Operation Noah Recovery: Day 3

The nurses all ask if I feel burned out or trapped in the 4 walls of this hospital room and I have to say, surprisingly no! Although I haven't left this room or looked out a window since Tuesday, I don't feel isolated at all because of all the uplifting messages, cards, offers to babysit Natallie, prayers and food that has come our way. So in a way I feel like all 300+ people who have read about Noah are in this room with me and supporting us in this time. We are so blessed. This morning when Simon came to see us briefly before work, Noah even started cooing in daddy's arms! Nothing brings me more joy than to see my Noah-bear starting to act like himself again!

Noah was switched from the antibiotics via his IV to oral amoxicillin last night. He needs to be able to take his medicine orally for us to go home. The first time the nurse administered it, he puked it up right after. I was a bit discouraged but the nurse said we could try again and this time we did tiny little drops in his mouth at a time. The process took much longer to get the dosage in but he didn't spit it up!

Noah was so good last night. He nursed for the first time ever since Sunday! A good 10 minutes and didn't puke it up after. He nursed again at midnight for 10 minutes and then slept until 7:30am! Yes! Yes! Yes! I have to be standing up and rocking him while he is nursing but that's OK, I am so glad he has nursed twice that I didn't even mind that my arms were numb from holding him. Simon and I are going to have some really toned biceps and triceps once this is all over with.

We had to administer the amoxicillin orally again today. Again we did it a few drops at a time and it took a long time and he didn't puke it up after! We will have to keep giving it to him 3 times a day and if he keeps it down that's very promising that we will go home soon.

And I don't know if you believe in miracles but I do. Yesterday he had several large white patches inside his mouth and a nurse and three different doctors looked at it...even the senior resident doctor and they were thinking it was probably oral thrush. Later that evening, I was feeling sore after breastfeeding which is likely because the bacteria can pass back and forth from Noah's mouth to me during feedings. I was feeling again discouraged that there was yet another hurdle to jump over but this morning the same doctors came in to examine in and they couldn't see those white patches anymore. Completely gone! The doctors were puzzled because all three of them saw it yesterday and now there's nothing and it hasn't hurt me anymore to breastfeed? Miracle? God answering prayers? I think so!

Miracles do happen! Just look at this boy!

So another new thing today is the removal of Noah's IV. The nurse explained to me that with babies this young, IVs don't tend to stay in for much longer than 3 days and it might pop out from the vein but still be under the skin and this causes problems and pain. Noah's IV kept on getting twisted up and the nurse noticed that he didn't like anyone coming close to where the IV was going in his leg so although they wanted to keep the IV in him until nursing was well established they took it out earlier because it was hurting him. So one less cord and machine to be attached to and a leap of faith that Noah will continue nursing well. He has had one good feed since the IV was removed this morning and I have faith that he will continue to do well.

He has been mostly awake, alert and happy today. Got some big Noah-like smiles and even a little chortle. He's come a long, long ways from the lifeless ghost that he was on Tuesday. The doctors came in and said that they are really pleased with his progress. He is officially not dehydrated anymore and although his lungs still aren't normal yet, he has improved a lot. They said the RSV cough could linger for weeks but it seems like the worst is over. His temperature and oxygen intake has been stable. He has taken 2 of doses of amoxicillin orally. The only thing left now is for him to nurse for a whole day and once he proves he won't need the IV to meet his fluid needs, we are good to go! It could be as early as tomorrow!

The nurse told us she is so pleased to see how quickly he has made progress. She said he was in terrible condition downstairs and they didn't want to scare us at the time when we were in ER but they thought he was in very critical condition. He was showing all the signs for sepsis and they were worried about him going in sceptic shock and that his organs would start shutting down. It was by God's grace that we were in the ER on Tuesday or I may not even be holding Noah today. Again, thank you for your prayers. God is good. Very, very, very good. We are so glad Jesus did not want Noah up with Him just yet. 


