Counting My Blessings

"If I see another balloon, I'm going to scream." This is the thought I have had lately as I walk to or from the NICU passing all the happy families bringing flowers, teddy bears, and balloons to a new mom celebrating a full-term newborn. I've actually had the evil thought of carrying a stick pin around with me to pop the balloons. I know it's horrible, but I have to confess that I have thought it. I'm happy for these people. I really am. After all, I've been there. I've had that experience too.

I know that when you are trying to conceive, all you see around you are pregnant women. It begins to seem that everyone is pregnant but you. The truth is they have always been there, you just start noticing them more when it's something you want. This is the same situation when going to the NICU. I constantly see the proud grandparents toting their balloons and teddy bears, the fatigued fathers carrying in their car seats, the proud mothers being wheeled out to their cars to take their babies home. It's like a constant movie of the things I'm not allowed.

The other day I was taking the elevator up to the NICU. I usually take the stairs, but I was in a hurry. Just as the doors were about to close, a lady was rushing in carrying nothing less than a teddy bear, flowers, and a gigantic balloon. This gigantic balloon was literally IN MY FACE as if taunting me of what I could not have. "Seriously, God?" Are you trying to make me crazy? Are you not already testing my patience enough? How much more do you think I can handle?

Then a few days later, Brenna was walking into the hospital with me. We were passing by the fertility clinic, and she was skipping along. A couple came out of the doors and looked at Brenna with a smile and what I interpreted as longing. At that moment, I thought here I am blessed three times over and this couple may just want to be pregnant for once. I was given a beautiful gift from heaven three years ago with Brenna's birth. Then, we decided to try for one more. We only asked for one, but God gave us two more - a double blessing!

God may be testing my patience, but He is also teaching me to be thankful and to count my blessings, of which I have an abundance. (Or on a side note, maybe my lesson is to take the stairs! Ha! Ha!)

12 Weeks Old

Cade smiling while Nanny is holding him. Maybe he just had gas, but it looks like a smile to me!

Cade showing us how big he is. He is in a newborn sleeper instead of a preemie one. Notice how the sleeves are rolled up though and his feet only reach just past the knees of the sleeper.

Cade holding Daddy's finger at just a few days old above, and Cade holding Daddy's finger at 12 weeks old below.

Camdyn sleeping so sweetly. She just got rid of those tubes in her mouth when she was moved to 2 liters on the cannula. I think she is going to be so much happier without those in her mouth.

Brenna looking into Cade's crib. He was looking at her too. So cute!

Brenna helping take Cade's temperature.

This was supposed to be a cute picture of my 3 kiddos, but it didn't really work out. I thought it was too funny, so I had to post it. Camdyn is sticking out her tongue, Cade is looking off to the side, and Brenna has a fake smile. I think this may be an indication of what is to come. I hope they will all cooperate for a picture at some point.


Update -

Both Camdyn and Cade are doing remarkably well. We are so thrilled with all the progress they have made. They prove to me every day how strong they are. They are both in the low 20s on oxygen. Tonight when we visited, they were both on 21%! (That's the best you can be; it's what we breathe.) Cade has been lowered to 1 liter on his nasal cannula, and Camdyn has been lowered to 2 liters on hers.

At 2 liters, she was able to get rid of the feeding tube and vent tube in her mouth. They both now have the feeding tubes in their nose which sounds really bad, but it is actually much more comfortable for them. This also allows them to breastfeed/bottle feed. Cade is doing better with breast and bottle feeding. He now gets 2 bottles per day and breastfed once a day. He is still not taking all of the bottles, so he will not be given more bottle feeds until he does. The rest of his feeds are given through the tube. Camdyn will not be able to start breast and bottle feeding until she is back to bolus feeds (feedings at interval times). Right now she is on continuous feeds. She was put back on continuous feeds after having the big brady/apnea episode. They don't want to stress her tummy. She really needs to grow and get stronger before they will put her back on bolus feeds.

Cade now weighs 5 lbs. 3 oz, and Camdyn weighs 3 lbs. 10 oz. When they stopped her feeds and put her on the IV as a precaution for a possible infection, that really set her back on gaining weight. Luckily, she did not have an infection, but they had to work their way back up to full feeds with her. Even though it was hard to see her not gaining weight, I know that the doctors know what's best. She is now getting breast milk with 24 calorie formula added to help her gain weight. Cade is on a 22 calorie formula added to the breast milk. Camdyn is still not in an open crib. They have to be 4 lbs and able to maintain their temperature to get moved to an open crib. So, that is her next goal.

