Kamryn & Laityn: 1 Month Old

 

After 27 days in the NICU, the girls are home in time for their 1 Month birthday! A lot has changed since they have been born, so I will try and update as much as possible. As of right now, we are not supposed to go out into public since their immune systems are compromised. They need to stay out of public places until their due date (June 9) and even a few weeks after that. I am thankful it is not cold or flu season right now! We can go outside, so that helps with the cabin fever a little bit.

They both are on the same feeding schedule of eating every 3 hours. They can eat sooner if they want, but they can't go longer than that. This means lots of waking up sleeping babies and lack of sleep for Mom and Dad! If you feed both by yourself it takes atleast an hour, and then I usually pump. So when they need to eat ever 3 hours, the most sleep I get at a time is about 1.5 hour spans. It is exhausting, but we know its best for the girls. They have been exclusively on breast milk since they have been born. I do have to fortify the milk in order to make it 22 calorie. I do this by adding a special preemie formula called "neosure" to the milk in order to give it the extra calories they need. The strict feeding schedule and fortifying the milk is so they can gain weight at a quicker rate. They both eat about 2oz (60ccs) at a time. They have come a long way with bottling. I remember their first bottles - only 5ccs at a time and it would wipe them out!

They are both still sleepy and don't quite act like newborns yet. We will always have an adjusted age for them and it could take about 9 months - 1 year before they catch up with kids their own age. The girls are starting to look more alike every day and sometimes we get confused! Good thing Laityn's hair is falling out - its a good distinction between them! They are both meeting the milestones of a 1 week old - holding up their heads momentarily and blinking when bright lights are turned on. Here are some other updates to each girl:

Kamryn:

• 6lbs 11oz, 20" long

• Small PDA in her heart has been closed. She still has left and right ventricular hypertrophy (thickening of the ventricles in the heart), but it is resolving itself and will have a follow up about 6 months of age. This was due to the excessive amount of blood from TTTS and how hard her poor little heart had to work

• Choroid plexus cysts on the head scan have resolved itself

• Sometimes she forgets to breathe while bottling, but we watch her closely and pace her often

•  Apgar at 1 minute: 8, Apgar at 5 minutes: 9

Laityn:

• 6lbs 2oz 19.5" long

• Still has a choroid plexus cyst, but it doesn't seem to be an issue at this point

• Has a small chance of having Cystic Fibrosis - will be performing a sweat chloride to confirm whether she has it or not. The "marker" came up on two different newborn scans

• She is the grunt and groaner of the two and more vocal

• Apgar at 1 minute: 0, Apgar at 5 minutes: 5

Other obstacles which have been treated in both:

• Respiratory distress - both were put on ventilators and were given curosurf. Both were eventually weaned off the ventilator and oxygen

• Jaundice - both were on lights for a while but it has since resolved

• Conjunctivitis of the eyes - now they both have clogged ducts

• Hematocrits were both the same once they were discharged

• Both were observed for sepsis and given antibiotics

We are thankful to have them home without any major issues as of yet. After reading the discharge summary, it was quite scary how Laityn came into this world: "0/8 on BPP (Biophysical profile), delivered by emergency c-section. Floppy, pale, not breathing. Put on a mask and suctioned mouth. Listened for breath sounds which were course and distant. Compressions started at 30 seconds of life. After 30 seconds, heart rate was not detected. Intubed and found a faint pulse at <50 adrenaline="" and="" bpm.="" compressions="" continued="" epinephrine="" given.="" heart="" impred="" rate="" to="" was="">100 BPM and color started to improve. Infant was taken to NICU in critical condition."

It brought tears to my eyes to read that and am thankful for all the blessings and answered prayers that day. They both had a very rough start but they are impressing their doctors with how well and big they are growing! We feel completely blessed to have both of them in our lives.

AND once they were discharged they finally made the cradle roll (with some typos!)

Going Home!

Dressed and ready to go!

1st time holding them without all the cords!

Ready to roll!

Macyn meeting her sisters for the first time

How are you feeling?

I get asked this question...a lot. Physically, I am fine. Emotionally, not so much.

I feel like I have been put through the ringer this past three weeks. An emergency c-section, a surgical procedure to remove blood clots, and a trip to the ER for an infection, takes a toll on you. It's hard because first and foremost I want to be there for my girls. I had a wake up call with these post-op complications and realized I need to take care of myself, too.

