalf if you are reading this and for that we are so grateful.

This morning she was wide awake!

Wednesday, March 23, 2011

Abigail Another Day

Abigail is pretty much the same since our last post. She is progressing on her feedings and is now up to 45ml every 3 hours. Steroids were started this morning in hopes to help decrease inflammation in her liver. She had her drain pulled and her IV stopped working so it came out as well. Now that she is on a substantial amount of feeds her TPN and lipids were stopped as well. We are just hoping to put a little weight on her and watch her bilirubin level to see if it steadily goes down.

A visit from Papa Mike and a decent look at where our little girl is camping out. It looks like controlled chaos!

Thank you for your continued prayers.

Monday, March 21, 2011

Abigail - 4 Weeks

Today our baby girl is one month old! I really can't believe all that has happened in these four weeks. Abigail is quite a fighter. Her biggest goal right now is to keep recovering from her surgery and put on some weight. Once she is fully recovered and ready we will start talking about heart surgery. Her heart is stable right now and as long as it stays that way we are in the clear to wait on surgery. We are still waiting to see if the surgery on her liver is working and with that only time will tell. She has gradually moved up to taking 30ml by bottle every three hours and is slowly putting on weight. Until she is up to her full formula feeds, she will be getting nutrients through her TPN and lipids. Last night the central line in her neck was leaking, so it had to be removed. So, now she has a new IV in her hand. We are hoping she won't need another central line until closer to her next surgery.

Thank you for checking in on Abigail and continuing to pray for our family. I whispered into her ear the other night "I didn't know it was possible for so many people to be praying for one little girl." We are humbled, grateful, and so thankful for the support we have been given!

Before her central line came out.

Our sweet blessing.

21 Yet this I call to mind and therefore I have hope:
Because of the LORD’s great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I say to myself, “The LORD is my portion; therefore I will wait for him.”
The LORD is good to those whose hope is in him, to the one who seeks him;
it is good to wait quietly for the salvation of the LORD.

Lamentations 3:21-26

Great Is Thy Faithfulness!

Friday, March 18, 2011

Busy Day

Today was quite a busy day for Miss Abigail. First, the eye doctor came by and dilated her eyes and did an eye exam. The report we got was that her eyes were normal. We are singing big praises about that! Next, the surgeon gave the ok for the tube that went to her stomach to come out. He also reinforced the drain in her incision because it was leaking. We now get to attempt feeding her slowly. Tonight we started with 10ml of pedialyte, which she is not a huge fan of. If it becomes too hard for her to take all of her feeds by bottle they will have to put a little tube down her nose.

Our sweet girl with no tubes on her face!

Proud Dad!

Uncle Ryan getting to hold her!

Proud Grandmother!

Working hard on her pedialyte! yuck!

We know we have a lot ahead of us, but we are so thankful for days like today.

Wednesday, March 16, 2011

A Good Day

Look at me! No oxygen!

What great day! Abigail was weaned off all oxygen today, so now we can see her pretty little face. Her bilirubin level was also down a little bit more. This means we are steadily moving in the right direction with her liver function. She still has the tube in her mouth that is draining any extra secretions from her stomach and a drain from her incision site. Once these two things are removed they will start feeding her very slowly. Until that happens she will still be getting all her nutrients from the TPN and lipids that are going through her IV.

A Visit from proud Grandparents!

Another exciting thing is that she can now wear clothes and mommy got to hold her!

Thank the Lord for more good news!

Tuesday, March 15, 2011

Small Victories

Today has been a big day for our little Abigail. Her breathing tube was removed this morning and she is now on just a little oxygen for support. Also, the doctors have been keeping a close watch on her direct bilirubin level and this was down slightly this morning. The level is still very high, but it is a good sign that the level dropped. We just hope and pray that the level keeps dropping and the liver begins to function as it is supposed to. She still has a tube that is going into her stomach that is suctioning out any extra air or secretions. This will hopefully be removed in the next day or two and then we can slowly start feeding her. She is still getting nutrition from the TPN and lipids going in her IV.

Her uncle Ryan is on spring break and finally got to come see her!

We are encouraged by the small improvements we have seen today, but we are also guarded. It is nice to be able to write about progress, so we hope it continues. Keep the prayers coming!

Monday, March 14, 2011

Abigail - 3 Weeks

Be strong and courageous. Do not be afraid because the Lord your God goes with you and will never leave you nor forsake you.
Deuteronomy 31:6

Our sweet baby girl is 3 weeks old today. So much has happened in such a short time. She is still on the ventilator, which she will be on for several more days. She seems to be recovering quite well from such an extensive surgery. She is getting nutrients through TPN and Lipids which is given through her one of her many IVs. Once she is weaned off the ventilator she will gradually be given nutrition through a tube in her nose.
Right now our biggest concern is that the surgery will work and her liver will start working as it should. It may be weeks before we actually know if it is working. We won't post pictures of her right now since she has a lot going on and does not look the best. So just know that she is hanging in there like the strong little girl she has become. It is very hard to see her go through all of this, but we know it is what needs to happen to heal her. She still has a very long road ahead of her, so we truly appreciate all your prayers.
We have been blessed beyond measure with amazing friends and family. We are thankful for the enormous amount of support we have received during this hard time including; gift cards, food, encouraging notes, flowers, and the list goes on. Our little family is very humbled by the outpouring of love you have shown us. Thank you for your continued prayers for Abigail.

