Tuesday, August 31, 2010

Going Home . . . Kind of . . . Maybe!

Oh yeah baby! I'm wearing a pink Giraffe print sleeper!

After our weekend with the boys, Jesse and I were really feeling the need to be back home with them - we just can't stand being away from them this much (although my mom is doing an awesome job with them and deserves a medal of honor, or something more appropriate for unexpectedly parenting two four year olds)! So, we talked to the doctor Monday morning about the possibility of being transferred back to the Med if it didn't look like we would be able to be home within the next week and a half. The doctor definitely felt our urgency. Within the last two days, Caroline has seen 8 specialists to "tie up loose ends." Yesterday, she saw the eye doctor, the surgeon, and a plastic surgeon who is a hand specialist. Today, she saw the nephrologist (kidney doctor), the surgeon, a different plastic surgeon, the physical therapist, and the occupational therapist. That was all before noon today.

The eye doctor yesterday said that everything looked good with her eyes - all good optic tissue. The surgeon yesterday took out her central line - last thing poking in her. The hand specialist said that Caroline is a candidate for an operation called index pollicization. This is basically where they take the index finger and make it into a thumb. This wouldn't happen until she is at least one if we decide to do it which we probably will. If we leave her hand the way it is . . . well, just imagine you don't have a thumb and you'll understand the need for it. The nephrologist wanted to do a kidney scan that evaluated whether or not she had urinary reflux. Basically the same as acid reflux but for the kidney (urine going back into the kidney instead of in the bladder). The ultimate goal is to ensure that we keep her one good kidney in good working order. She had that procedure today and we will hopefully know the results tomorrow. The second plastic surgeon looked at the bone structure around her eyes and determined that everything looked normal but it is really to early to tell. We will have an appointment to go back to him in a couple of months. The physical therapist looked at her range of motion throughout her whole body. We haven't gotten to talk to her in depth yet but it seemed from the exam that the only concern is in her left arm which we already knew. The Occupational Therapist helped us with her feedings. It is very common for a baby who has been through so much to have trouble feeding. Especially babies who have been intubated. In extreme cases, they can be terrified of having anything down their throat. We had a very good session with her but Caroline isn't doing great with her feedings. Fortunately, she has all the mechanics down, we just need to work on her stamina.

Caroline also had blood drawn today to use for genetics testing to hopefully figure out why she has the defects she does. We probably won't know anything about that for a couple weeks.

The only thing that we haven't done now is had a MRI. Although Caroline has had many head ultrasounds that came back normal, they would like to do an MRI in a couple months that would check to see if there was any brain damage from being on ECMO.

Now, really the only thing the nurses are doing for her here are giving her meds, monitoring her oxygen, and helping to work on her feedings. These are all things we could easily do back at the hospital at home. SO, the doctor came in today around 4:00 and said that she thought Caroline could be transferred as soon as Thursday morning. The only thing we are waiting on is our case worker to figure out if the transfer is covered by insurance and if it isn't how much it might cost us. The doctor said that in some cases, if they have jumped the gun, not only is the ride back not covered but the hospital stay back home wouldn't be covered. We obviously don't want that and will hopefully know more tomorrow what the insurance situation will be like.

Please pray that everything will get worked out. To be home home, Caroline will need to be completely off oxygen and feeding 2 ounces by mouth every three hours. To just get back to the Med, we need everything with our insurance to work out.

It is amazing to me that we are even talking about these possibilities already . . . Thank you again for your prayers, love and support!

Sunday, August 29, 2010

A weekend of visitors

We had a great weekend! Got to see our boys and had many visitors. I felt like a normal new mommy showing of her beautiful new baby for a bit. It felt like a very normal day with my sister talking about getting a pedicure with her new neice, my brother-in-law talking about taking a nap with his new neice, my mom crying as soon as her new grandaughter was in her arms, my great friend Lindsay talking about taking Caroline to the lake, and my great friend Lisa talking about getting Caroline some Bling! Yes, it felt like a normal day! Hopefully we will have one of these "normal" days in our own house very soon!

