Friday, May 4, 2012

God Delivers!

Well, it's been a long time since I've updated and a lot has happened.  I'll just do an over-all general update of what's happened since December and then for anybody that's interested I will give the whole birth story which may be graphic for some readers (but in my opinion rather comical).

Shortly after finding out I was pregnant I started feeling ill, but an icky kind of ill that was different from the morning sickness.  I decided to check my blood pressure at one of those kiosks at Meijer and about jumped out of the seat!  It was off the charts and shocked me b/c I had checked it a month or so before and it had been a little high but nowhere near these numbers.  I checked it at Walmart the next day and it was just as high so I knew I needed to find out what to do.  I was seen and treated and put on medication for it and all was good for a few months.  Because of the blood pressure I was scheduled for bi-weekly appointments and was referred to a specialist in Grand Rapids just in case the pregnancy turned high risk. 

We went for an appointment in Grand Rapids in November and Ben was ranked in the 50th percentile based on the ultrasound measurements.  Since everything looked good we were told to come back in 6 weeks.  Fast forward to December 21st, another appointment, everything looks good, 6 more weeks.  So, when we went down January 31st we figured everything would be good and it'd be another 6 weeks but not the case.  Based on the measurements from the ultrasound, growth had slowed and I believe Ben was now in the 14th percentile.  The issue wasn't that he had stopped growing, it's that his growth rate had slowed and they wanted to keep an eye on it.  This was 29 weeks and we were told that at 32 weeks we were to start with Non-Stress Tests(NST) and weekly appointments with the OB and to schedule another appointment for a growth ultrasound 3 weeks later, which was February 21st. 

On February 20th I had my first Non-Stress Test.  Ben wasn't reacting how they wanted him to when stimulated and his heart rate would jump up, but they wanted it to stay up for a certain number of seconds and it didn't do that.  So they did what they call a Bio-Physical Profile (BPP).  It is an ultra-sound that lasts for 1/2hour and in that 1/2 the stenogropher is looking for the baby to do a number of things and each is rated 2 points.  10 points is a perfect score.  They are looking for movements, tone of movements, frequency, if they are breathing (diaphram working), heart rate.  Ben passed.  He was actually super active after the BPP, all the way until 3am.

The next day we went to GR and expected a good report but were shocked to find out that the doctor felt that his growth rate had dropped even more and she was afraid that it was going to fall off the charts.  We didn't believe her, we were confused, angry, frustrated and it showed.  We had pretty much decided that we were not going to deal with GR anymore.  We were going to go for the scheduled growth ultrasound at Carson and if that turned out well then we would cancel the next GR appointment. 

What the GR doctor was concerned about, is that with high blood pressure throughout pregnancy, not only could the blood flow to the fetus slow (causing him to not get as much nourishment) but the placenta could give out altogether and eventually separate from the uteris prematurely.    The GR doctor suggested that I get a 2 series steroid shot that would help all the organs, especially the lungs develop quickly in the event that he had to be delivered early.  I asked if there was any negative side effects for the baby even if he was carried to term.  She said there were none.  I am glad that I decided to do it!  I went Wednesday for the first shot and got the 2nd when I had a NST at Carson City.

My 2nd NST was scheduled for Thursday.  Again he was not reacting how they wanted and they scheduled a BPP.  He did not do as well and we were told to go directly to GR for fetal monitoring.  We went and figured we would be home later that day. 


We got to Spectum Health around 10am on Thursday February 23rd.  They got me all checked in and started running tests.  All the tests came back well.

Monday, March 5, 2012

Wow! So many updates

I miss updates for one day and everything changes.  First I'm going to try to remember all the updates for yesterday, then I'll post the updates for today.

So, I called in yesterday early morning before we went the the hospital and found out that Ben's Biliruben levels had jumped (they had gone from 8.5 to 10.5 the day before) from 10.5 to 12.6.  Having a buildup of biliruben in the blood affects the liver and causes a yellowing of the skin.  Left untreated it can cross over from the blood stream into the brain and cause long term damage (levels are usually in the mid to upper 20's for this to happen).  UV light breaks up the biliruben and it exits the body through waste (liquid or solid).  When he is under the UV light we can't hold him and he has to have a shield on his eyes all day that is pretty uncomfortable for him.