Friday, March 11, 2011

Abigail - Surgery Day

Wow, what a day! Abigail's surgery went well and for that we are so very thankful. Faith, hope and Love, right? Yesterday was very long, full of prayer and quite a bit of worrying on our part. We arrived at 8:30am yesterday morning to do our routine diaper change, dilation, and feed.
Slow motion a for a few hours and we left at 11:15pm after we saw Abigail post op.

Abigail was on Pedialite the last few days which we quickly found out was not her favorite. She was not allowed to have anything after 10:00am so that made her 9:00am feed her last. At 11:30 we had signed consent forms (scary) and were planning on her having surgery at 1:00pm, it was to last 4-5 hours. Shortly after, they told us she was going to surgery early and started preparing the transport bed. Well she wasn't exactly thrilled with not getting fed and proceeded to scream for the next hour and we couldn't do much about it other than rock her to no affect. The early start time never happened and finally after the screaming had died down they took her back at 1:15pm. We walked her back and said goodbye and joined our family in the waiting room. At 2:30pm they called and said they were wrapping up anesthesia and putting in a central line. They would continue to give updates every hour the rest of the evening. However, 6:30pm came and went and then so did 7:30pm. Nothing. We were freaking out quite a bit and trying not to think of what all could be going on. Around 8:00pm we got a call saying they were closing things up. Finally, at 9:30pm, the doctor came out and talked to us about the operation. The short version of what he said was that there was a lot of swelling and inflammation to the area on her liver where they would connect the intestine. The gall bladder was non functioning and neither were the other ducts that drain from the liver. The doctors performed a Kasai procedure on Abigail which bypasses the gall bladder and connects the liver directly to the intestine. All of this, was done over an 8 hour span and included quite a bit of time on the front end for anesthesia.

Her heart held up well during the surgery but now Abigail will have to recover and be closely monitored to see if the fix to her liver is working properly. We are so thankful for the tedious and difficult work of the surgeons and staff. What a true gift!

The support of our friends and family has also been such a blessing. We ask that you would continue keeping Abigail in your thoughts and prayers as her little body recovers. Thanks.

The three most important things to have are faith, hope and love. But the greatest of them is love.

1 Corinthians 13:13

Family picture before surgery.

Wednesday, March 09, 2011

Abigail - A Diagnosis

We have been awaiting/dreading some genetics tests the past two weeks and have finally heard back from them. We have been in a medical limbo during that time and weren't exactly sure what our sweet girl has been up against. Now we know a bit more.

Yesterday we met with Abigail’s Neonatologist and we were given a diagnosis that explains most of the issues Abigail is facing. “Cat Eye Syndrome” is its name and essentially it means Abigail had extra pieces of chromosome 22. It was explained to us as accidental (meaning no explanation why it occurred) and very rare. You can “Google” it but there are very few documented cases so information on the internet is sparse. Abigail has some of the defining traits of this syndrome some of which are severe and others mild. Today we met with a geneticist who reiterated the fact that this syndrome is rare and that Abigail is an individual who may or may not show all or most of these traits. She said she even had a case of a person who didn’t know they had it until the age of 28. In other words, time will tell.

Abigail has already faced several challenges in her short lifetime mainly these:

1. Liver and Gall Bladder Problems - She more than likely has biliary atresia meaning her liver and gall bladder are not properly getting rid of the bile her body is generating. She is set to have this surgery Friday, March 11.

2. Breathing Issues - She has been on oxygen since birth and improved enough for them to send us to the progressive unit of NICU for several days. Last night it started to get worse and she is now on an increased amount of oxygen. She has also been moved back into the primary NICU.

3. Heart Problems - Over the weekend a murmur was discovered which led to more concern over Abigail’s heart. After a few tests and close examination of her heart we talked to her Cardiologist today and found out she had several anomalies. These problems help explain why she is having trouble breathing. Surgery to correct these issues is very likely but for now it is behind the liver and gall bladder in priority.

4. She has a bottom issue that is not too severe but will require surgery when she is more developed. Closer to 3-6 months old.

This has been a great deal to take in over the past few weeks but we remain hopeful. We have been blessed with a beautiful baby girl who we’ve fallen in love with and desperately want to bring home. It is really tough leaving the hospital, especially with news that seems to rarely go in her favor. We do know that she has great care where she is and that many people are praying for her.
There are many challenges Abigail will face in the coming days and it is the prayers, encouragement, and support of our family and friends and even people we don't know that we are so thankful for. We ask that you would continue to keep Abigail as well as us in your prayers.