Our babies are almost into the "feeder/grower" category of NICU babies. That is actually what they call the babies who no longer need ventilators, CPAP, or high flow cannulas. They can still be on a low flow or low oxygen. These are the babies who just need to learn to take all their feeds by breast or bottle and grow. Cade is pretty much a "feeder/grower", but Camdyn is not quite there yet. Doesn't "feeder/grower" sound like raising livestock? Although it sounds terrible, it is a title we will gladly take!

Am I crazy pretending to be normal or normal pretending to be crazy?

I'm not sure if I am crazy for pretending to be normal or normal for pretending to be crazy? I have encountered several situations where I just act like everything is normal because I don't want to go into the whole long story.

I went to get a much needed massage a few weeks ago. I asked for a pillow to put under my chest since my breasts are tender from pumping. I said, "Can I get a pillow for my chest since I am breastfeeding?" I was not at that point actually breastfeeding; it was just easier to say that instead of saying pumping. The therapist said, "Oh, you are breastfeeding. I'm sure that keeps you busy." I just said, "yes, it does." I spared her the whole story. What would she have said if I said, "Well, actually I'm not breastfeeding. I'm pumping around the clock to supply milk for my micro-preemies who are fed through a feeding tube. I won't be able to breastfeed them for weeks. In fact, I was just recently able to hold them." See how much easier it is to just pretend to be crazy.

I bought scrapbooks for the babies. I came up to the register with a pink scrapbook and blue scrapbook in tow. Of course, the cashier said, "Oh, you have twins. How old are they?" I just answered "10 weeks old". She too said, "you must be so busy". I just said, "Yes, I am." What I wanted to say was "You have no idea. My babies are actually not even supposed to be born for another 6 weeks."

Just a few days ago I went to buy Cade some newborn sized clothes, and I bought Camdyn a cute preemie sleeper. When I went to check out, the cashier said, "Oh, you have a preemie." I said, "yes". I did not say, "Well, actually I had two micro-preemies who just recently began to fit in preemie clothes. These newborn sized clothes are for my almost 3 month old son, and my almost 3 month old daughter will still be wearing preemie clothes."

Sometimes it is just easier to pretend I'm crazy. Perhaps, I like to pretend I am normal. At times like these, I like to pretend that I just recently gave birth to full-term twins who are now home with me. I like to pretend I am able to breast feed them both. When strangers say, "you must be busy," I would like to pretend that is because I am up all night feeding them and rocking them back to sleep instead of busy because I am constantly going to the NICU. So, who is to say what is crazy and what is normal? I would probably actually go crazy if I did not, at times, pretend to be so.

11 weeks old

Camdyn and Cade are now 11 weeks old. They are both doing well. I am so proud of all they have accomplished and how far they have come. Theyare simply AMAZING!

Camdyn is getting back on track now. She is back on nasal cannula. She was put back on 4 liters, and is now down to 3 liters. She started feeds again, but they decided to put her on continuous feeds at a much lower volume to help control the possible reflux episodes. She will have to work her way back up to full feeds. She was getting 32 mL and now she is getting 12 mL. Both babies were given diuretics to help rid them of excess fluids. They both lost a little weight (water weight) due to that which is what the doctors wanted. After that, Camdyn has been in the low 20s on her oxygen, so that is awesome! She has been on 21% for a while now. That's what we breathe! She now weighs 3 lbs. 9 oz. I am hoping she starts gaining more actual weight, not water weight. It was determined that she did not have an infection after all. (Thank You God.) They think it was a severe reflux reaction. That is why they are taking things really slow and watching her closely as they increase her feeds.

Cade is doing great. His oxygen requirements are a little bit higher than Camdyn's; they are in the high 20s - low 30s which is still good. The diuretics didn't quite work as well on him. He likes to hold on to all of his weight. He is working on taking his bottles and breastfeeding. He gets 2 bottles per day and the rest of his feeds are through the feeding tube. He doesn't always take all of his bottle. He does try to breastfeed, but he is still not quite strong enough to have an effective suck. He is getting so adorable. He is very alert now and looks around everywhere. It is precious! He now weighs 4 lbs. 14 oz. He was at the 5 lb. mark but lost a little with the diuretics. I went to buy newborn sized clothes because his preemie clothes are getting a little small. The newborn clothes look huge! It's crazy that I will soon have 3 month olds who will be wearing preemie (Camdyn) and newborn sized (Cade) clothes.