 

The though of going home tomorrow makes me very, very, very ecstatic. With the amount of people praying and rooting for our little guy, I am optimistic that we'll be discharged soon. I miss Natallie so much. Grandma and Grandpa Neufeld are driving down from Enderby as I type this and will be staying at our house and watching her tonight and over the weekend. But maybe Noah and I won't be here this weekend....I hope my next blog post will be about us going home. Home sweet home. Soon enough my little bear will be strong enough to go home!

Operation Noah Recovery: Day 2

wow. Simon and I are speechless at the amount of encouraging words, support and delicious food that has come our way. It is so encouraging to be lifted up by everyone. Did you know that so far 296 have read the blog post about Noah? Even if only half of everyone who read it prayed for him, that's a lot of people lifting Noah up to God. Thank you. Thank you. Thank you. We are blessed you are in our lives.

So how was my night??? I was anxious about having Simon go home for the night and unsure how long I could hold sway my crying sack of potatoes but God answers prayer and he settled down in the hospital crib at 10:30pm last night and was up twice. The first time I got him settled in half an hour and the second time he was up from 4:00-5:30am but after another dose of Tylonel, he was able to go back to sleep in the hospital crib. Praise God!

The lab tech came by at 7:15am and said she wanted to do blood work. Noah was still asleep and I remembered what the nurse told me and I asked her to come back later. She said she would have to check with my nurse if that was OK and of course my awesome nurse backed me up so Noah had a great long sleep until 8:30am.


screaming during his blood work this morning

The nurses came by and listened to his lungs and said they still aren't normal sounding but they aren't as terrible as yesterday. Alright, I'll take 'not terrible', and he's not coughing quite as much.

And drum roll.....the bacteria culture came back negative! This is such an answered prayer so he does not have a blood infection.

When he woke up this morning his face and his eyes were a bit puffy. The nurse explained it might be because of all the fluid he is getting in his IV. He was so dehydrated that they had to pump lots into him and it might be going to his face. The were able to turn down his IV this morning from 30 to 15 mL/h so that means his hydration levels have improved. By turning down the IV means he will also need to start nursing since the IV isn't providing all the fluids and nutrients he needs.

puffy face and eyes this morning

The nurse also noticed he has a diaper rash which is probably a side effect of the antibiotics. Apparently pure oxygen heals red baboon bums quickly so for awhile today he had the oxygen mask on his little baby bum. There's a first!

"oxygen bum" therapy

The nurses also noticed white patches inside his mouth today when he was screaming and crying. They had 3 different people come in and I had to hold him down while they put a flashlight in his mouth and examined it. It's inconclusive right now but the doctor is guessing its probably oral thrush which is an overgrowth of yeast. Oral thrush can also lead to diaper rash (which the nurse noticed today). He will probably need some sort of antifungal treatment to treat the thrush. The oral thrush could be causing pain in his mouth which could lead to the reason why he is not wanting to nurse and if we want to ever go home, he needs to start nursing so go away thrush, go away!

napped and woke up happy!

It looks like right now Noah is just battling bacterial pneumonia and RSV and oral thrush. The course of treatment is still antibiotics through the IV along with the saline solution. The antibiotic treatment will last for 10-12 days but not the whole antibiotic treatment needs to be at the hospital. Right now all his antibiotics are through the IV but if he shows that he can keep medicine down orally, we will get to go home and continue treatment at home. Really want to go home. I have not left Noah's room since we checked in. I haven't looked out a window since Tuesday. Is it still snowing? I don't even know.

So for prayer items, it comes down to this:

• praise that Noah had a relatively good night last night
• praise that he does not have Scepsis (blood infection)
• praise that Natallie is doing really well with my mom and enjoying play dates with friends
• praise that Noah had 2 naps today without being held and even woke up with a smile!
• praise he was more settled today and had some 'normal' moments where he had tummy time and was grabbing for his toys and trying to put all the hospital wires in his mouth
• continue to have no fever (he has been given lots of Tylonel for pain so they want to see if he can keep a normal temperatue without Tylonel)
• diaper rash and oral thrush to get treated quickly
• need this boy to start nursing again!!!!
• still arches his back in pain and for the doctors/nurses to figure out what is causing it

Also, my mom told me today that my grandma just got admitted to emergency last night and ironically enough, she has been diagnosed with pneumonia as well. It's not good to be little like Noah and get it but it's also not good to be 92 like my grandma and have it either. So please, when you're lifting up Noah in prayer, could you pray for my grandma as well? The nurses say with all the factors she is at risk for heart failure. Our family is just dealing with a lot right now but God is good and we put our trust in Him.



