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With Love Chartreuse Christmas 5x7 folded card

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Pics of Lenwood

My wonderful friend Michelle made Lenwood's pictures mid October at 3 months old.  You may view them at 

http://michellesiniardphotography.com

Click on CLIENT PROOF

User name is Kristi

Password is Lenwood

It is case sensitive so make sure the K and L are capitals!

Here's a sneak peek!

SURPRISE! LENWOOD'S HOME!

We didn't tell many people because we thought we might have to start all over again this time too, but we didn't.  We arrived at home with Lenwood yesterday - Sunday, September 19th about 1:30 pm after 63 days in the NICU.  The boys went with us to pick him up and were so thrilled to meet him.    Now their bickering isn't over toys...it's over who gets to hold or help with their brother!  :)  We are all so thrilled to have him home.  I still feel like I'm dreaming!

I'll continue to post some updates as we visit with different specialists over the next few weeks.  Thank you for all of your prayers.  I know they helped get us to our happy homecoming!    God is great!


Love and blessings to you all!

Our traditional coming home pic.  I have one like this when Conrad and Teague came home too.  Will post those later.

 

Waiting on the car

Everyone in the car!!!!!

Snoozing in the bassinet that's been in Mommy's family for 4 generations.

Conrad holding Lenwood for the first time.  He was so gentle and wanted to kiss him on his forehead, nose and cheeks!  :) 

Teague holding Lenwood for the first time!  He was pretty gentle too.  ;)

Daddy and Lenwood!

Snuggle time with Mommy!

So happy to finally have all of my boys right where they need to be...at home with me!  Thanks you for all of your love and prayers!  Praise God from whom all blessings flow!  We have definitely received our share!

Psalm 23:2-4

He makes me lie down in green pastures,

he leads me beside quiet waters,

he restores my soul.

He guides me in paths of righteousness

for his name’s sake.

Even though I walk through the valley of the shadow of death,

I will fear no evil,

for you are with me;

your rod and your staff,

they comfort me.

Long time, no update

I haven't given an update in a while.  It's been overwhelming and scary.  We were supposed to come home Friday, but that didn't happen.  Lenwood began having bradys late Wednesday.  After some investigating , they've found that he has multiple kidney stones in each kidney.  They haven't calcified yet so they think they can dissolve them and that hopefully they aren't hurting him.  The think the stones are a symptom of whatever is going on with him and they believe it's related to Teague.  Both had the ascietes (abdominal swelling) and both have low IgG immunoglobin.  They think it's too coincidental to not somehow be connected.  A pediatric nephrologist(kidney specialist) came to see him.  He is very intrigued and is currently consulting a colleague who is a nephologist, geneticist and microbiologist.  He said that she's the most brilliant person he's ever met at figuring out unusual diagnoses.  We are hopeful that we might finally have answers for Lenwood and Teague yet terrified at what those answers might be.
Lenwood has also been struggling with weight gain - too much.  He gained 28 ounces in 12 days.  They like to see them gain 3-7 ounces a week at his age.  He's on a strong diuretic and is losing a little.  His current weight is 7 lb 7 ounces.  His highest weight was 7 lb 10.6 ounces.
 Don't have any clue when we might get to bring him home.  Today (Tuesday) is his due date.  He's 40 weeks and should be ready to come home, but he's not and that's very scary to me.

Please continue to pray for us. We appreciate you all so much!

Update on our rollercoaster week!

Let's see!  We finally made it out of isolation and were doing great early this week.  The doctor started our 7 day countdown to go home because Lenwood hadn't had any brady's since the 22nd.  Yesterday, on Day 3, he started having bradys again - 4 to be exact.  Not sure why.  They'll be running some tests tomorrow to see if he's sick or might need another transfusion.