Now that I feel like my health is back on the right track, I am trying to get my emotions in check too. When people say the NICU is a roller coaster, it is an understatement. I don't know if I can fully wrap my mind around what went on that Tuesday and the days after. The hardest part of this entire ordeal was sitting up on the OB floor of the hospital with no babies, but yet seeing all these happy parents being able to have the babies in the room with them. It was one of the loneliest times I have ever experienced. I would sit up in my room and cry, being jealous of the other parents who were able to hold their children. I didn't get to hold either one until they were 4 days old, and it was only for a half hour. In fact, I never heard them cry or saw their eyes open until then either. I was so, so, so, scared they wouldn't know I was their mom.

The first time I held them I couldn't help but cry....and the sense of relief I felt when I realized they knew, I was their mom. I tried to spend most of my days in the hospital down in the NICU, but it was tough when all the doctors have to do their rounds, get medicine, etc. I was often called back up to my room or forced to stay there until all the doctors have seen me. When I found out I had blood clots on Friday night, I was so upset. I just wanted to be down in the NICU with the girls - not stuck in my room. When I didn't pass them, I had a D&C and had to be in the hospital an extra day. It wasn't until 5:00pm six days later than my admittance when I was finally discharged...and the same night I had to leave the hospital without my girls.

Saying goodbye was the hardest part. I went home and sobbed. This continued daily. I would wake up and cry, and I would cry myself to sleep, and sob. I still have my moments now. Just the other night I had a meltdown again. The hardest part is trying to be strong for Macyn back at home. This has been another source of emotion. She needs her Mommy too and its hard for her to understand. She cannot see her sisters until they come home. So every time DH & I want to be at the NICU we need to find a babysitter for her. Now that we are on a schedule of time at home and time in the NICU it seems a little easier. I still miss our family not being together, but I am doing the best I can.

1.5 weeks after they were born I ended up in the ER with an infection. Sweats, chills, fever, high heart rate, low blood pressure were all my symptoms. They pumped me with fluids, did a chest xray, and sent me home on antibiotics. I just broke down, again. I was just grateful that they were able to treat it with antibiotics and I was not contagious.

Besides all these emotions, another one I have is fear that I will not be able to care for these preemies like I should. Its a lot different than caring for a full term baby. They forget to breathe sometimes and it scares me. What if it happens when I am home? I am excited to bring them home, but I am also petrified at the same time. This makes me cry too. I am so thankful that the girls are doing well, but I just wish I could say the same for myself. I am getting by, but this whole situation of living in two places and not knowing when we can be a family is taking a toll.

Amongst all this, I am reminded that God is in control. This is his plans - not mine. I planned everything out from the beginning. We tried for another child when we knew we could afford it...I never punched numbers on what would happen with twins. And to be honest, I still don't know how our finances will look, but I know we can make it work. I also planned to have the girls yesterday, and God had different plans. I know them being premature was nothing I could have avoided, but I still feel guilty that I should have still been pregnant yesterday.

 I don't understand why, and I ask myself this often. Why couldn't they have been born yesterday? Why couldn't they be in the hopsital room with me? Why do I have to be put through this and have it be so hard? Why couldn't I just had healthy, full term babies? Why did they have to have TTTS? Why couldn't I have enjoyed Mother's Day being pregnant and home with Macyn? Why do I feel like I have to choose between my kids at home and my kids at the hospital? Why me? I don't understand God's ways sometimes, but I do know he has been walking by our side this entire time. Nothing that has happened to us was by chance - it was all God's plan and I need to continue in trusting in this journey he has put us on.

Its an emotional roller coaster and I will often find myself crying in joy holding them, crying in pain and hurt, and crying listening to Christian music because I am so thankful. I know it will get better, but its a strange feeling of being down in the dumps and not being able to get out. I have talked to doctors and they have reminded me, "You have been through a lot, you have a lot going on, your hormones are going crazy, and these feelings are normal."