Ben had an IV in his foot and also had to have a lot of blood taken for a renal panel so they ended up also starting an IV in his left arm to get enough blood.  They wanted to leave it open so that they had one when the IV in his foot went bad.  (his IV's go bad often b/c the TPN and Lipids - the nutrients and fats he gets through his IV- are hard on his veins).  Both IV's ended up going bad around the same time so they had to start an IV in his head.  The blood vessels in the head are close to the surface so it makes for a good place for an IV, but it was very rough on Ben.  It was taped down well but he kept trying to scootch himself around in his isolette to try and rub it off.

I think this was the day that they started Ben on his blood pressure medication.  It has been running high since birth.  He gets a dose every 6 hours if the mean of his top and bottom number is 75 or greater. 

Ben did start on bottle feedings at his 2am.  He took 10 of the 15ml.  He did very well for his first bottle feed.  The rest is fed through his gavage (the tube that runs through his nose down to his stomach).  Bottle feeds really wear him out and he ends up sleeping for hours afterwards.  I was able to bottle feed him at 2pm.  He took 5ml ( I don't have the skill that the nurses do yet and feeding/burping a preemie is VASTLY different than a full term baby).  While I was feeding, Ben looked up at Jamie and I and smiled.  The nurse said it was just gas but he didn't burp or anything.  Then a few more minutes he did it about 3 more times and seemed to kind of chuckle.  When the nurse checked to see if there was air in his tummy there was none.  We are claiming that as his first smile.  Wish we had the camera out!!  I think that's all for March 4th.

Now today's updates.  We got to the hospital around 7am and found out that Ben's biliruben count had dropped to 8.9.  It has to be 8.5 or less for the light to come off.  The night shift nurse said that he had a really good poopy diaper (he hadn't had one in 2 days) and then had a small one later on.  This could account for the drastic drop in the biliruben.  At his 8am feed/change Jamie bottle fed him and did really well.  I was changing the diaper and put the clean one under the dirty, then opened and pulled the dirty one out.  I looked away to grap a wipe and looked back and there was a spot of poop in it.  I was so confused b/c I was sure that I had put the clean one down.  Then Jamie said that he was going to the bathroom.  I was so confused then I realized that he said he was still going to the bathroom, he was peeing up the side of the isolette, all over Jamie's hand and almost onto his bedding.  It was hilarious.  The nurse had to help us clean it up b/c I didn't really know where to start.  Lesson for today, work quickly, cover quickly.

Then we went to grab breakfast and went back to Ben's room.  The doctor's came through for their rounds.  The resident was giving her assessment and said that even though blood tests are usually only done at 2am that she was considering taking blood in the afternoon to see if Ben's Bili level was low enough to discontinue photo-therepy.  The senior doctor said that since his level was 8.9 and he had had 3 bowel movements that further blood tests were not needed and the light was turned off...yay!!!

Towards the end of the day I was sitting by Ben's isolette and he turned onto the arm where his IV was while he was sleeping.  It was so cute.  But about 10 minutes later I notice his arm was all puffy.  I touched his hand and it was cold.  I called the nurse over and she said that they IV had gone bad.  She paged the on-call resident and was told to discontinue the TPN starter (had been changed from TPN to TPN starter at the 5pm feed to start to transition him over to only bottle feeds) and remover the IV.  They would see how he did through the night and decide if he would need another IV or not.  If he doesn't do well he will get another IV tomorrow.  If he doesn't get an IV I think he can start wearing clothes!!

Sunday, March 4, 2012

Updates for Sunday 3/4/12

I just called and talked to the night shift nurse and there is good progress and bad progress.

First the bad, Ben was started on medication for his elevated BP on Friday night.  He was given one dose with his feeding at 8pm.  He can be given it every six hours if the mean of his BP is 75 or greater.  Up until last night he had just had the 1 dose.  He ended up needing it at 11pm and again this morning at 5am.  She said his mean at 2pm was lower, I'm just bummed that it didn't keep it lower for longer.  (we are praying in faith that Jesus will heal both his and my high blood pressure-please agree with us in faith if you are a believer in the healing power that comes through the blood of Jesus!  He is able!!)