Maybe he just misses his mom.  On top of all that, I haven't been able to see him since Thursday night.  Friday morning Conrad and Teague were diagnosed with micoplasma aka walking pneumonia which is highly contagious.  Guy and I are doing a round of antibiotics to be safe.  The doctors think it best if we stay away.  I will possibly get to see Lenwood tomorrow with a mask, but they want to confirm that it's ok with the infectious disease person in the hospital when she arrives in the morning.  I miss him so much that I just don't know what to do with myself.   I've tried to stay busy and distracted all weekend, but it's been so hard.  I'm trying so hard to stay positive and focus on the fact that I will get to bring him home in time, but not seeing him is tearing at my soul.  I was barely surviving that by focusing on it being just a few more days until we could bring him home.  Then the bradys returned and well....I just can't even describe it.  I just can't.  There just are not words to describe how awful it is to not be able to touch him, hold him, and smell him  He is six weeks old today.
When you have a baby, every part of your being feels like you should be caring for your baby.  With a NICU baby, there's so much that a mother just cannot do to help her baby.  The one thing I've been able to do is be there with Lenwood even during the first weeks when I couldn't hold him or hardly touch him,  I could be there and talk and sing to him.  What do I do know?  I still pray.  I still pump milk and deliver it to the NICU door (heart wrenching to go and have to walk away).  Mostly, I just ache for him.

Let's see...I know this isn't my usual positive post, but I just wanted to be honest and not try to sugarcoat it.  It stinks and I'm so sad, but I'm going to end with something positive and try to remember this:  He will come home.  I will hold him again.  I will kiss his face again.  I will smell his sweet skin again.  I am so blessed because he is growing and breathing and one day this will all be a faint memory and happiness will fill our home as the laughter of three boys floats through the air.  I am blessed.  Thank you, God, thank you.    'For I know the plans I have for you,' declares the Lord. 'Plans to not harm you but to prosper you. Plans to give you hope and a future.' Jeremiah 29:11

The Day of FIVE

So, today Lenwood is FIVE weeks old and his weight is FIVE pounds!  He's also got IV number FIVE put in for his ten day round of antibiotics.  He doesn't have five IVs in all at once.  They  keep getting to where they are not working and they have to remove one and put in another.  He's had one in his head, one in both hands and one in both feet.  He seems to be doing better.  They'll check his white count again tomorrow and if it's back in normal range we'll likely get to at least get rid of the gown.  Might keep the mask and/or gloves a few days.

He's up to 60cc feedings every 4 hours and seems to be tolerating this well.  They are also stopping his caffeine.  He's only been having one brady every couple days since the reflux was addressed and he received the transfusion, both on Thursday.  It's possible he'll have more once he comes off the caffeine, but maybe not.

Thank you for the prayers!  They are working.  Please keep them going.  He still needs them.  We aren't at the end of our NICU journey just yet, but hopefully we are getting closer.

Isolation

Update: Aug 20th

Just got some positive news from the nurse: The part of his white count that was dropping has doubled since yesterday. Yeah! Not sure if this gets the count back in the normal range or if it's still low, but I'll find out when I visit at 4pm. I was so excited that I forgot to ask.

August 20th

Promise I'll get some complete updates in here soon, but right now these quick updates are the best I can do.    Our visit to Lenwood last night was really difficult.  It was heart breaking to have to suit up from head to toe to touch your child.  He was not acting well either.  He wouldn't take his bottle and then spit up more than he'd drank.  They felt it was just that he was worn out from all the extra activities (tests, moving rooms/beds, getting transfusion, etc.), but it still worries a  mom sick.    They decided to feed him by tube during the night to let him rest.  When I called at midnight he had perked up and  was so alert that his nurse decided to give him his bottle.  He did great with it.  I've talked to them several times since and he's continued to do well with his bottle and hasn't had any bradys.  Continued prayers that diagnosing and treating the reflux in combination with getting the blood transfusion will give him the strength he needs to get over whatever he has and get well enough to come home.  It gets harder everyday not to have him here.
Today is Mommy Day with Conrad and Teague so we're off to try to have some fun.  My heart is elsewhere today, but I'm trying.  I love and adore these three boys so much and it's killing me to have them separated.  We are so ready to have our family together.  I know it's in God's hands and I trust him to do what is needed for everyone in our family, but some days it hurts more than others.  The last few days have been those kind of days.  However, I am thankful that Lenwood got sick before he came home and not after.  he is in wonderfully capable hands there and I know they will, with God's guidance, heal him and make him strong to have a full, healthy life when he comes home.

