Monday, September 30, 2013

Your UTI

We spoke with Dr. Goldberg today.  You did not have your heart ultrasound today as planned and it will be postponed until next week after your antibiotics are all done.  You'll have 7 days of antibiotics.  They will reevaluate next week about surgery.  You are looking really good the past couple days.  You are more active again and just look better.  That is why it is so surprising that you have another infection.  But hopefully it is because you just need more time for this PDA to close on its own.

Dr. Goldberg also spoke of possibly testing you for urinary reflux at some point like Abby had done about 6 years ago.  She didn't have reflux and hopefully you won't either; then you won't need longterm antibiotics.  They are going to try to go up on your feeds faster like 2mLs per feed instead of 1.  I'm a little nervous about that.  You've had some residuals lately.  One time you had not digested any of your feed so they had to hold that feed.   You got some blood today too.  I wonder how many blood transfusions you've had?  One of these days I'm going to ask a nurse to count.


Sunday, September 29, 2013

Tiny boy, BIG influence

I got this message from my friend Erin Kuhn:

"She [Erin's mom] has been sharing your and Joshua's story with her students. Your precious son's life has touched so many in NY. My mom teaches medical law and ethics and has shared some of the struggles with the nurses not listening to you with her students. They have discussed and talked about how important it is to listen to the parents. She also teaches a section in one of her classes about life/life issues. She showed one of Joshua's pictures to her students and so many were unaware just how a baby develops. There was a student who had an abortion come to my mom crying after seeing his picture. Another who was thinking about abortion has decided to rethink her decision. Her students are asking for updates on your family. Her church is also praying for you all. Little Joshua's life has touched so many people. Isn't it cool how God is using him?"

God is using you, Joshua.  People are praying who don't normally pray.  Grandma Rum has been telling me how you are affecting people in her family, awakening their faith.  Even though God is working good through this, I am selfish...I want your life to be more than this chapter in the NICU.  I want you to grow healthy, strong and whole; our prayer is that you may thrive in this life here on earth.  I pray that God will show his faithfulness and glory in healing you completely!  God's plan is bigger and better though; we will know His plan in time.

Another delay?!

Well, Joshua today was a really rough day for Mommy.  I was very emotional and I had to wait a long time to hold you because the nurse wasn't ready.  Then on top of that we got some bad news.  They checked a urine culture today and they didn't see any yeast anymore, BUT they found bacteria now.  ANOTHER INFECTION!!!!!  Seriously?!  So you are on antibiotics and your surgery will most likely be in another week or two, but we'll be talking to the doctor tomorrow to know more.  The nurse practitioner today did not relay the information very kindly or patiently and I was very frustrated with her. 



You can really see your crooked pinky in this photo.
One nurse said it may be because your bones have
a lot of cartilage in them now.


Saturday, September 28, 2013

What a stinker!

Here's my update from Facebook:
Joshua decided he didn't want his breathing tube in this morning. He got his hand behind the neobar holding it in place and pushed it out! Thankfully his nurse was in the room and able to bag him quickly and give him manual breaths before his O2 levels and heart rate fell too much. So they had to reintubate Joshua yet again; the nurse said he handled it pretty well though. What a stinker!

And here is what some people said:
Jessica E - I think that sort of feistiness is going to serve him well!
Brian K - A guy who knows what he wants!! That's the spirit!!!
Sarah H - Sounds like you have a little man who knows how to get what he wants! So glad the nurse was right there




You with your new tube and neobar. 



My cousin Mark visited you today
---------


 
 

Friday, September 27, 2013

Happy 1 month Birthday!

Happy Birthday little boy!!!  It is hard to believe it has been one month...it feels so short of a time, but it feels so long because of our exhaustion!  Mommy and Daddy have been burning the candle at both ends and not been getting much sleep.  Mommy really has no concept of time anymore.  It seems like it still should be summer to me since I totally missed the last 3 weeks of August while in the hospital and then been in a fog ever since.  We are just in survival mode now - going day to day - not thinking or planning more than a day or two ahead.  It is taking its toll on all of us.

