Wednesday, December 30, 2009

No more SVTs!

Hi everyone,

Thank you all so much for praying, especially for our new friends up here in the PICU.

Judah has gone 24 hours without any episodes of SVT. They started a medication called digoxin that seems to have steadied his heart rate. His color is improving all the time and the swelling in his face and neck peaked last night and is slowly starting to subside. The surgeon decided that the three drain tubes could be removed today because the bleeding had slowed down enough. My dad and I watched the procedure to remove the drains (which was really pretty cool :)). The sensor taking readings of blood flow in Judah's brain was also removed. I was particularly excited that a feeding tube was added and he is now receiving the food I've been pumping for him. So he lost three tubes and a big sensor on his head and gained one tube down his nose...not bad for one day!

Today's setback is his lung function in his upper left lobe, it is still full of "junk". The respiratory therapists in the PICU have been working on it regularly by doing a "lavage" which involves putting saline down his tube into his lungs and then sucking it back out again.
They also turn Judah every couple of hours and use a vibrator under his left side to try to loosen it up. We were bummed to find out that the x-ray of his lungs this afternoon didn't show any improvement from this morning. If he had improved they were planning extubate him tonight or tomorrow morning. Instead we have to wait until tomorrow to take another x-ray to determine whether or not he has made any improvements overnight. I really hope we can get his lung function back so that we can get the tube taken out. Since the lungs and the heart are so connected its one of the last "major" things we have left to do. If he can breath on his own, which it sounds like it is already doing in some ways, then we're one more huge step to getting out of the hospital.


One day out of surgery


Tonight was a tough night in the PICU. But before I write about that, Judah is doing well. He has had his share of bumps in the road today, but his overall progress is good. His goals for the day were comfort, clearing out the fluid/clots in his lungs, keeping his heart rate steady, and improving his perfusion. The biggest issue he has been having is something called a super ventricular tachycardia or SVT. Essentially, his heart rate skyrockets (230s-250s) out of the blue and he needs to be paced electrically or with medication. His blood pressure isn't affected by this, which is a good thing, but of course he can't stay at that rate. The theory is that part of the heart was injured during surgery and is sending out the signal to his heart to speed up really fast and that this will stop as his heart heals. We are encouraged because the last time he went into SVT he actually came out of it on his own without the pacer or medication.

He also has a lot of fluid and clots on his lungs, particularly on his left side. They are able to suction it out a little at a time. His nurse changes his position regularly which also helps to loosen everything up.

Because of the amount of fluid on his lungs and his random SVT episodes, the doctors have decided not to extubate (remove the breathing tube). In addition, they probably won't remove his drain tubes until after the SVT problem clears up. This is because the little probes that can be used to electrically override his SVT rhythm are attached to his heart muscle through the same openings as the drain tubes and they don't want to disturb those until they are sure they won't need the pacer anymore. Hopefully we will be able to extubate sometime tomorrow afternoon or evening.

To us, Judah is looking good. His color is improving and his pulses are nice and strong all the way down in his feet. He is starting to swell, especially on his face and chin, but that was to be expected. He has woken up a few times and even looked at us occasionally. The other cardiac families tell us to expect more bumps along the road to healing and we are trying to be prepared for any setbacks that might come. But for tonight, we are just thankful for the improvements we've already seen.

So I mentioned that tonight was a tough night in the PICU. When we returned from dinner a lot had changed. We have become friends with many of the other families up there and we are all rooting for each others' kids. The two families that we know the best have been through a lot. One family has been in the hospital for over a month and their son was finally extubated this morning, only to be reintubated tonight because he kept having episodes of apnea. The other family has known for some time that their son had such serious complications that he might not make it. He died tonight while we were gone. Please pray for Cutler's mommy, daddy, brother and sister. He was 9 months old and his parents have been so encouraging to us in the midst of their own loss.

We met another family as they waited for their son to come out of open heart surgery today. We also talked with a mom and dad who we met in the NICU who are facing their 1 week old son's open heart surgery tomorrow. (It is a very busy week for our surgeon!) We keep joking that the cardiac families are taking over the PICU.

We are so grateful for all of the love and support we have. Please pray for us to know how to share that love with the families we are getting to know in the PICU.

Thank you and goodnight,


Monday, December 28, 2009

Out of surgery on the road to recovery

So quick note ... Judah is out of surgery number 2. They were able to stop the extra bleeding from the stitches but they were not really sure what was causing it. Everything looks good so far. He is starting to get into the 8-16 hour period where his heart realizes what happened to it and get tired. This is to be expected. The 24-48 hours are critical for recovery if it makes it past those good then the rest of the recovery will be good. Thanks everyone.

