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Oh What a Year

05 Wednesday Feb 2014

Posted by amomentinmarch in TWINS

≈ 3 Comments

Tags

1st year, Babies firsts, NICU, Rainbow baby, TWINS

Oh what a year it has been. An amazing life-changing year. Since I have not done a very good job keeping my blog updated, here is a year in review.

Feb 1, 2013- The phone rings in my hospital room, it is my doctor. After further review, she and the high risk doctors agreed that although I past my morning tests {barely}, they didn’t think I would make it through the weekend… Super Bowl weekend; a weekend many take off or call in. She wasn’t willing to risk an emergency situation with a skeleton crew. So, we welcomed Landon and Nolan into the world at 3:37 and 3:39pm. I had made it 30 weeks and 5 days.

It was right around midnight when I finally got to go to the NICU and see my boys. I was on a lot of medication, so it is bit of a blur. They were so tiny with lots of tubes and wires. I found out their official weights; Landon 3lbs and Nolan 2 lbs 8 ounces.

Feb 3rd – We finally got to see Landon’s face. The CPAP and jaundice mask had covered all but his chin.

First time seeing Landon's face.

First time seeing Landon’s face.

Feb 5th- Landon rolled over for the first time. Preemies total body weight vs. muscle allows them to do things other babies won’t do for months.
Feb 9th – After 8 long days, I finally got to hold Landon for the first time.

First time holding Landon

First time holding Landon

Feb 10th – Chris got to hold Nolan for the first time.

Chris Holding Nolan

Chris Holding Nolan

Feb 11th- I got to hold Nolan for the first time. Only one of us can hold each baby for 30 minutes to an hour, and then they have to go back into the incubator. Also, Chris held Landon for the first time.

First time I held Nolan

First time I held Nolan

Feb 12th – The first VERY SCARY day in the NICU. We had just been warned the “honeymoon phase” was ending and risk of infection was setting in. Nolan had NEC (necrotizing enterocolitis). It was a very serious infection that ‘kills’ the small intestine. It can require surgery, and in severe cases it can be fatal. They were treating him with high doses of antibiotics and suctioning everything out of his stomach. He looked Grey we knew it was not good, but the NICU felt they were ahead of the infection.

NEC

NEC

Feb 13th- Nolan was working to hard to breath, so he got put on a ventilator and also got a PIC line put in his scalp. (this was also Nolan’s first haircut since they had to shave his pretty blonde hair) Much of the day was spent debating about moving him to Children’s Hospit al of Atlanta. The doctors still felt they were ahead of it, so for now he stayed.
Feb 18th- Nolan came off of the ventilator and Landon came off of oxygen support for 5 hours.
Feb 19th – We finally started to work on the nursery. Better late than never.
IMG_0536

Feb 22nd- Nolan got to eat again for the first time since his infection began.
March 9th- The boys became roommates once again. They had been living in incubators in individual rooms and are now large enough and healthy enough to share a room. This was also the first time I got to hold both of my babies at the same time.

First time holding both babies at the same time.

First time holding both babies at the same time.

March 18th- The boys first tornado warning. The NICU had to move all the babies to a more secure location.
March 20th- Landon got to come home! While this was great news it was also a new challenge, Landon could not come back to the NICU to visit his brother. One baby home, one baby in the hospital. Never have I wanted to clone myself so badly.
IMG_0516

March 22nd- Nolan removed his own feeding tube (not the first time, but this time it stayed out).
March 23rd- Nolan was removed from Oxygen support
March 26th- To everyone’s surprise Nolan came home. We had expected him to be weeks behind his brother, and I am not going to pretend like I was not apprehensive about him coming home so soon after coming off of oxygen.
IMG_0539

Life at home as a family was so much easier, although I quickly realized it was almost impossible to get anywhere on time. I mostly kept the boys in a bubble not taking them out in public except for doctor appointments. And, there were plenty of doctor appointments. I had interviewed several doctors to try and find the one that was the right fit for our family. The first pediatrician we saw was not going to work out. After a lecture from him about Nolan being small and not gaining weight after leaving the NICU and him telling me I could not breastfeed he had to be on formula, I knew it was time to find someone else. He wanted to do weight checks every other day and when I refused to schedule a follow up appointment, the front desk girl read between the lines. She offered to schedule us with another doctor in the practice, the one her daughter sees. I reluctantly agreed.

Two days later we met Dr. Smiley. She walked into the room with a page of notes and the complete NICU files she had ordered. I noticed they were highlighted and notes were written on them. I immediately felt like the right decision had been made.