You have given us a good calm day for your birthday.  Your vent settings are down as low as 28% O2 which is really low for you recently!  Right now you are a 35 bpm, 22 pres. in, 8 peep, 33% O2.  Daddy is holding you and he changed your diaper today too.  You gave him a big poop after he had just changed out the dirty one.  Today you were moved up to 8mL feeds and are still doing well.  Thank you Lord that Joshua's intestines seem to have healed and are still tolerating milk well!  We're making progress on up to 18mL...tomorrow you should be halfway!  Next week though they will probably have to stop feeds with the surgery though.  We met a new doctor today - Dr. Goldberg.  He said he thinks they counted your course of anti-fungals wrong and you should be done with them on Monday which would mean surgery earlier in the week.  We are still praying for that valve to close though without the surgery.

Two new babies were transported to the unit today at the same time.  It made mommy a little emotional thinking of the day you were transported.  There is so much hustle and bustle with many nurses and doctors around and the 3 people from the transport team.  I had never seen the commotion of a new baby in the unit before.  During your transport, I was so scared for you; everything was so new and you were so little and fragile.  And I was back at the hospital just wondering and praying for you. 

Your new next door neighbor only weighed 400g at birth two days ago.  The baby's head looks smaller than the size of a baseball.   I watched them a little bit through the window in your room.   It makes me so thankful that at least time has passed and we are able to understand things better than about 1 mo ago.  We know what all the beeps mean.  We are braver talking with doctors and nurses.  I am brave enough to change your diaper, to do your eye care, and your mouth care.  We are able to touch you and hold you.  We have a little more consistency with our nurses.  You can open your eyes now!  Your skin is more pink than purple.  And we are one month closer to hopefully bring you home someday.
 
 


Funny grimaces!
 




Mommy and Daddy holding you tight
 

Happy Birthday!



Thursday, September 26, 2013

Head ultrasound results

Your head ultrasound was stable...no new swelling, no less swelling.  I am thankful, yet I am disappointed.  They did see that your blood flow to your brain is not as it should be.  Blood is swishing away from your brain during the diastolic phase which means your brain is not getting the blood and oxygen it should be.  Dr. Davis thinks this is because of your PDA, but she will check with the neurosurgeons to see what they think. 

Getting weighed by our favorite nurse Chris.

Wednesday, September 25, 2013

Pastor Paul's visit

Mommy and Daddy asked Pastor Paul to come and visit you before he retires next week.  Pastor Eric came to see you too, but that was last Tuesday - the day of all your kidney problems, so that visit was a lot more stressful just because of the day.

Pastor Paul was so thoughtful and caring in his words.  He spoke of you running in the yard with your brothers and sister someday.  I pray that is true!  We talked more about our decision about baptism.  He said he would not rush to your bedside in the middle of the night it you were dying for your sake.  You are already in the Lord's hands; the Lord has a place for you in heaven if you were to pass away too early.  But he would rush to the bedside for Mommy and Daddy to comfort us and to baptize you if we feel comforted by that.  He quoted Martin Luther saying, "It is not the absence of baptism that condemns but the avoidance of it."  Mommy and Daddy really appreciated his words and we will be talking and praying more about your baptism in the days to come.  We prayed over you, holding hands in a circle with Mommy and Daddy completing the circle by laying our hand on you.  There are so many struggles you face Joshua, I pray that our Lord strengthens you to fight these battles and that you come out on the other side alive and thriving.  Many, many people are praying for you little boy!

You had another head ultrasound today - we won't know the results till tomorrow.


You always like your hands by your face,
you like to mess with your tubes too.
 

Tuesday, September 24, 2013

Team Rumschlag

Our whole team visited you tonight.  It had been 2.5 weeks since Abby, David, and Jeremiah had seen you last.  Soon they will not be able to visit once flu season starts.  Abby and David made drawings to decorate your room.  Your sister and brothers love you so much!  They were so excited to see you and they did so good being quiet and whispering so you could rest.  Abby and David got to watch your care time too and see you all unwrapped.  They liked your fingers and toes and thought it was funny when the nurse changed your diaper.  It was nice to have our whole team in one room!
"I wuv baby Joshua" - Jeremiah


Kissy time!


