Monday, June 27, 2011

Geting Big!

Hello Isaiah fans! I thought I'd share some new pictures with you. Isaiah is still doing well.




Enjoying the Summer with a friend!


Thanks for stopping by. Please continue the prayers for this little guy and his family.

~Terri




Tuesday, May 24, 2011

Mr. Man

I just had to share this awesome photo of Little Isaiah with you all.


Angel says he's still doing great. He has been throwing up after some feedings which is pretty common for CDH kiddos. This is due to reflux.  Still overall he is a CHAMP!

~Terri

Monday, May 16, 2011

Lookin' SO Good!

Hello Isaiah fans. I think you will just LOVE this new picture Angel sent me. Isaiah is looking ADORABLE these days! It put a smile on my face this afternoon!


He is now 9 pounds!!!! So wonderful!

~Terri

Sunday, May 15, 2011

Check-up

Hello everyone. Isaiah had a follow-up visit with his surgeon on Thursday. He was very pleased to see that Isaiah was doing so well and had even gained weight. Looks like Angel is doing all the right things.

Continue to keep them in your prayers. Sorry for such a short update. But I am thanking God with how great Isaiah has done with cdh. So many other children really struggle and he's fought this birth defect with both fists raised! :)

~Terri

Monday, May 9, 2011

Lovin' Life!

Hello I just wanted to hop on and add a few pictures of Mr. Man Isaiah.


And this one is of Him and one of Angel's dearest friends.


Thanks for checking in! Please continue to pray for Isaiah.

~Terri

Saturday, May 7, 2011

Chillin'

Hello! Mr. Isaiah is still rockin' it out at home! I am thrilled to show you all the pictures Angel sent me today.


AND...



I hope everyone has a GREAT Mother's Day tomorrow!

~Terri

Thursday, May 5, 2011

Check up

Hello everyone. I just wanted to give you a quick update. Angel took Isaiah to the local peds office for a weight check and well check. Doctor said his lungs sound good and he thought he looked great over-all! Also he is gaining weight. He is now 8 pounds 5 ounces!

Thank again for your thoughts and prayers. Angel appreciates them so much!

Tuesday, May 3, 2011

Adjusting

Hello all. Angel is trying to adjust to Isaiah being home. It has been awhile since she has had a newborn. She says he is not wanting to burp and has spit up three times. This is very normal for cdh babies and their reflux.

He is sleeping well AND that is huge.

All is great... please continue to keep them in your prayers.

~Terri

Home at Last.

Hello everyone. Isaiah is loving being home.


Evan, TJ and Isaiah...finally all three together!

Keep the prayers coming. This is no easy task to care for a cdh child at home. The worrying never seems to stop. Thanks for dropping by!

~Terri

Monday, May 2, 2011

On his way Home!

Hello Isaiah fans! Today is a GREAT for day Isaiah, his Mother and his siblings. He is going HOME! I am so happy for them . I really, really wanted to be there but the NICU said Ava was not allowed in so we didn't make the trip.

Angel is extremely excited. He is doing all of his feedings by bottle which is almost unheard of leaving the nicu for cdh babies. He's only on one medicine (Prilosec) and that is for relux. He is a SUPER STAR!




I'm getting all his pictures from Angel by cell phone. As soon as she sends more I will add them.

Thanks for all your prayers. God is SO good!

~Terri

Saturday, April 30, 2011

Lookin' Good!

Well hello everyone! Isaiah is rising as a Star. He is doing SUPER well!

Here is a text I got from Angel this morning,

Wanting to let ya know he got me last night...I've been officially broken in by him...lol...he peed on me hahaha...lil guy is doing good we are working on feeds to get him to gain the weight. They're looking at Monday for discharge!!! WOO HOO!!! He's taking almost 4ounces a feeding but they want him to gain about an ounce a day so that's what we are working on. I've got the car seat here and ready...lol...I bet you can't tell I'm ready huh??? So is evan and TJ...They're sick of mom leaving. Not much longer for that though! :-)


Thanks for checking in! AND keep the prayers coming for this family.

