Surviving the NICU: with your marriage

NICU parents face so many struggles.  Fear, hurt, understanding, knowledge, patience and so much more.

One area that is frequently forgotten.. Is marrage.  So much time and energy is placed on dealing with the medical and the sick baby that the relationship between mom and dad can get forgotten or placed on the back burner for far to long.  NICU parents have a very high divorce rate, most places state 97% (some say as low as 90, but I can't find any studies).  Also aparently the longer you are in the NICU.. The higher the risk, we were in 175 days. 

So what can you do about it?  The first thing is to be aware.  You have to know a struggle is there to be able to battle it. 

We have watched many of our NICU friends separate after spending time in the NICU. We are currently 5 years out from our NICU time but still have the "special needs child" risk which is also high (although it may be a myth!). 

Our marrage and ourselves are far from perfect, and we both admit that. 

A few things you can do-

Avoid blame!:

This is very important.  Daddy C could blame me for the heart condition (since I was on clomid and heart conditions run in my family).  We could blame each other for the Pre-Eclampsia since that is in both our families.  We could nit-pick back and forth about what we could have done diffrently to change the outcome, but none of this is helpful. It mearly creates strife and division.  This also includes trying not to blame yourself, if there is nothing you can do about it now, then it is not helpful.  Use your time and energy to focus on what you CAN do, such as googling what you can do to improve long term outcomes and/or pumping. 

Teamwork:

Just like in every marrage you should develop a team mentality.  The tasks you divide up will be NICU specific issues, but need to be geared toward each of your strengths.   I like to have information so I did (and still do!) most of the communicating with the doctors and nurses.  I keep track of meds, history and goals.  My husband is better at dealing with emotionally charged situations or where our son has to do something that will be painful.  For example I would step out of the NICU during eye exams and my husband would stay with him.  He is also the one who usually holds him during IVs.  We even worked as a team when it came to pumping, in the early days he would deliver the tiny syringes of milk.  Later he would take the night pumpings to the fridge and carry the frozen milk to the NICU when they needed a fresh supply.   He also took on the job of cleaning and sanitizing the pump.

Take turns:

When you are having baby time, take turns. We would swap turns at each care time, I would get the first turn of the day and he usually got the last (I need more sleep). When it came time to do kangaroo care, we swapped then too. When we had only one per day, I got it because I needed it to help me keep/build my supply (except for Father's Day, which was my gift), but when we went up to two, he got the second.  Then I the third and so on.

Date night: 

About once a month or so, we would miss one care (so hard!) to go on a date night.  Sometimes it was just a meal, but Daddy C is a movie geek, so going to a movie meant a lot for him.  Whatever works for ya'll.  Our first date night was a few weeks in when our church youth group went to a concert in the city that our NICU was in and took us along.  It was their way of getting us out of the NICU for a few hours. Lil'C was having a good day, so we went. I still remember it fondly and am glad we went. 

Strengthen the foundation: 

A weak foundation is hard on any marriage, but being in a highly stressful situation such as the NICU can really exasperate any weak areas.  We have done a few "marriage courses" over the years, even before we were pregnant.   We both hold firmly to the idea that there is always room for improvement any ANY marriage and that NO marriage is perfect.   No "happily ever after" princess here., "I Do" is a starting gun not a finish line. 

A few we have liked: 

Captivating and Wild at Heart (not marriage per say but helps you understand your own weaknesses, highly suggest it first)

The five love languages 

Prepare to last (We did this in a church group)

Fireproof (in process) 

I have also read blogs (Pinterest!) and  books when we run into an issue.

I like the book The Surrendered Wife,  even though I hate the title and don't agree completely but I think she makes some valid points.  

I love finding free kindle books (even if I don't fully agree with the author, I usually find a new perspective.) They change frequently, so search.

Fix the finances:

The #1 cause of divorce is money trouble.. Or fighting about finances.  And NICU time is EXPENSIVE, and with therapies, Doctor appointments and being medically fragile.. It doesn't get much better.  So I highly suggest Dave Ramesy.  We had already read some of his books and we also were gifted his financial peace class, and that seriously brought some peace.  We have WAY less arguments in our home now and we are on Baby Step 2, we have a way to go but we are getting there! 

I hope these tips help strengthen your marriage and your marriage defies the odds just like your little one!

Do you have any tips for me? 

Eviction Number Three

I know it has been over 6 months since my last post.. It has taken me this long to hopefully be able to complete this post.

