Well today, 9/11/07, Ethan is officially one month old! He has had lots of "firsts" today. To start, Ethan's home nurse, Linda, came to visit. She will come back weekly for weight and pulse ox checks and we can call on her any time we have any questions in between. If Ethan had come home with the NG tube, she would also be available to assist with changing the tube and addressing any problems/questions we had about the feeding tube, but fortunately we don't have to deal with that!
Also, Ethan had his first bath today in his new little bathtub we received from one of the baby showers. Mom and I thought this would be a pleasant experience for him but he screamed and cried the whole time - I guess because he was naked and cold (two things he really doesn't like). Until his umbilical cord falls off, he can't be sitting in water so it was more of just a sponge bath (which he's had before and didn't fuss nearly as much).
Tomorrow, we'll be heading back over to UNC - but only for a visit with our friends Crystal and Ben and their HLHS baby girl, Shelby Glover. If you've been reading our blog regularly, you will remember that we met Shelby and Crystal a few weeks ago when Shelby came for her pre-surgery heart cath and they stayed at the RMH the night before the procedure. Crystal just got news today that Shelby's getting ready to have her 2nd heart surgery on Thursday and they hvae to be at UNC tomorrow for a pre-op appointment. We're going to visit them tomorrow night to support Crystal and Ben and to let Ethan and Shelby meet for the first time! Please be in prayer for their family. At 5 months old, Shelby is a very sweet, healthy looking little girl. We can only imagine how hard it is for them right now to see their daughter undergo the Glenn surgery and to wait for her to get through the surgery and go to recovery so they can see her again. Going through the first surgery (the Norwood) was hard enough on both our families, but the babies were so young that we didn't really have much of a relationship yet. Shelby is a real little person now, with a personality and character all her own. Before we know it, we'll be following in their footsteps as long as Ethan continues to do well.
Showing posts with label Shelby. Show all posts
Showing posts with label Shelby. Show all posts
Tuesday, September 11, 2007
Tuesday, August 28, 2007
Another day in PICU
Well another day has come and gone here in PICU. Ethan is still doing well, but there are still no beds available in CICC so we'll be here in PICU again tonight. We will do our best to get some new pictures of our sweet son on the blog soon. The nurse said he took all his feedings by bottle, no NG tube needed! This was a small answered prayer, but still an answered prayer none the less.
We did have a small setback again today. At 1pm he had a swallow study done (he was fed a bottle of barium and had an x-ray done at the same time to watch his swallowing pattern). I (Julie) got to feed him the bottle and Dan watched with the radiology tech and speech therapist (ST) as the liquid went down his throat. We learned that towards the end of his bottle feeding, he had one small silent aspiration episode (this means that when he swallowed, it went down his windpipe instead of his esophagus and he didn't cough it up). Therefore, the speech therapist ordered him to start having his feeds thickened. The two options are formula thickened with rice cereal or breastmilk thickened with a really expensive thickening gel that can only be purchased online. He will have to stay on this eating plan for the next couple of months, until just before his next surgery when they'll do another swallow study. The ST said the silent aspiration is common for newborns who've had surgery and had to be intubated and that it is something that he should grow out of, so that's encouraging! Please be praying that he grows out of it sooner rather than later.
Another praise is that our friend's baby, Shelby, had her heart cath today and Dr. Stewart said it went well so she's scheduled to return in 2 weeks for her 2nd stage of surgery - The Glenn. Be praying for this family as they prepare mentally and physically for this next surgery. Shelby just turned 5 months old last week and her parents can hardly believe the time has come so quickly. We really enjoyed the quality time we got to spend talking with Shelby's mom last night and today. It's so encouraging to see Shelby doing so well - just looking at her, you'd never know anything was wrong on the inside! This was just the little boost of encouragement we needed to keep hanging in there a little bit longer.
We did have a small setback again today. At 1pm he had a swallow study done (he was fed a bottle of barium and had an x-ray done at the same time to watch his swallowing pattern). I (Julie) got to feed him the bottle and Dan watched with the radiology tech and speech therapist (ST) as the liquid went down his throat. We learned that towards the end of his bottle feeding, he had one small silent aspiration episode (this means that when he swallowed, it went down his windpipe instead of his esophagus and he didn't cough it up). Therefore, the speech therapist ordered him to start having his feeds thickened. The two options are formula thickened with rice cereal or breastmilk thickened with a really expensive thickening gel that can only be purchased online. He will have to stay on this eating plan for the next couple of months, until just before his next surgery when they'll do another swallow study. The ST said the silent aspiration is common for newborns who've had surgery and had to be intubated and that it is something that he should grow out of, so that's encouraging! Please be praying that he grows out of it sooner rather than later.
Another praise is that our friend's baby, Shelby, had her heart cath today and Dr. Stewart said it went well so she's scheduled to return in 2 weeks for her 2nd stage of surgery - The Glenn. Be praying for this family as they prepare mentally and physically for this next surgery. Shelby just turned 5 months old last week and her parents can hardly believe the time has come so quickly. We really enjoyed the quality time we got to spend talking with Shelby's mom last night and today. It's so encouraging to see Shelby doing so well - just looking at her, you'd never know anything was wrong on the inside! This was just the little boost of encouragement we needed to keep hanging in there a little bit longer.
Monday, August 27, 2007
2 weeks past surgery!
Today is a beautiful, though slightly overcast, day here in Chapel Hill. It's not too hot today, only in the mid 80's for a change, instead of the upper 90's! It's hard to believe that just 2 weeks ago today, Ethan had his heart surgery! We're so encouraged that he's been doing so well! Ethan had another good night last night, taking all his bottles by mouth! He has done pretty well with his daytime bottles too. His A-line was removed over the weekend, so that's one less line he's attached to, which is good. The down side is that now that the A-line has been removed (it's like an IV, except it's used to draw blood instead of give fluids), if they need to do any more blood work, they have to stick him with another needle.