Boobs

How can I not dedicate a post to boobs? That's right, boobs. After all, they do dictate my schedule these days. Here are some interesting facts that I have learned about boobs:

1. Boobs know if you have delivered early and make special milk for preemies.

"The human body is amazing, though. It knows when a baby has come early and tries to protect the infant by producing special breast milk to compensate for some of what is missed in the womb. Preterm breast milk differs from full-term milk in that it is higher in calories and contains more protein, calcium phosphorous, magnesium, zinc, sodium, and chloride."

Isn't that amazing?

2. Boobs will change temperature to keep your baby warm or cool him/her down in kangaroo care (holding your unclothed baby against your chest skin to skin). One study even shows that each boob can change temperatures independently of each other depending on the temperature of each infant when kangarooing one twin against each breast.

You can read the whole study at www.ncbi.nlm.nih.gov/pmc/articles/PMC1890034/
I find both of those facts so fascinating.


Maybe, I have gone crazy. I thought it would be fun to write an "Ode to Boobs," so here it is:

Ode to Boobs

Oh, Boobs, how you control me.

I wake to your full, engorged glory.

You pain me and demand my attention.

The indulgence known as sleep, you do not allow me.

All hope of timeliness is lost on you.

You dictate a schedule of pumping and will not be ignored.

Oh, how I have tried.

Despite your time-consuming, attention-seeking, all-demanding manner,

I adore thee.

You provide nutrient-rich milk for precious babes,

and create perfect pillows upon which tiny heads rest.

Babes sleep soundly against thee as they listen to the rhythm of a heartbeat

and feel the rise and fall of each breath.

Indeed, you are both - painful and beautiful.

Oh, Boobs, I do despise thee and love thee.

A few more notes about boobs:

Everyone says breastfeeding saves so much money by not having to buy formula. Well, that is not the case for pumping. I spend $70 per month to rent the hospital-grade breast pump which is recommended when you have babies in the NICU. Then, I had to buy the accessory pieces at another $50. I have to buy the storage bags at $10 for 50 bags. I think there is a monopoly on breast milk bags. Each bag is 20 cents. Ziploc bags are practically the same thing but they don't work well for storing breast milk, but you don't pay $10 for Ziploc bags. Then, we have to buy the steam bags at $5-6 for 5 bags - again a rip off. It's a plastic bag for $1 each. We also have to buy baby wash because regular detergent is too harsh. Oh, and don't forget the nipple butter for cracked nipples at $8 a tube.

As if pumping alone was not time-consuming enough, the preparation that is required with having babies in the NICU is extreme. First, we wash our hands, then wash all the bottles and pieces with baby soap since regular soap is too harsh, then we have to steam all the pieces in steam bags. Finally it is time to pump. After pumping, we pour the milk into the storage bag and label each bag, not with just the date and time, but with two separate stickers given to us by the NICU, one for Camdyn and one for Cade. Then it's time to put it in the freezer, but oh wait, there is no room in the freezer. Time to break out the 2.5 gallon freezer bags. Put all the little milk storage freezer bags into the big freezer bag and take it out to the deep freezer in the garage. Next we haul some bags to the hospital for the babies. Whew!

My math skills from school are definitely being used. Here's my daily calculations. Camdyn gets 30 mL and Cade gets 42 mL every 3 hours 8 times a day. Add 2 mL to each to account for the amount that goes into the tubing. That's 76 mL every 3 hours 8 times a day. That's 608 mL per day. There are 30 mL in an ounce, so divide 608 by 30. That comes to 20 oz. per day. Then, I have to figure how much I am making and how much I can bring to the NICU fresh before it expires in a 24 hour period. That calculation can change depending on if the nurses have already taken out frozen milk and if so, how much. Their feed amount also changes so the calculations are constant. There's a math problem for you math teachers out there to give your students.

You know you are pumping all the time when your toddler has created a "boobie pump" dance. Brenna says, "Mommy, this is how boobie pumps go" while pretending to hold a breast pump on her chest. She moves her whole body back and forth while making the sound of the breast pump - "pshhh, pshhh, pshhh". It is quite hilarious.

Some of you have had the pleasure of seeing her "boobie pump" dance. It cracks me up!

Hope you have enjoyed my boob post!

Happy Father's Day!

This post is dedicated to my wonderful husband who is the most amazing father. As I am typing this, he is sitting on our living room floor playing Polly Pockets and princesses with Brenna. He can find matching Polly shoes and name all of the princesses. Pretty impressive, right? I'm sure that he can't wait to play trucks with Cade, and he will already know how to play girly things with Camdyn.