Attempting to hold it together for photos

On July 14 I went in for a very much unwanted scheduled C-section.  My OB was going out of town and there was no other OB in the area that I even slightly trusted to even touch me, much less deliver my baby.   I was angry and dreading the surgery, seriously not how you should feel when looking to meeting your child.
My sister was my "doula" and my husband was also there.  When we got there we realized we had not taken any "bump" pictures, so we took some quickly.
 We went in and found out they had given away my room because they expected us to arrive at 8am, while my Dr had told us to arrive at anytime..  I immediately wanted to leave.  The nurse seemed a bit angry that we were "late",  my sister stepped out of the room where she went to the nurses station and politely (from what I was told) and explained that we were a hospital family and I really did not want to be having the section, but was not given a choice in the matter.
We  waited in the prep room, next to a woman in actual labor with the nurse and my sister telling jokes to keep my mind off of it.   We kept being told "a few more minutes"  "uh oh.. someone got pushed ahead"  so I didn't actually go back until 3.  That gave us enough time for them to eat and my sister to braid my hair since I knew it would be a little while until I would be able to shower.
We went over my birth plan (I used this one as a starting point and adjusted it for us) and they assured us that they would attempt to accommodate our wishes.  I swear they thought I was the crazy natural mama up for the section, but after my sister's talk with the nurses they were all really kind to us, almost pitying.
When I finally went back I was scared and worried the entire time.  I really hate getting epidurals... the cold room, the pain, the worry that if they slip up I could be paralyzed, spinal headaches... etc.   Then I was staring at the same ceiling tiles as I was at Lil'K's delivery and thinking that if that Dr hadn't been an idiot then I wouldn't be forced to do this section..

Skin-to-Skin in the OR

 My hubby came in and was allowed to look over the curtain and my sister stood at the door, both got to watch my uterus pulled out, while I looked at the bugs inside the florescent lights.   There was the usual pushing and tugging and to do a "delayed" cord clamping they laid her on my legs and did whatever else it is for as long as they could until the placenta began to separate.  Then they cut the cord, and brought her to me so we could skin to skin.  Unfortunately, due to the epidural I had weakness in my arms and had trouble moving them.  My husband was not by my side at this moment and I have no idea why.  The neonatologist had to help me adjust her because her face was in my neck.
 She was cleaned up and hubby got to trim the cord, which was actually a first for us.  He stayed with her until she was reunited with me in the room.  I of course was numb and unable to move my legs for many hours.  I remember them doing the final clean up and after they removed the curtian being shocked that my legs weren't straight like I thought they were.  When I was back in the room my hubby was able to stay with me,  and my parents brought Lil'C and Lil'K to meet their new baby sister, Baby K.   They both wanted to climb on my lap and cuddle but we of course had to be careful since I couldn't move or feel if they were hurting me.

Lil'K and Baby K

 

 Lil'C and Baby K

Baby wearing less than 24hours after Section.

After the epidural wore off enough I was able to get around a bit, very very slowly.  Baby K did end up having some trouble with holding her temperature and there was talk of putting her in a warmer.  First I grabbed my sling and stuck her on me, where she stayed the rest of the time there.. even at night.  That is something I would only do in a hospital setting since the nurses come in frequently and I am an experienced co-sleeper.  Still worried me but her temperature stayed 1/2 a degree from mine for the rest of our stay.
 The biggest worry I had was going home, and being home most of the day by myself with 3 little ones while healing from the surgery.  Due to Lil'K's affinity for flopping, that did become a worry.  She landed on me once so hard that I screamed and my sister had to pull her off.  I was in tears it hurt so bad.. and I was on pain meds at the time.  

At 5Lb 15oz She was my largest baby. 

She has gotten much bigger in 6 months

I do wonder if I could have done it differently, my scar was thinning but that isn't a huge deal.  If only I had been allowed to attempt a VBAC with Lil'K then maybe I would have been able to do the same with Baby K.  The crazy part is that the risk levels of a VBAC at Lil'K is less of a risk than a 3rd section and they knew I wanted a third child.  It just feels unethical to me and a bit crazy.
My post-pain is worse now as well.  My scar is in almost constant pain along with my upper right thigh,  there is also some numbing at the upper part of it (the pain goes around the edges of the numbing).   It just all feels so unnecessary and a bit unfair to my girls and myself.  So now I have had one necessary and life saving c-section, and two unnecessary ones.
Baby K is growing and is a very happy little person,  for that I am blessed.

Scheduled Eviction

By time this posts I will be going to have major surgery.  Those of you who follow me on Instagram know that I am 9 months pregnant with our third child Baby K.   I haven't posted much for two reasons: 1. We didn't know we were expecting until the second trimester, 2. Pregnancy kinna freaks me out since for me it is a potentially life threatening situation.  I really avoid thinking about it, and the closer we get to the section tomorrow, the more frightened I become.  My PTSD has really been acting up and I know it will come to a head tomorrow in the OR.

Due to where I live and finances my options are extremely limited.  I'm actually a bit jealous of some of the mom's in my special scars group  who have VBAC supportive hospitals, and a VBAC supportive OB/midwife.  I actually found the most VBAC supportive OB in the area but the hospital he delivers at has a strict anti-VBAC policy.  I searched the area for a midwife but couldn't find one, even though I doubt we would have been able to afford one anyway.   The closer we have gotten to the section date the more I understand why some women choose unassisted home births, but I feel that is far to risky in my situation.  

