Two Months Old - Happy Halloween

Makinley is two months old!  We are so ready to take our little peanut home and we feel we are getting so close.  She shocked her doctors and nurses when she took 99 calories per kilo of milk today which is awesome!  They like to see above 100 before they talk about us going home.  She now weighs 8 lbs 10 oz.  We are thankful to report that her blood pressure numbers have decreased.  YAY!  They are now around 95-100 instead of 120.  This is a huge answer to prayers.  We have even decreased the number of times we have to take her blood pressure because they feel it is becoming more stable again.  This is the weekend Makinley was supposed to be due - so hard to picture this as the newborn baby size instead of the 4 lb body size that we think of as a newborn.

Due to our fabulous nurses this weekend - we were able to snap a few Halloween pictures of Makinley unhooked from any monitors.  It was wonderful!!!  The little things can really make our day. The onesie she is wearing came from her therapist and it says "Whoooo Has Treats?"  I wonder if I give her a bucket - will nurses drop treats in it.  I am sure she would share them with her mom :)  Her official Halloween outfit was something I picked up a while ago.  A cute pumpkin sleeper(ignore the fact that it is still a little big on her.)  I was really hoping she would hurry up and eat so that we could visit Pumpkinland in Orange City this fall.  Since we aren't going to make it in time - I purchased some mini pumpkins from them instead.  We snuck them into the NICU to create some cute photo props.  Don't worry - I cleaned and sanitized them first.

Aunt Dee and Grandma Cyndi came up to visit this weekend.  Deann finally had the opportunity to hold Makinley and give her multiple hugs and kisses.  We are so blessed by our family and thankful for the support they have shown to us!  We look forward to their visits but we hope this is the last visit in the NICU and the next ones will be at our home in Sioux Center.

Feedings - Getting Closer

Anyone who has had a child in the NICU realizes that feedings are usually the toughest thing to wait on.  Your child seems ready to take home but they are not eating the amounts they should.  We have been getting frustrated with feedings and we are trying to stay positive.  Earlier in the week we voiced our opinion that we feel Makinley is being over fed and that she does not realize what it means to be hungry. 

Our routine up until this point has been to feed her every three hours.  The amount of milk she is supposed to eat is calculated based on her weight for the day.  So we wake Makinley up, allow her to eat as much of the bottle as she is willing to eat, and then they NG the rest of her amount. 

Andrew and I feel that Makinley is getting too much food and therefore she is not learning what "hungry" means.  We have come to this conclusion based off of several things.....
* She never wakes up around the three hour mark and is starving for food.  She eats a little bit and then tells us she is done but they still NG the rest. 
* She is gaining 45 grams a day.  After doing some research we learned that the ideal weight gain is 15 to 30 grams a day.  Therefore, we feel she is getting more milk than what her body needs
* I am barely able to provide enough breast milk for Makinley.  A mom's body is supposed to know how much food their baby needs.  I hear stories of how mom's are storing up their extra milk and how they have a freezer full of milk.  I am no where near that!  I have just enough to get her through each day.

Due to our gut instinct and trying to read Makinley - we have pushed for a new routine which includes removing her NG tube.  By taking out the NG, we know that she is not getting any additional milk other than what she consumes herself.  I also agreed to spend the night last night and tonight with her to wake up and feed her whenever she cries for food.  Some nurses refer to this as the starvation method.  We are starving her of food in order for her to realize she has to eat to become full.

Yesterday, I did not see a lot of progress.  Makinley really did not care to eat too much and was happy just to sleep.  I woke up multiple times in the middle of the night expecting to feed her and she was still sound asleep.  I think our baby would be an excellent sleeper if she wasn't woke up every 3 hours for rounds.  Today has gone much better though.  I think it is finally starting to click for her.  She has way better suck pattern and actually wakes up crying to be fed. 

Although she will have to consume way more than what she is now - we can only hope that this means the end is in sight and we can go home soon!



No More NG Tube - First time we have seen her without it!



"How Preemie Moms are Chosen" Article

How Preemie Moms Are Chosen 
by Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?
 
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
 
"Armstrong, Beth, son. Patron Saint, Matthew. 
 Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
 
Finally, he passes a name to an angel and smiles. "Give her a preemie." 

