Life after the NICU

Sam is home! Praise the Lord! We brought our baby boy home Monday afternoon. We were so excited to finally be leaving the NICU after 18 days, but it was also slightly terrifying. I was finally feeling how all new parents must feel when they bring their baby home.

1. Did we really make this thing? The fact that Sam was in my belly less than 3 weeks ago and is now here and thriving (and so stinkin adorable) absolutely blows my mind.

2. Is he eating enough? I feel like I could group this question into an "is he eating/pooping/sleeping/peeing enough, but once you have a baby in the NICU, the scheduling for eating becomes something else entirely. Everything in the NICU is strictly scheduled and enforced. He would have to eat a minimum of 35cc within 20 minutes, or else they'd have to look at putting the feeding tube back in. After his crazy intense day of transitions last week (open bed, all mouth feeds, circumcision) he had 2 bad feeds. He ate 18cc and then 26cc and they had to put his feeding tube back in as a precaution. I understand it, but it doesn't make it any easier to transition from the NICU to home. It's hard for me to nurse him when he has trouble latching and gets tired and I can tell he isn't getting close to his 45cc that he eats by mouth. It's hard for me not to be a milk nazi, but we are working on it.

3. Is he still breathing? Chase and I must check him every half hour or so just to make sure he's still breathing. Again, when he was in the NICU, there was a machine right above his bed to tell us his pulse and how well he was breathing. It's wonderful to not have the alarms going off, but it can also be scary.

4. How should I dress him so he doesn't freeze? We like our apartment COLD at night. I mean put on a sweater and slippers if you get out bed because it is cold, cold. However, now that we have Sam, we are trying to keep the air at a cool temperature instead of so cold. But we still are nervous about his temperature, because once again, in the NICU we checked his temperature with every diaper change. He had to stay between 97.5 and 99.5. Our pediatrician told us only to check him if he feels too warm, so we're trying to do just that.

5. Will I ever be able to sleep more than 4 hours again? No, probably not. But that's ok. Chase and I are taking turns and trading shifts so that we can both try to get 4-5 hours of uninterrupted sleep in our wonderful, relaxing, oasis of a bedroom (cue the lavender essential oil, darkening curtains, and fans...it's seriously amazing and I want to go get in bed right NOW).

6. Has there ever been a cuter kid?! I mean, seriously. I can't get enough of him. His little smiles, his tiny little body, I love this kid so much already.

There are loads more questions I'm sure, but because I'm a parent of a newborn, I can't remember them haha Please continue to send prayers our way. We appreciate them and need them so much.

- Courtney

Updates on Little Sam

First of all, thank you for all of your support and love. Through all of your visits, texts, phone calls, dinners, etc. we have felt so loved!! We can't wait to bring Sam home because we know you all will want to love on him even more.

So, updates:

Last time I updated you, Sam was under phototherapy (those blue lights to help his jaundice go away). They took him off of the phototherapy, but he had to go back under for a few days last weekend because his billirubin levels went back up. This is pretty typical, but now they are very low so hopefully he is done for good! So, now Sam is working on 3 things before he can go home: Temperature, Feeding, No Deceleration. 

Temperature: They were slowly weaning Sam's temperature so that he could come out of the isolette. So the nurses would take his temperature every 3 hours. If his temp was 98 or higher, they would lower the temp in the isolette by .5 degrees C. If his temp was 99 or higher, they would lower the temp by 1 degree. So he started with the temp in the isolette at 31. It took it a while to be lowered to 27 (which is the goal), and once he got to 27, he had to stay in the isolette in maintenance mode for 24 hours. He was able to do that! So, he was moved to an open bed where he would be fully maintaining his own body temp with no warming action. 

Feeding: Sam was doing every other feeding by mouth (either breast or bottle) and he was doing SUCH a good job! They decided to increase his feeds to all by mouth (which is a pretty big deal). He was having to work harder to get his food since he had to use all those muscles every three hours. A nurse in the NICU told me that a baby feeding was equivalent to him running a mile. It's tough work..no wonder he would fall asleep afterwards!