Also, Friday his Biliruben level was 8.5 so they took the Bililight off and we were able to hold him again.  Oh that was so nice!!  We hadn't gotten to hold him since Sunday.  Well, Saturday it jumped to 10.5 but they didn't put the light back on, and today it was 12.6 so he's back under the UV lamp.  They said that as he gets older the photo-therapy loses his effectiveness but since he is so little they are going to try it and see if they can lower it.

Thirdly, both the IV in his foot and arm went bad so they had to start one in his head :(  That pretty much sucks!!  Poor little guy :'(  Really wish he didn't have to go through that.

Ok, now for the good news.

He had a poopy diaper after birth but thats the last bowel movement he's had without a suppository.  The nurse said he had a HUGE one last night.  That may help with the Bilirueben level.  That could also help with the BP if he was feeling uncomforatable with all that stuff in there.

Second, he is tolerating his feedings really well.  There is pretty much nothing left in his tummy before his next feeding which is really good.  They upped his feeds to 15ml every 3 hours yesterday and they will be upping his caloric intake today.

Thirdly, he his the 1 week old mark yesterday at 1:32pm and he hits 34 weeks gestation today which puts him into a new bracket as far as development expectations go.

Lastly, the nurse started to try feedings with a bottle last night and she said he did really well.  He took in 10 of the 15ml and then they give the rest through the feeding tube.

The way I see it, the developmental progress outweighs the medical set-backs.  The medical set-backs are not going to effect his growth and development and we have plenty of time before discharge for them to be resolved.

Remember, please pray that Jesus heals both Ben's and my blood pressure issues, I would like us both to be medicine free by the time he is released!!  Jesus IS able and when He does we will be sure to give him all the praise and glory for it.  By Jesus blood, in His name :)

For ladies only

I will be writing about some pumping issues so just be fore-warned.

Sometimes I put on a front and make it seem like everything is chocolate sundeas and cherry pie.  This post is for the sake of complete honesty.  I had a complete and utter emotional break-down the other night.  I am trying to get this pumping thing down and it is not easy.  I have been averaging about 4 hours of sleep per night (that's all I get for the whole day).  I think a lot of people think b/c our baby is in the NICU and we don't have him here with us that we are getting all sorts of sleep, and watching TV and relaxing.  SO NOT THE CASE.  We are trying to be at the hospital as much as possible to be able to as much as the care as we can for Ben.  We try and get there around 9am to be in there when the doctors do their rounds (you get a whole lot of information at once, test results, what has happened over the last 24 hours what it means, what the plan of action is for the next 24 hours and you have the opportunity to ask question - of course we ask the nurses questions all day long).  We don't end up leaving most days until 10pm and we may be there as long as 11:30pm.  During that time we try to be at his isolette for his diaper changes that are every 3 hours (2, 5, 8, and 11 around the clock).  We do what we can (temperature, diaper, clean up) and help the nurses as much as we can with what they have to do (keep him calm while they take BP, blood, weight, measurements, change bedding).  Then I have to pump every 3 hours and we usually grab something to eat, drink, and if we have visitors bring them up and visit in between.  I would imagine when a new Mom comes home with their baby they can nap when the baby naps (which right now Ben sleeps a lot).  They are probably able to get laundry, dishes, meals done, thank you cards written, journaling/blogging/facebook all while being their with the baby.  We haven't been able to do that (however I did just ask if I can work on thank you cards and his NICU journal back there and the nurse said it was ok so that will help with the time issue).  Once we get back to the room that is when I catch up on the blog, thank you cards, e-mails, any FB messages that I haven't gotten a chance to respond to plus we have to find time to get laudry done between 9am-9pm when we are not usually here during those hours.  I have to stay up late enough to pump before I go to sleep and then as soon as I wake up which is usually 4 hours later I have to pump again.  Then shower and get dressed, eat something so I can take my medicine, make the bed/clean up the room, get pump supplies ready to go to the hospital and pump again before we leave.  It is a very tiring day. 

Everything built up to Friday night.  We got back just before midnight and I was so tired!!!  I tried to pump and could not get anything.  Up until that point I was just pumping when I got a chance and if we had company pump after they left etc.  I started at 12:30 am and was attached until 1:30 am and had less that 10ml.  I felt so defeated.  I started bawling and Jamie woke up.  I sat there messing with the settings, switched out the pump, checked all the connections, checked the tubing, changed parts for another hour until 2:30am and then really got upset.  I felt like a loser, like every other mother in the world could get this down except me.  Poor Jamie, it was not pretty, to the point of throwing the shields our of pure frustration.  Eventually he got me calmed down and when I laid down he said I was out in less than 30 seconds.