Normal. I need to keep reminding myself of that. People have called me "supermom" but I sure don't feel like one. I often feel like a weak, sobbing parent on the verge of giving up some days. Some days I just need to be held. I finally made myself go to church, and made a beeline out of there once it was over. I am not ready to talk about things, or be bombarded by questions. If anyone who reads this noticed I haven't been exactly conversational, its because I'm just not quite ready. I have gone out in public a couple of times and have run into people I know, and I would be lying if  I said it wasn't hard on me to answer questions. It gets a little better every day, but some days I don't feel like I can keep it together anymore.

This post is getting long, but one day when I was holding the girls a song came up on my Pandora. I haven't ever heard it before, but it had some powerful lyrics. I don't think it was a coincidence this song started playing. It was a good reminder of how God is by our sides:

You were reaching through the storm
Walking on the water
Even when I could not see
In the middle of it all
When I thought You were a thousand miles away
Not for a moment did You forsake me

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me

You were singing in the dark
Whispering Your promise
Even when I could not hear
I was held in Your arms
Carried for a thousand miles to show
Not for a moment did You forsake me

And every step every breath you are there
Every tear every cry every prayer
In my hurt at my worst
When my world falls down
Not for a moment will You forsake me
Even in the dark
Even when it's hard
You will never leave me 

I remind myself of this often and pray often. People always ask how they can help too - we have had some very generous gifts of gas cards, cash, frozen meals, and other gift cards and we are very thankful. Other ways would just be something simple and free: Prayer. Prayer for the girls, our family, travels, the doctors, and the list can go on an on. Sometimes I have so much to pray for I don't know where to begin. It is nice to have support from others and we appreciate everything they (you) have done.

The Story of our Girls

Little did I know that at my 33 week checkup we would be rushed into an emergency c-section and delivering our girls. Here is how the day went (as I can remember):

We had a doctors appointment at 9:00 on Tuesday morning. I have felt terrible this past weekend with lower back pain and an urge to push. I called the clinic on Monday and they told me to mention it at my appointment the next day. DH wasn't able to come along to the appointment, so my dad ended up riding with. Monday we had another one of these annoying April snow storms, so we left bright and early in order to get there in time in case the roads were bad.

We arrived at my appointment about 20 minutes early, and they saw us early as well. That never happens! I first talked to the nurse and told her my symptoms and she suspected possible preterm labor as well and suggested I get checked to see if I am dialated.

Shortly after this we went in for my ultrasound. They were doing a biophysical profile. This was different than the usual ultrasounds as they look for heart rates, fluid, and movement. It was a strange ultrasound especially considering how much they looked at the hearts and especially movement on Baby B. I said to my dad that Baby B wasn't moving much. The ultrasound tech never said anything that would be concerning so I just thought Baby B was sleeping. Shortly thereafter, my Maternal Fetal Medicine doctor came in and did the ultrasound himself. This was a red flag to me since he has never scanned me before.

As he was scanning me, I heard him say, "This is the recipient twin?" And my heart stopped. He then asked me if I felt decreased movement and I said, "yes, but I would do a kick count and it would be okay." Apparently I was only feeling Baby A move, and he responded by saying, "Baby B is very sick and she needs to come out now." I asked him if this was Twin to Twin Transfusion Syndrome (TTTS) and he said, "unfortunately, yes." I asked if I could call my husband and if he would make it for their birth. When I told him he was about 1 hour 20 minutes out, he said he might make it.

What happened next was a whirlwind of emotions and not knowing what was happening. They rushed me over to triage to prep me for my c-section. I arrived at 10:07. They were checking for heart rates and it was then a nurse said, "We need to go. Baby B is in heart failure." My heart sunk again. I didn't really know how serious it was because I JUST saw her heartbeat of 150 bpm about 10 minutes prior. They prepped me so fast and got me to the OR, numbed, and started the c-section. 

At 10:34 (a mere 27 minutes later), Baby A, Kamryn, came out crying. I kept waiting to hear Baby B, Laityn. I never heard her, I never saw her. I didn't even know she was born. My dad was in the OR with me and I asked him and he said, "they are working on her." It wasn't until a few minutes later when we heard a doctor say, "I have a heartbeat."

I saw Kamryn for a very short while and never saw Laityn. They wheeled me into recovery where they told me just how grim it looked for Laityn. She was born with no heartbeat. The instant they took her out they began chest compressions, gave her some epi, and put her on a ventilator. She was gone for about 3 minutes. She even scored a zero on the Apgar rating scale. It wasn't until then I realized how serious this TTTS was. I essentially gave birth to a stillborn, and they revived her. Eventually they had to put Kamryn on a ventilator as well.