The angel is curious. "Why this one, God? She's so happy."
 
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
 
"But does she have the patience?" asks the angel.
 
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.  Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
 
"But Lord, I don't think she even believes in you."
 
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
 
The angel gasps, "Selfishness?! Is that a virtue?"
 
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." 

"And what about her Patron Saint?" asks the angel, his pen poised in the air.
 
God smiles. "A mirror will suffice."

Fighting High Blood Pressure

I wanted to include the word "fighting" in the title because that is exactly the way we have been feeling lately.  We are fighting for Makinley!  Fighting against Dr. Sanders push for blood pressure medication and fighting for our opinions.  Yesterday and today have been very interesting to say the least.

We were informed yesterday that Makinley has been dealing with some high blood pressure.  Her numbers are higher than what they like to see and therefore they wanted us to meet with a specialist who deals with pediatric patients who have kidney/high blood pressure issues.  Andrew was coming up yesterday so we agreed to both meet with the doctor.  Lets just say he came in with an agenda and was going to try and push that agenda to us.  He wanted to run some more blood work, an ultrasound of her kidneys, an echo, and put her on medications right away.  This was way more than Andrew and I were anticipating.  We had just learned of her high blood pressure on Thursday morning and now on Thursday afternoon he was wanting to make some big steps.  We told him that we always try to make educated decisions for Makinley and we wanted to do some more research on our own first.  We told them they could do the kidney ultrasound and could do lab work with her normal blood work on Monday.  We told him we did not want an echo done at this time and we were going to hold off on medications until the other results came back first.

He was not pleased with this decision.  He tried to tell us that we needed to put Makinley on something right away.  We went on to inform him that if there really was a NEED then we should have been informed sooner that she was even having high blood pressure.  The doctors can continue to monitor her and if we see something change we can make a decision then.

So Andrew and I started to do research.  We talked to nurses in the NICU asking them what is all involved in high blood pressure.  We talked to friends who were nurses and we called Dr. Grossmann in Orange City for a second opinion.  They all agreed that Makinley was on the high end of normal for high blood pressure.  Her numbers were usually between 105 & 120.  They also informed me that it is fairly common for premature babies to get high blood pressure after being in the NICU for so long.  In addition - they told us to watch HOW her blood pressure was being taken.  Makinley should be completely calm and at rest state when they try for a reading.  They should be taking a reading from her arm and not her leg since her leg will usually give a higher reading.  I took this advice and sure enough some nurses were doing it way different than other nurses.  Sometimes it was her leg, other times it was right after she was mad from a diaper change, and sometimes it was done perfectly.  Even more comical is when Makinley had nurses that we know she is comfortable with - it was always in the okay range.  If she had new nurses that she was not familiar with - it was on the high side.  So this made us want to monitor instead of act with medication even more so.

I went home with Andrew last night and re-packed my bags for the week.  We plan to go back up first thing tomorrow to spend more time with Makinley.  I called into the NICU floor to see how Makinley was doing today and was surprised with the information that was provided.  First the nurse informed me that the ultrasound of Makinley's kidneys went fine.  The left kidney is still slightly inflamed or dilated? but nothing to cause concern.  Her kidney showed this dilation already at 20 weeks gestation inside my womb and it is good news that it has not changed.  We will continue to monitor it every 3-6 months because eventually we want to see it go away.  The nurse proceeded to tell me that the Echo went fine too.  The Echo?  We specifically told the specialist that he was NOT to proceed with the Echo until we gave further notice.  Andrew and I were NOT happy.  Needless to say, this specialist lost our respect and we were not going to be working with him anymore.   Andrew voiced his opinion that we were sick of procedures being done whenever I was not present.  I maybe leave Makinley for a day once every two weeks.  This gives me time to re-pack a suitcase and do a few things at our own home before returning to Sioux Falls.  There is no explanation why they waited until I was gone to move forward with the ECHO.  Andrew received a phone call back from Dr. Stevens (Makinley's NICU doctor) apologizing for the miscommunication.  Dr. Stevens said it was his fault and it shouldn't have happened.  We like Dr. Stevens but Andrew said he could not take the blame.  The specialist needs to take the blame and he needs to respect the parents and our wishes.  And there is no need for him to apologize now since he has the results and he has the information he wants. 