Another update

Please continue praying for Lenwood.  He's receiving a transfusion as we speak (his third) and has been moved to an isolation room due to his white count continuing to rise and drop, rise and drop.  It's been low the last few days.  They'll be testing his immune system tomorrow.

Update

Lenwood has grade 3 reflux (4 is the worst).  His hematocrit is getting lower (29) so he may need a transfusion today or in the next few days.  They haven't mad rounds yet so i don't know what they'll say.  It's been a busy day in the NICU.  Pray for them too!  They are wonderful!

Prayers needed today!

Lenwood is having his upper GI this morning(10:30) which is the reflux test.  He has been consistently having bradys (heart rate drops) during and after feedings which is consistent with reflux,  In the last 12 hours they've gotten much worse.  When I was there for a little over an hour last night he had 4 bradys one of which I had to pat him to get it back up.  I spoke to the nurse this morning and he continued to do that through the night during and after his feedings.  Other times he slept and was fine.  She did say that he was starting to scare her (not sure what she means by that), but she went and told the practitioner about it.  They are going to see what the results of the upper GI are and go from there.  Please pray for him today.  Pray for the drs, specialists,  and nurses to find the answers needed to help him thrive and be stronger.
Yesterday we received news that Lenwood's second state screening came back with a marker for Cystic Fibrosis.  This does not mean that he has it, but it means he might which would be very bad...life altering bad.  However, his first state screen came back negative for CF.  So this test that indicates the CF marker could be a false positive, could be influenced by blood he received during one of his transfusions, or he could just be a carrier.  CF is one of those things that you have to receive a gene from mother and father to have it.  If he just has one gene he's a carrier, but has no symptoms.  This will affect him when he is an adult if he marries someone who's also a carrier.  This also means Conrad or Teague might have it or be carriers.  When they were born, CF was not including in the state screening yet.  They sent a DNA test yesterday that gives more information, but isn't definitive.  It takes two weeks to get back.  The definitive test can't be done until Lenwood is 3 months old.  I don't understand why we can't go ahead and test to see if Guy and I are carriers in the meantime, but for some reason that isn't the appropriate course of action.  Please pray for us as we wait in limbo for these results that will affect our entire family.  We feel very hopeful that the result was a mistake(and so do the doctors) or at the most he's a carrier, but we are still terrified at what might be.
Thank you so much for continuing to send prayers for us up to God.  I know he's listening and holding Lenwood close during his fight to get stronger and come home.

Day 30 - August 16th

35 weeks 6 days
Weight 4 lb 9.5 oz

Only two bradys so far today.  Looking better and acting better.   They will look at his white count again tomorrow and if everything looks good tomorrow will be his last day on antibiotics.  So far his cultures haven't grown anything for them to identify.  I'll be SO glad when he gets this IV out of his head.

I've had several snuggle times today and given him his bottle twice.  He's done well with both feedings.

I am hopeful that once he gets over this infection we can begin trotting along down the road to discharge again.  Since discovering the infection, the practitioner and nurses think that his temperature drop in the crib and his trouble with bottles was due to the infection.  Tiny babies tend to have a drop in temp when sick instead of a rise.  As for the bottles, his body was working so hard to fight off the infection that it didn't have enough energy left to work to drink his milk every three hours.  Hopefully that means when he's well, this won't be such hard work.  The nurses have given him bottles at almost all feeding today.  he's been awake ad fussing for his food and the bottle seemed to appease him more at each feeding so that's what they did.

I was able to give him a bath tonight.  That was fun.  It's not really a bath.  I basically wash him with a washcloth as he lays on the scale.  After his bath I fed him and held him for a while.  It was really nice.

His weight is up at bath time tonight to 4 lb 9.5 ounces.  Can't believe he'll be 36 weeks tomorrow.