Caroline is doing really well. They are trying to tie up all loose ends so we can hopefully go home by the end of the week. She got the IV out of her hand yesterday and should get her central line out today. That will mark the very last thing poking in her skin. She is still on oxygen but is on very little support. She is completely on my milk now! The eye doctor was in earlier and said that her eyes are normal. I love hearing doctors say "normal" . . . We should be getting visits from the kidney doctor and the Physical Therapist soon. Hopefully, if all of these doctors sign off, we will be heading home soon! Please pray for that to happen. We are missing being with our boys daily terribly. We want Caroline to be ready though so please pray that she stays strong and continues to progress as she has.

Friday, August 27, 2010

Great Progress!

Today was full of great progress. We tried Caroline on a bottle for the first time, again, just to see what would happen. She of course took it like a pro. The nurse said, "Let's give her about 20 minutes and if she doesn't do well, we will give it to her in her feeding tube." Well, in typical Caroline style, she was finished with the entire bottle in 7 minutes flat and was asking for more. As of right now, she has taken 3 bottles and they increased the amount by 10 cc's today alone. This little girl wants to go home as badly as we do. She needs to get to 2 - 3 ounces at a feeding and as of right now, she is just over one ounce at a feeding.

They also decreased her oxygen support today and she has maintained all her good levels. The nurses that had her down in the PICU have come up to visit her today. She is known as the little miracle baby around here. Everyone is just amazed at how far she has come in such a short amount of time. Remember, she looked like this just a week ago . . .

This is a picture of Caroline Skyping the boys. How cute is that?!?! They don't care a bit about Jesse or me. They just want to see their sister!

Thank you for your faithfulness in your prayers for our family. They are felt by all of us and it is clear that God is hearing them and answering them! Praise be to God!

"In the tender compassion of our God, the dawn from on high shall break upon us, to shine on those who dwell in darkness and the shadow of death, and to guide our feet into the way of peace." Luke 1:78-79

Thursday, August 26, 2010

Slow and steady wins the race?

We have had a couple fairly quiet days and Caroline is doing really well. She was extubated on Tuesday evening. It happened really fast. The doctor basically came in and said, "Let's try it and see what happens." and she has done very well since. It is so amazing to get to see her whole face and hear her cry. She still doesn't have her full vocal cord power - she is still sore from the respirator so her cry sounds like a little cat cry. She is on the nose cannulas for oxygen but is being weaned off of that. She is currently at 33% oxygen support with a flow rate of 3 liters. Room air is 21% so once she gets to 21%, they will wean the flow rate.

Her feedings are also going well. They are up to giving her 25 cc's of my milk through a feeding tube every 3 hours. I tried breast feeding yesterday and it didn't go very well. She got very upset so it didn't last long. Earlier today, we tried again. She didn't get upset but didn'treally care about it. Then, on a whim, we tried again tonight and she latched on for about 5 minutes. So, we are definitely on the right track.

Last night, we had kind of a scary episode. Well, it was scary for Jesse and me. Apparently, no one else thought it was a big deal including Caroline. She got something called Supraventricular tachycardia. At about 9:45 last night, about 10 minutes after this picture was taken

I was standing next to her bed, stroking her leg and all of the sudden her monitor started beeping. I looked up and it said that her heart was beating 247 times per minute. I of course said, "Well, that's not right!" Unfortunately it was. Within seconds, what seemed like the entire NICU staff was in her room. They kept insisting that it wasn't a huge deal; she could stay like that for several days if not weeks. They tried to get an EKG but they couldn't get the machine to work so to get her out of it, they got two pint sized bags of ice and put them on her face. Almost instantly, her heart rate went back down to normal ranges. The nurse said something like, "Well, she doesn't seem to be bothered by it at all." And she didn't. Basically until the people flooded in and the ice was applied to her face, you wouldn't have known anything was going on. This added tremendously to my concern. What if this happens when we get her home? How will I know if it is going on? I of course asked these questions and apparently, they do eventually show signs like not eating and fever. We were reassured repeatedly that this was not a big deal and it may never happen to her again. We had trouble leaving her last night but were so exhausted we had to leave to get some sleep by around 11:45.