So, even though we were not supposed to have an Echo, the results were fine.  Makinley has an extra vessel to her pulmonary artery but it is nothing concerning.  This is pretty typical in babies but most babies don't have an echo to confirm it.  She also has a valve that is still open.  We will do a follow up Echo in approximately six months to make sure it has closed. 

We are thankful that nothing serious was found in the ultrasound or the Echo but unfortunately this does not give us any answers.  Our plan for now is to keep monitoring Makinley's blood pressure numbers and pray they take care of themselves.  I really do not want to start her on blood pressure meds and then have to try and wean her off them later on. 

Makinley's Enjoying the NICU Luxuries

The title of this post may catch you by surprise.  Most people do not put the two words NICU and luxury in the same sentence.  Three months ago I would not have placed them side by side either but my eyes have been opened up to NICU care.  People here really do care for our child.  They know her because she is in the NICU, they like her because she is a baby, but they love her because they have taken the time to understand her personality.  They have become family to us.  Within the care they provide - they also try to include typical things full term babies would be enjoying. 

Here are the "luxuries" Makinley is getting to enjoy.....

1. Baby Rockers!  Bless these volunteers who dedicate their time to holding babies.  They walk around in a circle passing by each and every room until they come across a baby who is crying or a baby who is awake and would like some attention. They range in age from 20 years old to 70 years old but they all have one common goal - love the babies.  One elderly gentleman has been volunteering for years.  He used to do it with his wife but then she passed away.  He figures if he can help hold a baby and calm their fears or anxiety of being in the NICU- his time is well spent and it frees the nurses up to care for other babies.  Another elderly lady volunteered her time to hold our babies because all of her grandchildren live far away and she can't physically hold them. College students volunteer their time to get away from campus life for an hour or two.  And then there is Jayme.  Jayme is studying to become a nurse so she volunteers her time because she enjoys being with the babies but it also gives her experience in the NICU environment where she is hoping to study.  We became close to Jayme throughout our stay here and we made sure to catch a quick picture with her and Makinley one night.  Andrew and I left for one weekend to travel to Oskaloosa for a baby shower.  I was feeling really bad about leaving until Jayme told me that she would make sure to hold Makinley for a while on Saturday night.  And as you can see - she kept her promise and even wrote us a little note for when we returned!  Thank you to all of the baby rockers who love the babies in the NICU! 

2.   Makinley is now old enough to have a mobile on her bed.  This is supposed to be good stimulation and enjoyment for any baby.  Makinley doesn't mind watching it but truthfully I think she enjoys listening to the music it plays more so than watching the animals spin in a circle.  It is probably a nice change of noise compared to the typical beeping she always hears from her monitors!

3.  Makinley can now enjoy a bouncy seat.  She loves this vibrating seat!  We were so shocked when we turned the corner to enter her room and there on the floor was our little peanut sleeping away.  Look at that sweet little face - with her nose up in the air.  I can only imagine she thinks she is big stuff being all cool in her chair :)

4. Lastly - Makinley gets to enjoy daily messages/therapy sessions from her NICU therapist Elizabeth.  Elizabeth visits us every morning and stretches Makinley's neck, back, knees, and feet.  We hope that stretching daily will give her feet more range of motion and possibly eliminate some casting for her club feet.  As you can see - Makinley is not being harmed at all in this process - she is out cold and enjoying the message to its full potential!

More Special Moments....

Makinley continues to grow bigger and become more alert. 

She now weighs 7 lbs 14 oz.  This week Uncle Adam and Grandma Joan were able to hold Makinley for the first time. 

It is hard to believe how much she has changed in two short months.  She looks so big in our arms now compared to when we first held her. Andrew stopped by for a few hours since his work trip landed in Sioux Falls and back to Sioux Center.  We were both excited to see him :)

Baby Shower Hosted by Our Family

 

Due to the complications with Makinley's pregnancy my sisters were not able to throw me a baby shower until after her arrival.  The first weekend in October, Andrew and I travled to Oskaloosa for a baby shower and to enjoy spending some time with family during the harvest season.  My grandma Fynaardt willingly opened up her home yet again and on Saturday morning I celebrated Makinley's arrival with family and friends.  We enjoyed a breakfast/brunch including french toast, mini crescent rolls, meat & cheese platter, fruit, and a cold slush/punch.  Since Makinley was still in the NICU, Deann created a nice slide show of pictures that people could watch while they were eating. 