Throughout this whole crazy NICU experience, he has been great. I have posted some of my favorite pictures of Daddy with the twins. I know that I would not have been able to go through this without him. He is always there to support me when I have my breakdowns. He assures me that everything is going to be alright and that we, together, will get through this. I love seeing him with our tiny precious babies. I look forward to the day that we can all be home together.

Daddy giving Cade a bottle.

Daddy holding Camdyn


Daddy holding Cade's tiny hand


Daddy supporting me as we look into Camdyn's isolette during the very early days.

Daddy taking Camdyn's temperature. Look how big the thermometer looks next to Camdyn.

Daddy holding Cade for the first time.

Daddy holding Camdyn for the first time.

Happy Father's Day Daddy! We all love you!

Love - Michelle, Brenna, Camdyn, & Cade

NICU shuffle

Cade has really been progressing well. He got to take his first bottle yesterday (6/19). He drank the whole thing. The nurses were very surprised at how well he did. They said that preemies usually tire out and only take a little bit of their first few bottles. This morning (6/20) I was able to try breastfeeding him for the first time. What an amazing feeling! He actually latched on! I don't think he really got any milk though because his suck is not quite strong enough to let the milk down, but he was sucking great. It won't be long before he can actually breastfeed. I am so excited! Then, Jimmy got to give him a bottle, and he did great with that too. I don't think Cade is going to have any problems eating.

Camdyn has had a setback. She was moved back on to CPAP because she was having some severe apnea spells where she wasn't breathing. The CPAP can give her a set amount of breaths per minute to remind her to breathe. They put in an IV and started an antibiotic. They think she may have some type of infection, so they are starting the antibiotics to treat whatever it might be. The blood and urine cultures won't tell us for sure what it is for 48 hours. They have stopped her feeds until they can make a determination. Hopefully, they will figure it out soon and be able to give her what she needs to get better. It was so sad to see her on CPAP again with an IV. We thought we were past that, but they constantly remind us that we take a few steps forward and then a few back as we do what is nicknamed the "NICU shuffle." I'm all for dancing, but this is a dance I'd rather not do. We only want steps forward.

God, we thank you for all the progress Cade has made. We are thankful that he is feeding so well. I am thankful that I finally was able to put him to my breast as nature intended. It was a beautiful experience. We ask for continued progress for both Cade and Camdyn. We pray that Camdyn is able to overcome whatever infection she may have soon. We pray that she is able to start feeds again soon and gain more weight. We ask you to guide their doctors as they take care of them. In your name, Amen.

Brenna meets her little brother and sister

Brenna got to see her little brother and little sister for the first time last Friday night (6/18). They are almost 11 weeks old, and this was her first time to visit them. She absolutely loved them. She was talking to them, singing to them, and playing patty cake with their hands. It was so sweet!

Camdyn is holding Brenna's hand here. Even Brenna's hand looks huge next to Camdyn's.

Irony All Around Me

As you all have read, this whole experience has been quite surreal. I began thinking of all the irony that it presents on a daily basis. So, here's the irony that now seems to surround me. (Not all of these are exactly ironic; some are just interesting thoughts bordering on the side of irony.)

1. I carried Brenna to 41 weeks. I tried everything to get her out - eating Mexican food, walking 2 miles around the neighborhood, acupuncture, and even jumping on a trampoline! She still had to be induced, and I was given Cervadil to thin out my cervix which was not effaced at all. Fast forward 3 years . . . The twins were born at 24 weeks 1 day when my cervix was completely thinned out for no reason. We tried everything to keep them in.

2. We stand by our babies bedsides and say, "Look, how big they are!" (They are now 3 lbs. 12 oz. and 4 lbs. 11 oz. This, by no one's standards, is big.)

3. During those first horrible days, I remember thinking I can relate to the lyrics, "still alive, but I'm barely breathing." I felt like I was just pushing through each day trying somehow to keep going. Later, I realized that these lyrics described the babies too. In fact, they were still alive but not even breathing; the machines were doing that for them.

4. Our babies have three ages. They are about to be 11 weeks old, 35 weeks gestation, and 0 adjusted age.

5. We have Brenna in swim lessons, and she is working on holding her breath under water. The teacher counts for her to see how long she can hold her breath. Camdyn, on the other hand, has apnea spells where she holds her breath for too long. So, we are encouraging Brenna to hold her breath and want Camdyn to stop holding her breath.

6. We will eventually be bringing home 4 month old newborns.

I'm sure there are several more ironic situations that will present themselves in the days to come. Sometimes, we have to remind ourselves that this is our reality for now.