This morning the cardiologist visited and again went through the episode and discussed the implications of the condition. He reiterated that this could have been an isolated incident but they would monitor it closely. He decided to put her on a beta blocker to help with her heart rate. This would be something she would need to be on before her heart surgery as well.

So, today was spent holding her and watching her sweet face! She is such a miracle!

It is so hard to leave her at night. Just like when I was pregnant with her, her most active time is at night. She is so alert and wants to look around and play. So, we have been staying pretty late to get in some extra bonding time. This has caused some pretty tired parents!!!

Please continue to pray for her and our family. We continue to feel like we are in a battle for her. She has come so far in her two weeks of life but she has a long way to go. Please pray for the doctors specifically. Pray that they know the right timing for each step they take with her. Praise God for everything He has done in her life so far and the impact she has already made.

Monday, August 23, 2010

We spent almost the whole day getting to hold Caroline. You could tell she loved it as much as we did. We think we will be able to extubate tomorrow morning. Next step . . . working on the feedings!

Sunday, August 22, 2010

Are you ready to hold her Mom?

Are you joking?

Yes, a big answer to prayer and again ahead of schedule. I thought I wouldn't be able to hold my Sweet Caroline until she was extubated but her nurse today decided I had waited long enough. What a blessing it was to finally get to hold her (thank you for praying for that!). And, I got to do it for a good amount of time and of course can't wait to do it again.

She is continuing to do well. The doctors said they can see her getting off the respirator tomorrow and the next big hurdle will be her feeding. I asked what the timeline would be like after extubation and of course, it all depends on her. If she is able to feed well, it shouldn't be long. Possibly even a week or so. Wouldn't that be amazing!?!

Thank you for your faithfulness in prayer. Jesse and I are uplifted daily by the prayer support we have gotten from all of our friends and family.

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20

Saturday, August 21, 2010

Ahead of schedule

Caroline continues to be ahead of all predictions made about her. She came back to the NICU from the PICU on Friday afternoon. The doctors said that it looks like her right lung has all of its tissue. They said that babies with CDH often only have a bud of a lung and that is why they do so poorly. Last night on rounds, the doctors told Jesse that Caroline could get off the ventilator in 5 to 7 days. This morning, the doctor said that she could get off within a day or two. She would still need breathing support through the little tubes in her nose but based on how she has progressed so far, she probably wouldn't need those long either. If all of this holds true, God willing, I should be able to hold her by the end of the week. Wouldn't that be such a blessing! I get so jealous every time I see a nurse come in and reposition her. I keep thinking they will ask me if I want to help but apparently you need to have a degree in nursing and be wearing scrubs :).

She has been more alert and I keep getting to look in her eyes. While it is a little less comfortable in the NICU (we don't have a room to stay in next to hers anymore) we do get to spend more time with her and that has been great. We get to comfort her when she gets upset, hold her hands, and look in her eyes when she decides to bless us with the opportunity.

Please pray that she will get off the ventilator soon, that she will need little to no support once she is off the ventilator and that she is able to feed well once she is able. If you can squeeze it in, please also pray that I get to hold her soon. Jesse would also probably appreciate that one for him as well :)!

Thursday, August 19, 2010

A Great Day!

When we went to bed last night, the surgeon told us that he was 50/50 on doing Caroline's hernia surgery this morning. It all depended on if she continued to progress well. This morning, we were woken up by the anesthesiologist at 6:30 asking us if we had any questions about the surgery.