We followed breakfast with games that Dee had so cleverly planned.  While I was on bed rest I quite frequently made phone calls to relatives at all hours of the day.  So the first game put my multi-tasking skills to the test.  We were challenged to hold Annie the cabbage doll, talk on the cell phone, and hang clothes up on the clothes line - all at the same time!  I posted one picture of the various people who tried.  I thought it was very interesting to see how the tactic/strategy changed as the game progressed!

 

Makenzie was brave enough to go first.  She needed both hands to pin the clothes and opted to hold Annie between her legs.  I was volunteered to go second.  I was ready to show off my multi-tasking skills. I ended up placing 2nd behind my sister Jenna.

Jeanetta was the first person to think outside of the box. 

She placed all of the clothes pins on the line first and then went back to put the clothes on.

My mom also tried something different to hopefully get the best time.

She draped all of the clothes over first and then placed the clothes pin over top of them.



Grandma Fynaardt definitely knew how to handle the clothes pins the best. 
She placed them in her mouth to free up her hands. 
We also allowed her to use a regular phone since that was more her era than a cell phone :)

And the winner of our game was Jenna.  I think she benefited from going last. 
She tucked Annie in her shirt so she was hands free and then used mom's idea of draping the clothes and following with a clothes pin.  This strategy worked better for her than mom since she had both hands to move more quickly.  Good job Jenna :)

 

The next game we played revolved around the Price is Right.  I had my TV options memorized while I was on bed rest and from 10 am - 11 am I always watched the Price is Right.  Deann bought various items and we had to guess the price.  After we guessed all of the items, we added up our total, and the person closest to the real total was the winner.  Obviously my Price is Right watching paid off because I was the winner of this game!  I have to admit that the decorative basket saved me.  I guessed it was way under what the actual price was so that helped even my over bids of everything else she had purchased!  The last game we played ironically revolved around treats.  I guess it is no secret to my family and friends how much I like sweets if they both used this game at our baby shower!  The game was titled "Makinley - How SWEET She Is" which required us to match candy bar names to a phrase.  As much as I liked sweets - I did not do very well at this game :(



Lastly, I opened all of the various gifts that friends and family so generously gave us.  I also used this opportunity to take a picture with Mandy and my progress on the cross stitch project she gave to me while on bed rest. 





Family Guests along with a picture of Makinley since she couldn't physically be present. 

Front Row L to R: Shannon Vos, Cyndi Fynaardt, Deann DeGroot, Jenna Fynaardt, Amanda VandeVoort, Michelle Van Maanen, Makenzie Van Maanen

Back Row L to R: Autumn Vos, Kim Vos, Pearl Vos, Me, Rachel Fynaardt, Barb Vande Voorst

Friends at the Shower: 

Mandy Klyn, Brittany Dieleman, Jeanetta Nieuwsma holding daughter Lydia, Me, Victoria Plate, Amy Holmquist, and Jana Van Zante holding daughter Alexa.



No G-tube for Makinley

I never thought I would be a NICU parent.  When I started bed rest at 16 weeks - I prayed to be a NICU parent.  If we had a baby in the NICU that was wonderful because it meant our baby survived with little to no fluid.  In August, we were granted this wish, and we became NICU parents.  It was scary, emotional, overwhelming and new all at the same time.  Now that we have been here for almost seven weeks we feel we know the routine pretty well.  We also start to learn more about Makinley and once again we are standing up for what we feel is best for her.

We were informed this week that we should consider giving Makinley a G-tube.  A G-tube is a feeding tube that is placed in Makinley's stomach and would provide a direct route for milk to reach her stomach.  Andrew and I have been against a G-tube from the beginning and we're not impressed that it was even brought up to us as an option at this point.  When we toured the NICU in June - we learned that most babies go home between 39 and 41 weeks of gestation.  Makinley is only 37 weeks gestation so why are doctors wanting to move forward with a G-tube?  They feel that she is not learning to eat and therefore a G-tube would enable us to go home sooner.  As hard as it is for us to watch family after family leave the NICU - I am not going to justify getting a G-tube just so we can go home sooner.  I was not shy when I told the doctor I was NOT giving Makinley a G-tube.  I would not even consider a G-tube until she was at least 41 weeks old and then I would push to go home with an NG tube. 