Mid May we held a “Home Coming party” for the boys. Until this point very few people had met them. We didn’t allow friends to come to the NICU (for the most part), so this was a great way to introduce them to everyone at once. I was surprised how many people were reluctant to hold the boys because they were still so small. Nolan was not even 6 lbs and Landon was just under 8 lbs. I understand they were little, but they were so big to me.

May 14th I was at my OB’s office following up on some post partum complications {did you know you can have a post partum hemorrhage 10 weeks after giving birth?} My doctor had been holding Nolan and feeding him while we talked. She handed him back to me and was about to leave the room when he spit up. I was very accustomed to his spit ups so while I did think they were excessive, I was not alarmed; embarrassed since it covered my doctor, the wall, and the floor, but not alarmed. My doctor on the other hand was very alarmed. She stated while she was not a pediatrician, she would have him evaluated. Spit ups should not projectile 5 feet across a room. Taking her advice, I called the pediatrician. She said she would take my OB’s word for it being abnormal and asked me to take him to Children’s Healthcare of Atlanta. She was going to call ahead and let them know we were coming… Our first trip to the hospital.
IMG_0682

The ER doc thought we were likely dealing with Pyloric Stenosis. It is where the sphincter at the bottom of the stomach doesn’t drain properly. If that was the diagnosis we would be looking at surgery to correct it. Lots of tests, and one long night in the ER later, we found out it was in fact just really bad reflux. I was relieved that he wouldn’t need surgery, but annoyed when the doctor told me it was more of a laundry problem than a medical problem.

May 28th Nolan’s reflux had been getting worse, every now and again he would get choked on it. About an hour after his 9 PM bottle, he began spitting up. Typically we would have put him in his crib, but this night he fell asleep in his swing down stairs and since he would still eat a midnight bottle we let him stay put. I grabbed a cloth to go clean him up and realized he was not only choking he was turning blue. I grabbed him turned him over and shoved my fingers down his throat to check his air way. Chris grabbed the bulb syringe and began to suction his throat. Moments later he got his color back, but was extremely pale. We debated a return trip to CHOA (Children’s Healthcare of Atlanta) but decided just to watch him all night instead. The next morning we called the doctor and I can’t say I was surprised when she asked us to head back to the hospital. This time he would be admitted for a life threatening event.

We spent 3 days at CHOA and during that time they must have run every test under the sun. The diagnosis…. Reflux! This time they felt it was a bit more than a laundry problem and sent us home on monitors. I had hoped we were done with wires when we left the NICU, but they did give me some peace of mind.

My days were filled with so many doctors that at times it was hard to keep them all straight.
• Pediatric Cardiologist – Nolan had a heart murmur which eventually closed on its own.
• Pediatric Brain surgeon- Both boys had a grade 1 brain hemorrhage at birth; it sounds scary but is fairly normal for preemies. During a brain scan to be sure the hemorrhage resolved they discovered Landon had a cyst on his brain. It was basically declared a freckle, nothing to lose sleep over.
• Pediatric General surgeon- In the NICU Nolan had a hernia. It was reduced and has since been a non-issue. No point operating on a non-issue.
• GI Specialist – Reflux!!!
• Pulmonologist – Nolan was diagnosed with chronic lung disease. He doesn’t use his whole lung capacity, draws hard, and has a high respiratory rate. Nolan gets monthly synergist shots that will protect him from RSV. The shots (one in each leg) are live antibodies. They also follow Landon due to being a preemie.
• Pediatric Ophthalmologist- Landon had tear ducts that never opened. He will be having a minor surgery to correct that soon. Nolan has perfect vision.
• Occupational Therapist- Due to being so preemie they both have had some expected developmental delays. The Therapist comes once a month to work with them on achieving milestones.

July 9th – Landon made it on the growth chart for weight at 13lbs and 3.5 oz and the 4th percentile. Nolan made to double digits.
July 12th – Both boys slept through the night
July 26th – Mommy’s first business trip since they were born; 4 nights away from my babies. Did I mention I was still nursing? Explaining frozen breast milk to TSA agents at the airport security was… um…interesting. (I will write a blog post about this at some point.)
Sept. 14th- Landon would sit all by himself
IMG_1089

Sept. 26th Nolan will not let Landon get too far ahead, so he started sitting up by himself too.
IMG_1138

Oct. 17th – We had a first word and it was MAMMA from Nolan!!!!
Oct. 29th – The boys first cold. It started with Landon, he gave it to Nolan, then Daddy, then Mommy, and then it circled a second time.
Early Nov. – We started introducing solid food. (And, Nolan started vomiting a lot) Also, Landon started to crawl!
IMG_1281
Mid to late Nov. – Nolan gets diagnosed with a wheat allergy. I am very thankful for the Gluten free trend. It gives us some options but is still hard at times to figure out what to feed them. Also, Nolan started to crawl.