Day 29 - August 15th

FOUR WEEKS OLD TODAY

So, I guess I do have a decent mother's intuition.  It appears that Lenwood has a slight left shift in his white blood cells.  This means he has a slight infection.  They are starting him on two antibiotics for three days.  Poor guy...They tried both hands and both feet and couldn't get the IV started so he has one in his head.   They say it's the best place for one, but it looks so awful.

If his blood cultures grow something, then they can identify the infection and treat it with a specific antibiotic, but they are starting with these broad spectrum antibiotics in the meantime.  He's had 6 bradys today, but does look a tad better than last night.

Also, his chromosome study is back and everything is NORMAL!  Great news!

Day 28 - August 14th

35 weeks 4 days
Weight - 4 lbs 6.6 oz - down 20 grams

When I called this morning, Lenwood's nurse told me that he had an eventful night.  He was having bradys (heart rate drops) and d-sats (oxygen drops) during his feeding.  They think he's just having to work too hard and have gone back to bottles at every other feeding.
When I arrived, I talked with the practitioner.  They think that we just pushed him too hard, but if he keeps having bradys and d-sats they'll do a blood culture to check for infection.

I fed him a bottle at 12:40 and he had several d-sats and one brady.

This evening as I was holding him he kept dropping his oxygen.  Typically it drops and comes back up, but it would drop and stay down.  He had 9 bradys today.  Typically he has one or two a day or every other day.  This is out of character.  I expressed my concern and after his continuous oxygen drops, the practitioner agreed to do the blood culture.  I watched them draw blood from his hand and his heel.  He let out one tiny, short whimper.  That's not like him.  Something is going on.

Day 27 - August 13th

35 weeks 3 days
Weight 4 lb 7.4 oz - up 45 grams

Morning - Big day!  He's going to get a bottle every feeding and they are going to move him to a crib this afternoon.

Evening - Well, after only a few hours in the crib Lenwood's temperature drop to 97 degrees so he's back in the isolette.  This probably won't change when he comes home, but I'm still bummed.

Day 26 - August 12th

35 weeks 2 days

Weight:  4 lbs 6 oz - down 5 grams

I was able to give Lenwood a bottle for the first time today.  He did so well.  He drank it and gave 3 really good burps.  The last burp was REALLY LOUD.  I think they heard it in the next pod.  ;)  They are increasing his bottles to every other feeding.  Another good step.

At our visit this evening Lenwood looked great.    He got a bath and the Guy was able to give him a bottle.  He did well even when he got the hiccups.

His weight at his evening bath is up again to 4 lbs 7.4 oz.

Day 25 - August 11th

35 weeks 1 day
Weight 4 lb 6 oz - increase of 50 grams

When I arrived today Lenwood was wide awake. I help him for a while.  He watched me so intently for a long time and then fell asleep.  I rocked him as he slept a while.  As I was going to put him in his isolette to sleep and stay warm, he very clearly filled his diaper with poop.  So, I had to change him.  This, of course, woke him up.  I tried to coerce him back to sleep to no avail.  So I thought I could go to the lactation room to pump and he'd probably fall asleep if I wasn't there for him to watch,  When I returned he was still awake and his nurse said he was the whole time.  I felt so bad.  It was almost time to elave, but I asked if I could rock him and try to get him back to sleep.  He'd been awake a long time and I was afraid he was going to get too tired to do all the work he has to do.  Almost immediately when I picked him up he got still and began dozing off.   I'm so glad he knows Mommy and enjoys his Mommy time as much as I do.

They are increasing his feeding to 37 cc every 3 hours and he can take 3 bottles per day.  His nurse said he did well with his last bottle.  Yeah!

Day 24 - August 10th

35 weeks gestational age
Weight the same - 4 lb 4 oz

Lenwood's temp was right on the borderline of warm enough most of the morning, but by lunch he was too cold and needed to go back in his isolette.  That's ok though.  He has plenty of time to get big enough to stay warm before he meets all the milestones needed to come home.

They are increasing his feedings to 35 cc every 3 hours.

