Friday, February 26, 2010

Getting answers is always nice

This morning, after rounds, we feel as if there is FINALLY a plan(s) underway. The current plan is to start his feeds again and work him up to full feeds. Every four hours they will give him a break from the CPAP and put him on high flow for an hour. The MRI did not show significant heart failure so they will try weening him off the CPAP for now. If he still needs the positive pressure support after 2 to 4 weeks, then they will discuss the next solution... repairing his heart or putting in a trach. I pray that Noah will decide to take the easy route, but I also am praying for God's will and that I will find comfort in God's plan.
Today he is comfortable and HAPPY! He will not stop smiling!! And he warms my heart! I was having a bad day yesterday but all I had to do to feel better was look at the huge smile on my sons face! He is such a ham!
Oh... and he has been extra drooly today so guess what I discovered?? His second tooth is coming in! His first two teeth have shown up in under a week! I will get more pictures when they both come in a little more! :)
Wednesday, February 24, 2010

Slowly making some progress

Noah is having a good day today. They are giving him hour breaks from the CPAP to try to get him back on to highflow. So far, he has done well. He still works a little more but it is getting better.
Cardiology has not made a final decision about Noah's heart yet, so, before the end of the week they will be sending him down for a MRI. After the MRI, they will all have a conference and make the decision. If they do decided to fix his heart before we are sent home, they will most likely repair the hole in his heart only. They would save the rest of the repair until he is bigger and stronger.
We have started continuous feedings today at 5 cc's an hour. He is having a little trouble with gagging and an occasional spit up, so please continue to pray for his tolerance.
Noah received his RSV shot yesterday... one in each thigh. :( Today, he has a slight fever and an elevated heart rate, so it is hard to tell if he is still "sick" from last week or if he is just crabby from the shots or if it is his heart or liver.
His liver is more distended today, so hopefully we can get him to tolerate his feedings and get him off the TPN and lipids.
During his first break from the CPAP, I got a glimpse of his precious face without anything on it and was able to snap a quick picture before the therapist put his nasal cannula on. His gave me the sweetest smile..... :)
Tuesday, February 23, 2010

Yesterday, Noah was put on CPAP and the differance was like night and day! His fever came down, heart rate came down, respiratory rate came down. He was overall more comfortable! Praise God! The cultures they sent to the lab have come back negative, so we are just waiting for them to officially take Noah out of isolation.
We have not received the results from his ultrasound yesterday morning... they were looking at his liver, galbladder, and pancrease. His BNP, which is what they measure for heart failure, was a little elevated but lower than the previous draw. His liver enzymes are elevated as well which could be caused by the TPN he has been on for a month.. they will be looking in to reformulating it.
The cardiology team and surgeons discussed, yesterday, whether or not to repair his heart. From what Aaron and I got from the discussion, they are still undecided but if they DO do something, they would just repair the hole first and let him get bigger for the full repair. So we are just waiting for a deffinate decission.
All three of us are getting more rest than we have been! We are still pretty exhausted but it is getting better... please continue to pray about that.
Thank you!!
Sunday, February 21, 2010

Another surgery could be just around the corner...

As some of you know, Noah has had a really rough day today. His fever is still high and has been vomiting and dry heaving all day. He is getting IV fluids and nutrition to keep him hydrated but he is just miserable. His color is not looking so good either... he looks dusky and "veiny" and his nail beds are blue. His liver is down about 3 cm. They will be checking his liver enzymes in the morning and also doing viral swabs, which means he will be in isolation for at least 24 hours. His ICU doctor is going to be having a discussion with Noah's cardiologist about repairing his heart soon. He is starting to show signs of heart failure so they will be doing a heart failure test in the morning as well. Our poor baby is just SO tuckered out, he has absolutely no reserve left. I wish I could just take it all away! His chest x-rays show his lungs look almost whited out with junk. When they suction him, most of the time they suction for a good half hour and get a LOT of thick mucus and he STILL has a lot more. They just can not get it all out.
Please pray for wisdom for the doctors and surgeonns and cardiologists tomorrow. Pray that God comforts Noah tonight so he will get the rest he needs to start feeling better. Pray for Aaron and I as this week will be a lot of descission making, I am sure! Thank you.