Here are multiple reasons Andrew and I are against the G-tube:

1. It is a surgical procedure.  When dealing with a tiny baby most doctors will agree that you don't want to put them down with anesthesia unless absolutely necessary.  It is also highly discouraged to do it multiple times when they are just a baby.  We know that we will have to do surgery on Makinley's club feet at the end of the year which would require anesthesia.  Therefore we do not want to move forward with another surgical procedure that we don't feel is necessary. 

2. A G-tube comes with many risks such as infections and it requires you to follow up with feeding clinics on a regular basis.  We already have many appointments scheduled to help correct Makinley's feet and therefore we would like to avoid having to follow up with a feeding clinic.
3. Andrew and I feel babies with G-tubes become reliant on G-tubes.  It is the easy way to get a meal so why would they want to learn how to eat on their own when the G-tube does it for them.  We want Makinley to push herself and achieve the desire to eat on her own.  We know this is time consuming now but will benefit her months down the road.

4. There are other options.  We feel like a G-tube is the easy way out or the quick way to send us home.  Parents can go home with an NG tube.  I thought it was interesting that nurses who were also a parent to a NICU child went home with an NG tube.  They did not choose a G-tube.  This says to us that they also felt a G-tube was too much risk and would rather do an NG tube.  I have had many nurses tell me I would be more than capable of learning how to place and NG tube and Makinley would most likely do fine with it.  So once we said we would push for an NG tube - doctors were more open to letting her try to bottle on her own for a longer amount of time.

With that being said, Andrew and I are not condemning any parent who has chosen to do a G-tube for their child.  We know they are a tool the hospital can provide for babies who really do need that help.  But we feel like it is not the right options for Makinley and we just need to give her more time to feed.

Baby Shower from Our Friends

Back Row L to R: Angela Roelfs, Emily Van Deraa, Lisa DeStigter, Valerie Van Beek

Front Row: L to R: Tricia Hessing, Heidi Ragsdale, Me, Jen DeWild

Tonight some of our friends from the area threw me a baby shower.  It was so nice to step away from the hospital for a few hours and hang out with the people who have been part of our support system on this journey.  We met at Jen DeWild's house in Sioux Falls and they had prepared supper for everyone. 

Supper was followed by a few games.  I love the picture below.  I think there is so much going on in the picture.  This was taken during the Baby Babble Game. You had to unscramble the letters to create a word which was associated with babies. Val is picking her brain, Ang is thinking "oh no", I am deep in concentration because we all know I am competitive, and Heidi is cheating off of Trica.  It makes me laugh every time!  I also learned which characteristics/talents/features they would want Makinley to gain from me and which ones they would want her to gain from Andrew from a  Baby Trait game.  We concluded with a game dealing primarily with treats: Candy Concentration in which we had to match various candy names or brands with a phrase that fit that name/brand. 

After games we shared a delicious ice cream cake made my Emily.  She did such a good job on decorating the cake as well as creating the diaper cake which was pictured above.  Thank you to everyone who was able to attend and for the gifts that you showered us with.  Your support means so much to us and we are so thankful to have ALL of you in our lives!

Makinley's Six Weeks Old

We have officially flipped the calendar to October.  Ideally, I should still be pregnant with Makinley.  That seems so weird to me since she has already been around for a while.  Most parents wouldn't even know their child's personality yet or what features they possess - let alone hold them in their arms.

Makinley's newest update:
* She is now 6 lbs 11 oz and 54 cm long
* She passed her eye exam with flying colors. Dr. Tufty, the eye doctor, didn't even require a follow up visit.
* She is starting to be more alert.  I love how she listens to me very intently when I hold her in the morning.  She takes in every word like it is so important when in reality I usually make up stories about kittens and an adventure they have with different farm animals!
* We increased Makinley's feedings to 10 cc's (or 1/3 of an ounce).  We are learning the feedings are just a slow process!
* Her eyes have been filled with matter this week.  We gave her some eye drops to hopefully clear them up. They assume her ducts are just maturing more since she has no signs of a cold or sickness.


Six Week Monkey Picture