In the morning once I was more calm I tried again.  I sat there for about 10 minutes (you see, where most Mom's have their baby right there to latch on or cry or do something to help the supply, I can only close my eyes and think about him or look at a picture and it's just not the same-especially since up to that point we had only gotten to hold him for a total of 1 1/2 hrs and that was on the sunday before).  Well, in the morning I tried again, sat there for 15 minutes and had just a little bit and then thought of a few different ways to position the guards and turn it just right and viola!  a stream.  10 minutes later and I was done, still only 30ml but I'll take it, to have in 25 minutes a little more than I usually get in 45 and end up giving up in frustration.  I'll take it.  It's been pretty good since then, still averaging 30ml every 3 hours but I feel like I'm starting to get the hang of this thing.  And it really makes me feel good to be able to supply all the milk for his feedings and now be able to bring it in consistently.

Don't know if this post has made much sense or not.  I'm pretty tired.

Saturday, March 3, 2012

Update on Ben's progress

It's hard to believe in 13 1/2 hours Ben will be 1 week old!!  This week has absolutely FLOWN by!!  I sure hope time slows down when we get home. 

We were pretty frazzled at the beginning of the week, trying to get everything done that needed to get done and forgetting a lot along the way.  We are finally starting to settle into a routine.  We usually get up and around and try to make it to the hospital around 9:15am.  We try to get there before the NICU doctors do their rounds.  If you catch them during rounds you can get a brief summary of what has happened in the past 24 hours, what it means, and what the plan is from there.  Then Jamie stays at the isolette with Ben while I go to the Mother's Lounge (ie: extract liquid sustanance).  I try and get back by 11am when Ben has his diaper change, feeding (through the gavage - tube down to his stomach), temperature and BP.  We stick around until he falls asleep (or after these times is when we can hold him) and then go get breakfast if we didn't already.  After that we usually go back to the isolette in case he fusses or wakes up.  We can use this time to ask question or review material in his NICU book, but most often just watch him in awe.  1pm and it's time for the Mother's lounge.  This schedule usually repeats itself every 3 hours.  We can help with most of the general duties -sooth him when he's fussy (usually when he's getting his BP done, getting blood taken, or getting tests or if his tummy hurts), change diaper, check temp, assist the nurses by lifting him up, cleaning him up, etc.  Lately we've been heading back to the RMH between 10pm and 11:30pm.  He is changed, fed etc every 3 hours around the clock (2, 5, 8, and 11).

When he was admitted to the NICU on Saturday he had and IV and was on CPAP, as well as having the electrodes for monitoring body temperature, oxygen, Respitory rate, and pulse.  On monday his biliruben levels were elevated so he had to go under the bililight (a uv light that shines on him and breaks down the biliruben in the blood so it can pass out of the body through the urine).  Monday afternoon they started gavage feedings of breastmilk (1/2 of it was donated or the first 2 feedings.  By the 3rd feeding he no longer needed the donated milk).  Monday they also switched out his CPAP machine for a different type.  Wednesday morning at 8am they removed him from the CPAP machine and as of today he is still off of it. 
Up until wednesday or thursday he was not tolerating the breast milk very well.  His little tummy wasn't ready to digest it yet.  Before they send milk down the tube, they pull up whatever is left in the tummy (goal is for 0) and examine it to see if it's green or has bile in it (both bad) or if it appears to have been in the middle of being digested.  Usually if  it's in the process of being digested they send it back down and send new stuff down with it (depending on what the resident on duty says.  By Thursday he was tolerating the breast milk alot more.
He has had a renal ultrasound, a heart echo ultrasound, and they checked his thyroid to see why his blood pressure is elevated.  All the tests have come back negative so far.  They took blood friday night to check for possible reasons.  They also started him on some BP medicine to be administered once every 6 hours if the mean of the 2 numbers is greater than 70 I believe. 
They have moved his IV a few times because the vein ends up closing up so the nutrients can get through.  They also gave him a longer gavage and put it through the nose so he can suck on a pacifier while the food goes down, getting him ready to learn how to feed from a nipple.
Friday morning his biliruben numbers were lower so they took the bililight off.  Now we can hold him more oten.