Oh... BTW.... Noah got his FIRST TOOTH yesterday!!! And tomorrow (2-22-10) is his 8 month birthday!!!!
Saturday, February 20, 2010

A few rough days

Noah was extubated on Wednesday. Today is day 3 of no breathing tube! He is still struggling at times to breathe, but so far they have been able to keep the breathing tube out. His lungs are very sick right now and he has a LOT of secretions that he is having difficulty coughing up. He is getting PEP (positive expiratory pressure) treatments every four hours to help him cough. So far they are working. They also deep suction him to trigger the coughing.
We are going to try feeding him today as he tolerates it.
Over night, he had a fever as high as 103.6. They have sent cultures to rule out infection. Right now his temperature is 102.7 and just received Motrin. We are also trying to cool down his body with wet wash cloths. Noah has also been very restless and will only sleep for 30 mins at a time... last night they gave him adavan and he slept for almost 3 hours! That is the most sleep he has gotten in over 3 weeks!
Noah will be receiving another blood transfusion today. His blood count is a little low and he is a little dry. His heart rate is a little on the higher side so the transfusion will help lower it.
Aaron and I are also very exhausted. We take shifts to comfort Noah so one of us can get some sleep. I am VERY appreciative of my husband taking the first shift every night! I don't know how I am going to stay awake when he goes back to work on Monday!
Please continue to pray for Noah and Aaron and I. Thank you!
Wednesday, February 17, 2010

Yay!!!!!!

I am almost speechless today, as I look at my peaceful, sleeping baby! :) Noah was extubated around noon today. He did GREAT! He only coughed as they pulled out the tube and immediately put his binky in his mouth. He did not even cry! God is so good, all the time! Around 7pm, I held him for the first time in almost 4 WEEKS! As SOON as I got him in my arms and sat in the rocker, he fell asleep and we had some MUCH needed snuggle time! :) Tomorrow they will try starting his feeds again and work him up to full feeds. Then the next step will be weening him off the high flow and O2. Then we should be close to being on our way out the door! Praise God for all he is doing with our family! I have not felt this peaceful in a while and it feels good! Thank you everyone for your love prayers and support while we are on this bumpy ride! Please continue to lift Noah up as he gets stronger! Thank you!!!
video
Monday, February 15, 2010

Good news...

Noah's broncoscopy went VERY well this morning! Dr Mitchell said his airways look better then what he was anticipating. He is very optimistic that we can extubate him by the end of the week. God is awesome! Let us remember to pray and thank God, even in our happiest of times!
His temperature is slowly making its way back down. The PICC line they thought was infected, was pulled 2 days ago and sent for testing... so far nothing has grown from it.
They may be restarting his feeds tomorrow... they'll start with a lower calorie count to make sure his belly can handle it. Then work his way back up to full feeds and a higher calorie.
Today marks 3 weeks since Noah's airway surgery and day 48 of this ICU stay. Almost as long as the last stay.
Please continue to pray for Noah's lungs as they are still inflamed and have a little fluid. For the infection to leave his body and his temperature to continue to come back down. Thank you!!
Sunday, February 14, 2010

Happy "Heart" day!!!!



Noah has been FULL of smiles ALL DAY today! As soon as I walked into his room this morning, his whole face lit up! He did not get bored of the smiles either!! I just could not get over the joy and happiness I saw on his face and in his eyes... he smiled even though he had a tube down his nose and a temperature as high as 104*! That baby sure can brighten someones day! :D
So... This fever has been present for at least 3 or 4 days. Today, it got as high as 104! We have been putting cool wet cloths on his body and at one point, wrapped ice bags. But, like I said, he smiled through it all! Tomorrow morning they will be taking him down for his broncoscopy to determine the next step of getting him off the ventilator. Whether it's redoing the pexy surgery or putting in a trach or CPAP for a while. They will also be holding a conference afterwards to get all his physicians on the same boat. They will most likely be discussing his future heart repair as well. Please keep us in prayer as tomorrow is going to be a big decision making day and I am a little bit afraid.
Saturday, February 13, 2010

More difficulties lie ahead.

I apologize for the delay in updating.. we have a lot going on.