By 8:10 she was back in the operating room and we were in the OR waiting room. We were told that the surgery would probably last until noon. At 8:45, we got a call that the first part of the procedure went well and they were going to begin the diaphragm repair.At 10:00, we got the call that they were finished. Because of how quick the procedure took,we were sure something had gone wrong. Just as God has worked with the rest of this process, the news wasthe opposite. Things had gone so well, they didn't need the full time. The best case scenario happened again and they didn't need to patch her diaphragm, they simply needed to pull her liver down and sew the two parts of her diaphragm together. If they had to patch the hernia, it would have been very likely that the patch would need to be repaired when Caroline is 4 or 5.

Caroline was back in her PICU room recovering by 11:00 and we were able to see her. They decided to leave the cannulas in just in case but by 2:00, they decided she wouldn't need ECMO again and to take them out. That procedure was done by 2:30 and the boys were able to see her by 3:30.

One of the ECMO techs was still in her room after the surgery and before the cannulas were taken out. She said that in her 20 years of doing ECMO, she has never seen a baby do so well when they had this condition. Caroline is truly a miracle baby and has been blessed by having so many people care about her and our family! We thank God for each of you!

Now that the surgery is over, the next 24 - 48 hours are very critical. Please pray that her body responds well to the surgery and that she is able to continue to improve. While it was a blessing that she was able to get off ECMO and that the cannulas were taken out, that resource is no longer a possibility. If her little body starts failing again, they will need to think of other ways to support her. Please pray that this won't be necessary and that she will continue to fight on her own.

Wednesday, August 18, 2010

An update

What a whirlwind of a day! God has been answering prayers! Last night, we went to bed thinking that Caroline would be on ECMO through the weekend and her hernia surgery would be sometime at the beginning of next week. When we woke up, the surgeon was in her room thinking that the surgery could happen as early as today because she was doing so well. For this to happen, she would need to be successfully taken off of ECMO, all her stats would need to remain high and her swelling would need to continue to go down.

By about 11 am, the best case scenario was that she would be taken off ECMO and they would let her rest throughout the weekend with surgery on Monday.

They started the trial run of taking her off ECMO at 12:22. She immediately did well on her own. The ECMO tech said he can tell within the first 30 minutes how they will do and she was doing great. About 2 hours later, they decided to cut the tubes, leaving the cannulas in, and take her completely off ECMO.

The surgeon came in again around 3:30 and decided that she looked so great that they could do the surgery in the morning. I heard the ECMO tech on the phone to someone saying, "Yeah, I went to take my break and came back to a completely different baby! It's amazing!" It is so nice to hear positive things after being inundated with scary possibilities!

We still haven't heard for sure when the surgery will be - we should know for sure within a couple of hours.

Please continue to pray for wisdom for the surgeons, for Caroline to continue to do well, and traveling mercy for all the family coming in! Please pray that Caroline will tolerate the surgery and will fight through it the way she has for the past 7 days!

Thank you all for your prayers. Please know that we feel like we are standing with an army at our sides!

Please Pray!!

We got some encouraging but scary news this morning. We could possibly go to surgery to fix the hole in Caroline's diaphragm as early as today. The doctors have been very pleased with her oxygen levels on reduced support of ECMO. They are going to do a trial run, turning the ECMO completely off, to see how she does. If she does well, the surgery will likely happen later today or tomorrow. The surgeon said to the doctors, "If you think she is really doing that well . . ."

She is responding very well to being off the paralytic medicine. It has been awesome to see her respond to our voices and touch. She has been moving around a little bit, is trying to breathe on her own and trying to cry a little bit like any normal baby would!

Please pray that Caroline is strong enough and ready to be taken off ECMO!
Please pray that if she comes off ECMO that the surgeons will know exactly the right time to do the surgery!
Please pray for the surgeons during the surgery!
Please pray that Caroline continues to do so well!