Surgery Update

Hi everyone,

This is going to be quick because the computer battery is running really low. Judah's heart is doing really well after the surgery. However, the bleeding is not stopping the way the surgeon would like to see. They watched it for a while first but eventually decided that they need to go back in and try to find the source of the bleeding. We did get to see him before he left again and his oxygen saturation is finally up to 100 percent. It is such a relief to see the number that we've been obsessing over for the past 5 days staying steady where it should be.

We will update again when we can...


Sunday, December 27, 2009

Day 5 - Surgery T-minus 1 day

So today was the big move to the Pediatric Intensive Care Unit (PICU). These are the guys that deal with a lot of the heart issues and children. We loved being in the NICU with all the great nurses, doctors and parents, but it is nice to have our own room with Judah and space to spread out a bit.

The PICU is a different place. In the NICU there were 7 babies in a room and just about as many nurses, visiting was very limited (parents only) and they had very structured processes and procedures. In PICU it a little bit more laid back. As I said we have our own room, we don't have to do the 3 minute scrub in, and we can have visitors. So for the first time my parents and Kirsten's family got to see Judah. There was no holding but they could look. Also Kirsten was able to nurse Judah again. It was really a blessing to have the family at least see Judah before the surgery.

Speaking of the surgery its starts at 8 am tomorrow. As it approaches we're getting more anxious. We're excited the day is here and he'll be on the road to recovery, but also a bit scared of the whole process. There are some other parents here with children that have gone through heart surgery. Some of them we know from the support group we're in. It was really good to talk to them about their experiences and hear how operations generally go.

As we go in to surgery please pray for Judah (obviously), us, and our family. Also pray for the all the parents that we have met both in the NICU and PICU as they continue to care for their children, some without all the support we have had.

The surgery will take about 5 hours. If all goes well we'll probably get to see him around 1 or 2. We'll try to update the blog a bit after that.


Day 4

Well, Judah had to to back on the prostaglandins around midnight last night. Thankfully, he hasn't really been exhibiting any of the side effects of the drugs. His temperature is a little high but more importantly he has not had any episodes of apnea. Although we were really hoping that he wouldn't need the meds again, they really are helping him keep his oxygen saturation where it should be.

Because he is more stable on the prostaglandins, we were able to hold him again. This has been so much fun for Kirsten and I. Also, while we hold him, we can feed him breast milk through a bottle. Kirsten, also, got to kiss his head for the first time. These normal mother-son interactions have been great considering we do not get to take him home for a while.

The surgery will start on Monday around 7am.
They are going to move Judah to the PICU (which deals with cardiac patients after surgery) on Sunday morning sometime so they can monitor him before surgery. We are looking forward to the surgery because it will mean we are on the road to recovery...but it is also scary to think about. As we get to the final day before the surgery we need prayers that we will let God be in control of this whole procedure and remember that he cares for Judah just as much as we do.


Saturday, December 26, 2009

Christmas - Day 3

Merry Christmas!

Judah had an o.k day today. So far he is still off of the prostaglandins, yay! His temperature has been normal and he hasn't had any episodes of apnea since he stopped the prostaglandins. Sadly, his oxygen saturation levels (Sats) haven't been strong enough for us to have him out of his isolette since I took him out to nurse last night. Every time he becomes active his oxygen levels drop below acceptable levels, and of course nursing is very active. He is being given more oxygen in his bed through his nasal cannula and another tube is blowing oxygenated air into his bed so even taking him out of it will likely cause a drop in his Sats. Currently he is being sedated every 4 hours or so to keep him from getting upset because crying seems to cause the most trouble for him.

We keep reminding each other that it is more important that he's able stay off of the prostaglandins than it is for us to hold and nurse him. The reminding only does so much. This morning was really tough for me because I had such high hopes that we'd be able to nurse again soon. For the first time since he was born I really had to was so hard to just stand and watch him knowing that I couldn't hold him again for a while. Matthew and I have been praying that God would rest his hands on Judah because we cannot offer him ours. Please join us in that prayer. Even though we can't hold him, it is great to watch him sleep peacefully, and we are thankful that he is still without the prostaglandins.

