Friday, December 27, 2013

December


Wow, where has December gone?? We had a busy month! We moved into our new house, had lots of Dr appointments, and of course, we had Christmas in there! 
    All of our Dr appointments went well. The babies had their 2nd of 5 RSV shots, and Clayre saw the Dr about her oxygen. We go down on it a little bit everyday, and his goal is to have her weaned completely by the time we see him again the 17th:) Her eye appointment went well too. Babies who are born prematurely and on oxygen, can sometimes develop what they call ROP, and there are varying degrees of severity of it. The way is was described to me, is that it's basically when veins in the eyes curl up, and it can cause eye problems, and even blindness. Babies are checked weekly or bi weekly for it while in the NICU. It usually corrects itself, but in some cases, medicine or laser surgery needs to be done. Clayre's ROP was pretty bad when she was in the NICU, and the Dr began to talk about interventions. He has continued to watch it though, and at her last appointment. It is almost fully corrected!! He wants to see her again in a month, and then hopefully we see a full improvement! Woohoo! She has an appointment with the cardiologist in January too, and we are hoping to get the news that her PDA is closed also! Poor kids and all of their Dr appointments, they definitely keep us busy! 
    Like I mentioned, we finally got moved into our new house! We love it! Here are a few pics of the babies nursery! 
They are still sleeping in their rock n plays in our room, but napping in their cribs and seem to really like them! I think their room turned out really cute! Thanks to our sweet friends for our shower decorations, and our Aunts for our signs and paintings! We are lucky to have such creative ladies in our lives:)
     We celebrated Christmas on a low key level this year. Since we are avoiding germs, we didn't get to do our normal Christmas rotation. Instead, we just had our parents, and Curtis' sisters over on Christmas Day! It was a nice day, we had a Mexican food meal, opened gifts, held babies, and shot guns lol! It was a perfect little day! The babies loved having everyone here, but will be glad to celebrate with the whole family next year! 
     I will be back later with 6 month post! Merry Late Christmas and love to all, the babies can't wait to meet ya:)

Thursday, November 28, 2013

Happy Thanksgiving and 5 month update

Happy Thanksgiving! We are skipping out on our big family Thanksgivings today because of germs, but only having a small get together with grandparents and aunts!  That being said, we definitely have a lot to be thankful for this holiday season! 5 months ago, we didn't know if these sweet babies would make it, but look at them now! When I was admitted into Harris 5 months, 1 day ago, I remember the terror I felt! I was only 25 weeks pregnant, there is no way they could come! I remember crying to Curtis telling him how scared I was as I got my steroid shot and was wheeled from my dr office to the triage at Harris. As family trickled in, I remember crying with each one, and them telling me that it was going to be okay! Just a few hours later, I remember the rush to deliver, asking if they were breathing, watching them as they headed to Cooks wrapped up in ziplock bags. and finally being wheeled over to see them. 4 in the morning, after a long night, I just remember sitting in the wheelchair staring at these two little "Barbie doll" sized humans in amazement. They were perfect, small, but perfect. I remember the days after, willing them to open their eyes, praying for them, hoping they would breathe, waiting for them to cry, and just rejoicing over ever milestone! I can't believe that was 5 months ago, I am thankful for each minute that has passed. Some minutes were/are harder than others, but we are living minute by minute! Ok, enough with the sappy stuff! Onto our 5 month update!
Sweet Clayre is weighing in at 9lbs, and 19 1/2 inches! She loves to look around, and swing in her swing. She's only been home for 5 days, but already feels comfortable. She is finally getting used to her brother and likes to be near him. Yet, when he starts swinging his arms, she has finally caught on that she can fight back! She's also trying to roll over, she gets on her side, then she decides that she's not sure what to do about the other arm and gives up! She will get there, I know it! She's also our super sleeper, she would sleep all night without getting up to eat, yet at this point, we are still waking her up to make sure she's getting what she needs, she def doesn't like the middle of the night feeds anymore than we do! After all this little girl was been thru, she is making leaps and bounds! In the hospital, she faced almost ever possible issue that preemies face, but she is getting stronger by the day. Her oxygen requirement is getting lower, and we hope to continue to wean her slowly:) 
Cache is our firecracker! He is weighing in at about 8lb, 10oz, and 21 inches long! He loves to be cuddled and when it's time to be put down, he lets you know how he feels about it. He also lets ya know when he's hungry. You have exactly 5seconds from hungry little boy to a grumpy bear! Sometimes he sleeps about 5 1/2 hours at night without eating, but when he wakes up and realizes it, we are in trouble. He also loves to grab sister's oxygen and pull it out, he's trying to wean her himself! In the beginning we thought he was the chill baby, who would be down for whatever, but their personalities are beginning to change. It's amazing to watch! 