Exams

Camdyn had her head ultrasound yesterday. Unfortunately, we didn't get the good results we were looking for, but it wasn't exactly bad news either. The area of white matter is still there and has not changed, and there is a new area of white matter as well. Both areas are described as small and have not become cystic. The doctors do not seem too worried about the results. They told me they were looking to see if the white matter area or areas have changed into a cyst. They said that it usually has become cystic if it is going to by now, but there is still always a possibility that it could become cystic. She will have a repeat ultrasound in two more weeks. The MRI that will be done before they are released will tell us more. This waiting game in the NICU is really torturous. In addition, the radiologist read that she now shows a grade I head bleed; however, the doctors said that they don't really see that. Either way a grade I head bleed is not bad. So, we will continue to pray for positive changes in Camdyn's upcoming head scans.

The good news is that their eye exams went well. They both show no signs of retinopathy of prematurity which is awesome! We've been told that it will usually show up by 34 weeks gestation which is where they are. They will have more eye exams coming up, but so far, so good. We are really thankful for that.

Cade is in a big boy bed!

Cade was moved to an open crib last night (6/15). It was so exciting to see him in an open crib today when I went in. Now, I can reach in and kiss him. I can pick him up to hold him on my own now. It is amazing! Below is a picture of his "home" for the first 2 1/2 months of his life. In this picture you can see the oscillating ventilator at the foot of the bed and the nitric oxide machine that he had in the beginning. Later these machines were moved when he went to CPAP and then on to nasal cannula.

Cade's new "home" in his big boy bed!

Here's a picture of Cade inside of the isolette when he was first born.

Here's a picture of him now in his open crib. What a difference!

stupid security

The NICU has some security measures that just don't make sense. We have to wait at two different doors to finally get into the NICU. The first door is the really stupid one. We have to wait until they see us through a camera for it to open. Then we go down another hallway, scrub in, and wait for the receptionist to open the next door. What is really dumb is that if you are up to it, you can walk around the long way and not even have to wait at the first door. So why is it there? The only people who come to it are obviously NICU parents as it is in a back corner of the hospital, and we don't want to walk the long way around because then we have to pass by the giant baby nursery (aka regular nursery).

Today, I asked one of the hospital staff to hold the door open for me since she was a few steps in front of me. She acted like I really put her out and told me she wasn't supposed to do that. Seriously!? Do I look like I am here to steal some babies? I am obviously a NICU mom. Attention hospital people: The moms who have bags under their eyes, who try to avoid going the long way and passing the healthy baby nursery, who are carrying bags of breast milk, who look enviously upon the very pregnant moms - we are the NICU moms. And, we are not here to steal babies, but we might like to take our own home some day. We would just like to be able to get in to see our babies without going through a ridiculous security system. So, is it really necessary to act like I am asking a huge favor for you to hold the door open for me?

Good thing I have this blog because the more frustrated I get at this situation, the more likely I am to start telling people what I really think.

10 Weeks Old

my new favorite picture of my precious twins - Cade is so much bigger than Camdyn.

Look how much Camdyn has grown. Compare the picture above with the pictures below. She is still only 3 lbs 6 oz., but the 2 lbs. 4 oz. she has gained makes a world of difference.

Camdyn's tiny arm at about 1 week old.


Camdyn wearing our wedding rings all the way up her arm at about 2 weeks old.

Mommy and bright-eyed Camdyn

sleepy Cade

Cade awake wearing his cute bear hat

Mommy with her two little bundles of joy

The babies are now 10 weeks old! They have both gained weight. Camdyn now weighs 3 lb. 6 oz., and Cade now weighs 4 lbs. 10 oz. They are starting to look so much bigger now. Earlier in the week they were weaned from 4 liters of pressure on their nasal cannulas to 3.5 and then 3 liters. Today, Cade was even lowered to 2.5 liters, and I think Camdyn will do the same soon. When they get to 2 liters, they can start learning to take a bottle. We are so excited!

Camdyn's head scan is tomorrow morning. We should get results by tomorrow night. We are praying that there is less white matter. We've been told that both babies will get MRIs just before they are ready to go home, and that will tell us the most. They do both get eye exams later this week, too. So, we ask everyone to continue praying for them as they go through these tests.