It has been fun to be in the NICU during Christmas. Many of the nurses are wearing cute holiday scrubs, including auntie Amy who was wearing some that had really cute penguins in santa hats. In the last 24 hours we've received a beautiful Christmas book (donated by a family in memory of their child) and two ornaments handmade by nurses. One of the ornaments is a glass ball that has the saying "The first steps a child takes are into your heart" written on it. That nurse got footprints of all of the babies, cut them out, and put each of the prints in one of the balls. I don't know if that nurse understands how much that little handmade ornament means to us...I had just finished my big cry over not being able to hold Judah when she gave it to us. Of course, it made me cry more, but in a good way this time :)

We are overwhelmed by all of the comments and emails we've been receiving. We are greatly encouraged by them even though we don't respond individually.

We are so blessed...


Friday, December 25, 2009

Day 2

Good evening. Judah is resting down in the NICU. We have been able to extend our stay at the hospital until tomorrow using a complimentary room reserved for NICU families. It is so nice to stay close a little longer :) Judah had a really good day today. His prostaglandin medication was turned off early this morning. It is used to keep the PDA (a connection between the pulmonary artery and aorta) open after birth, but it has side effects like apnea and fever, both of which Judah was experiencing. The hard thing is that we may need to keep the PDA open if the hole between the top chambers of his heart isn't allowing enough oxygenated blood to mix and make it out into his bloodstream. Until the last few hours, it looked like he was going to be able to stay off of the prostaglandins because his oxygen levels were staying high enough. However tonight he started having a few drops in his readings and we may need to restart the prostaglandins. This was all expected and we're just thankful that we were able to go most of the day without the medication.

Two very exciting things happened today also. Matthew finally had a chance to hold Judah, which they both really enjoyed. And...I was able to nurse him twice. Amazingly, he really wanted to eat and did a great job. We may or may not try again tomorrow depending on how his oxygen levels are tonight.

Matthew and I actually left the hospital tonight to have Christmas dinner with Nehemiah, our parents, and my sisters. Auntie Amy (Matthew's sister) is working in the NICU tonight so Judah wasn't alone for Christmas either :) It was so good to spend some time with Nehemiah and watch him open his presents. He's having a wonderful time with his grandparents and aunties!

Thank you all for your comments and prayers!

Merry Christmas!


Thursday, December 24, 2009

Judah-24 hours old and Birth Story

Judah is doing great! They were able to take out the breathing tube tonight and his oxygen levels are mostly staying high (almost too high, actually!). He also had an IV line in his arm removed as well as a small catheter that was in through his umbilical cord. He had a PICC line placed in his foot that takes the place of those two lines. He's alert, breathing on his own, and with less lines in, which means...we're able to hold him! I held him for the first time around 9:30 tonight and it was wonderful! We should be able to hold him as much as we'd like until his surgery on Monday.

We also learned from the cardiologist today that they were able to confirm that Judah has an abnormal coronary pattern (the vessels that have to be switched from the pulmonary artery to the aorta). Thankfully it isn't a really complicated pattern and our surgeon believes it can be taken care of without too much difficulty. Still, it's another unexpected detail to pray for.

I know many people have been asking about the birth so here's what happened. Around 8:20 pm I noticed that I had had two painful contractions in about 10 minutes. I thought I had indigestion (I let Matthew talk me into eating sushi for dinner) but noticed that it kept coming back in uncomfortable waves. Within an hour I was really uncomfortable and we called the hospital to see what they thought. We were told to come in and get checked even if we weren't sure. After that phone call the contractions started coming less than 5 minutes apart and were very painful so we threw whatever we could in the car, called our neighbor Alicia over and headed to the hospital. During the car ride the contractions started to come about two minutes apart and I was pretty beside myself (I even made Matthew run a red light a few blocks from the hospital!). Matthew tried to stop for the valet guy at the ER entrance but I yelled (yes, I really did yell) at him to pull up all the way because I had only moments between the contractions. As I got out of the car into a wheelchair I noticed our friend Cori at the entrance (she works for the ambulance company), and it was so nice to see a friendly face. They managed to get me up to the birth center and had me start to check in...I stood up for a contraction, felt sick, asked for a bucket and as we started walking down the hall I lost my dinner and my water broke all during another contraction (I know, really gross!). Judah's head dropped way down when my water broke and I told them that I had to push, now! The OB on duty literally shoved me into the wheelchair as about a dozen nurses jumped up and ran with me down to a room, got me on the bed, and I pushed him out in about 5 minutes (it would have been faster if they hadn't told me NOT to push). It's a good thing we ran the red light and skipped the valet guy, I guess!