These babies bring so much joy to our lives already, I can't wait to see them grow to love each other and see the relationship they develop. Thanks for your continued thought and prayers! Please remember to thank God today, and everyday, for all of your blessings, and remember what this season is all about!!

Sunday, November 24, 2013

Reunited and it feels so good!


Our family has finally been reunited for good!! Clayre finally broke free of Cook Children's NICU! Our goal was Thansgiving, and I finally decided that it was a hefty goal and had given up on it. Yet, as usual, that little girl proved me sooooo wrong! A light switch turned on Tuesday! She went from taking 50% of her milk to 100% in one day! and hasn't turned back since! I wasn't sure how many days they would make her do that, I was figuring at least a week. Yet, Thursday, our sweet primary nurse was there with us, and wrote a note to the dr. and left it on her chart, all the note said was, "Can they go home this weekend?" I thought she was crazy and that there was no way he'd go along with it. Low and behold, he started working on discharge stuff, and told me what needed to be completed. Curtis and I had to learn how to work her oxygen and machine (yes, she will be on oxygen for a while, her poor lungs), she had to pass car seat test, I had to make appointments, she had to continue to gain weight, and she had to EAT EAT EAT! Well, we got it all completed Friday, besides the car seat test, because she failed it the first time, the test required the baby to sit up in their car seat for 90 min in a chair that simulates movements of a car. The baby must keep their sats (heartrate and oxygenation up) the whole 90 min! She made 62 the first day and started struggling with her breathing, so they had to stop. After a failed test, you must wait 24 hours to do it again. So yesterday, Saturday, we tried it at 12. She struggled a little, so her oxygen was turned up while she was taking the test, and low and behold, she passed!!! At this point, it was 2 o'clock, and Curtis and I are running around trying to get things packed at RMH and the hospital (it's ridiculous how much stuff we accumulated in 150 days). By 4 o'clock, we had checked out of RMH, given our hugs, cried some tears (me), and were on our way home with TWO babies! It was an overwhelming feeling! We had to stop at Sonic, not only had we not eaten lunch, but we had Sonic on our way to the doctor when I went into labor, so it only seemed fitting to have it heading home 150 days later! We made it to mom and dad's, where we will be staying for a week or so, and had a great night of playtime! Both babies seemed so adjusted already! I started getting nervous about how Clayre would act during the night, considering that she'd been in the hospital for 150 days, but she did great! They both slept for a 4 hour stretch after their night feed, and three hours after! Of course my early bird got up bright and early, so we left the room and let sister and daddy sleep in a little! Today has been a great lazy day so far, it's the perfect weather for that! We are rejoicing being home and cannot wait to move into our house in a few days! Like I've said before, thank you so much for following along with us on our NICU journey! We are so blessed by the support of our friends, family, and community! The babies can't wait to meet you all, but due to cold and flu season it may be a few more months:/ Thanks for understanding and being so awesome! We love you all!!i will be keeping up the blog for fun, and myself, so I will try and be back in a few days for a 5 month update! Until then, you can catch me playing with my TWO sweet babies:))
Here are a few pictures of the weekend! 

Mommy, daddy,and babies before Clayre's discharge
Our favorite primary nurse Eireann, she became family! We love her so much and can't wait for her to continue to watch the babies grow!! She was a rock to me during the 150 days, and I couldn't have remained so calm and collected without her!!
Riding home, see...who needs a car seat test? I got this!
The early birds after our first night home, we survived!!

Friday, November 15, 2013

Day in the life of NICU families

People always ask what our day consists of, so here goes! If you don't care to know, no biggie:))

6:30-7:00 Feed, burp, and diaper Cache-he's such an early bird!

7:00-7:45 Go down to the RMH dining hall for coffee and breakfast, wash bottles and pump parts, and socialize depending on who I see.

7:45-8:30 Get both Cache and myself dressed and presentable.

8:30- Walk or drive to Cooks for the day.

8:30-9:00 Feed Clayre while trying to keep the jealous little man occupied with his pappy.

9:00-9:15 Warm Cache's bottle while he screams.

9:15-9:45 Feed, burp, diaper Cache.

9:45-10:10 Pump.

10:10-10:50 Wash bottles, blog, call mom and Curtis to update, watch a little TV.

10:50-11:00 Diaper, temp check, and get Clayre ready to eat.

11:00-11:45 Feed Clayre.

11:45-12:00 Head to lunch.

12:15-12:45  Feed, burp, diaper Cache.