Monday, September 23, 2013

Praying for a miracle

Today we met with Dr. Davis to talk about Joshua's PDA and resulting issues with his heart lungs and other organs.  It went just as we suspected...Joshua needs surgery to close the valve.  This news is very disheartening and scary, but deep down I know he needs it.  Each day his lungs get worse and worse.  Settings on his ventilator keep going up.  His lung x-rays keep getting more "wet" and hazy.  Now his left atrium AND left ventricle are enlarged from overworking to pump the extra blood that keeps recirculating in his heart.  It is not a good situation. 

Dr. Davis mentioned that he would likely get "very sick" before he got better after the surgery.  We have heard that phrase from the nurses as well, but no one ever says what that really means.  Well, after much asking she said it means he might be on blood pressure medication because his blood pressure will be out of whack.  It also means that he probably will be upped on his settings on the vent.  Is there anything else I ask?  Isn't that enough? she says.  Well, could he die? I ask...do you really want to go there she says.  Yes!  we say we want it all laid out on the table! Joe says.  Yes, he could die...of the 2 babies with this surgery last year one of them died.  We also found out that this surgery is so rare and they have yet to do any this year so far!  How did Joshua end up this sick?  Why didn't the medicine work to close the PDA?  When I asked how others on the floor are doing with their PDAs, she said that Joshua is way outperforming everyone (and NOT in a good way) in terms of PDA size, lung function, heart swelling etc...which I guess is why he will be their first PDA surgery of the year even though we are already 2/3 of the way through it.  Why can't you be the leader of the pack in a positive way Joshua?

Lord, we are praying for a miracle for little Joshua.  You have the power to close the valve in an instant.  I pray that you would heal our son. 

Today during our snuggle time I sang to you, Joshua.  Sometimes it was just in my head and heart, singing praise songs and hymns and other times it was quietly, softly sung to you.  I hope you were encouraged.  I hope it strengthened you and all you are fighting against.  I hope it gave you peace.  Our God is a great and mighty God, a powerful healer.  Be strong and courageous, Joshua.  Mommy loves you.

The transitions to kangaroo were disheartening again.  Joshua did fine on me, but right before we transitioned and several times after they had to "bag him" give him manual breaths of air with higher pressure and frequency than the vent to get his HR and O2 levels up.  Another sign that his lungs are not functioning well.  It made me so sad for him.  As I left this evening I just felt so burdened for my son and his suffering...wondering how much longer his life will be here on earth.

Photos from the day:
Listening to your heart during care time
 
 
 
Getting weighed at care time


Are you sleeping???


Nope you're wide awake!!!



Sunday, September 22, 2013

Baby cries

The NICU is a pretty quiet place.  Most of the sounds that you hear are beeps and alarms from desats, bradys, IVs, ventilators, and isolettes.  They each have a different tone and I have learned all of the alarm sounds.  Every once in a while you will hear another sound...a baby crying.  Joshua is intubated so he is unable to use his vocal chords, but I wonder - will I ever get to hear my baby cry?  He did not come out of my womb crying.  He had a very rough start - he came out grimacing Dr. Shepherd said, and it took the doctors a while to resuscitate and get his heart rate up. 

I long for the day that I get to hear that beautiful crying sound.  A sound I took for granted with my other kids.  Lactation consultants think listening to a baby cry will help me with my pumping.  NO WAY I scream in my head - I don't want to hear other babies cry!  I only let-down to my baby crying!  Mine has never cried, maybe never will...how does that help, it only makes me sad.  I pray that one day I will get to hear that beautiful sound from Joshua.



Saturday, September 21, 2013

A new kangaroo record!

Mommy held you for over 3 1/2 hours today!  It was a new record!  At the end of your kangaroo time you were desatting a lot though so it felt good to put you back.  During the transition to put you back they had to "bag" you.  They had to unhook the vent and give you breaths manually with a balloon thing.  It was a little scary, but Lisa the nurse said since it was because of the transition we shouldn't be too worried about it.  I hope not!

No photos from today :(  and that was my fault.  Too many people coming in and out and then I didn't want to disturb you with your desatting.  You just needed to rest. 
Peggy Nordman from church visited.

Friday, September 20, 2013

I miss you

Daddy got to visit Joshua for a bit and hold him today, but I didn't get time to go in.  I miss you, Joshua.  I wish I could have seen you today.  This coming week is going to be another hard week with no one in town to help with the kids.  And we'll have to make sure we're over our bug before we ask anyone to help us out.  Joe is still doing half days in the office. 