~Terri

Wednesday, April 27, 2011

Circumcision

Isaiah is just doing Fabulous! He did his first "normal" baby boy thing today. He got circumcised. Poor little man. However he is eating great and didn't seem too bothered by it. So happy he is doing so well. Angel says she thinks they will discharge him in a few days.

I just can't believe how well Isaiah is doing. Yes he did have a few setbacks but I've never heard of a cdh baby doing THIS well. He is such a strong little guy.

Keep praying for him and his family. I'm sure his brothers can't wait to meet him.

~Terri

Tuesday, April 26, 2011

Little Piggie!

Isaiah is back to his soraing self. He is tube free! They removed the NG tube and he is now doing very well with the bottle. I believe he is up to 70ml's or more every three hours. He seems like he can't get enough. Angel says he can't get enough.

See his gorgeous smile...


What a little Ham! Here he is tube free! Such a sweet heart.


Thanks for your prayers.

~Terri

Sunday, April 24, 2011

Resting on Easter.

Hello All. Happy Easter! Isaiah had a great day. Angel tells me he is off all medicines and the only tube he has left is the NG (feeding) tube. His feeds are back up to 70 ml's every three hours. (THAT in itself is HUGE!) He has not yet taken a bottle. Angel plans on feeding him with the bottle for the first time tomorrow. She is very excited.

He now weighs 7 pounds five ounces. He sounds like he is healing well and getting some great rest. He is doing ALL the right things.

Thanks for the prayers and hope everyone had a Blessed Easter day.

~Terri

Saturday, April 23, 2011

Bye, Bye Chest tube!

Hello Isaiah fans! Great news today... his chest tube was removed. I'm sure he feels MUCH more comfortable now. He is again weaning off the Morphine and doing much better.

The xrays are improving and he is only on nasal cannula with very little oxygen. He is being fed again but very small amounts and being worked up very slowly like before.

Here is a picture of Isaiah and I about a week ago. (Angel took it when I was not looking.) I've grown so close to this little guy. I think of him often and pray many many times a day. He is a champ!



SO HAPPY he is OFF the ventilator and that the chest tube is GONE!

So please pray he stays restful and heals well. Thanks for dropping by!

~Terri

Friday, April 22, 2011

Extubated!

Isaiah is extubated. His lungs look a bit better. They are leaving his chest tube in until tomorrow. They also fed him a mouthful of breast milk today! This is the first time he was given anything orally.

We LOVE progress!



Isaiah and Mommy...



Continue to pray for little Isaiah.

~Terri

Thursday, April 21, 2011

Hazey right lung

Hello all. Isaiah is still intubated. His lung x rays are not looking so well. His right lung is a bit hazey, which means there is a build up of fluid in his lungs. Thus the chest tube remains and he stays sedated. They don't like them awake with a chest tube as every slight move hurts badly. I believe he is telling everyone he needs rest.

Pray for healing and rest for this little man.

~Terri

Wednesday, April 20, 2011

Sedated and resting well.

Hello everyone. I wanted to do a quick update as Angel just sent me a few texts. The chest tube was placed this morning because of the leak. They had to sedate him to put in the tube. They were contemplating a PICC line but that never happened... thank goodness. He still has two very good IV's left.

He has been resting well all day and has not had any recurring issues. They have lowered his oxygen to room air but he is still on the  ventilator at very minimal settings.

The chest tube has not drained much but they still need it in. If he does well they will remove it soon I'm sure. He is peeing like a champ so no catheter was needed. Poor fella just needs some good ole' rest and relaxation.

Here is the picture Angel just text me. You can see the chest tube on his  left side. (These are very painful.)


Continue to pray for this family. Angels five year old son was very upset his Mother had to leave so abruptly yesterday. He is not old enough to get this all. This is extremely hard on everyone. Angel again thanks you for your love, support and prayers.