No Deceleration: Sam has to maintain his temp and feedings with no deceleration in his heart rate or breathing.

He was doing all of the above and doing a fabulous job until yesterday. Yesterday was a BIG day. Sam was able to transition to the open bed, all mouth feedings, and my sweet little boy was circumcised. Talk about a rough day for such a little man! Needless to say, Sam was tired from having to work so hard to keep his temp up, eating, and from the exhaustion of the surgery. So, he didn't eat very well at his 3 pm feeding. He only ate about 18 out of the required 35 cc, and at 6 pm he only ate 28/35cc. So, his feeding tube had to be put back in as a precaution. His nurse did tell me that at 9pm he ate 40/35cc and that she hasn't had to use the feeding tube at all! He has done really well all day today too :)

He also had to go back in the isolette because his temp got down to 97.2. He has to stay between 97.5 and 99.5. So, we started the process of weaning and maintaining all over again. He was able to be weaned to 27 degrees at noon today. So, he will have to maintain his temp until noon tomorrow. Then, he can be put in an open bed and will need to maintain his temp for 48 hours.

He also has to pass a car seat challenge. Sam will sit in his car seat for 1.5 hours to make sure that he maintains his temp and has no decelerations.

Once he passes all of these tests we will be able to bring him home...It seems so close, yet so far away! I'm glad he is getting great care and we aren't in a hurry for him to come home because if something were to happen, and he had to go back to the hospital, he couldn't go back to the nicu, he would go to pediatrics...and we don't want that. So, he can take his time because that means that when he comes home, he is home to stay. 

Please continue praying for our little man, all of the nurses and doctors taking such great care of him, and for our patience as we anxiously await his homecoming.

Unbelievably Blessed

Oh. My. Goodness.

Never in my life have I been this exhausted and overwhelmingly happy at the same time. I can only explain it as a new parental high. Our lives have completely changed since last Thursday, and I think we're doing a pretty good job adjusting. I'd love to update you on how everything has been going so far.

Thursday February 19th = Happy Birthday Alex and Sam. I will be sharing all about our birth story later, but I do want to say thank you to all of my amazing work friends and family who helped coordinate fundraisers, made donations, and spent time making sure that the boys' delivery was perfectly captured by a professional birth photographer. I cannot express how grateful I am to have had Tammy available to capture my labor and delivery. Because I had a c section, I wasn't able to immediately hold or really see my babies. Chase was able to go back with the boys right away, and Tammy was able to go as well. She has captured images and moments of my little Alex's life that I wasn't able to see, and I know I will cherish those moments caught on film for the rest of my life.

I want to share more about my sweet oldest son, Alex, but I can't stop crying as I'm typing this, so I think that will also have to wait for another time. All I can say is that he was loved every single moment of his life here on Earth and he was held the entire time by those who love him and want only the best for him, which is what he has now. The only way I think that we are able to get through this is because of our faith in Christ. Knowing that death here on Earth is not the end and that Jesus has gone before us and prepared a place for us gives me a peace that truly passes all understanding. I know that Alex is being cared for by someone who loves him even more than me and I'm just so thankful that God chose me to be his mommy.

Now for the updates on our little miracle, Samuel Ryan McGarity. Sam weighed 4 lbs 10 oz at birth, which was about 10 oz more than I thought he would weigh. He was very pink at birth and was already joking around with the doctors. (When they broke his bag of water and started suction, he grabbed the suction tube in the womb and didn't want to let go haha!) He was taken back to the NICU as a precaution because he was born at 33 weeks and 6 days. He was having to work a little too hard to breathe, so they decided to admit him. I had a steroid shot before delivery to help with his lungs, but he needed a little bit more help, so they gave him some surfactant to help his lungs expand. He was also put on an oxygen tube giving him 27% oxygen. Sam also has an iv that has to be secured with a splint looking object because he loves to try and pull it out.

