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!

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.

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

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.

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!

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

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 :)!