Tuesday, August 17, 2010

Moving towards surgery

Caroline has been hitting all her targets over the last couple of days and the doctors are generally happy with her progress. Thank you so much for your prayers! So far, she has only needed ECMO at 50% of what she is allowed to have, she has passed fluid which is a good sign that her swelling is going down, and she is moving a little bit which is a good sign that she is able to come off the medicine that is intended to keep her paralyzed while on ECMO.

Over the next couple of days, they are going to try to wean her more off the ECMO machine to see how she handles it. At the levels she is at right now, she is saturating at 100%! Can't get any better than that! To prepare her for surgery, the doctors are going to try to lessen her swelling by giving her lasix which is a diuretic. Depending on how she reacts to all of this, the surgeon plans to have surgery off of ECMO early next week.

We have been blessed so much by all of you throughout this process! It is so obvious to us that God is doing some amazing things. One of my friends told me that she read that there can only be one ECMO patient in Austin at a time and if it isn't available, the next place to go is San Antonio. This seemed amazing to me so I talked to the ECMO specialist about it. She confirmed that not only can there only be one ECMO patient in Austin but that the day after Caroline got on it, another patient here needed it and had to be lifeflighted to San Antonio. It is so clear that God has had his hand in every part of Caroline's life and this journey we are on.

Please pray for Caroline to be able to be successfully weaned off of ECMO (that her heart and lungs will be able to be strong enough), that she will be able to get rid of the extra fluid, and for the surgeons to know when the time is right for the surgery!

Caroline gets to have visitors with her :)!

Thank you so much for all the love and support!

Monday, August 16, 2010

"Little Miss Stable"

Our sweet Caroline was born at 12:44 PM on Thursday, August 12th. We knew we would face some difficulties. We knew she had a multicystic kidney that was probably nonfunctioning, we knew she had only four digits on her left hand and a shortened radius bone on her left arm, and most importantly, we knew she had a hole in her heart. The defect is known as VSD (Ventricular Septal Defect). While in utero, we were told that this defect was fairly common. So common, that we wouldn't need to change our delivery plans and she would possibly not need to have surgery.

When she was born, she immediately had severely labored breathing and was turning blue/purple. They showed her to me quickly and started working on her. Before they took her to the NICU, they showed her to me again and her color returned back to a nice shade of pink.

Because of some issues that I had with the first c-section with James and Jack, the anesthesiologist gave me a lot of medications during the procedure. By the time I got to the recovery room, I could barely keep my eyes open. The first thing I remember is Jesse coming in and telling me that there were more issues than what we expected with Caroline. He said that she had a hole in her diaphragm and some of her lower body organs were up in her chest creating lung damage. Some short time later, the Neonatologist came in and to describe the disorder in more detail. All I remember is him saying they were going to lifeflight her to Austin.

Once back in my room, the helicopter pilots came in with Caroline so I could see her before they left. I remember the pilot saying they were the best there is and she was in great hands. For 24 hours after she was born, I had so many medications in my body that it was painful to keep my eyes open and be awake. Because of this, the magnitude of the situation didn't sink in for some time.

Caroline left College Station around 4:45 and we were told that the flight would take about 30 minutes. When we hadn't heard from the hospital in Austin by 6:30, Jesse called to get the latest information. The nurse at the Dell Children's Hospital told Jesse that because her lungs were at a low percentage of saturation, they thought they would need to put her on ECMO. Extracorporeal Membrane Oxygenation is a very serious process where they basically take all the blood out of the body, oxygenate it and then put it back in the body. This was devistating news and the nurse suggested that Jesse come right away. Jesse got to Austin by about 11:00 pm.

Caroline in the NICU in Austin

By the time he got here, she had stabilized and they decided to keep her in the NICU to monitor her levels. Apparently, your lungs need to saturate in the 85%-100% range. Caroline was right at the boarderline and they were monitoring her closely to watch her levels. She was on the respirator and would fight everything they did causing her saturation levels to drop. After about 21 hours of close monitoring and many ups and downs, they decided that they couldn't risk her droping anymore and would need to start the process of putting her on ECMO. Jesse called me at the hospital in College Station with the devistating news. This was about 30 hours after the c-section and I knew I had to be in Austin for her surgery.

