My Sweet Boys

Schedules....Ugh!

Chase continues to do well. He is up to 7 lbs 9 oz. I'm hoping that he will be 8 1/2 pounds by his next visit with the cardiologist on Nov. 4. I think they would be VERY pleased with that. We are settling into our feeding schedule.....I feel like our lives revolve around 12, 3, 6, 9....those are the times that Chase eats. I have to say, I'm not a fan of feeding schedules. It is so restricting to life!!! With Eli, I breastfed on demand and it was SOOOOO much easier than "formula" and feeding schedules. I guess formula and/or feeding schedules work for some moms, but not this one! ; ) I'm looking forward to the day that I get to nurse Chase.

Eli is doing well too. I am so proud of him. He just loves his little brother! Every morning, he wakes up and hugs and kisses Baby Chase before he does anything else. It is so sweet!

Growing!

Chase weighed 7 pounds, 5 1/2 ounces and 20 1/2 inches long at the pediatrician's office today! Still off the charts (-5% on both) but, he is growing, growing! The doctor said that good growth is a great sign....just an indicator that he is thriving and "accepting" the changes made to his heart. Very good news!! : )

Dr. Henley

Eli is enjoying all the medical supplies in our home.

You Know You're Tired When.....

....you fall asleep on Daddy's shoulders.

Fun in the Swing

Sweet Baby Chase enjoys time in his swing. He even follows the fish mobile with his eyes.

And of course.....Elijah has to have a turn.

Great Dr Visit

We took Chase to his 6 week post op visit today. The doctors said that they were VERY pleased with his progress and that all his labs, x-rays, etc. look wonderful! Praise God!! He weighed 7 lbs 2 oz. They want him to gain an average of 15-25 grams/day and his is averaging 35 grams/day! WooHoo Baby Chase! We are trying several different things to help him be more comfortable during his feeds. So far, they are working. We pray that they continue to work! He will stay on Portagen for another 2 weeks and then we will probably switch to breast milk. They dropped his oxygen from .25 to .12. He will likely be off the oxygen in 2 weeks.

We are making progress...slow, but it is still progress. We are very happy....very blessed! : )

Another ER Visit

Yes another....Chase has been home 5 days and this is visit number 2. Hunter is taking Chase to Children's Legacy as I type. We learned a lot during the last trip....Hunter and I don't need to rush out and leave....one of us can handle the ER visit while the other handles things at home (i.e. Eli) : )

Chase has seemed uncomfortable during his feedings for the past couple of days. I'm convinced it's the yucky Portagen (some kind of super charged formula for heart patients) that he is on!!! I realize that I am a bit of a breastfeeding nut to most of the world, but I really think that it is time for breast milk! Anyway, we called the cardiology office and spoke with a nurse practitioner (sp???) and she told us to just watch him and make an appointment for tomorrow morning. About 30 minutes later, Chase's cardiologist called and said that we should take him to Legacy to get checked out. She didn't want to take any chances given all that he has been through. I can appreciate that. She was going to call the ER at Legacy and let them know we were coming. Hopefully, all will go well and Hunter and Chase will be home soon. I'm praying that they don't have to admit him.

I'll post again soon....please pray that all goes well. : )

First ER Visit

Last night was our first trip to the ER with Chase.....less than 48 hours after discharge. I cried the whole way there b/c I did not want to be admitted! Children's is a wonderful place, but I'll be very happy if we are not admitted for a VERY LONG time! Anyway, after Chase's 6pm feed (which happened around 6:30), he started breathing much heavier than normal, retracting way more than normal and then he threw up. Because of Chase's malrotation of the intestines, throwing up means a trip to the ER. Thankfully, his intestines are not obstructed and we were discharged......at 4 am!! Yes.....8 1/2 hours in the ER! Uggghhhhh! : )

We are very thankful! : )

Chase is doing very well today.

5 Weeks

Chase had his first visit with the peditrician on Friday. He weighs 6 pounds, 14 ounces and is 20 inches. He's grown a pound and a half since birth! Wow, Baby Chase! Everyone at the pedi's office calls Chase the "miracle baby". : )

Chase was 5 weeks old on Thursday. Here are a few pictures from his first day at home. : )

Brothers!

Going Home Pics

Home!

We finally made it home at about 10:15 last night! What a happy day!!

We had a good first night. I woke up at 3 and 6 to feed him (via feeding tube). It only takes about 25 minutes to feed him. Chase did not wake up all night. Eli had a hard time going to sleep even though it was after 11pm....he was just so excited. He kept standing up in the bed to get a peek at Chase. It was very sweet.