12:45-1:15 Eat lunch in family lounge with one hand while holding Cache's pappy in with the other.  

1:15-1:45 Pump.

1:45-2:00 Diaper, temp check, and get Clayre ready to eat.

2:00-2:45 Feed Clayre.

2:45-3:15 Playtime on the floor.

3:15-3:45 Feed, burp, and diaper Cache.

3:45-4:15 Cuddle with Clayre

4:15-4:45 Cuddle with Cache

4:45-5:00 Diaper, temp check, and get Clayre ready to eat.

5:00-5:45 Feed Clayre.

5:45-6:05 Pump

6:05-6:15 Start packing up, tell Clayre goodnight, and head back to RMH (it gets dark too dadgum early!)

6:15-6:45 Feed, burp, diaper Cache.

6:45-7:15 See what's for dinner ar RMH and eat.

7:15-7:40 Put Cache in swing and makes bottles for the night/following day. 

7:40 Shower when Cache allows me to.

7:50 PJ time for all

8-9:45 TV/relax/phone call time

9:45-10:15 Feed, burp, diaper Cache and pump.

10:15 Bedtime for all!

1:45 Feed, burp, diaper Cache/pump

4:45 Feed, burp, diaper Cache/pump

Then we do it all over again!

It took me 3 days to type this lol! I wouldn't change it for the world! When our world was flipped upside down on June 27, we knew it would never be the same, and this is proof!!







Prayers!

I definitely could not have made it through the past 141 days without everyone's prayers and sending up my own! God has had his hand in our whole experience undoubtedly!


Wednesday, November 13, 2013

Weekend recap halfway through the week!

I started this on Monday, but am just getting around to finishing it and posting. Hope you are having a happy hump day!!

Friday-Clayre did fairly well on her bottles Friday, she took 2 full ones for me, she won't do that for the nurses. That kind of stresses me out, because there is no possible way for me to be at every feed.  I'm here with her all day, but who knows what they do when I'm not here. I have begun to think that some nurses just "drop" the milk down the tube because they don't want to waste time working with her. It wouldn't be that big of a deal if that wasn't the only thing keeping her here! Sorry, that's my rant for the day:/ We were so glad that GiGi came to surprise us and stay the night Friday, we had fun with her. I got to sleep for a whole 6 hours, I woke up feeling like a new woman! 
I can never portray to you how much this woman means to me, she's my best friend and my rock! She has been such a lifesaver thru our 138 days, whether it be coming to stay the night so I couple sleep, stopping at Target to get me necessities, or just listening to me rant over the phone. I love her to pieces. Her and my dad are so amazing!

Saturday-Saturday morning, we came over the the hospital early. As soon as we got here, Clayre 
took her whole bottle for me of course:) Gamma T (Teresa), who has been my other rock thru this experience, came to visit also. She actually stayed with the babies while mom and I ran for a RESTAURANT lunch, yes it had been that long that it required caps! We ate at Don Pablo's and did some Target shopping. It was a nice little getaway for me for a bit. We were only gone for a little over an hour, but it was needed! Daddy came home from work earlier than usual Saturday night, so Cache and I got to spend some quality time with him! 

Sunday-Daddy enjoyed some time with the babies!

That's my life right there! He is so good with them, I love watching them all interact! Sunday was just a lazy day for us all until daddy had to go back to work! We did make a trip to the store to buy Cache a couple of new outfits, yes, his newborn stuff is getting too small already! He's growing so stinking fast! Clayre isn't too far behind, I bet she has a couple of weeks left in her newborns!

Well, that's our weekend update on Wednesday! The Weavers say thanks once again for everything!!

Friday, November 8, 2013

Quality time!

The last couple of days have been really good for Miss Clayre! She is taking about 75% of her bottles (when I feed her), and her breathing is getting better! She maybe finally picking it up! We can go home on oxygen, eating on the other hand, has got to come before we can go home.  Let's go girlfriend!!! Both babies has their synagis shots today. This shot will be a once a month (for 5 months) shot to protect against RSV. The shot is only covered by insurance if a baby is born at less than 2lb-2oz, it is a $2000 shot!!! Of course we qualify, even if we didn't, we would be getting it! I've heard too many stories about preemies and RSV, it can be fatal for them because of their weak lungs. For full term babies/toddlers, it is just an upper respiratory infection with a cough and cold symptoms. For preemies, it is way more severe.  The shot doesn't mean that we won't get it, it just means that if we happen to, it will be less severe. We can't afford more time here, so we are going to do everything in our power to avoid bringing germs into the home, this means not being out and about for a while too:/ RSV is spread by someone with a common cold, and we can't risk being close to someone who is sick, or has any visible/non visible symptoms.  I guess we will be spending lots of quality family time together! Lol. 