God, we are so thankful for their growth and how well they are doing on their nasal cannulas. We are thankful that they have been able to wean the liters on the cannulas so well. We are also thankful that they have been tolerating their increased feeds. We pray for good results from Camdyn's head scan and for their eye exams. In your name we pray, Amen.

annoyed today

I had an annoying day today. It started out with going to the social security office. I was told at the hospital that I needed to fill out paperwork for the babies with the social security office. Because of their low birth weight, they may qualify for some benefits. After waiting 45 minutes, I finally met with someone. I asked why they needed me to answer all of the questions and fill out all the papers. She told me because they presume the babies will be disabled ("you know with like Down's Syndrome or something"). I wanted to tell her she was an idiot because they don't have Down's Syndrome and if they did, they would have known that before they were born. It has nothing to do with being premature. Then I was told that because of our income we may or may not receive benefits. She said we may receive about $30 per month as presumptive disability checks. I really wanted to get up and walk out and tell her she could keep her $30 and her presumptions to herself!

After being completely annoyed by that, I called the NICU to check on the babies. Their nurse said they were doing great and she had just finished putting their eye drops in for their eye exams. I said, "What eye exams? They aren't supposed to get eye exams until next week." She said she was told they were getting them today and had already put the drops in to dilate their eyes. I asked to talk to the doctor, and after some checking he found that I was right; they were not supposed to get eye exams until next week. If I hadn't called, they would have went ahead with the unnecessary eye exams even though they aren't supposed to get them until next week. This doesn't seem like a big deal except that they both HATE getting eye exams. After the last two they got, their oxygen needs went way up and Camdyn had to be moved back to CPAP. Needless to say, I was very annoyed and called the NICU coordinator to let her know I was not at all happy about their mistake. I was mad that they are stressing the babies more than they need to be stressed - as if they haven't had enough trauma in their short lives already!

So that was my very annoying day today. But, the great news is that the babies are doing very well. Camdyn now weighs 3 lbs. 1 oz. and Cade now weighs 4 lbs. 3 oz. They did say that Camdyn is only measuring in the 10th percentile for babies born at her gestation; however, she is still putting on weight and following her own growth curve. Cade is in the 50th percentile. So, hopefully, Camdyn will start gaining a little faster. They are both in the 30-40s on their oxygen on high-flow nasal cannulas, so that is very good. The physical therapist has said that their muscle tone is good for their gestation. Overall, we are very pleased with their progress.

9 Weeks Old

Cade and Camdyn kangarooing with Mommy.

Look how much they have grown!





Cade resting on Mommy.

Camdyn resting on Mommy next to Cade.

Cade sleeping so peacefully.

Camdyn sleeping so sweetly.

another picture of Cade just because he was looking so sweet

Both of the babies are doing well. Cade has finally made it to nasal cannula and is doing well with it. He doesn't look like he is struggling to breathe with it this time. Camdyn was put back on cannula too. It was great to hold them today with both of them on cannula - no CPAP masks. I hope they continue to do well with the cannula and don't have to go back to CPAP. They are on high flow cannula of 4 liters. The next step down the road will be to lower the flow. Once they get to about 2 liters, then they will start to nuzzle (put to the breast, but they won't be able to actually nurse yet) and begin learning to take a bottle.

Camdyn is now 3 lbs and Cade is now 4 lbs! They look huge to us. They both get to wear clothes and be swaddled now like "real" babies. We are so excited. Cade is about to make the big move into an open crib instead of an isolette. Yay! I can't wait to see him in an open crib. Camdyn will have to gain another pound before she can make the move. Then, later they will get to sleep in the same bed. That is going to be so precious. They will still have more eye exams and brain scans in the next few weeks which, of course, make us nervous every time, but we have so much to look forward to as they are growing.

God, we thank you for their continued growth and improving lung function. We are so thankful they are now on cannulas, and we pray that they will be able to wean the flow in the next few weeks. We ask for you to continue to watch over them and their doctors. We pray for good eye exams and for good brain scans. We thank you for giving us our precious miracle babies. Amen.

the raffle winners are . . .

and the raffle winners are . . .

Grand Prize - one week stay at Vista Villas on Lake Travis ($650 value) - Jane Goehring

$200 Trendz gift certificate (Trendz Salon, Austin)- Elizabeth Kallus

Coach purse (The Carter/Slazer family) - Sarah Weishuhn

$25 Exxon card (Exxon, La Grange) - Tonya Coy

Klutz Activity books ($100 value, Busy B, La Grange) - Mary Barnes-Tilley

Cross (Bargas Landscaping) - Dr. Daniel White

2 $100 Visa gift cards (Chad and Kelee Payton) - 1. Brasher Gunn 2. Tammy Mozisek

1 share of Disney stock (Chad and Kelee Payton) - Cheryl Peschke

$50 Chili's gift card (Richard and Sarah Carey) - Linda Oviedo


Business Prizes:

Center Stage - photo shoot - Elsie McGuire

The Hair Shop - gift cards - 1. Joan Goehring 2. Janice Collins


Congratulations to all the raffle winners!