Today you started 2mL feeds and you've done well with them so far.  When they go to suck out the contents of your stomach before each feed, you have digested it all and there is no residual!  Keep it up little boy!  You've had a stool too!  Great job!

This is the first day of your life that we did not get any photos either.  Mommy is disappointed.

Thursday, September 19, 2013

A mother's intuition

Snuggle time with Daddy!

Again, a mothers intuition seems to know what needed to be done a couple days before it actually happened.  Joshua had been having a lot of desats.  A Desat is where his oxygen level goes too low for some reason - breathing or stress related and alarms go off.  If he gets it up on his own quickly then it isn't a big deal, but these were many seconds long and quite frequent.  Yesterday they upped the pressure on his vent which seemed to help and the desats were much less frequent.  However they started up again when Joe was kangarooing.  Stable O2 levels are usually a benefit of holding micro-preemies, but not today.  Finally, after an hour of holding him with many alarms going off Joe had had enough.  The nurse speculated that it could be caused by the "play" (space & movement) in his neobar (the bar across his mouth holding his respirator tube in place)  She had a respiratory therapist come in and change it out...guess what...he was MUCH better after that.  Thank you nurse Laura for noticing this!  Two days ago I mentioned that the bar didn't look right to me...I didn't know how it would/could effect him, but I knew it wasn't placed properly since the reintubation.  I thought it looked too far from his mouth, too much movement in and out as well as bendy across his cheeks.  That nurse told me that play is fine and won't effect him.  Seems she was wrong and I was right.

Other than that it was a calm day.  He is back on milk feeds as of last night.  They had to stop one feed because there saw old blood in his stomach.  They suck out the contents of his stomach before each feeding to see how things are digesting.  Since the blood was not there at the next feed time they restarted feeds.  They speculate the old blood is either from irritation of the stomach lining from the feed tube or from injury when he was reintubated and possibly swallowed some blood. 

Other tests from Tuesday are still fine.  He'll be treated for the yeast they found in his urine.  The 17-hydroxyprogesterone came back slightly lower so that is less of a concern although they are still going to check with endocrine Drs and follow-up later.


Peek-a-boo!
 
 
Daddy wanted a photo of your super hairy back!

Wednesday, September 18, 2013

A much better day

After yesterday, it seemed like things were looking pretty grim if the doctor was right...but praise the Lord the doctor (so far) was not right...Mommy was.  With Joshua's lungs holding on to fluid they have been restricting his fluids and giving him a diuretic.  I expressed my concerns on Monday night that Joshua was getting dehydrated.  The NNP did not listen, she said the diuretic only took the extra fluid from the lungs and he would not get overall dehydrated.  I felt strongly about my gut feeling and pushed the point again and again...the NNP still denied it and even beaded up in sweat because I was pushing the point.  I felt proud of myself for not backing down as I often do.  Unfortunately, she still did not listen.  Sometime in the middle of the night they got concerned because Joshua was not putting out urine. 

When I came in Tuesday morning, the doctors were in the middle of ordering ultrasounds, tests, antibiotics, steroids, and other cultures for Joshua.  They had inserted a catheter in him.  They thought his kidneys had something majorly wrong with them because of his PDA.  I felt like a deer in headlights when I walked in to find all of these things happening to my son.  The doctor on call started talking about a PDA ligation (which other doctors speak of as last resort WAY down the road)  This doctor told me he could possibly have the surgery tomorrow!??!?!?!  WHAT?!?!?!  Things just spiraled fast, but I was thinking why all these interventions if he just could be dehydrated?  In addition to all of the tests they stopped the Lasix (diuretic) and put him on increased fluid...guess what?!  He started peeing!  Thankfully as the day went on things quieted down.  Joshua continued peeing.  X-rays and ultrasounds came back normal.  Still nothing on the cultures.  I know this is all a reiteration of yesterday, but the frustration of it all is still so fresh on my mind!