Operation Noah Recovery: day 1

Today has been a long day. Noah is still hooked up to the IV with saline solution and antibiotics going in. He's also still got the heart rate monitor and oxygen monitor on. The nurses come in and out to check on his vitals.

Yesterday and the previous days he has been sick, he has been sleepy and lethargic. He didn't wake up for feeds and if I left him alone, probably would have slept the entire day. Now that he's on the saline solution to keep him hydrated, he's still sick but very alert and awake but this also makes him realize how much he hates his life right now and he has been miserable most of the day. It didn't help that this morning he was woken up by a lab tech who had to take blood samples. Who wants to wake up to having needles jabbed in your foot and it's not just one poke, she needed to collect a vial of blood so it was jabbing and tapping at his poor little foot until she collected enough blood. What a horrible way to wake up. The nurse told us later that was very bad etiquette for the lab tech and they have a rule that you can never put a needle in a child while they are still asleep. That's just mean. I agree. She told us that if that happens again tomorrow I can tell her off. I think I will.

I think he has been jabbed at with needles and poked and examined so many times when we lie him down that he has very quickly associated that lying him down means something bad is going to happen so we have not been able to put him down ALL.DAY. without a crying sobbing protest. I am so glad Simon is here, he has held Noah most of the day and that was the only way he was able to get two short naps in. This is no easy feat. You try holding a sack of potatoes and swaying from side to side for 12 hours, only getting a break when you really need to pee or eat. Without Simon's support today, I would of lost it. So if you see Simon or have his number, tell him he is super dad.

The nurse came in and explained a few of the different blood tests that have been done and what still needs to be done.

The CBC stands for Complete Blood Count and it is a blood test that evaluates the three major types of cells in the blood: red blood cells, white blood cells, and platelets. This checks to see if the child has an infection. Mostly, they are looking at the white blood cells (WBCs). WBC's help the body fight infection and an abnormal WBC count means there is something wrong. Noah's CBC of course confirmed what we already knew, there are elevated white blood cells because he has the infection in his lungs.

Another test was the blood gas test, it test to see how much carbon dioxide is in the blood. A higher Co2 count means that although you are taking some oxygen in, its not all being expelled out properly and some carbon dioxide is trapped in the blood. The first test last night Noah's levels were high but this morning, it looked better.

The most important blood test result we are waiting for the blood culture to confirm whether or not he has Sepsis. The nurse explained that they take blood and see if they can grow bacteria in it, if they can then it confirms a blood infection. Let's pray the test does not come back positive. If it does, there is antibiotics to treat it but it just means we will be in the hospital for recovery much longer.

He has been crying a lot today, inconsolable crying which is really hard to listen to. When we try to hold him he arches his back and the nurse said that's a sign that he is in pain. Oh my sweet, sweet boy, I am so sorry you are suffering.

In light of all this darkness, its important to count the blessings and praise God for the little things like:

• for a few moments he was calm and even playing his Sophie giraffe
• he tolerated being rocked in the car seat for a little bit, enough for both Simon and I to have a few minutes break of holding him
• a few little smiles today and a feeble laugh
• when he cried there were tears (this is a big thing because before he was so dehydrated he would cry but without tears, this is a sign that the hydration process is working)
• no puking for the last 12 hours
• nursed for a few minutes today
• starting to pee in small amounts (another sign that hydration process is working)
• the overwhelming words of encouragement from our friends, family and the church as well as bringing us food so we don't have to leave Noah's room
• my mom giving us updates of Natallie throughout the day and her fun adventures with PoPo
• Natallie's card for Noah that makes my heart smile