Day 23 - August 9th

34 weeks 6 days

Just received the most wonderful news! Lenwood has been moved to a crib and they are removing his pic line! This is BIG!  I'm away from the NICU today for Mommy Day.  When Guy and I arrived tonight we could pick Lenwood up and hold him all we wanted.  It was wonderful!

 

He's doing ok with his two bottles a day, but still needs practice

Weight:  4 lb 4 oz - increase of 25 grams

 

Day 22 - August 8th

THREE WEEKS OLD TODAY!
34 weeks 4 days

I can't believe it's been three weeks since this beautiful miracle was born.  I'm so proud of him.  He's working so hard and doing so well.
He weighs 4 lbs 3 oz.  His feedings are increasing to 30 cc today.  He's going to get to try a bottle twice a day.  He still looks great today.  He just looks and acts like he feels good.  He's tarting to look and act like a full term baby too.  I was able to watch him taking a bottle and then I got to hold him for a while.

Mommy in her happy place!  :)

Day 21 - August 7th

34 weeks 3 days

Today is Grandparent's Day, but the NICU is super full so they're limiting the Grandparent's to a short visit today.  However, both sets of Grandparents had a great visit because Lenwood looks FANTASTIC.  He looks really good today. Can't pinpoint what it is exactly, but he just looks good.  See for yourself...
 

Did you notice what's missing in those pictures? No cannula!!!
Yep. little guy is breathing on his own and doing pretty well so far.  They are trying him off his cannula again.  Hopefully this time we can stay off.  They also went up on his feeds to 28 cc every 3 hours.  He weighs 4 lbs 2 oz.

Day 20 - August 6th

34 weeks 2 days
Lenwood had a big weight gain.  He's 4 lbs 1.4 oz.  He gained 65 grams.  Some of it might be from the transfusion so if it's down a little tomorrow that's why.
I was able to see Lenwood get his bottle today.  He was taking it when I arrived.  He was actually awake today.  The nurse charted him as fair.  He did ok, but doesn't quite have the hang of it yet.
They are increasing his feedings 1cc every feeding until he reaches 26cc.  He was getting 23 cc yesterday.  He is getting enough milk now that he'll no longer be receiving lipids through his IV pic line.  Lipids are basically fat.  The nurses jokingly say, "Time for your fried chicken." 
Lenwood is still having the occasion brady (heart rate drop) and d-stat (oxygen drop).  I was hoping the transfusion would take care of that, but maybe a little more time is what he needs.
Overall he is doing wonderfully.  I am so proud of him and grateful for the answered prayers.

Day 19 - August 5th

34 weeks 2 days
Lenwood's crit is low and he needs a blood transfusion today.  That's really not too big a deal in the preemie world.  He had one soon after he was born and did well with it.  The blood given to preemies is VERY Thoroughly tested, but it is still nerve-wrecking to think that it could have something or that his body might not accept it.  So, please say a prayer this morning for Lenwood's body to accept the blood and for the blood to be healthy.  Thank you!

Added later:  Lenwood's transfusions seems to have gone well.   He was bright red after receiving 18 mL of blood.

He's still getting to try a bottle once a day.  I was able to watch today.  He tried to sleep through it, but managed to get most of it down.  He definitely has the burping part down pat.  :)  They've gone up to 23cc every 3 hours on his feedings.

I was able to hold Lenwood for about 30 minutes after his bottle.  Of course he decided to wake up after sleeping through the work of taking a bottle.  Silly guy!  :)  It was wonderful to hold him.  He's making great eye contact these days.  The neonatologist that was at his birth and on the first week  when Lenwood was so sick stopped by the bedside.  He said that Lenwood looked so wonderful and that we have amazing babies who are born sick and come through it so beautifully.  We are very blessed to have three beautiful miracles.
Most of you know that Conrad and Teague were also premature and have asked how Lenwood is doing in comparison to them.   They weren't taken via emergency c-section.  They both decided to come early.  I went into premature labor and they were unable to stop it.  Conrad was born 11 weeks early(29 weeks 2 days gestational age) and weighed 3 lbs 3 oz.  He spent 50 days in the NICU.  Teague was born 10 weeks early (30 weeks gestational age) and weighed 4 lb. 4 oz.  He also had an abdominal ascietes and was very sick in the NICU.  He spent 60 days in the NICU.  To read their full story, here's a scrapblog I created a few years ago:  http://www.scrapblog.com/viewer/viewer.aspx?sbId=189241
I was able to stay at the hospital from 9am-2pm today.  It was so WONDERFUL to have a long stretch to just sit and enjoy my boy without feeling so rushed.  Thanks you friends, grandparents, and aunts for all your help!  We are so grateful!