Speaking of quality time, we had some tummy/playmat time today. 

The babies loved being in the floor playing. Cache was cooing at his sister and trying to take her oxygen tubes out of her nose, and she was kicking him! It's already started :) 

Everyday, I look at these babies and thank God for being with us these past 135 days, and sending us amazing nurses and doctors to care for our sweet babies! We have been so blessed by our staff at Cooks, they've become family!! That being said, I'm ready to say "goodbye, and see ya soon" to them! I guess I'm off for the night! GiGi is here to be on nighttime duty, so momma can have some sleep! Woohoo! Gotta love GiGi time! Happy Friday night! Have a great weekend!!!

Thursday, November 7, 2013

Throwback Thursday posts

I went through our caringbridge and found some posts that already bring back a flood of memories! Man, we've come a long way!



72 hours!

Jun 30, 2013 9:27 AM

Well we hit the 72 hour milestone! As of now, both babies are still on the ventilator as of now. We got over optimistic and put them on a less invasive breathing machine at the beginning, but you don't know unless you try. Cache man gets a little lazy and just forgets to breathe sometimes and needs the push! Clayre has a mind of her own! She lets you know when she's not happy! Poor nurses;) She is just like her Aunt Mindy!! Kidding! They have both had to have blood transfusions, which is totally normal at this stage. Eating is going well, they each get 2ML every 3 hours which is such a tiny amount, but they both seem to be taking it well! We both changed diapers yesterday, so we have proof! Curtis' first diaper changed even found him peed on, guess Cache is trying to prepare him! As for us, we did end up getting a room for us at the Ronald McDonald House about a quarter of a mile from the hospital! It is donation based housing. We have our own little apartment for the next 90 days, including a fridge, microwave, dishwasher, two queen sized beds, it is so nice! I definitely know know what charity to donate to! Well, time to go check on the little ones! Thanks for the continued thoughts and prayers! We love you all and can't wait for you all to meet our sweet miracles!

One step forward, two steps back

Jul 2, 2013 8:56 PM

So today was a little more eventful. Cache was moved to the CPAP machine this morning, hoping to have him breathing entirely on his own, but poor baby just couldn't do it. His lungs and brain aren't quite working together yet, which is typical for 26 weeks babies, and he sometimes forgets that he needs to breathe. The nurse said he'd do so good when we were in the room, yet as soon as we walked away, he would get lazy:/, I wish i could stand by his side all day and night, but its not possible. About an hour ago, the Dr made the decision to put him back on the ventilator to give him a little more developing time before we start the vent again. We feel okay with this decision, because watching your baby stop breathing while there is nothing you can do is gut-wrenching. Other than that, everything else, feedings and whatnot wise, are going well for him. Little Miss Priss got a new IV today. It's called a PIC, and goes to the heart. This allows her to get more nutrition from her food. It was supposed to be an hour long procedure, but the nurse had some difficulties with it, and it ended up taking 3 hours! The poor baby was exhausted and pretty calm from the meds that they had given her when they were doing the procedure, so she want as feisty as she has been! Mommy and Daddy did get out for a bit during the procedure and ran some errands with GiGi and Paw, so it was a nice little change of pace. Hopefully our steps back from today, have us at a turnaround! Once again, thanks for the gifts, donations, prayers, love, and support! We have faith, and know that in a year, this will all be a distant memory!

Life

Aug 17, 2013 11:17 AM

So last night I was thinking about how weird this all feels. Sometimes, I feel like I am just walking in someone else's shoes! This whole experience has been very surreal! Its weird how this has actually become routine, get up, get ready, go to hospital, sit 11 or so hours with the babies, go "home", sleep, then do it all over again! It's crazy to me how this is the new normal! I may not even know what to do when things get back to normal, I take that back, life is never going to be normal again with our little stinkers;) lol. Also, one of the nurses and I were just talking about how most people take little things for granted. For instance, holding your baby for the first time. Most new parents hold them right after delivery, it took us 2 1/2 weeks to get to that point, and only for an hour or so at a time, and with the help of nurses. 7 weeks later, it hasn't changed! Another thing is hearing your child cry, most babies cry at birth, and new parents get to hear that, yet with us, we just got to hear it this week after Cache got off his ventilator. I am not going to lie, I wouldn't trade this life for anything, going through all of this, is going to help us love these sweet babies even more than we would have otherwise! We couldn't do it without all of you, and your love and support! Love to all!