The NICU doctor told us that Sam could potentially be in the NICU for up to two weeks, which shocked Chase at first. We thought that as long as his weight was above 4 pounds that we would be able to take him home. Now we know a little bit better as he has a long list of tests and milestones that he will have to pass before we are able to take him home. It is challenging going up to the hospital multiple times day and night to hold and feed him, and trying to schedule times for me to eat and pump, but it is so worth it, and he is making great progress.

We started feeds through a tube through his mouth right to his tummy on Sunday, and he has been tolerating them pretty well. He is having a little trouble making sure that all of his food goes from his tummy to the rest of his digestive track, but they are thinking he is just a little immature and that it'll get better the more he eats and grows. He also has a hard time remembering to breath when he goes to town on his pacifier.

They've slowly lowered his oxygen level and as of yesterday morning, he is completely off any extra oxygen!! He's been pretty stable, even when I've tried to nurse him (which is incredible and a whole entire new post), which he's done very well with so far!

He does have some jaundice so he will have to stay under the blue lights and get his phototherapy until his levels are lower. He looks so cute with his little sunglass shades :) This does make it a little harder as far as holding him, because I have to limit it to 30 minutes every 12 hours. Luckily I get a little lead way since he is starting to nurse now, but I can't wait until he is home and we can hold him all the time.

So, now we are waiting on Sam to continue to gain weight and feed well, have more bowel movements to get that nasty meconium out, maintain his body temperature when not under the warmer, and for his jaundice level to go down. He has some other tests that he'll have to pass before he is fully discharged, but we know he will ace them. I can't believe how quickly he's been progressing so we are hoping that he might be able to come home by this weekend (eek!).

I will keep updating as I can (sleep is a precious commodity, so I try to get it whenever I can). I just wanted to say thank you again to everyone who has shared our story and prayed for us. There is no way we would be handling everything as well as we are without your thoughts and prayers, so please keep them coming. I also want to thank everyone who visited us in the hospital, brought us a meal, sent a thoughtful text or left a facebook comment, and those who have given us space to figure out this new parent/family thing. We love and appreciate everything more than we can express, and feel so blessed to have so many great family and friends in our life and in Sam's. You all are the best.

- Courtney

Recent updates from the hospital

The magnesium has been stopped! Hallelujah! That stuff is the worst, but it did get my contractions to slow way down. So now the plan is to take Motrin to make sure contractions are chilled out and to GO HOME TOMORROW!! Yay!! Hoping that everything goes well tonight and tomorrow morning so that I can go home and really rest :) thanks for all the prayers!! 

Hospital Updates

First of all I want to say thank you for all of your prayers and words of encouragement. I was very nervous about sharing Alex's story but I felt relieved that we had so many people, many that I've never even met, in our corner and interceding for us. I also want to thank all of the brave people who have shared similar stories with us. I pray that I can find strength and encouragement through your story and that the Lord continues to comfort and heal you. Thank you all again. 

So, hospital updates. 

Wednesday afternoon we went for our weekly ultrasound and monitoring. It's amazing to me how challenging the ultrasounds are now that the boys are getting so big! We were able to get a weight estimate on Sam - 3.4 lbs! It's too hard to get accurate measurement son Alex because of his condition, so he will be our little mystery until he arrives. 

Speaking of arrival...while I was having my monitoring done, I was having multiple contractions in a rhythmic pattern.  I've been having these for weeks now but since there is no pain, I haven't paid any attention to them. But just to be sure, the nurse thought it would be a good idea to check the length of my cervix via internal ultrasound. (I had been checking "manually" aka fingers to your throat, the week before and was closed so I didn't think much of being checked this week) so, they checked my cervical length and it was only 5mm. A healthy length is 25mm. So they were nervous and so was I. The doctor decided to move me to the hospital to administer meds to slow down the contractions and continue to monitor my cervix for dilation. 