One of the things that many of the Special Scars women face is a OB who says they are VBAC friendly and then switch at the last minute.  I seem to have accidentally done the opposite with my OB.  He asked me what the goal was and I told him that I wanted to go into labor on my own.  Which is the least of what I wanted to do.  I also wanted a trial-of-labor and optimum being a VBAC.  Due to my history I know that induction is far to risky so I would have to go into labor on my own within the next 20 hours to do that, which feels very unlikely.  I know many just say, don't show up tomorrow (including DH) but the problem with that is that my OB is going out of town and if I did go into labor I would be forced to use one of his partners... And that didn't go so well last time.... 

I really think OBs should do a round of pediatrics during their med school training, there is one thing that pediatrics do better than any other division of the medical field.. Psychology in medicine.   Pediatrics remembers that how a patient feels, effects how they heal and must be taken into account.  I think OBs are frequently the worst.  A mom is seen strictly as a problem to be solved: get the kid out. So many women are ending up like myself with traumatic births because of it.   Getting the kid out isn't the end of the equation.   

I actually pointed this out to my OB the other day.  After I am delivered, I will have to go home and care for 3 small children all alone.  Sure I have a supportive husband who will help when he is home, but he doesn't (nor could we afford) paternity leave.  My 4 year old (Lil'C) will still need to go to therapy, or risk loosing it.  He frequently needs to be carried, and picked up since he falls a lot.  My 2 year old (Lil'K) will still want to play and "flop" on my belly.  She also frequently fights getting in her car seat, to the point that it takes holding her down with all my weight to get her in it.  Plus I will have all of the newborn duties and normal house keeping duties to keep up with.  A VBAC would mean that this wouldn't change much, but a RCS means that I can't drive or lift anything heavier than a milk jug for at least two weeks or risk opening my incision and bleeding or worse.   OBs frequently forget to take such things into account, and hospital lawyers never do. 

One extra bit of "fun" is that Baby K's placenta is directly on top of  Lil'C's scar.  This means that it could have grown into the scar putting me at an increased risk of hemorrhage and possible historectomy... Yeah that is what every 31year old wants.. A historectomy...

I have done research on this and I truly feel that a VBAC would actually be safer, if Baby K were placed imedeately on my chest and allowed to nurse with delayed cord clamping.  If the placenta were allowed to release on its own since nursing would help close the blood vessels and lower the risk of hemorrhage.  

But because of some hospital policy I am forced to have major abdominal surgery which puts me at risk for not only hemorrhage and historectomy, but blood clots (seizure/stroke), paralysis (epidural), and death..  And a section has been shown to increase the risk of asthma, allergies and immunie issues as well as actually change a babies DNA in the process.. 

I know the VBAC would also have the risk of rupture at somewhere between 4 and 7% (some Drs clame as high as 10, but research (http://www.specialscars.org/index.php/studies/) does not support it.  IF I ruptured Baby K and I could possibly both die, but that is a small percentage of that. 

I really wish OBs and hospitals would consider more than getting the kid out when thinking of these unethical policies.  I think these policies are why more and more women are choosing unassisted home births.  

I think if politicians would push to have more midwives (registered) to be allowed/encouraged to do hospital births (especially in cases like mine) then our maternal death rate (the highest in the developed world!) would drop and so would unassisted home births.  Instead midwives in some states are prosecuted for attending women like myself... Which leads to mom's feeling like unassisted home birth is the only option..  It really needs to change. 

Hopefully all will go well tomorrow.. But prayers/happy thoughts would be appreciated :) 

Easter Clothes!

Here is our Easter outfits from this year!

My sister picked up 5.5 yards of fabric in one of her adventures. 

It has a small floral print.  

For Hubby:

 I made a skinny tie using this tutorial: http://www.purlbee.com/the-purl-bee/2009/5/21/mollys-sketchbook-fathers-day-tie.html

I had to add about 3" overall to the pattern since my husband prefers long ties.  When I make the pattern again I will also make it wider.  

He wore his charcoal grey suit, a white shirt and silver cufflinks from my little brother's wedding

For Lil'C:

I made a bow tie using this tutorial:http://brittanyestes.com/2013/07/diy-bow-tie.html

I threaded and stitched elastic through the back and added a snap on the ends of the elastic.  I always worry about things around his neck getting caught especially since he still falls a lot.  

It was a good easy pattern, but Lil'C is fairly small so when I use the pattern again, I will make it slightly smaller. I will probably shrink it by about 25%. 

Lil'K also likes the tie and has frequently worn it as a head-band/bow :)

Lil'C also wore his charcoal dress pants, white shirt and light grey suspenders from my little brother's wedding. 