Fortunately, my Dad and two of my very best friends were with me when I got the news. We immediately started working on getting me checked out of the Med and to Austin as quickly as possible. My mom, dad and I made it here by about 11pm on Friday night. By the time we got to Dell, the procedure had started and things were progressing well. There were about 20 people either directly working on her or on standby to help if needed. The surgery took about an hour and a half and the surgeons said it went very well and she immediately started responding positively to the machine and was saturating at 100%. If this trend was to continue, they would be able to start thinking about doing the operation to pull her organs back down where they belong and close the hernia in her diaphragm.

To give you a little idea of the magnitude of what is happening to her and the machines she is on, she has at least one nurse dedicated to her at all times. She usually has two if not three. Additionally, there is a person at her beside that they fly in to specifically monitor the ECMO machine. Last night, there was a man flown in from Tennesse and now there is a woman flown in from Iowa.

Here is a picture of all the machines she is on. You can barely see her little head in the middle of the picture.

We have been given a room right next to hers so we are able to go see her whenever we want. Because I am still recovering from my surgery, they gave me a hospital bed in the room next to hers. Without that bed, I would not be able to be here. We have also been accepted into the Ronald McDonald house which is right across the street. So far we are only going over there to shower and clean our clothes. Dell Children's hospital is amazing. I hope none of you have to ever be here but know that it is an amazing place. They keep giving us a courtesy cart that they restock daily full of cookies, snacks, drinks and coffee. I also get free meals because I am connected to Caroline being here.

Now that she has been on ECMO for several days, we should be hearing soon about a decision on surgery to correct both her diaphragm and her heart. Because she needs a strong heart to recover from the possible damage to her lungs, they are considering doing the heart surgery first while she is on the ECMO machine. There is some danger in that she is on a blood thinner while on ECMO and this is always on a concern during surgery. With the surgery on her diaphragm, there is concern about how her lungs will respond. The initial fear was that her right lung was completely unformed. Because we had so many ultrasounds when I was pregnant, they are pretty sure now that her lungs were almost completely formed before the intestines and liver got sucked into her chest cavity which is an amazing blessing. Yesterday morning one of the nurses called her "Little Miss Stable" and at this point that is the best thing we can hope for.

If you can pray for us, please pray:
that Caroline will continue to do well on ECMO
that her right lung will become strong and healthy
that her swelling will reduce
that she will be able to tolerate coming off ECMO
that she will be able to tolerate the surgery on her diaphragm
for the doctors and surgens to have the wisdom to know when the timing is right
for Jesse and me as we settle in to the reality and magnitude of what we are facing
for James and Jack. Please pray that they feel peace and love throughout this journey.

Praise God for allowing us to be Carolines parents! Praise Him for the doctors and support staff that He has placed by her side minute by minute. Praise Him for every minute that He allows her to fight to stay alive. Praise Him for my family and friends who we wouldn't be able to survive this without. Especially for my parents who are taking care of James and Jack and bring them down here to see us and Caroline, Jesse's dad who flew down here to support us, my sister and brother who are helping keep Jack and James loved and cared for, and Jesse's sister who has been keeping many people updated with what is happening with Caroline. Praise God for the many people who are praying for Caroline right now. Praise God for being the All Mighty physician! We know that through Him Caroline could be healed as I write this!

His disciples asked him, "Rabbi who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." John 9:2-3

**Latest update - The cardiologist that we saw while I was pregnant just came in and said that he didn't see any reason for Caroline to have heart surgery in the near future. In fact, he said that from the scans that he saw from Thursday, he didn't think she would need to have surgery before she turns one if she is able to get past all of these other issues. Praise God!!!