For the past 3 or 4 days, Noah has had an elevated temperature. He has another infected line that they will be pulling today and putting in another one. His gut is starting to work better and that makes me so much happier!
Noah is still intubated... we are going on 3 weeks of having a breathing tube in. Monday they will be taking him down to the OR to do a broncoscopy. If they feel that they can adjust the pexy sutures, they will cut him open and make adjustments. If they feel that nothing can be done surgically, they will send him back on to his room and have a care conference and discuss they next step. They are trying to avoid putting in a trach but the likely hood of him not needing one is not looking so good. If they do put in a trach, the time that we would have to stay in the hospital before we could take him home is between 4 to 6 weeks. I am still praying for a miracle so he does not have to have ANYTHING done... but it is in God's hands, plans, and timing.
Please continue praying for us as the road ahead is getting more and more difficult. There are more and more times lately when I am frustrated with God and am asking a lot of "why" questions. Please pray for Noah, that the infection will leave his body and he will get stronger. Pray for safety for Monday, that whatever the doctors decide to do, that it will be successful with no complications. Thank you!
Wednesday, February 10, 2010

Still waiting for God's timing..

As some of you know, Noah had to be re-intubated last night after about 6 hours of extubation. I was very upset and angry. I wanted to give up my faith and prayer. My heart was very "cold" yesterday. But then I looked at my sweet boy and was reminded that God is still at work because Noah is still with us! The same can not be said for a 12 year old girl who is 2 rooms down from Noah. She has fought leukemia and Jesus is bringing her home this very moment. Aaron went and prayed with the family. They even invited him into her room to pray for her. My heart aches for their loss. This is a very sad place to be. It is hard to imagine that happiness exists beyond the lobby doors. So when you remember to say a prayer for Noah tonight, please say one for his neighbor and her family.
Noah has been agitated and restless all day today. His temperature went up and did not go down even with Tylenol, so we ended up putting cool wet wash cloths on his pulses. That seemed to work! His stomach and gut are starting to back up again. They have done everything to try to figure out what was causing the agitation. Finally about an hour ago, his doctor turned off the dex drip and it was almost an instant response! His heart rate settled down, he stopped crying and squirming, and fell asleep comfortably! I am so happy that all it took was to take AWAY a sedation drug to make him feel better! Hopefully this does the permanent trick!
Sometime soon, they will be having a care conference to come up with another plan as to getting Noah off the ventilator. One of those options is getting a trach put in. :(
Please continue prayer for Noah and his mommy and daddy! And also for the little girl and her family who gave her to Jesus tonight. Thank you.
Monday, February 8, 2010

Noah has a BIG day tomorrow morning!

Tomorrow, they are planning on taking out the breathing tube. If he has a great night, they will most likely be pulling the tube first thing in the morning.
Noah received another blood transfusion this afternoon because his blood count was a little low. He has had a few agitation episodes today and his belly has been really distended, They took an x-ray of his abdomen and it showed quite a build up of gas in his gut.. poor buddy. We stopped his feeds and that seems to be helping. He has also been getting suppositories and gas drops today. Over all, he looks good! He still has pneumonia, but that seems to be under control. Right now, he is kicking his feet trying to stay awake! Silly boy! We even got to see him smile! :)
I am staying at the hospital tonight and Aaron is going back to the hotel. I want to make sure I am here in the early morning for any changes.
Please, specifically pray for Noah's safety tomorrow. For Noah to be strong enough to breathe easy on his own. Pray for his belly, that his body will continue to pass the gas that is building up and causing him so much discomfort. Pray for a peace of mind for Aaron and I, as it is very scary for us to see Noah struggle so much. Of course, we can all pray for what we want to happen with Noah, but we must understand that God is in control. Only God's time is the right time. And if it is Gods time for Noah to really excel forward tomorrow, then I pray that it will be evident the second that tube comes out! If it is still not Gods timing, then I pray he will keep Noah safe until it is.
Thank you all so much for taking the time to read this and pray for our sweet boy!
Update to come in the morning after rounds! Good night!!
Saturday, February 6, 2010

A confusing and frustrating day so far...