So we moved to the hospital at about 4:30 and have just had SO much fun since then. Here is the lowdown:

- started iv of basic fluids

- was cleared to eat some dinner (hello Wendy's! Thanks to the FIL)

- had my cervix checked via speculum (love that!) was about 1 cm 

- got moved to an actual room instead of a triage room

- started magnesium in my iv, then noticed immediately that my iv site was itching and my arm had swollen up. The fluid was going into my arm. So scary, but everything was fine) 

- got new iv site on my right hand and started a strong drip of magnesium (which makes you feel like you have the flu. Hot all over, burning and watery eyes, muscle soreness, all the fun stuff)

- changed to slow drip of magnesium (much better but still fever like)

- started a new antibiotic drip for an bacterial infection I have

- had a steroid shot at midnight to help with the babies' lungs just in case

- had to insert progesterone capsules into my lady tunnel

- changed rooms 

- got hooked up to some nice compression socks to make sure my circulation was good

All of this while also having a blood pressure cuff, pulse of monitor, and baby/contraction monitoring on the entire time. Needless to say, it is super fun when I try to get up to pee. 

The doctors and new nurses will be making their rounds soon so I will update again later. As far as we know right now we will have to be here until at least midnight because that is when I will get my second steroid shot. They might keep me on the magnesium for 24 hours, so we will check that also. 

Until the next lovely cervical check,

Courtney

Monthly Dates with the Husband

I always struggle with what to get my husband for Christmas. Do you?

So, this year, I decided to get him something that would keep giving all year long and would include something important to both of us - spending time together. We both prefer experiences over material things, so planning monthly dates was something that seemed perfect.

I started with lots of research on pinterest on what some great date ideas would be, then got my envelopes together. I wrote poems for each of the month's gifts and bought some little things to go along with some of the dates. Here is the date for January. :) 

We love to go to a Rockets game once a year, but this year, the timing was just off, so I decided to bring the game to him. 

I started with the snacks. I love to get nachos, and he loves to have pretzel dogs. So I made both. YUM! 

The next step to this being an awesome date was the Rockets tumblers. Chase's brother and his family go to Houston every year for Christmas (so jealous). This year they were able to go to a Rockets game, so I conspired with them to buy some of the tumblers that they sell drinks in. Chase LOVED getting the tumblers as a gift since we don't have any that are for the Rockets. 

The game turned out to be not so great, but we had a fun time on our date :) Can't wait for February! 

- Courtney

The Game Changer

Our 12 week appointment came so quickly. I had been having dreams about getting to see our babies (ah!) again and I really hoped that we could have another ultrasound, but I wasn’t sure how frequently we would be getting ultrasounds. When we first got to the appointment, we were taken back into the room and had a normal office visit. Before the doctor came in, we were told that they were going to do an ultrasound after all, just to make sure that both babies heartbeats were seen since using a Doppler to hear can be a little tricky with two babies. (They wanted to make sure they heard both of them distinctly and weren’t just hearing one heartbeat two separate times). We were so excited to get to see our little peanuts again!

We went in for the ultrasound and there was a student there doing the ultrasound and our regular sonographer also. The ultrasound began and it was incredible! They had grown so much! We could actually see legs and arms and heads and heartbeats. They looked more like little humans and were wiggling like crazy! Chase and I fell in love with our little wiggle worms and could've stared at that screen all day.

The student asked the sonographer to take over because she was having a hard time looking at one of the twins. The sonographer stepped in and they did some more scans. We didn’t think anything of it, because we were just so overjoyed watching them both move.

We went back into the room and waited for my doctor to come in. When she did, we talked about things as usual and I asked a couple of questions about some aches and pains (which are just a lovely, normal part of pregnancy). At the very end of the appointment, she told Chase and I that she wanted us to see a specialist because they couldn’t get a good view of Baby A and that he/she was measuring about a week and a half behind Baby B. She was a little concerned because with our twins being fraternal and each having their own placenta, there shouldn’t be any risk of one twin taking more nutrients than the other, especially not this early in pregnancy.

We were instantly terrified. Our brains went through worst case scenarios faster than anything else and we shared with our families that we were nervous and scared and weren’t sure what was going on. We were reassured by our friends and family that everything was going to be ok and that it would be a good thing going to the perinatologist because they had better equipment.