We sincerely thank you all for buying tickets to support Cade and Camdyn. We have seen the generosity of friends and strangers, and it is so uplifting. We feel so loved and supported by all of you. Together you helped us raise $9,000 for Cade and Camdyn from the raffle! With other donations from family, friends, and churches, the total raised is over $11,000! Wow!

Thank you so much to all of you who have donated prizes. We had some awesome prizes. You all contributed so much to make this raffle a success.

We want to thank all of you who sold tickets as well. So many of you offered to sell tickets to your friends and family. You all helped so much in raising money for Cade and Camdyn.

I have to thank my sister, Bridget, for organizing this raffle. What a great idea to help Cade and Camdyn! It was a huge success.

We also want to thank you all for your continued prayers for our miracle babies. The prayers are working. The babies are doing well, growing every day, and improving. We can't wait until the day we get to bring them home. Thank you all again for supporting us on our journey.

Love - Jim, Michelle, Brenna, Camdyn, and Cade

steps forward and back

6/4

Both Camdyn and Cade have gained weight. Camdyn now weighs 2 lbs. 14 oz. She is almost to 3 lbs! Cade weighs 3 lbs. 12 oz, so he is getting close to the 4 lb. mark! Cade looks huge to us now. We look at him, and think he looks just about like a full-term baby (which I'm sure he doesn't). After seeing them both so tiny for so long though, he really does look big. Cade now gets 31 mL (a little over 1 oz.) per feed and Camdyn gets 27 mL. They have went up quite a bit on her feeds, so she has started gaining weight a little more quickly.

Camdyn has had a step back. They put her back on CPAP with a rate which means it is giving her breaths again. She was having a lot of apneas (forgetting to breathe) and desaturations. The doctors thought either she was fatigued from being on nasal cannula or she may be getting an infection. So far she has been doing very well back on the CPAP, so they don't think it is an infection. She just needs a break for a while. Her lungs are still really immature, so they need some time to rest and grow. Hopefully, with her weight gain, she'll be ready for nasal cannula again soon.

Cade is still on CPAP too but without a rate. This means he is getting pressure to keep his lungs open, but he is taking all of his breaths by himself. We are hoping that he will also be ready for nasal cannula soon.

God, we thank you for their weight gain. We love seeing how much they have grown every day. We pray that you heal their lungs and make them strong. We pray that you help their eyes and brains develop well. We ask you to watch over them and comfort them during their NICU stay. We thank you every day for our little miracles. Amen.

P.S. Readers, I have turned off the function that only allows only registered users to comment. So, now anyone can feel free to leave a comment.

The World of the NICU

As I was putting books back on the bookshelf in the NICU earlier this week, I overheard the NICU coordinator telling the nurses, "We need to prepare some beds; we have 24 week twins on the way." At that moment, it seemed like I was having an out-of-body experience. I saw what it looked like when they were preparing room for my twins to be admitted into the NICU. I instantly felt my heart drop for the parents of these twins. I knew they were likely experiencing the most traumatic time in their lives. I knew they were thinking, "It's not time. This can't be happening." I knew that they would soon be counting down hours and days and wishing time would go by faster. I knew that the doctors would soon be talking to them in what seems like a foreign language - PICC lines, arterial lines, head bleeds, PDA surgeries, O2 levels, oscillating ventilators, conventional ventilators, blood gasses, CPAP, and so much more. I knew they would soon see their babies for the first time and be amazed at how tiny and yet perfect they were. I knew they would long to hold their babies but only be able to reach in the isolette and hold their tiny fingers. I knew they would be asking, "Why me?"

"Diseases have no eyes. They pick with a dizzy finger anyone, just anyone." (Sandra Cisneros in The House on Mango Street) This quote came to mind when I was thinking about the world of the NICU, but instead of "diseases," you can insert "premature birth." We have now spent 8 weeks in the NICU, and in that time we have seen many babies enter and leave. Camdyn's neighbor is a little Hispanic boy; Cade's neighbor for a while was an African-American baby girl. The 25 week twins across from us are Asian. Premature birth also affects all ages. When we were first admitted, we often saw a young mother who looked like she couldn't be any older than 16. We have also seen mothers who look like they are in their 40s. We've seen first-hand that premature birth really does pick with a "dizzy finger."