So, by the end of week 1 he is off the CPAP, tolerating breast milk so they can back off the IV, has had a few bowel movemants (only 1 without the assistance of a suppository.  He still has to get the rest of the merconium out.  As more of that comes out it makes it so that he can tolerate breastmilk more).  His weight has fluctuated but as of Friday night he was 2 oz less than his birthweight.

Wednesday, February 29, 2012

Learning to Trust

I have a few thoughts that have been prevalent in my mind the past few days and hopefully I'll be able to convey what I'm thinking/feeling.  I woke up with the hymn "Learning to Lean" going through my head, I think my theme song would more adequately be Learning to Trust.

You would think that throughout the 6 1/2 years of waiting for Ben, and then in God's perfect time we get him, you would think that would be where the trust lesson would end, but oh no!  When you see the post of the birth story you may see the overwhelming lesson of God's perfect timing but here I hope you see a testamony of his perfect provision.

Jamie started working on his GED in 2010.  He passed 4 out of the 5 tests the first time around and the 5th test he passed on the 4th try.  His persistance and determination and things that I could see under the surface since I met him but he never knew he had until Jesus started working it out of him.  I sort of assumed that as soon as he completed it in Janary that bingo bango, the perfect job would open up just in time for Ben to be born.  And as the days passed by in January and turned into weeks of nothing turning up I started to get stressed and insisted that I was trusting the Lord to provide.  Which I think to the best of my ability I was, but that's where it ended, my ability (and let's be honest, I'm human, that's not much).  Maybe that's part of the reason that my blood pressure kept rising, although ultimately I believe it all worked and is working together as part of our Master's plan to bring forth our child at the perfect time for a specific reason and purpose.

Sadly, there are very few times when I can say that God has totally and utterly amazed me, mostly because I rely too much on what I can do and don't often give him the opportunity to show his divine provision.  I can honestly say that I am thankful that Jamie does not have a job, not that he is not willing to work, we have really been beating down doors trying to find something and I hate feeling like I'm "working the system" because I am on Medicaid, even though I have been working since I turned 18 and this is my first real break in employment.  I believe that Medicaid is part of God's provision to us and in the next section I am going to list out some of the blessings that we recieved yesterday and what system God used to provide it.  (and trust me, if you could see the confliction going through my mind when I say that God is using a government funded program to provide for us you would chuckle, I am SO anti-big government!!)

When we got released from the hospital on Monday there were a few things that were top priority, get to DHS to pick up an application for assistance since right now our income is $0; get out the breast pump and make sure it works; pick up laudry detergent.
We got #1 and #3 done and got home after 5pm and got the pump out and thought the attachments weren't going to work.  I messaged the breast feeding advocate at the WIC office and she messaged me right back even though it was after hours and told me to come right down and she would help me.  It was such a simple fix but I wouldn't have thought to do it but she advised me to look into renting a hospital grade pump that would make the process a bit simpler.  I went home and the next day as we were packing up, I was looking for the attachments that she removed that I would need to pump at the NICU and I could only find one.  A dear friend called (who is a fountain of useful information) and suggested that I ask at the desk because they may have spare parts.  So I did and the receptionist said she would check with the lactation specialist.  The lactation specialist found me and we got to talking and to make a long story short, not only did she give me the replacement parts, but she contacted my insurance and arrainged for the rental of a hospital grade pump, free to me (and let me tell you the difference!!!!). 
About 10 minutes later one of the NICU social workers came down to introduce herself to us and we got to talking and I made a comment about how we thankful to be able to be down there so much because Jamie is out of work right now and obviously so am I.  She asked about lodging and meals and we said that we were on the waiting list for the Ronald McDonald house and had packed enough for 5 days just in case but had asked if they have an open room at the end of the day just for 1 night that we would take it, we would hate to see a room go to waste and would be very thankful for even 1 night not to have to commute.  Again, to make a long story short, she came back a little while later and said she had made a call to the RMH and there was one person on the list in front of us and if they had an openning they would call by 4pm.  She had contacted our the insurance and they would pay the suggested contribution price.  Also, the insurance would provide meal reimbursement and she left us 4 vouchers good for up to $5 and said we would be getting a card that we could swipe.  We had left the house with about $50 and had emptied our pantry of anything we could eat on the go.  We figured we would buy 1 meal and eat from the snacks in the car for 1 meal and if we didn't end up with a place to stay then we would eat the 3rd meal at home.