Day 18 - August 4th

34 weeks 1 day
Weight:  3 lbs 14 oz or   1760 grams   He gained 30 grams.
Lenwood had an ok day today.  They increased his feedings to 21 cc every 3 hours.  He's doing ok with them, but having some residual (leftover food in his tummy).  They watched this through the night and as the night went on his residual decreased to none.  I guess he just needed a chance to adjust to the increase in food.

Guy and I were able to watch Lenwood's bath tonight.    He got a little mad, but not too much.  He's awfully cute!

Lenwood on the scale at bathtime tonight.

Day 17 - August 3rd

34 weeks

3 lb 13oz

Today was Mommy Day with Conrad and Teague.  We had a fun day at McWane Center,  It was, again, bittersweet, because I missed Lenwood so.  However, I do so miss doing things with Conrad and Teague.  When we started leaving Conrad said, "Mommy, You're taking us somewhere."  It really has been a long time between the medicines that I couldn't drive while taking, bedrest, and childbirth.  These two big brothers have been through quite a lot of change lately, but they've handled it pretty well.  So proud of these two guys too!
When I called from McWane Center, another nurse answered and said that Lenwood's nurse couldn't come to the phone because she was giving him his bottle.  "WHAT?"  I thought she was mistaken, but no...Lenwood got his first bottle.  He drank 10 cc out of 15cc.  The nurse said that was really good for a first try. Go, Lenwood, Go!
When I arrived for the 4pm visitation, I had another surprise.  Lenwood has been moved to an isolette bed!  Another step in the right direction.   At our NICU, there are three steps in the bed:  open bed, isolette, crib.  All babies start out in an open bed so they can be easily accessed during their initial observation and the time when the are most sick.  As they get better and reach certain milestones they are moved to an isolette.  It's basically an enclosed plastic box with warm air in it.  It's designed to reduce stimulation and allow babies to rest and grow.  It's quieter and calmer in there.  Not as fun for the parents because the babies feel so far away, but a good step!  Yeah!  He also gets to wear clothes in the isolette.  see the pics.  He's so cute!    I can actually see his face today.  They removed the feeding tube from his mouth and placed one down his nose.  The tape that was holding the tube on his mouth was removed and and I can see his sweet lips.

Day 16 - August 2nd

33 weeks 6 days

Weight is up to 3 lb 11 oz.  Looks like the food is working well for him.  Called this morning.  He only had a couple more bradys (heart rate drops) during the night.  He  did better, but they decided to put him back on the cannula.

I enjoyed spending the day with Lenwood and not seeing all those bradys.  He seems much better.  They are increasing his feedings to 15cc every 3 hours.  Movin' on up, buddy!

He got the hiccups after his feeding.  Here's a video.  It was so cute!

Day 15 -August 1st

33 weeks 5 days   TWO WEEKS OLD TODAY!

Say an extra prayer for Lenwood tonight. He kept having brady's (heart rate drops) and d-sats (drops in breathing) during our visit. He hasn't been doing this. It 's a normal preemie thing so it could be just starting late or a sign of infection or a sign that he needs a blood transfusion.

They increased his feeding today and he's done well with that.  He had 10 cc for 3 feedings and then on up to 12 cc every 3 hours.  His food seems to be moving well through his bowel.

He weighs 3 lbs. 8.2 oz.  He gained 5 grams.  I was able to hold him for about 40 minutes this afternoon.  He was so awake and alert.  He's really focusing with his eyes now and appears to be looking at you.  Until the last couple days, when he was awake his eyes sort of rolling around a lot like he was really tired and couldn't stay awake.