Unfortunately for Little Ethan, they had to draw some blood this afternoon, right before his 4pm feeding. He made a big fuss about it, then was so upset that he had a hard time calming down enough to take his whole bottle. In fact, he spit nearly all of it back up and we had to finish the rest (about a third) by NG tube. His nurse said she learned to not do that again!
We also had speech come back today at 10am. As I forgot to update on Friday afternoon, not much was accomplished at today or Friday's speech visit. At both visits, they let me feed him and they just stood and watched. They said he was doing very well and wasn't giving off any stress signals, which is a good sign. Just to make sure things are going well on the inside, they want to do a swallow study tomorrow. They said it's painless, it's basically just an x-ray of him while he takes a bottle. His therapist, Jen, said I'm welcome to feed him his bottle as usual and they'll just x-ray him while he eats. Please pray that all goes well with the study tomorrow and that we can learn exactly what's going on while he takes a bottle.
As for moving to CICC, Dr. Stewart gave us the go ahead today, but there are no rooms available on CICC today so we'll be here in PICU another day, which is fine with us since we get more one-on-one attention down here. Also, speaking of CICC, our friend's baby, Shelby will be arriving tonight. She and her mom will be spending the night at the Ronald McDonald House tonight then Shelby will go to CICC tomorrow morning for her heart cath. We look forward to meeting Shelby and her mom tonight at Ronald McDonald and maybe they will get to come see Ethan tonight. It's so great to have some new friends who are just a few months ahead of us in this process!
Unfortunately for Little Ethan, they had to draw some blood this afternoon, right before his 4pm feeding. He made a big fuss about it, then was so upset that he had a hard time calming down enough to take his whole bottle. In fact, he spit nearly all of it back up and we had to finish the rest (about a third) by NG tube. His nurse said she learned to not do that again!
We also had speech come back today at 10am. As I forgot to update on Friday afternoon, not much was accomplished at today or Friday's speech visit. At both visits, they let me feed him and they just stood and watched. They said he was doing very well and wasn't giving off any stress signals, which is a good sign. Just to make sure things are going well on the inside, they want to do a swallow study tomorrow. They said it's painless, it's basically just an x-ray of him while he takes a bottle. His therapist, Jen, said I'm welcome to feed him his bottle as usual and they'll just x-ray him while he eats. Please pray that all goes well with the study tomorrow and that we can learn exactly what's going on while he takes a bottle.
As for moving to CICC, Dr. Stewart gave us the go ahead today, but there are no rooms available on CICC today so we'll be here in PICU another day, which is fine with us since we get more one-on-one attention down here. Also, speaking of CICC, our friend's baby, Shelby will be arriving tonight. She and her mom will be spending the night at the Ronald McDonald House tonight then Shelby will go to CICC tomorrow morning for her heart cath. We look forward to meeting Shelby and her mom tonight at Ronald McDonald and maybe they will get to come see Ethan tonight. It's so great to have some new friends who are just a few months ahead of us in this process!
Thursday, August 23, 2007
12 days old
Today was another good day here at UNC. The speech therapist (Jen) was busy today so she never made it to our room. I (Julie) tried to follow some of the advice she gave me yesterday when she made her initial evaluation. She suggested I try to start the rooting reflex by gently rubbing the bottle nipple on Ethan's top lip until he opened his mouth and started curling his tongue. I also watched his respiration and tried to make sure that it was under 75 before trying to give him a bottle. At his noon and 4pm feedings, he was able to take 20 cc's of the bottle (his goal is 55 cc's) then we had to feed the rest by NG tube.
Ethan was also taken off one of his heart regulation medications, Amiodorone, today. This was the new heart medication that the doctors put him on when he came back to the PICU on Tuesday. This drug was helping to mask the foreign signal that was making his heart beat extra. This drug has a long half life (meaning it stays in his system several days) of nearly a week, so we know that Ethan will be in PICU at least until that medication is out of his system. He also has to get off his other heart medication, Milrinone, before he can leave PICU and be taken back to CICC.
The good news is that we're in great hands here in the PICU and we know God is still in control as the ultimate Physician. We also know that with being here at least another week, we'll get to meet our new found HLHS friend - Shelby and her parents. Shelby is just a little over 5 months old and will be coming to UNC on Tuesday, August 28th for her heart catheterization in preparation for the 2nd stage of surgery. We look forward to meeting this family, as they have been a great encouragement to us over the past month since we found each other's websites. Please be keeping Shelby and her parents in your prayers over the next week as they make the journey to UNC and prepare for the next step in the process.
Ethan was also taken off one of his heart regulation medications, Amiodorone, today. This was the new heart medication that the doctors put him on when he came back to the PICU on Tuesday. This drug was helping to mask the foreign signal that was making his heart beat extra. This drug has a long half life (meaning it stays in his system several days) of nearly a week, so we know that Ethan will be in PICU at least until that medication is out of his system. He also has to get off his other heart medication, Milrinone, before he can leave PICU and be taken back to CICC.
The good news is that we're in great hands here in the PICU and we know God is still in control as the ultimate Physician. We also know that with being here at least another week, we'll get to meet our new found HLHS friend - Shelby and her parents. Shelby is just a little over 5 months old and will be coming to UNC on Tuesday, August 28th for her heart catheterization in preparation for the 2nd stage of surgery. We look forward to meeting this family, as they have been a great encouragement to us over the past month since we found each other's websites. Please be keeping Shelby and her parents in your prayers over the next week as they make the journey to UNC and prepare for the next step in the process.
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