My Aunt and Uncle who live not too far away stopped by to meet Ben and said if we needed to get away for a bit or a home-cooked meal, or a bed for the night to call them so before they left since it was after 4pm and we hadn't heard from RMH we took them up on that offer.  After they left I looked at my phone to check the time and saw that I had missed a call from RMH so called them back and they had a room for us for the night.  We decided that we should take it and felt like a flake for cancelling on my Aunt and Uncle but explained that we would like it as a rain check for another night when we didn't have other accomodations (it is EXTREMELY hard for me to be dependant on others, like one of the hardest things ever, it makes me feel vulnerable and like I owe a debt I can't pay- hard to explain). 

Dad came down because his schedule openned up suddenly and treated us to dinner.  I got a kick out of watching him watch Ben.  Thats the same thing we do, we can just stand there for an hour watching him in amazement and not get the slightest bit bored!  Then of course when he left he gave us money (Thank you Dad) and we were so thankful because we were down to $20 and weren't certain when we would be home again to get more since we are taking in on a day by day basis. 

We ended up leaving for the night when Dad left since we had to check into the RMH by 8:30pm.  There was a lady in front of us to check in and then our turn.  We were filling out the papers and she started going over the procedures and she said something about at the end of the 5 days.  Jamie and I both stopped her and said, what do you mean, we are only here for the night aren't we?  She looked at us kind of weird and said no, we have you here for 5 days.  Our jaws just dropped.  Thank you Jesus, 5 days that we know that from sun-up to sun-down and anytime in between we will be able to be near Ben.  Not only that, as residents of the RMH you have access to laundry facilities (they provide the soap), a community pantry and fridge, utensils and what not, you have a spot in the fridge and pantry for any items you bring, a vending machine with $.25 cans of pop, passes to area attractions to get out and relieve stress (which we won't be utilizing but think is a great thing for families here with kids who are staying long term-30 days), a pool table, treadmill, soap and other H&BA neccessities if you need them, a shuttle service to and from the hospital and so much more.  What a blessing and load off for families who have loved ones who need extended care.  It is so much more than we ever could have expected or ever would have asked for.  All we asked for was a bed and shower taking it one day at a time.

That's not even getting into all the people who have offered and given us clothes, gifts, support, encouragement, prayer, visits and phone calls and so much more over the past few days.  Including my sister who unfortunately due to health problems is unable to pump anymore has offered her brand new breast pump for us to use after Ben's out of the NICU until we are done having children, and anything else baby related that we may need that Garrett is done with.

A few months ago, we took about 1/2 of what we had in our savings account and made an offering to the Lord in faith.  Jamie and I were both in agreement on the amount and what we were believing for.  We both believed or provision, thinking that it would be a good job.  Now we are truely learning how the Lord responds to faith and action in anwer to prayers with provision.

Tuesday, February 28, 2012

Not So Normal Motherhood

It seems sometimes that nothing in my life ever follows the norm, and that's ok.

I always imagined when I had a baby that there would be a big adjustment and imagined bringing him home from the hospital the same day that I went home, but having Ben 7 weeks early, that's just not how it works.  I never thought leaving without him would be so hard.  I didn't think I'd cry, and I really didn't think I'd wake up in the middle of the night missing him, when I've only gotten to hold him twice.  I am so thankful to have such a healthy baby.  I've met so many parents already at the hospital who have had babys so much earlier and who aren't doing as well as Ben.  I am so thankul that God's timing is perfect.  Ben was born at the perfect time, for a specific reason and purpose and I can't wait to see him grow into it.

Right now we know that he is receiving the best care in the world, and even though we can't be there with him right now, we are doing the best we can while we are not there to give him the best!  We've been trying to learn how to pump but I am going to set up an appointment with a lactation consultant to make sure that I can get a good milk supply established for him.  I am thankful that Spectrum values the benefit of breast milk as much as I do.  Any that I am able to get we can drop off.  I figured that they would be able to mix it with the formula but that's not what they are doing, they mix it with donated breast milk so Ben still gets the full benefit of breast milk even though I can't provide it yet.  That makes me extremely happy!!!  I would have never thought that would be an option!!