For tonight, please pray

• Noah will settle down and sleep in the hospital crib (so far today, after waking up with a brutal needle poking episode in the crib he has refused to lie down in the crib)
• if he doesn't sleep in the crib he will at least sleep in the car seat and I won't have to hold and rock him all.night.long
• Simon goes back home tonight and gets a much needed rest since he has to go back to work tomorrow
• his blood culture sample comes back negative for Sepsis
• his vitals (blood pressure, temperature, heart rate, oxygen levels) remains stable (when he gets worked up his heart rate can go up to 220 beat per minute)
• he begins to nurse regularly soon
• our little family to all be home together again instead of me & Noah here, Simon home alone and Natallie with my parents

 Good night everyone. Thank you for all your love.

A very bad dream

Thank you everyone for your prayers and offers to help. I still think its a very bad dream but no, it's real, Noah is sick, very sick. When we had brought him to the ER at Royal Columbian on Sunday, he was discharged in 4.5 hours with a diagnosis of bronchiolitis and we were just told to use the Ventolin chamber to help him breathe. I thought we had already hit rock bottom.

Then came Monday where I took him to my regular family doctor, she listened to his lungs and said they sounded good but he stopped nursing altogether. We tried feeding him Tylonel to ease the pain, milk in a syringe but everything that went in came back out in a few minutes.

Yesterday (Tuesday), he still wasn't making an improvement. He had not had any milk in over 24 hours and was getting weaker and more lethargic. I took him to Children's Hospital Emergency this time. It was a by God's grace that I took him when I did because things went from bad to worse within a few hours of him being admitted. He spiked a super high fever and his breathing was very laboured. He lay lifeless on the table.

so scary and not moving in the ER

Everything was fast-paced and blurry, nurses and doctors came in out. Noah was such a brave trooper, he had the oxygen mask, and IV of saline solution and another IV of antibiotics. For the next several hours, he was getting poked and examined by everyone who came in and out. He had to have another chest X-ray to see what was going on in his lungs. We heard words like "sepsis" which I googled and was horrified to read about it because its is a terrible thing and babies can die from it. They were also very concerned about his dehydration because initially he wasn't putting up a fight to nurses and doctors poking needles in him. However after the IV was put in, he was more lively and screamed and bawled at every procedures. Not that I want to hear him cry but the nurses said it is a very good sign to have him fight back instead of lie there and do nothing.

oxygen masks, IV and antibiotics

 

EEG tests

 After all the tests, the doctors came back and told us he has pneumonia in both lungs. And we need to wait for additional bloodwork to come back to determine whether or not the infection in his lungs and spread to his blood as well.

 

hooked up to the IV for the night

We are now transferred from the ER room to the recovery room. It was a tough night, more coughing, vomiting and crying. I don't blame him, he has been through hell. He looks at me with these eyes that just plead, "make it stop! what is happening to me?"

Another doctor came in and told us that they are still waiting for the blood work to come in.  He is still on his IV and an oxygen and heart rate monitor. Whenever he gets upset, his heart rate sky rockets. For awhile last night at 2am and 5am, the only thing that would settle him is if I held him upright and swayed back and forth. I did it until my arms couldn't hold him anymore. They said we would be here for at least another 48 hours, he needs to not have a fever for at least 2 days and start nursing again and having wet diapers. He is still refusing to nurse but at least he has the IV to keep him hydrated.

dressed in the smallest hospital gown I've ever seen and clutching Sophie the giraffe

A nurse just came in and listened to his chest and breathing. She says his chest sounds horrible and there is still a lot of fluid and mucus in there. His cough sounds horrendous, so abrasive and painful.

Another nurse just came in and said he tested positive for RSV (Respiratory syncytial virus) and apparently that is a sort of good thing or else they would have to do more tests to confirm what is wrong. So he's got pneumonia and RSV and I am hoping nothing else. Our little man has a lot to battle.