Becoming accustomed to the world of the NICU definitely takes some time. When you first enter, all you hear are the beeps of all the monitors. At times, it seems that every baby there is beeping. In the beginning, you jump every time you hear a beep, but you soon learn which beeps are important and which are not. You can differentiate between the desatting/high satting beeps and the "probe is off" beep. You know that the "feeding is over" beep doesn't matter whereas the brady beep does. I feel sure that my babies won't know how to sleep at home without all the beeping. Maybe I should invent a NICU sounds cd like those nature sounds ones.

On the other hand, the world of the NICU also shows you the beauty of parental love. You see dedicated parents sitting by their babies' bedsides, rocking them, feeding them, and praying for the best for them. You meet other parents who can truly understand what you are going through. You celebrate with other parents when your babies reach milestones that full-term babies never have to work to reach such as learning how to eat without a feeding tube and remembering to breathe on their own.

I wrote in a previous post that I don't want to be the one who has to tell some other unfortunate mother who delivers way too early in the future that we have been there and understand what they are going through, but now it looks like the future has come sooner than I expected. I didn't really think there would be another set of 24 week twins while we were there. I look forward to the day that the NICU world is not part of my everyday world anymore, and it will be just a distant memory.

8 Weeks Old

Here's my big boy at 8 weeks old. He was on nasal cannula for one day, but he was trying too hard to breathe. They put him back on CPAP so he wouldn't have to work so hard. Hopefully, he will be ready for nasal cannula soon. This picture is so cute. He looks like he is just fed up with all of this already.

This is a picture of Cade at about 1 month old.

This picture was taken just after birth. He was so tiny. Compare this picture with the pictures below to see how much difference 2 lbs makes. He was 1 lb. 8 oz. in this picture. His skin was completely transparent.

Here's Cade's tiny foot with Jimmy's wedding ring at about 1 month old.

Here's his little chubby toes at 2 months old.

This is a picture of Cade on his tummy. He actually has some fat now. We are so excited! He finally fits into a regular preemie sized diaper, but we still have to fold it over. He has a ton of blond wavy hair. It is so cute.

Look how much he has grown since birth. He now has chubby cheeks and has a little fat on his body. 2 lbs. makes a ton of difference. He is 3 lbs 7 oz. in this picture.

This is a picture of Camdyn taken at a few weeks old. You can see her ribs. It has taken her a lot longer to gain weight, but you can no longer see her ribs.

This is Camdyn at birth. This is what a 1 lb. 2 oz. baby looks like. She had absolutely no fat on her. Her skin was also completely transparent. She does have long beautiful fingers. Compare this with the pictures below. She is 1 lb. 7 ozs. bigger in the picture below; notice how much difference that makes.

Here's my sweet pea sleeping. She weighs 2 lbs. 9 oz. in this picture. I love her adorable little hat. I had to order it online on a special micro-preemie website. It is a size 0-2 months/3-5 lbs. You can see that it is a little big. Cade has one in blue, but he can't wear it yet with the CPAP mask on.

Here's another picture of Camdyn. She is just so sweet. She has been on nasal cannula since Wed. They tried her on it, and she did remarkably well. I think she was happy to be off of CPAP. The nasal cannula pushes her nose up a little, but it still looks more comfortable than CPAP. We were so excited when they put her on nasal cannula and when Cade was on nasal cannula because we could actually see their faces for the first time. We hadn't really ever seen their faces without tubes and masks.

Here Daddy is holding Camdyn. Even though she has gained weight, she still looks so tiny, especially next to Daddy. I love how her little feet are curled up against him.

Here Daddy is holding Camdyn. They really don't have anything that fits her in the NICU. They pulled out the tiniest shirt they have, and you can see that it swallows her.


Today, Camdyn weighs 2 lbs. 10 oz, and Cade weighs 3 lbs. 9 oz. He started out weighing only 6 oz. more than Camdyn; now he weighs nearly 1 lb. more. We are hoping that Camdyn begins to gain weight a little more quickly. However, she is doing better on oxygen and is on nasal cannula instead of CPAP. So, she doesn't realize that she is little. We are hoping that Cade will be able to get off CPAP soon.

We thank you God that the babies are doing as well as they are. We are thankful that they have both been gaining weight, and we are thankful that their first eye exam showed normal so far. We pray for Camdyn to gain weight a little more quickly. We pray for Cade to get strong enough to go to nasal cannula soon. We ask that their eye exams continue to be normal. We also pray for the new 24 week twins who were admitted into the NICU this week. And, we pray for their parents as they struggle through these first few weeks. In your name we pray, Amen.

P.S. Feel free to leave comments. I love reading them. By the way, I did not delete the comment on the last post. Whoever wrote it, deleted it. It looks like I deleted it. Just thought I would let you all know that.