~Terri

Leak in his Lung.

Angel just text me at 6:30 this am, they are putting a chest tube in because his lung is leaking. I'll try to get more details soon.

He needs prayers.

~Terri

Tuesday, April 19, 2011

Out of Surgery.

Angel got a call today at 10:45 am from Isaiah's surgeon, Dr. Shaaban. He told her that a quarter inch gap between his inside stitches allowed his intestines to come back up through his diaphragm, up into his chest. They used the same incisions from last surgery, along with one more incision. He added two extra stitches to fix the problem. (The total number of stitches was seven.) Angel was quite beside herself with the news.

I just got up here at about 6pm as he was getting adjusted in his room. Isaiah did well in surgery. It took three hours total. The surgeon talked to us and told us that some of the stitches had come loose and some intestines were back up causing respitory distress.

This is right after surgery. He was looking all around and loving his Mother's voice.




See these precious feet. No new picc line but these two pesky IV's in his foot.


Mommy lovin on Isaiah. You can feel the love!





This precious hand...












Keep the prayers coming... I feel MUCH better seeing him with my own eyes. His stats are great and his vent settlings are very low. The plan is to extubate tomorrow if HE wants this. :) I say that cause CDH babies have a mind ALL their own! He is fighting the sedation as I type. He keeps looking at his Mommy.

~Terri

Set back for Isaiah.

Isaiah is being rushed to surgery. Some of his inside stitches came undone and some intestines have moved back up in his chest. Angel is on her way to the hospital now.

They both need prayer. I'll update when I have more information.

~Terri

Monday, April 18, 2011

Pictures!

Isaiah... LOOK at those beatiful eyes!



Mommy holding Isaiah for the first time!


Angel just said he is now up to 60ml's every 4 hours. Also she is going to be able to bottle feed him on Wednesday! They are also weaning him off the high flow. He's on one liter! So big, big progress!

Thought you'd like to see this AWESOME little man! Continue your prayers...

~Terri

Sunday, April 17, 2011

Super Boy!

Hello Isaiah fans. I'm sorry I didn't update yesterday. There was not much new information. He is doing very well. He is off all medicines. They removed his PICC line. He is still on a high flow cannula. I'm not sure how much oxygen he is on probably very little.

His feedings are improving well. He is up to 50 ml's every 3-4 hours through his NG tube. They are a little concerned about his fast breathing so they have not started bottle feeding him. Angel said they had told her they would try tomorrow or the day after. Iowa City is great at the "wait and see" approach. Which I am never to fond of. :)

Angel was very excited to change a poopy diaper and give him his very first bath on Saturday! He's doing so well they are going to move him down to bay 4 or 5 of the NICU. Yay!

The doctors are estimating him to have another two week stay. Angel thinks it may be sooner. We shall all pray and see! Thanks for checking on Isaiah. I'm hoping to get a recent picture of him this weekend. I was not able to get up there and Angels camera is not cooperating with her.

Thanks again for your prayers!

~Terri

Friday, April 15, 2011

Off Cpap

Isaiah is doing well. I talked to Angel and she did get to hold him tonight. She said she loved looking into his eyes but he quickly fell asleep in her arms.

He is now being fed 40 ml's of milk every 3-4 hours. This is HUGE progress.

She wants to transfer him closer now that he is doing better. I'm not sure if that is even possible. I know that doctors like to see their patients out until their discharge. It is so hard when your family lives so far away. You want to be in both places but it is not humanly possible.

She says he has the oxygen prongs in his nose so I assume he needs a little bit of oxygen. Angel is concerned he is going through Morphine withdrawls. She's been back with her boys this week so this was the first she was able to get there. She doesn't like bay 2. I kinda had a feeling because once your baby is off the ventilator then they get less one on one attention therefore it is really important someone be there almost all the time.

Please continue to pray.

~Terri

 

Thursday, April 14, 2011

C-Pap

Isaiah had to be placed on CPap after extubation. He still needed a bit of support.