After sitting in recovery for 2-3 hours, Josh then arriving, they brought me down to the NICU to see my girls for the first time. It wasn't a pretty sight, but all I wanted was to see my girls. The girls each had two nurses and a doctor assigned to each. They were in extremely critical condition. Laityn had to have blood transfusions and platelets. Kamryn needed to have her blood removed and replaced with saline since she had too much.

Seeing the girls for the first time

After looking back, there were so many God moments that worked out perfectly, or else the end result would have been tragically different. God's timing is perfect:
• Snow storms - had it not been for the storm we would have never have left early, and never been seen early
• Morning appointment - the doctor told me if it would have been later, she would have been gone.
• Miracle workers (doctors) - he had the right 30 people in the OR at the right time. 27 minutes to have a c-section delivery is unheard of....in fact, people were still talking about it a few days later
• Location - the fact I was in Sioux Falls. If I would have been at my local hospital I would have never made it in time to have the girls
• Stage IV TTTS: Stage IV is heart failure and has a 60%-100% mortality rate in the donor twin (Laityn). Stage V is death.
• My Doctor: He said he has never seen TTTS develop this severely this quickly. 32 weeks there was no sign. 33 weeks we almost lost one of our girls

Tons of prayers answered in the unknown times. I didnt know what to pray for while laying on the table. All I prayed was that my girls would be okay and not taken from me. I don't remember what words I prayed, but I just prayed for the girls. Somehow through the tears he hear our calls and blessed us with two beautiful daughters:

Kamryn Grace: 5lbs 14oz, 18.5" long, 10:34 AM

 Laityn Hope: 4lbs 14oz, 18.25" long, 10:35 AM

(I plan on updating more - they are doing much better! I will try update soon)

30-33 Weeks

30 Weeks (left), 32 Weeks (right)

I have been slacking on getting updates in a reasonable amount of time. I am back to the extreme tiredness that I had during the 1st trimester. Add that along with getting up 6+ times per night due to pain, bathroom breaks, and heartburn = one exhausted mama. So, as a result, blogging has taken a back burner.

We have had a couple of more "eventful" things happen these past few weeks. First, at my 30 week appointment I was experiencing low blood pressure. 108/66 to be exact. I even got sick and light headed during my ultrasound. We decided to alter a couple of meds to see if we could get it back up so I had to monitor it for a week.

Well, it did jump up quite a bit from that level. It is now consistently in the 140s-150s/ 75-85. I wasn't sure if this was too high, so I was required to do a 24 hour urine protein test. I passed so no pre eclampsia for now. I still monitor my blood pressure daily to make sure it isn't getting too high.

I will also be starting weekly appointments. We took a tour of the birth center at my 32 week one and its definitely getting more real. Hard to believe in less than 4 weeks we will have two more people in our family! Macyn asks daily if today is "the day" and I always have to tell her no. I just hope she adjusts well once they are here! The babies continue to grow like weeds, and here are the latest stats:

30 Weeks: Baby A 4lbs 4oz, Baby B 4lbs 7oz

32 Weeks: Baby A 4lbs 15oz, Baby B 4lbs 13oz

Little miss chubby cheeks :)

And I am starting to feel miserable. I have been doing so well thus far and I am definitely starting to feel it. I just keep telling myself - 3 more weeks! And to those of you wondering, yes, I am still working full time. And yes, I am huge. Today in church someone told me that, "I thought you were going to head to the hospital any time this morning!"

And I have had kids in Macyn's daycare room run up to me and ask what is wrong with my stomach. I also had another boy comment that "you need to go to the hospital now and get popped!"

I know they are just kids, but yes, I know I'm huge. You don't have to always point it out :)

Snowman Family

The other night while DH & I were at Bible study, my parents came over to watch Macyn. She really wanted to play in the snow so Macyn decided she wanted to make a "snowman family like hers." They all had to hold hands too. Its cute how she realizes we will soon be a family of five!

Kid's Carnival

Our church held a kid's carnival along with a soup supper. This is always a fun time to play games, win tickets, and exchange them for prizes. What were Macyn's favorite things?

Plinko!

And a manicure! She's definitely a girly girl!