Keep praying for him, he's still got a ways to go in terms of recovery. As much as I hate this, we are glad he is in good hands and the best hospital in the province. We are so glad to have such great medical care here.

And many of you asked how I am doing. I am exhausted. I am weary, I haven't slept for a few days. I am anxious, I am worried, I am glad he's at the hospital and I don't have to worry about getting tiny sips of milk into him. I hate hearing him cry, its a sad I'm-in-pain kind of cry and I hate not being able to do anything other than hold him. This sucks a lot. Sometimes holding him doesn't help, he just arches his back and looks like he is in so much pain. I want to cry. I want to take it away from him. I wish it were me and not my baby. And I miss my little girl. I am glad she is with my mom right now but I miss hugs from my little girl. I would love to be reading Natallie a story on my lap right now.

But Simon is with me, he was able to hold my hand through all the procedures yesterday. I was on my own at night because there is only one bed here but he came back in the morning and was able to get the day off work so we can take turns holding him.

 

As much as it is no fun being at the hospital, the nurses are doing all they can to make it better for our little guy. A nurse just came by with a little mobile for Noah. He started touching and playing with it. It's just a small gesture but it means so much to see how child-friendly it is here.

 

 Thank you for all your prayers and texts of encouragement, I may not be able to respond to all of them, I'll keep posting updates here as we know them. We are putting our trust in a great God who heals and we have faith in the One who knit him in my womb and loves him more than we could ever know.

#princesspanties

I'm sure many of you guys saw the Christmas Jammies video that went viral...well Simon and I watched it and said, "we should make a video like that" so we made up a parody of that song about the thing that is consumed our lives the past week (potty training our two and half year old) but sadly, neither of us have any musical ability whatsoever and most definitely can't rap so sorry to disappoint but we can't pull off a spiffy video. All we can share is a clip of Natallie jammin' in her princess panties and the lyrics to our potty training song. You can sing it yourself, it's the tune of Will Smith's song "Miami". Catchy eh? Enjoy!

Yeah Yeah Yeah Yeah

Princess Panties uh huh

Potty Training, bring it on now

You ready for this

Check it out...

 Ever since you were born, you just let it go

Just like Daddy with your pants down low

But now you’re a bit over two and not yet three

You know your numbers and all your ABC’s

But there’s one thing you haven’t yet learned

Potty training is now our biggest concern

Diapers are expensive, can’t buy these no more

Worth risking some pee on our brand new floor

No more diapers, let’s throw these out

Time to see what being a big girl is all about

You’re gonna get this girl, I have no doubt

But I know some Disney royals that can help us out

Ariel, Cinderella, Snow White, Aurora and Belle

Jasmine, Rapunzel and that brave mademoiselle

Party all day with those panties on

Mommy is so happy with those diapers gone

Are those princess panties? (Those are princess panties)

Jumping on the bed with those panties on

Mommy is so happy with those diapers gone

Are those princess panties? (Those are princess panties)

#princesspanties

When the timer goes off we’ll give it a try

A big high 5 if your diaper is dry

Just sit on this so you don’t fall through

Now sit on there for number 1 and 2

Read your favourite books while you’re sitting  there

Dr. Seuss, Pete the Cat and the Bernstein Bears

If you can go before the time is up

Mom will give you Smarties in this cup

And then Mom will always ask if you have to go

Don’t wait til we’re in the car to tell me so

In your princess panties all day long

Playing and dancing and singing this song

Washing the bed sheets is what we’ll do

So you can wear panties when you’re sleeping too

Even those princesses had to figure it out

That’s what potty training is all about

Come on girl don’t wet your pants

Let’s sing and do a happy dance

Party all day with those panties on

Mommy is so happy with those diapers gone

Are those princess panties? (Those are princess panties)

Jumping on the bed with those panties on

Mommy is so happy with those diapers gone

Are those princess panties? (Those are princess panties)

#princesspanties

 And for those of you wondering, potty training has gone really well. Just like the song says...Mommy is so happy with those diapers gone!