With Joshua doing better, I was able to kangaroo my son again.  It had been since last Friday since I had held him because of the bug in our house and Joshua's need for rest.  Joshua did very well with his oxygen levels when he was on me.  It felt so good to hold him and snuggle...although it was a very uncomfortable snuggle for Mommy in the chair :)  We tried to do a lot of hand-containment during care time too.  Joshua needs extra love from his Mommy and Daddy after all that happened yesterday. 

 
 
 
 
 
He had to go up on his pressure with the ventilator again because of his air leak and all of the desats he's been having.  They anticipate his settings to keep going up with his lungs getting sicker and holding more fluid.

We had a LONG talk with Dr. Richter...voicing our concerns from the previous day and about the NNP not listening to my concerns on Monday night.  We felt like she finally heard us and we feel much better after being listened too.  The surgery is still in sight, in the near future with all Joshua's lung issues, but obviously she jumped way too far ahead saying it was going to be today and she apologized. 

Joshua had his follow-up brain ultrasound today.  His ventricles are slightly down in swelling, but...there is ALWAYS a but - UGH! they found a small hemorrhage in his cerebellum.  Not sure what that means down the road.  The doctor said babies can reroute their wiring so it may or may not effect him.  They will keep an eye on it though.

They started trophic milk feeds again!  So far so good in his abdomen.

Joshua is getting much bigger and stronger.  He has been trying to lift and turn his head...not good when you are on a ventilator, but we are thankful he is still strong and feisty.  He was much more like his normal self today...fighting and kicking at care times, beginning to breath over the ventilator, less swollen, less lethargic....Thank you Lord for a better day!



Tuesday, September 17, 2013

I can't find any words...

Today was an awful day. The new "worst day" since we've been here.  The concerns about Joshua's PDA, kidneys, and no urine for 8 hours caused many, many tests and procedures to be done.  They stopped all his milk feeds and gave me the impression his kidneys were failing.

My mommy intuition screamed HE's DeHYDRATED!  You cut back on fluids and give him diuretics for his PDA...what do you think will happen?!  I had questioned the nurse last night thinking that this would be the case as Joshua passed stool "plugs"  Why do you think he's plugged up?!?  duh!  And now guess what...they have to give him tons more fluids & more blood.  He's getting so bloated, but guess what, he's pee'd.  I feel like if they had just listened last night we could have avoided this mess...MODERATION people!  I know I am no doctor and there is a lot more numbers and other sides to the story, but take a look at the logical treatment before you jump so far ahead.  They say they have to start treating infections, yeast, or metabolic imbalances just in case or it may be too late, but part of me feels like this is all so unnecessary.  They should have tried fluids first. 

Look at Joshua last night in the photos he looks wrinkly, shriveled up.  I guess we'll find out more as all of the tests come back but so far they haven't found anything too concerning.  The only thing was yeast in the bladder which could possibly be from sticking the dumb catheter in him.  Of all things to find this just made me furious because that was why I had to deliver when I did.  I believe it was a resident who did not do a sterile exam and caused my infection.  That's part of the reason we're in this awful mess.

 I just held Joshua's hand when I was able to with all of the poking and prodding today; there was no kangaroo time.  He needed his rest because they kept interrupting it with ultrasounds, x-rays, IVs, arterial lines (with arm-board), blood gasses, nurse cares, NNP checks, Dr checks, etc.  Just a lot of worry and stress.  I tried to comfort him as best I could.  I love you little Joshua.  I hope tomorrow is a better day.

Comforting my tiny little boy

[Pastor Eric came to visit today]

Monday, September 16, 2013

Back on the vent

My poor tired, little boy.  His nurse today had said Joshua "was tired from his adventure yesterday"  and now that we've visited him I can see why she said that.  His ventilator settings are higher than they were before the C-pap trial and the lines on the ventilator screen show red most of the time.  Yellow is a Joshua breath and red is a ventilator breath.  So today he is letting the vent do all the work, my tiny little boy is tired and worn out. 

When we came in this afternoon Joshua was very comfy and cozy laying on his belly all tucked in.  It was good to be able to see Joshua's face again (one plus for being on the ventilator)  Evy, his nurse (and our favorite nurse so far) has taken such good care of him.  She is so gentle, attends quickly to his needs and monitor beeps, and transitions to kangaroo with Joshua are so smooth and tangle free!  Joe is kangarooing Joshua today and Joe is enjoying his nap and snuggle time as I sit and pump and create this blog. 