Morning rounds: Noah still has pneumonia. They are keeping him on antibiotics. He is on full feeds and is tolerating them just fine. He is still having difficulties weening the ventilator down, so please continue prayers for his respiratory status. His abdomen is still distended and that could be causing his respiratory failure so they will be looking into that. The doctor on today, seamed concerned that this surgery didn't really do any good for him. His chest x-rays are still not improving much. This could be due to a leak is his breathing tube. We don't really know if he will be ready for extubation tomorrow.
I really feel mentally and emotionally and spiritually exhausted. Noah should be learning new "baby things" and learning how to crawl, and play freely. I am so upset. Today I have a million questions running through my mind... not necessarily for the doctors either. Today is just not a good day for me.
Thursday, February 4, 2010

God is hearing our prayers!!! Don't stop now!!!

Mommy is home tonight and Daddy stayed with Baby.
Aaron has informed me that Noah had a great day. He did get a fever earlier so they drew labs. But nothing has grown from them yet. His fever has gone down already, just pray that it stays away. Aaron also said that the plan is for them to take the breathing tube out by Sunday. This still is making me nervous, just because of what had happened last Saturday. They have turned down his O2 to 30% and is doing well. They have taken him off all his sedation drips and now receives them PRN. His chest x-rays look better everyday!! Noah is doing awesome!! "And All will see how Great, how great.. is our God!"
I miss my bugga boo, but I also am enjoying time with my sisters... It is a nice refresher!

Sing with me, How great is Our God!

Praise and Prayer night was just what I needed. I really felt God's presence and He spoke to my heart.

When we got back to Childrens last night, Noah was doing a lot better. Aaron and his mom walked in and Noah looked at his daddy and started smiling! :) He still has a breathing tube in.. they are going to leave it in for another day or two just to be sure he will be well and strong enough this time. So please pray we will not have any set backs.

His numbers keep improving, Praise God! They have started to increase his feedings as well and so far he is doing great.

This morning his night nurses told us that he was a good boy. One of them said, "He is such a flirt!" ... Yea.. Noah is starting to feel better. :D

They are still working on weening him off the sedation meds and I think they have finally figured out a good regime because he is more awake and HAPPY! He is still going to be going through withdrawls so please continue to pray for easy and quick transition.

So, I am going to MOPS today... Can't wait!
This is Noah this morning! See his sweet smile??! :)
Tuesday, February 2, 2010
Another day,come and gone. Aaron's mom flew back up this afternoon. Glad she can be here to visit.

So... Today was uneventful.. and that is a GOOD thing! LOL! Noah is feeling a little better today.

They are weening his sedation meds again to hopefully get him prepared for extubation. His surgeon came by early today and was hopeful we could get him off the ventilator in a day or two. This morning he had an echo done to remeasure the fluid around his heart. Still don't know the results yet. He also had a new central line put in today and now they want to do an EKG just to make sure it is not aggravating his heart.
Noah still has a lot of secretions in his lungs from his infection. I pray that the antibiotics he is on will work fast! His lab results show his white blood cell count is more normal now. They also pulled the IV line, this evening, that gave him the blood infection so his numbers should improve even more tomorrow. His blood pressures are starting to come down to. I think we are FINALLY headed in the right direction!
Right now, he is resting peacefully! :)
Please continue to pray for his fast recovery so we can bring him home and he can be Baby Noah again!! Thank you all who are sharing this blog with your family and friends!! And thank you Jesus for my baby boy! :)
Monday, February 1, 2010

Noah Solomon ... Birth to present...

Noah Solomon was born June 22, 2009. Our pregnancy had a lot of ups and downs, but we were excited to welcome this beautiful child into our lives.

March 2009 -- We went in for a routine ultrasound and left with some devastating news. Our son had inherited a congenital heart defect that runs on Debi's side of the family. The diagnosis - "Double outlet right ventricle". They also felt suspicious that his right lung was smaller than the left due to smaller right pulmonary arteries and his heart being dextrocardia (turned to the right). The cardiologist was confident, though, that Noah would not need emergency heart surgery at the time of birth, but that he could go home and "get bigger".