Positive airway pressure (PAP) is a method of respiratory ventilation used primarily in the treatment of sleep apnea, for which it was first developed. PAP ventilation is also commonly used for those who are critically ill in hospital with respiratory failure, and in newborn infants (neonates). In these patients, PAP ventilation can prevent the need for tracheal intubation, or allow earlier extubation. Sometimes patients with neuromuscular diseases use this variety of ventilation as well. CPAP is an acronym for "continuous positive airway pressure".

This is a tiny set back but nothing huge.

He has moved to bay 2 in the nicu so that is great news. They bumbed him there last night. They are still feeding him through the NG tube AND no poopie yet. Hoping to get some updated news soon. He is on very little meds for pain. He is tolerating this all still very well. Tomorrow will be one week post surgery.

Thanks for your continued support and prayers!

~Terri

Wednesday, April 13, 2011

Extubated!

Hello everyone. Yes you read right.... Isaiah was extubated! The breathing tube is gone. He is doing really well. Isaiah is also up to 7 pounds now!
They've also increased his feeds to 20 ml every 3 hours. So far they see no signs of GERD or reflux. (Which is extremely common in cdh babies.) He is having some good wet diapers, not sure about poopy.  Angel was going to find out more tonight. She is back at home with her other two boys. She is very excited about seeing Isaiah and holding him this weekend.

He is still in NICU pod one but if the hospital gets a new nicu baby he will be on his way to pod two. This is such good news!

Thanks for your continued prayers!

~Terri

Tuesday, April 12, 2011

More from Angel...

In Angel's words...

Isaiah is doing absolutely AWESOME!!! They're planning on
extubating him today and taking one of the picc lines out of his leg. They're
weaning him off pain medicines. He is getting feeds every four hours. His
cathiter is coming out...


I can't wait to go back and see him this weekend. It seems
sooo far away and knowing my lil champ is gonna look so much
different-hopefully i can finally hold him:-)


Please pray! Thanks everyone!

Getting Stronger

So a lot of good has happened to Isaiah. He is at 24 percent oxygen, almost at room air! They are weaning his Fentinol and Morphine. (pain medicines) He is only getting his Adivan (anxiety medicine) as needed. They are done using the umbilicord arterial line. (They were using this line for blood gasses.)

They are waiting for more poop as he hasn't had anymore since before surgery. (This is very typical of cdh babies.) He is farting though so good sign there!

The doctors are talking about possibly moving him over to NICU pod two SOON. This is a step down from pod one. Meaning he is no longer one of sickes babies in the NICU. Angel may get to hold him soon!

He was fed last night a tablespoon of donor breastmilk. By fed I mean was given a very small amount of milk through a tube in his nose that goes to his stomach. (NG tube) Hopefully when he gets stronger he will be able to take a bottle like a normal baby.

The next step besides weaning meds is getting him extubated. (Removal of the breathing tube.) So like I said MUCH is happening for the good in Isaiah's small life.

Please continue to pray for Isaiah and Angel.

~Terri

Monday, April 11, 2011

Starting Feeds!

Isaiah is a Rock Star! They are weaning pain medicines today and they are FEEDING him too! This is a huge. He's only on thirty percent oxygen. (Room air is 21.)

The new xrays show that his right lung is inflating and the left lung is looking much better. ALL fabulous news.

They have been slowly letting him look around without his mask. Angel loves seeing his eyes. Soon that tube will be coming out. I just know it!

Angel thanks you for your prayers and your thoughts!

~Terri

Sunday, April 10, 2011

Isaiah says!

So he is soaring today and is waking up and hating the breathing tube. They took off his mask for a bit and his eyes had a story to tell his Mommy. He wants to be done with the tube. He is trying to pull it out. This is great news. It means he know it is not right and his body is healing. His ventilaot setting are very low right now. Meaning he is breathing over the vent and it is not giving him much support. However he is still on the Nitric Oxide. (It helps stimulate the lungs.) They are weaning him off slowly. This is the last medicine to go before the tube comes out. I'm guessing they will extubate him in the next few days. (That is 'my' guess of course.)