That weekend waiting was one of the longest waiting periods of my life. We got a call that they would be able to see us the following Monday (only four days after our appointment at my regular doctor). That also scared me. What was so serious that they were able to get us in that quickly? What would we find out?

I prayed so hard that weekend that everything would be ok, but I had a horrible feeling in my stomach that something was wrong. I kept staring at my ultrasound pictures and wondering what could be wrong. I did probably one of the worst things you can do when you’re worried about something, especially a medical something, I googled it. I looked at pictures of other ultrasounds with babies who had Down’s syndrome, Trisomy 18, and all other kinds of chromosomal disorders and genetic disorders, and came across something that I prayed it wasn’t – anencephaly.

We went to the appointment at Savannah Perinatology that following Monday. My heartbeat was racing, but I tried to stay positive and pray that everything would be alright. We went back for the ultrasound and my eyes were again glued to the screen, but this time, it was for a different reason. I was looking for little baby A’s head. I knew everything was ok with him/her and I wanted to see. She started with Baby B and showed us his head and heartbeat and limbs (everything looked perfect), then moved on to Baby A. As soon as she shifted over, I could tell that he was a lot smaller. Then I saw his head. It didn’t look like Baby B’s. It was really odd, but the only way I can describe what I saw was that it looked like roots or branches coming from his head. Where there was supposed to be a nice, thick white line showing his skull, there was nothing but the branch looking things. Chase and I immediately started tearing up and trying to choke back the tears. That’s when the sonographer said, “I’m so sorry. I’m not supposed to tell you this, but I can’t just watch you knowing what I see.” She showed us the difference in both of their skulls, then told us that the doctor would be in shortly to see us.

We waited and cried, and cried some more. We still didn’t know what was happening or why it was happening. What did all of this mean? Was our baby going to live? Was it something that I did that made this happen? Why did this happen? Could it be fixed?

The doctor came in to see us. He sat down in his stool and told us that unfortunately, the ultrasounds were showing that Baby A had a condition called anencephaly. I immediately broke down into sobs while Chase was asking what anencephaly was. I told him that it was a fatal condition. We lost it.

To me, everything the doctor said after that felt like knives being stuck into a numb person. I couldn’t believe that this was happening to us. To our perfect babies.

He explained that anencephaly is a rare neural tube defect in which the neural tube (the tube that the head and body grows from) failed to close completely at the top. He explained that this happened about 25 days after conception, before we even knew that we were pregnant. There was nothing that we did that caused this, and unfortunately nothing that we could do to fix it either. The skull of baby A would not form or grow and what looked like the tree branches were parts of his/her brain. Our baby, if he/she grew to full term, would most likely not survive childbirth, and if he/she did, we would most likely have minutes, maybe hours with him/her. 

We talked with a genetic counselor and more with the doctor then, but I hardly remember most of it. All I knew was that everything was different. All of the excitement and joy I had experienced was suddenly tainted. I wondered what the rest of the pregnancy would be like, if Baby A would make it to our next appointment, or if we would get to find out the gender, or if he/she would make it to birth. I wondered how we would tell our family and friends, and how we would tell the rest of the world. How, if baby A made it to birth, how I would be able to bury my baby. How could we even afford a burial? Would we always be thinking of this baby when we looked at his/her brother or sister? How would we get through this?

I had so many questions. Many of them now have answers, but sadly some just don't. I'd like to tell you that everything is fine now and that the diagnosis was a mistake, but it wasn't. I will tell you that although finding out about Alex's condition was devastating, we haven't lost our faith. In the posts to come I will be sharing more about my growing faith and how this pivotal circumstance has challenged me in ways that I never thought possible. I won't be sharing things from Chase's perspective because that is his own story to tell. We would just ask that you pray for Alex's healing, but also that our family would have peace with whatever is in God's will. We don't want attention or recognition (especially in the form of a facebook group), but would love if you shared our story so that others could pray and in the hopes that our story might touch someone else going through something similar. Thank you.

- Courtney