June 21st, 2009 -- Father's Day!! We attended church in the morning and lunch right after to celebrate... we would be going in later that day to be induced! The next day, Noah was delivered by cesarean and he was as handsome as could be! About two minutes after he was delivered, they suspected he had another defect ... tracheoesophageal fistula (TEF). Basically, his esophagus was not attached to his stomach and there was a communication between his trachea and esophagus. They put in a little suction tube in his mouth to get rid of the secretions so as to prevent him from breathing it in causing infection. He went straight to the NICU and had a CT scan and an echo cardiogram. The CT confirmed the TEF diagnosis and the echo showed a rare vein only found in 1-3 births out of 100000 babies, scimitar syndrome, and his right lung was, indeed, hypo plastic (small). We could not feed him until he had surgery to repair his esophagus and on June 26, he underwent his first major surgery. He was in surgery for more than six hours. He came back with about a 3 to 4 inch incision in his left ribcage and a g-tube inserted into his stomach through his abdomen. It took 2 full weeks for him to recover and heal from surgery and after 3 weeks of life we were FINALLY able to feed Noah by mouth! Noah was discharged on July 17... he was almost 4 weeks old!!!

Noah was home for about a month and a half. We had struggled with weight gain and reflux the whole time. Noah was seen, in home, once a week by a home care nurse. She kept track of his overall health and growth. By the end of August, he had gotten sick with a respiratory virus and was admitted into the PICU up at Children's Hospital of Wisconsin. He was there a total of four days and was sent home in hopes that he would get over the virus... A week and a half later, we were back. He was admitted on September 17 and was put on a CPAP machine to help keep his airways open and to clear out his lungs. After five days, they had started feeding him through his g-tube but the CPAP was blowing so much air into his stomach that his feedings pushed right back out his g-tube. They switched his g-tube to a gj-tube so they could feed him directly into his small intestine and vent his stomach at the same time. Three days later, the "j" part of the tube and perforated his bowel causing him to become septic and rushed into emergency surgery at 1 in the morning! He came out of surgery with a 3 inch vertical incision from his bellybutton upward and a new placement of a new g-tube and an inch incision in his pelvis for his hernia repair. He was on HEAVY duty antibiotics for a little over a week. This was not the end of this "little adventure" ... he ended up having two abscess' drained.. one on his liver and on in his scrotum. ALL incisions had become infected and were reopened and cleaned out. After about 2 weeks post surgery, Noah was getting better. He then became septic again and was cultured to discover he had a blood infection from one of his IV lines. Again with a round of antibiotics. On November 17, exactly 2 months after his admission to the PICU, Noah was discharged and sent home in time for his first Thanksgiving!!

Noah was doing GREAT at home! He was seen in home once a week by his home care nurse. This time around, Noah had been gaining weight like a champ! After about 3 weeks, Noah slowly became sick with a respiratory virus again. He was home for Christmas, but was once again, admitted to Children's on December 28th.

Noah had a broncoscopy, where they look at his airways, about a week into this admission. The study showed a narrowing of his trachea, severe tracheomalacia, and a collapsing of his left bronchus with a lot of secretions. They determined that he would need a pexy done on his airways and pulmonary arteries before we were sent home. Before they would do the surgery, they sent him to the cath lab for his first heart cath. In the cath lab, they had coiled off the scimitar vein and put in a balloon in his right pulmonary artery to even out the blood flow to his lungs. Three days later, they sent him to the OR for his airway pexy surgery. This was done on January 25. The surgery took a little over four and a half hours to complete. Noah was then transferred to the cardiac ICU floor for his recovery since the surgery involved lifting his pulmonary arteries. He now has a new incision that is about 5 inches in length from is neck down. We have been here a month and four days so far and it does not look like we will be taking Noah home any day soon. But we are faithfully praying for a quick healing!

References:

https://health.google.com/health/ref/Double=outlet=right=ventricle

https://health.google.com/health/ref/Esophageal=atresia

https://emedicine.medscape.com/article/186735-overview

http://en.wikipedia.org/wiki/Scimitar_syndrome

https://health.google.com/health/ref/Dextrocardia

https://www.nlm.nih.gov/medlineplus/ency/article/001084.htm

Renew your Magazine subscription or buy cookie dough !

New! Renew your magazine subscription or buy yummy cookie dough here! Help raise money for baby Noah!

About Me

My photo
Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...

He is getting so BIG!!!!

He is getting so BIG!!!!
Getting a short break from his O2 :)

Grab Our Button!

Photobucket

My handsome men!

My handsome men!
Powered by Blogger.

Me and my boy :)

Me and my boy :)

Dec. 6, 2010

Dec. 6, 2010
I got to hold Noah!!

Followers

Blog Design By

Photobucket

Blog Archive