Wednesday, November 6, 2013

RSV and preemies

Just a little picture to explain why we will be hiding out until March, always sanitizing, and limiting visitors! The babies are very ready to meet all of their friends, but we can't take any chances! I'd rather never have to come to this place again:))

Twin four month (one month actual) update

Four months of daily hospital trips, tears, shots, oxygen, medicines, feedings.... I can't believe these sweet babies have been on this earth for four months! In these long four months, these babies have endured, overcome, and persevered! I am amazed at their strength on a daily basis! 

Let's start with Clayre Bear!
She's up to 6lb, 14oz, and 19.6 inches long, every ounce and inch of her is pure diva.  She is a girl who knows what she wants! She is taking her sweet time getting out of the hospital, because nobody is about to rush her! The attention she gets from all of the nurses is a plus in her mind too! She is holding her head up really well, and loves being on her tummy.  It's taken four months, but she also loves being held. She likes to snuggle right in and get a good nap when she is being held! She also is becoming a little more tolerant of her brother. He can get close to her know without her throwing a fit;) The only thing keeping us at the hospital at this point is her eating, she has issue coordinating her sucking, swallowing, and breathing when taking the bottle. Her lungs were so bad from the beginning that the dr says that it's only going to take time.  So, that's what we are doing, letting her take her time. As much as we want to be home, we want her to be ready to be home.  

Now onto Cache Monkey;)
He weighs in at about 7lb, 6oz, and a whopping 22 inches long! He is so long and skinny! He is pure boy! He loves to watch football and hang out! If I didn't have to get him dressed everyday, he'd be perfectly fine hanging out in his undies (diaper) and playing all day! He has physical therapy coming to the RMH to work with him, but is rolling over and holding his head up really well! He surprises me with his strength! He is sleeping better at night, I even sometimes get a 4 hour stretch of sleep! Talk about a refreshed momma on those days! He spends his days at the hospital being "ahhhhed" over by all of the pretty nurses. I think he kind of likes it;). He loves living at RMH and seeing Daisy, the house dog. It's a yellow lab that's head comes right up to his car seat when he's in the stroller! His eyes get really big and he smiles ear to ear! With that being said, I think he'll like being home even better!

As for us as a family, we're doing well, just ready to be home.  We still have 50 days or so left at the RMH, and are hoping to not have to use all of them! We used 78 last time, and when I went to pay our donation to stay, someone had already donated money to cover10 days for us! That was a blessing! Thanks to whoever did that! Well, I guess that's about it! Thanks again for the continued thoughts, prayers, donations, food, and overall support you give us! We hope to be home (in our bubble until the end of March) soon!!


Monday, November 4, 2013

Long time no update



Well, as you can all see, I switched over from caringbridge to blogspot.  This will be easier to keep up with (hopefully), and I can add pictures in my posts! That totally rocks! Well, I don't even know where to begin to update. If you are on my Facebook, you probably know for the most part what is going on, so I will just give a general update for the others! It's been a few weeks, so once again sorry about my rambling! Well, Cache escaped the hospital on October 14 (GiGi's birthday)! He was supposed to be discharged the week before, but the night before discharge, had an A3B3 (stopped breathing and had to be stimulated ) during a feed. That was not normal for him, so they ran some tests and found he had an ear infection.  The infection was causing pressure that was causing him to choke on his milk, and stop breathing.  That alone bought us 7 more days in the NICU, plus they started antibiotics for the infection. I was pretty down and out that day about him not being released, but if rather have had that happen at the hospital, than to me at RMH. So anyways, he was discharged that day, which was awesome, because Curtis was here from work to take him out of there with me!

He love his first ride in the fire truck! It was hard to leave sister, but we were glad to have him with us. We have continued to go visit sister! She is up to 6lb, 13 oz, and growing daily. She is only really working on coordinating eating with breathing, and our hopes are that she can get that down by Thanksgiving! Our goal was Halloween, but that came and went! We had a good Halloween in the hospital though!
They rested up for all night of trick or treating:) On Halloween, Cache also had a photoshoot for the Fort Worth Stock Show and Rodeo. On February 5, the stock show is having Cooks NICU day, all of the proceeds from ticket sales to the rodeo that day (both shows), goes to the NICU! They needed a NICU graduate to be the "face" of NICU day. This means, Cache will be on posters, flyers, mail outs, and whatever else that they can use to advertise! Look for him:) He looked awfully cute in his cowboy "get up"! 
Well, that's all I can think of for now! I will leave you with a couple of pictures that a hospital photographer took:) I will be back later tonight or tomorrow to tell ya all about our baby shower/showers:)