He still needs many prayers as the vent is one step closer to getting better. The feeding begins the next step of this process. AND that is a whole story all on it's own!

~Terri

Mom sees his eyes!

Isaiah is continuing to do great. His blood gases are so good they are lowing his oxygen. He is now down to 30 percent. SUCH great progress. He is telling them HE is in control!

Angel also got to see his eye as he is trying to wake up. His little body is getting used to the medicines and he is healing. But they did have to put his blinders back on as it makes his become too awake and his body still needs to be still.

Surgery told her that he had a diaphragm it just was not sealed to the wall. If you were going to have cdh this is the perfect way to have it. I'm so happy he is sailing through this.

Please continue to send them both prayers.

~Terri

Saturday, April 9, 2011

Good news!


Hello everyone! Sorry that I didn't post more about the surgery last night. I got home really late and my card reader was acting up on me. I couldn't download the pictures. Finally here is Isaiah after surgery. It took about 5 hours and 20 minutes from the time he left his nicu room until we saw him again in his room. This was them taking the very first xray since surgery. They were impressed at the amount of left lung tissue they saw.



His nurse took off his eye covers so we could see his face. Such a precious little guy!






We didn't find out much after surgery, as his surgeon or no one from surgery came to talk to Angel. I was a little uset about that. I understand his surgury was later in the day but still a parent wants to know the details. Anyway the nurses said he did great during surgery. They did do it laporscopic. He has three tiny incisions. Two you can see in the pictures and then one under his left arm. This way of doing the cdh repair is so much easier to heal from and less complications. The did not have to use a patch to fix his diaphragm. He had enough diaphragm to just adhere it to the sides and sew it together. I will find out exactly what was in his chest when I hear back from Angel after surgeon speaks with her.

His ventilator setting were very low. He almost needed no support and was only using 40 percent oxygen. He was holding strong with his stats. They were keeping him very sedated with medicines such as Morphine and Adivan. (Pain and anxiety/relaxant) They had already removed his chest drain before we got to the room. That was great to as a chest tube is very painful and obviously was no longer needed.

I was just amazed at how well he was doing. I have not heard from Angel yet this morning so I'm praying he had a good night. The doctors and nurses are just floored by how well he is doing.




Here is the incision marks. Two that you can see.



I just love this little guy!





I'm waiting for an update and I'll give it on here as soon as I hear. I can't say enough good things about this little guy. He is really sailing through. Keep the prayers coming!

~Terri

Friday, April 8, 2011

Out of Surgery.

He is out of surgery and doing well. It was done laposcopically. More update soon. All I can say is I am impressed with this warrior!

Isaiah is in Surgery.

Isaiah is doing well. I came here at about noon. Angel was in his room talking and comforting him. His stats are great. He was talking about 40 breaths per minute. And his heart rate was in the 110-130's. His oxygen levels were between 95-99. He is rockin' this cdh. Such a super strong little man.


Isaiah went to surgery at 3pm. There was an emergency case that came in that became priority. I was pleased to see how well he looks. His hypertension has much improved. He was switched this morning to the conventional ventilator.














This is a sign the nicu made for Isaiah.







Here they are getting him ready for transport to 4th floor Operating Room.







Mommy kissing him before surgery.







After about 20 minutes he was off.







So now we wait. The surgeon is planning on doing the repair laposcopically. Which means they will make a few small incisions and move things down to their proper places and repair the hole. This is good news. The only reason it may change is if problems arise. If he would need a patch they will probably have to make a large abdominal incision. Surgery estimated to last about four hours.

Please pray for Angel she is very nervous and worried. Baby Isaiah has lots of fighting left to do. The caution that he may get worse before getting better. Pray and Pray for Isaiah. He is such a strong little man. I'll update as soon as he gets back from surgery.

~Terri