I have some pictures....I'll post as soon as I find my camera. : )

One other note, we did find out that Chase has malrotation of his intestines. Basically, b/c of the heterotaxy, his bowel is all jumbled up and not tacked down in his abdomen. His bowel is not obstructed at this time, but could become obstructed since it is not tacked down. He will have surgery at 6 months to tack down his intestines. Until then, if Chase throws up, we have to take him to the ER to check for obstruction. Small potatoes in our minds, but could be hard it he spits up a lot! : ) Please pray that we don't have a spitter! : )

Can't wait to see how today goes with two sweet boys! : )

Almost Home

Hunter and I have been at the hospital all day working on discharge....CPR class, dropping NG tubes (feeding tubes), getting flu shots, speaking with doctors, listening to instructions regarding oral feeds, gathering supplies, picking up prescriptions, making follow-up appointment, getting Chase's RSV shot, learning about oxygen. What a day! I came home to do a couple of things and pick up Eli. We are getting ready to head to BabysRUs and get a car seat and then we are going to get Chase and bring him home.

Needless to say, it's been a busy day. As soon as I have pics of our homecoming, I'll post.

A couple of quick notes....

This morning I told Eli that Chase was coming home. He looked at me, placed his hand on my shoulder and said....Are you so excited? My heart melted. What a sweet boy! He could see the excitement in my eyes.

At the CPR class, I had to complete a registration form. When it asked for the patient's name, I wrote Elijah Henley. I noticed my mistake, scratched it out and wrote Chase Henley. I just laughed and thought that they are going to think I'm crazy....I don't even know my own child's name!! : )

Coming Home

Hunter just called from the hospital to let me know that Chase will be able to come home tomorrow or Thursday. We are so excited!!! Oh my....I have to buy a car seat...put the co-sleeper together....get a sheet for the co-sleeper...wash Chase's clothes. I totally waited until the last minute!!! I thought I would have time. I've got a busy day tomorrow.....and I will be rejoicing while doing every chore!! Praise God...What an answer to prayer!!!! What a miracle!

I'll keep you posted!

Growing!

Chase is growing, growing! He is over 6 1/2 pounds now. The drs said they wanted to be back to is birth weight before going home and Chase has exceeded that! Yeah, Baby Chase!!!

Chase is doing well....no virus after all....long story. He had another chest x-ray this morning and it was clear. Chase also took 5ml of portagen from a bottle today. Obviously, it's not much, but it's a start. We are going to continue oral feeding tomorrow.

I hope we start discussing going home soon. If it has not been mentioned by Wednesday, I'm going to ask. I just want to know what we are working towards if we are not going home soon.

Thanks again for all the prayers. Please keep them coming! ; )

Holding Little Brother

Chase is doing well. We are still working on feeds and oxygen. We are making progress. We are hoping and praying that we will get to come home by the end of the week.

Chase may have a little virus. He has a runny nose and his white blood cell count is up, but they tested him for RSV, flu, cold, etc. and everything came back negative. Please pray that he recovers quickly and that we are home soon!!

Sleeping Peacefully

Sweet Baby Chase is happy sleeping alone. I'm thankful for this now, but I have to admit that it makes me sad to see him sleeping alone. I am a big believer in the benefits of co-sleeping so seeing any baby alone in a crib just makes me sad....especially my own baby!! Hopefully it won't be long until this sweet baby is tucked in beside me every night....sharing sleep, nursing on demand, and feeling safe and secure in our bed.

Chase continues to make progress although it seems painfully slow right now. We are working on feedings and weaning off the oxygen. We dropped the continuous feeding and now he is getting 45ml over 1.5 hours with a 1.5 hour break in between feedings. We are at the hospital almost around the clock now which is VERY hard on everyone! Hunter and I take turns spending the night at the hospital. This way, Eli is always with one of us at night. Eli is spending quite a bit of time with me at the hospital and is doing so well! I'm so proud of him!!

I spoke to Chase's cardiologist this evening and she said that Chase is doing fantastic. She said that given the amount of surgery that Chase had, she is just completely blown away by how well he is doing! God has really had his hand on Chase throughout his short life and for that we are SO VERY THANKFUL!!!

We have not heard anyone mention going home yet, but we are hoping it will be the end of next week. Of course we would love to come home sooner, but I think the end of next week is more realistic.