Obviously we were pretty shocked by the whole process, which lasted less than 3 hours from first contraction to baby born. We didn't have a whole lot of time to think about it though, because, as we've already posted, Judah was really sick right away and Matthew went with him immediately to the NICU. Thankfully Auntie Amy was there to go back and forth between Matthew and I (I still had to go through the admission process). Auntie Kayla was at home with big brother Nehemiah so we were able to completely focus on Judah.

Thank you again for all of the prayers. We have so much to be thankful for tonight, including my parents and sister Kendra's safe arrival from their trek across country from MN.

I will be discharged tomorrow sometime and we'll be going back and forth between home and the hospital a lot in the coming days, but we'll try to update as often as we can!

Wednesday, December 23, 2009

Judah is here

Judah was born at 11:11 on the 22nd. He was 8 pounds and 11 ounce (still don't know the height) and very sick. The hole between the chambers of his heart that was going to let oxygenated blood mix was almost closed so he was not getting much oxygen. They did a procedure within the first hour or two that re-opened the hole.

Since then he has been much better. Kirsten and I have seen him in the NICU a few times and he no longer looks blue. Nice pink looking baby and otherwise normal except all the tubes hanging out of him. He's opened his eyes and looked at us. So everything is going good so far.

We will have the surgery to switch his veins on monday or tuesday. Its not 100% verified but they are pretty sure he has a slightly more complicated vein attachment to the heart. Also, there is a very slight chance he will have a really complicated vein attachtment but they seem to think that is rare. They will try to verify what we're dealing with in the next few days.

That about all we know at this point. Thanks for all your prayers and concern.

Saturday, December 19, 2009

Two Weeks to Go!


Thank you for taking the time to read about the journey our family is on. We will be using this space to update our family and friends in the coming days and weeks about the arrival and first weeks of baby brother's life. We learned after our twenty week ultrasound that he has Transposition of the Great Vessels, a congenital heart defect. He cannot survive without surgery that will need to happen within his first 4-7 days of life. As of today we have only two weeks to go before he is due to join us on the outside and the time couldn't have gone by any faster!

I should share with you now, in case you didn't already know, that we've decided to name him Judah William Van Horne. Judah means "praise, gratitude, thanks". These three words sum up our feelings about this entire situation. We are so thankful to God for how he has been preparing us since well before we found out, and has been continuing to prepare us to walk through this time with Him. We are beyond grateful to know ahead of time about Judah's condition because we can make plans for big brother Nehemiah (he'll be two in February) and learn as much as we can beforehand. His middle name, William, comes from three important men in our family. Matthew's grandfather's name is Rudolph "Rudy" William Berwald. My dad's dad was William Robert Larson, and my dad is Robert William Larson.

The day before we found out about Judah's heart defect I was praying, reading, and journaling and was really struck by my need to be dependent on God in all areas of my life. In fact, I was longing to give up control that I had been reserving for myself, as if I knew better than God how to make it through life! I realized that all I was able to do was "make it", but I wanted to thrive! I was tired of being tired, and tired of overanalyzing, tired of wondering what people thought of me as a mom, as a Christian, as a wife, as anything. I finished my journal with an underlined phrase, "Lord, make me more dependent on you!"

The very next day we learned about Judah's transposition, a 1 in 20,000 birth defect. How good is God, that he would be preparing my heart so carefully to accept this news!? It is not like me to accept something like this without fear and anxiety. I would have expected to be scared, wonder why my son, and just generally freak out! Rather, he gave me the grace to fall into Him with this knowledge and he gave us overwhelming peace and comfort, just by knowing that He is in control and knowing that His plans are good. We don't know everything that is going to happen, and we know that this whole process is going to be really really hard. We aren't shy about asking for prayer, we seek it desperately. So far, there have only been moments of fear and doubt. God has quickly covered them all with assurance from his Word, and from the encouragement and support of our friends and family.

If you would pray, here are some requests...
  • That we would not give in to any fear or doubt
  • That labor and delivery will go smoothly and that Judah will be doing well enough to spend a little time with us before he has to go to the NICU and have his first procedure done. (Especially that Nehemiah will have a chance to meet him because he may not be able to see him for a long time otherwise)
  • That Nehemiah will feel secure and comfortable with our wonderful family members while we are away at the hospital.
  • Praise for our doctors and nurses, everyone we have met so far has made us feel like family and committed so much of their thoughts and energy to helping Judah survive and thrive!
  • That my family (Bob, Joslyn, Kayla, and Kendra) would travel here safely from Minnesota.
"We wait in hope for the Lord; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you." Psalm 33:20-22

Thanks again for reading and praying. We'll try to update as often as we can.