Nov. 26th- Landon was not feeling well, he was fussy, sleepy and running a fever. I had strep the week before so I was sure he must have caught it. We head to the doctor only to find out he does have strep, and scarlet fever, and an ear infection complete with a ruptured ear drum. My poor baby!
Dec 1st- The boys see Santa and there were no tears!
IMG_1311
Dec 24th/25th- The boys first Christmas was so much fun! They liked the bows and tissue paper the best.
DSC_0884

Before I knew it, I was planning their first birthday. They were my super babies so they had to have a superhero party. The whole year went by so fast. They have filled our home with laughter and smiles. When they were only a few pounds, I wanted them to get bigger; now they are growing up too fast.
DSC_0115

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News Roller Coaster

12 Monday Nov 2012

Posted by amomentinmarch in Uncategorized

≈ 2 Comments

Tags

HELLP, Preeclampsia, pregnancy complications, Rainbow baby

I have never been a big fan of roller coasters, and last week featured way too many ups and downs.  Tuesday we found out we were having a pair of boys.  I foresee baseball and boy scouts in our future. The ultrasounds looked great for both boys; strong heart rates, 20 fingers and toes accounted for, no soft markers for any issues!

The following day I saw my regular OBGYN.  By her line of questions as she entered the room, I could tell something was amiss.  Turns out, her in office quick screen I tested positive for proteinuria.  Basically that means my kidneys are spilling proteins for some reason. While this is one indicator of preeclampsia, alone it would not lead to a diagnosis for preeclampsia.  She was very surprised the specialist hadn’t caught it the day before.  She decided to have me do a 24 hour screen, which is a much more accurate test to be sure there was not an anomaly.   She also decided for the time being it would be best for me to work from home.  She stopped short of putting me on bed rest and stressed I was not yet confined to the house or the bed for that matter, I just need to take it easy.

Thursday, things were looking back up again.  All of my routine blood work came back and everything looked great.  My platelet count was holding steady.  This was great news!

But then came Friday’s news!  I got a call from Dr. Reed.  When I was pregnant with Ansley, I saw him once.  I had not seen him since, but I knew when I was in the hospital he was the one requesting tests for research purposes and had been following my case.  I was yet to actually see him in this pregnancy, so you can imagine my concern as I am listening to his voicemail and he is asking me to call him.  Before I called him back, I called Chris and gave him a heads up.

Dr. Reed had been calling to discuss my sequential screen results.  The sequential screen is a test that is done in multiple parts to screen for Down Syndrome, Trisomy 18 and neural tube defects.  He started by discussing the Down syndrome results, I tested just outside the norm… again.  I tested the exact same with Ansley and it was a false positive.  He stressed they didn’t see any markers on the ultrasound, twins often throw the numbers off and as stands it was .2% chance based on my numbers.  All in all, I was not too concerned about this result, but it is something I will keep in mind.  There is another blood test I can do called MaterniT21, but it is only 95% accurate with twins.  The bigger concern for him was my high Alpha Fetoprotein levels, aka AFP levels.

Typically, high levels of AFP would be indicative of a neural tube disorder like Spina Bifida.  However, in reviewing my ultrasound he could see about 90% of what he needed to see to rule that out.  He said they will check again in my next ultrasound, but he wasn’t concerned about a neural tube disorder.  His largest concern was based on newer research that has shown a strong link between a poorly functioning/ weak placenta and high AFP levels.  A weak placenta can cause pregnancy complications like preeclampsia, small gestational age, preterm labor, early preterm labor (28 weeks or earlier) and HELLP.  Mixed with my history, the fact I am having twins, and now high AFP levels, he felt strongly that, at a minimum, I will develop preeclampsia during this pregnancy.

This was not exactly new news; my OB has done a good job of making sure we understand all that this pregnancy will likely encounter.  She told me the day we found out about the twins that this would not be a normal pregnancy.  She told me to expect bed rest, hospital bed rest, and that I would possibly deliver preterm via an emergency c-section.   I have done the best I can of preparing myself for whatever happens while trying to remain optimistic.  To me, this is just one more road bump to get past.  That being said, this road is getting awfully bumpy!

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And baby makes 4

25 Tuesday Sep 2012

Posted by amomentinmarch in RAINBOW BABY

≈ 3 Comments

Tags

HELLP, Rainbow baby, subsequent pregnancy

July 30, 2012 – It is official…. I am pregnant.

We got cleared from the doctor and decided we were ready to try again.  Within the past month I must have seen a dozen rainbows which I took as a good sign. Each rainbow reassuring me that we were making the right choice to try for another baby.