I could blog forever, but it is my night at home and I'm looking forward to a nice, peaceful sleep! : ) Good night to all! : )

Meeting Little Brother

Admiring from a distance
A closer look while Aunt Lisa is holding Chase

Out of ICU

After 24 days, Chase is out of the ICU. He moved to the cardiology floor this morning. We are so thankful that he is making such good progress. We feel like we have witnessed nothing short of small miracles on this journey. When I was pregnant, we prayed for a miracle. Although Chase was born with all his issues, we feel like we've experienced several small miracles rather than one HUGE miracle! : ) The road ahead is still VERY long, but we praise God for all he has done and is continuing to do in our lives and in Chase's sweet life. We are so thankful for the past 24 days and pray for many more days, weeks, months and years with our sweet Baby Chase.

Eli met his little brother today. What a sweet meeting! Eli was so sweet to him. He asked several questions, but did very well. I am so proud of both of my boys! : ) I have pictures of their meeting and will post them soon.

Now that Chase is in is regular room, we will be spending MUCH more time at the hospital. We will be spending nights with Chase and will likely be there around the clock. We will be learning how to care for him (feeding tubes, oxygen, meds, etc.) and taking CPR classes. Please pray for our family during this time. This will be challenging.

A Stressful Day....that turned out OK

Early this morning at 3am, we received a call from the hospital. Chase's heart rate was up to 180 - 190 (it's usually around 130). They said they needed to put in a central line to administer some medications to control his heart rate. Additionally, his potassium was elevated and his renal labs were high. Of course this set off all kinds of worrying!! On top of this, Eli had a 101 - 104 fever and was absolutely refusing medicine. I decided to take Eli to the dr to have him checked before the weekend. After a morning of not eating, laying on the couch and a fever, we got to the dr and Eli had no fever and was acting totally fine. I was glad, but a little embarrassed that I rushed him to the dr. When Eli and I got in our car to leave the dr, the car battery was dead! Yes....another thing to add stress to my day! Thankfully we have the Allstate roadside assistance and they came and started my car (although they took over an hour to get there).

After all this, I finally made it to the hospital to check on Chase at about 3:30pm. He seemed to be doing well. I spoke to the nurse and asked about the central line and she said that he did not have one. They were just giving some meds through IV. They took more labs and his potassium was normal and his renal labs were significantly lower than before. We were very concerned about the kidneys, but once we spoke to Chase's surgeon we discovered that there is not a reason to be concerned. They have been giving Chase diuretics and apparently they "overshot" on one of them. They backed off and everything is normal. We are so relieved!! We heard so many different stories about what could be going on from different people....apparently the surgeon is the one with the answers!!!

Tonight when I was holding Chase, he turned his head to me and opened his mouth like he wanted to nurse. : ) That made me so happy! I wish I could try to nurse him, but I know that day will come. He is still on portagen rather than breast milk, but hopefully soon he will be back on breast milk.

OH.....we found out today that Chase does not have a spleen. We really were not expecting one so this is not huge news. They are starting him on a general antibiotic that he will take orally every day for many years to come.

That's all for now. I pray we have a good, healthy, no car issue weekend! Love to all!

Baby Jesus or Baby Santa Claus???

Today was just "one of those days" in the life of a mother with a 3 week old baby in the hospital that I haven't been able to care for, nurse, or have living in our home. So, rather than writing a boring blog entry about all my frustration throughout the day (and there were too many to count), I thought I'd share a funny story about Eli. It makes me laugh every time I think about it.

Several weeks ago Eli and I were walking through Hobby Lobby and we saw lots of Christmas decorations (WAY too early). There was a HUGE Santa and I said, "Eli, who is that?" He yelled, "Jesus!". Of course I explained that it was Santa and not Jesus. Fast forward to this past Saturday when we were walking through Dillard's. We saw a nativity scene and we stopped and explained to Eli that the baby was Baby Jesus. Later (like 5 minutes later) when we went back, I asked him who the baby was and he said baby Santa Claus! : )

Regarding Chase, he is doing well. We received lots of bad information today which frustrated me and I had a "mommy moment" when what they were doing to Chase didn't seem right to me, but in the end everything is fine and he is continuing to do well. There will be a room for him tomorrow on the cardiology floor and we will move tomorrow. (since they have been telling me this since Monday, I'll believe it when we are actually on the 8th floor!) ; )

Still Waiting....

We're still waiting for a room on the cardiology floor. Chase is doing well. He had an IV line inserted today....in his head. Ouch!!! All his lines were taken out and although he doesn't need a line, they like to have one in case they need one. Anyway, they tried twice in his foot and twice in his arm and couldn't get a line, so they found a nice vein in his head. He has a big plastic protector over it so it looks really bad, but it's not. Chase's surgeon just calls it his "thinking cap". : )

All is well at home today. Eli had a better day today. I pray that continues....or that we have more good days than not so good days!