For Lil'K: 

For Lil'K's dress I used this tutorial and pattern: http://whatsmummyupto.blogspot.com.au/2014/03/tutorial-summer-frills-dress.html

I really liked it and will be making her some more.  There were a few confusing parts on the tutorial about which pieces should be cut for the bonace so read over it carefully and make sure it works right.  I also wish I had stitched the straps to the lining before putting it together so that I could have used a 1" overlay to make it more secure.  I have had to re-stitch the straps twice because Lil'K plays hard and has managed to pull them out of the seam.  

I also added a gross-grain ribbon to the bottom of the bonace allowing about a foot to hang free at the sides so I can tie it in a bow on the back.  I think it really finished it off, making it a good church dress instead of a sun dress.  

The bow came  from my MIL shortly after Lil'K was born.  It really pulled the pink flowers out of the fabric.  

For Me:

I used this tutorial and pattern as a starting point: http://verdantbents.blogspot.ca/2012/04/make-your-own-easy-top.html

I absolutely love this pattern!  I'm planning on making quite a few tops from it soon.  I already have the fabric for it, I just had to wait until I no longer had a baby bump to do it :)  Due to the elasticized neck line it works GREAT as a nursing top without looking like one.  

The tutorial is written as a top but all I Did to make it a dress was to add some length and with.  I measured from below my bust until the widest part of me (which was belly at the time, but normally would be hip).  Measure around widest part and divide by 4 and then add 1-2" for ease.  I added about 3" to make room for belly growth.  Then curve slightly down and to your desired length.   Make sure the curve is smooth or you will end up with box hips! 

The lining in the tutorial I cut off at knee length and simply surged the bottom of it. 

I then took the ruffle piece from Lil'K's dress and cut out 4 pieces.  I put that on my dress the same way I did Lil'K's to create a little echo between our dresses and a nice finished hem. 

I also added the same ribbon from Lil'K's dress at the side seam of my dress right at the under-bust elastic.  Hubby suggested it since before the back was really plain and it needed to be broken up visually.  I think it really finishes it off and gives the appearance that the ribbon runs through the under-bust casing.

When I make this pattern again I'm going to bring the neckline up an inch because it feels to low where I have it.  Having it that close to the under-bust elastic also makes my chest look smaller... Which for me isn't a good thing. 

I suggest using this tutorial to figure out where you want your neckline: http://3hourspast.com/2012/04/07/at-long-last-how-to-mess-around-with-a-neckline-without-getting-burned/

It is certainly what I should have done! 

I will also take the outer shoulders and bring them down about 1/4-1"  because they have the tendency to slide off and have to be pinned to my bra to keep them in place.  

For Baby K:

Due to how much fabric my sistergor me, I still have some left over!  I'm going to use some of the left over fabric and the following tutorial to make a matching dress for Baby K now that she has arrived! : http://www.jessiestreetdesigns.blogspot.com/2012/02/pinterest-challenge.html

I may also make her a pink bow to match Lil'K.  

DIY O2 Tank transporter

It is a fairly simple thing to make.  Hubby tweaked the design a few times, but now Lil'c barely uses O2 and we don't use it any more, which is why it is inside.   We have used it in both a hatchback and a van.  

The Supplies: 

PVC pipe (slightly smaller than the tanks so it will grip)

3/4" plywood (measure from the floor to the top of the back of the backseat x width of the back of the backseat) 

Extra strip of 3/4" plywood 4"x needed length (only under small bottles) 

Tie-down straps (auto supplies) 

Spray paint 

The process:

Cut large plywood to size.  Notice the notches in the bottom to allow the tie-down straps to wrap around the back of the seat and hold it in place. 

Cut PVC pipe to length and then make ONE additional cut down the length which will allow the pipe to expand and grip the tanks. 

Screw PVC to the board making sure the vertical cut is facing out.  

Screw the strip of plywood under the PVC for the smaller tanks.  This will give them something to rest on, otherwise they will slide right through.   The large tanks will simply sit on the floor.  

Spray paint for appearance.   We went with black since we had it on hand, or you could try and match your vehicle's interior. 

Fairly simple process :). 

This allowed us to make use of our full trunk space while easily being able to trade out tanks.  You could easily tell the empty from the full by the white caps.  We kept the small tank in use in the transport bag with its valve on and a valve on whichever large tank was currently in use. This allowed us to carry 8 small tanks (notice only 7 slots) and 2 large tanks wherever we needed to go, including 2 4-day trips to see family 14 hours away!  On those trips we also brought along the concentrator and used it as much as possible to save our tanks.  

Although I will tell you, driving around with that many tanks in the back can make you nervous of other people's driving, but it is certainly better than them rolling around if you are carrying them anyway! 

How many tanks have you had in your car at one time?