I had planned to take a home pregnancy test on Saturday, but I just couldn’t wait, so Friday after work I went ahead and took the test.  It was negative.  Better luck next month.  After all, there is only a 25% chance of getting pregnant even if the timing is right. The weekend came and went.  Monday as I was getting ready for work, something urged me to take another test.  The same negative line popped up rather quickly and as I was getting ready to throw it away I noticed another line starting to form.  I stared at the test as the second line got darker and darker.  I was speechless. I walked to the bed where Chris was still laying and handed him the test.  Not really yet awake, he grumbled for a minute, realized what I handed him and I could tell had the same feelings I did.  He got up, followed me back into the bathroom; he was not saying a word and neither was I.  I was still trying to wrap my head around what I was feeling. This is what I had wanted- what we had both wanted! But, I was nervous, scared, and a little sad that I was not overjoyed like I was with Ansley and at the same time I was happy, very happy, but I wasn’t excited.  I was on the verge of tears and I still can’t tell you if they were good tears or bad tears, when Chris finally said, “Guess we are good at the getting pregnant part”.

I took one more test for good measure and told Chris I would call the doctor and let her know.  I knew she wanted to see me right away.

I drove to work as if it were just another day.  I tried to process the news; I tried to force myself to be excited, but my mind kept racing back to Ansley, my last pregnancy, the only frame of reference I knew.

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Sunsets and Fire Rainbows

21 Thursday Jun 2012

Posted by amomentinmarch in Hope

≈ 2 Comments

Tags

Fire Rainbow, Rainbow baby, rainbow clouds, sunsets

Since moving to our new house, I have remembered how much I love sunsets.  My apartment in college had a great sunset view as did my first apartment in the real world.  But, when Chris and I bought our first house a great sunset view was not on the must have list.  For 6 years, I forgot how magical sunsets are. 

Before putting an offer in on our new house, we drove by after work one evening in an attempt to make a final decision.  The timing was perfect, we realized we had a magnificent sunset view from the back porch.  We now spend many evenings sitting on the back porch, sipping wine and watching the sunset.

On Tuesday, we realized we were coming up on the summer solstice. We decided to celebrate the longest day of the year by taking the boat out after work.  It was a beautiful evening on the lake.  We stayed on the water to watch the sunset.  And as we were cutting across the lake to the dam, the best spot to watch the sunset, I spotted something in the clouds.

I was absolutely mesmerized by the sight.  I asked Chris, do you see what I see?  Just to the left of the setting sun there were a few clouds, but not just any clouds.  They were rainbow clouds.  I had never seen such a thing. I have since learned this phenomenon is called a ‘fire rainbow’ I grabbed my iPhone to try and snap a few pictures. The picture doesn’t do it any justice, so I found one on Google images with better resolution that captures what I was actually seeing. 

Rainbow Clouds over Lake Lanier

Rainbow in the clouds – image found on Google images

It wasn’t long ago that I wrote about Searching for my rainbow.  And here is a rainbow right in front of me, but not following a storm.  In fact, it is a much more rare sight than a traditional rainbow.

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Searching for my Rainbow

19 Thursday Apr 2012

Posted by amomentinmarch in Pregnancy

≈ 3 Comments

Tags

Rainbow baby

I needed to get out of the office for a few minutes today, so I popped over to a cute little gift shop nearby.  I had no intention of buying anything.  Just a change of scenery.   As I looked at all the pretty little things, a picture frame caught my eye. It read, “Have Faith in Your Dreams, and Someday Your Rainbow will Come Smiling Through” ~ Cinderella.

Everyone loves a good Cinderella quote, but it is interesting how many things now have a different meaning.  It was about 8 months ago that I first heard the term Rainbow Baby.  I was at my support group, Rock Goodbye Angle.  I wasn’t 100% sure of what it meant, but I thought I had a pretty good idea. Of course, when I got home I Goggled it.  According to Urban Dictionary,

A “rainbow baby” is a baby that is born following a miscarriage, stillbirth or neonatal death. In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison. The storm (pregnancy loss) has already happened and nothing can change that experience. Storm clouds might still be overhead as the families continue to cope with the loss, but something colorful and bright has emerged from the darkness and misery.

Ever since I learned that term, I have been looking for a rainbow…literally.  If the sun comes out following a storm I will go outside and look for a rainbow.  I am yet to see one.  I feel like when I do, it might just be a sign that things will be okay.

We still don’t know if I will be able to have another baby.  The risks might be too great.  We hope to have those answers soon.  So for today, maybe, just maybe the picture frame was put there just for me as my sign.  I may have to wait a little longer to see my rainbow, but I will have faith.

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