Nap time for the boys
 
Later today the surgeons still want to start milk feedings.  Finally the sleep interrupted nights, the hour+ pumping sessions, the pain, the frustration of it not being as easy as breast-feeding will all be worth it.  Joshua will get to taste his Mommy's milk.  He will get 1mL of milk through his OG tube in addition to his TPN (Total Parenteral Nutrition - ie IV food)  We are anxious to see how that goes with Joshua's drain being out and seeing if his intestines have healed.  We pray that the hole(s) have healed, that his bowel would function as it was created to do, to move milk along and NOT cause another perforation allowing gas to escape into his belly.

We spoke with the doctor after Joshua's heart echo today.  She said his PDA (murmur) is still moderate.  The Neoprofin medication closed it tenths of a millimeter, but nothing significant.  It is still a pretty large hole, so they will continue to monitor it and hope that with time and Lasix  (diuretics) his lungs won't hold any more fluid and that his heart will not enlarge any more in size.

Teeny Tiny boy on Daddy's Chest
 
 
 
First taste of Mommy's Milk
 


Business to attend to...

Today Joshua is 2 weeks 6 days, but he is really only a corrected age of  27wks and 4 days.  Since I've missed blogging the past 20 days of his life, I will periodically back-blog and add photos from those days to make it more thorough.  I'm a math person, very detail oriented, and want things done right...so I need to make this complete even though I'm not starting this blog on day 1.  I will attempt to make it more complete as time allows.  I'll put an asterisk on the posts that I add later*

My first post!

I've gone back and forth about writing a blog about Joshua's journey.  Finally I'm deciding to give it a try.  One worry is that I won't have enough time to update it as thoroughly as I'd like.  This blog also totally goes against my personality of being a very private person.  I want the blog to be an accurate reflection of my day to day thoughts and accounts of Joshua's day and this will be more private than I'd really like to put on the web, but for sake of having this documented later on in life, I want to give it a try.  I pray that someday we will look back on this blog and see God's hand and his faithfulness to our family.  I pray that someday Joshua will be able to read this blog for himself and understand the love that his family and others have for him...and most importantly the love God has for him.  No matter what happens to Joshua, whether the Lord sees fit to take him early to heaven, whether he spends his days incapacitated in a wheelchair, whether he has to live with some other physical or mental disability, or whether God chooses to fully heal his mind and body and allows Joshua to live a full life...no matter how difficult it may be, I will make a choice to praise my Savior and my God.  I wish I knew what the future held for our family, for Joshua.  It is so hard to wonder and wait.  I am very weary, very worn out from this journey already and we have such a long road ahead.  Thank you for praying alongside of us.  May God be glorified in our family's journey.

Sunday, September 15, 2013

*C-PAP!!!

What an exciting day it was when we learned Joshua had been extubated and was on C-PAP.  We had no idea this was even a possibility.  Dr. Luce had been wanting to get him on C-PAP since he was at Riverside, but with Joshua's belly issues we could not try it.  During rounds in the morning the surgeons gave Dr. Luce a choice...milk feeds or change to C-PAP.  She chose C-PAP.  When we called in for the update and heard the news I wanted to get in to see my little boy asap.  I was curious and scared to see what he would look like with the C-PAP mask.  But with all that was going on in our house over the weekend I wasn't sure we'd be able.  I'm so glad Mom Rum was able to come in early to allow Joe and I to see our little boy - together. 
 
First they tried bubble C-PAP, but then had to move him to SiPAP because too much air was being lost through his nostrils.  Big Nostrils like his Daddy?  The mask fit him better and Joshua was doing really well breathing all on his own when we saw him at 10:30pm.  The NNP was in the room when we visited and was very enthusiastic about his progress and explained to us all the new monitors and procedures.  But then we got a call from the NNP at 2:30am saying that Joshua's CO2 level was too high and they had to reintubate him.  I cried, felt devastated.  I know babies go back and forth, but I so desperately needed good news, especially after the weekend that we had had.  Everything seems to be falling apart around us.  But we'll have to wait longer to see this masked little boy.  Hopefully next time he'll be strong enough to make the switch for good.