Tuesday, June 29, 2010

The Best Feeling Ever

I was able to hold my boys together for the first time yesterday. It was truly amazing... the best feeling ever. It was better than all of my favorite things together. Like... better than driving by Culver's and seeing your favorite flavor of the day, better than waking up in the middle of the night and realizing you still have seven more hours to sleep (that will happen again someday for me, I hope), better than putting on your winter jacket for the first time in the fall and finding $5 in the pocket or a candy bar - ha!, better than putting on an old pair of skinny jeans and having them fit, better than putting on flip flops after wearing high heels all day... better than anything! haha :) It was so great.

Holding them yesterday together was the first time I felt really complete with them. Before I always felt as though I was giving one more time than the other or I would worry about the other when I could here him cry but couldn't see him. The best too was seeing them interact. It was so cute! Luke just loved to cuddle with his brother. He was all over Max... sucking on his hand, shoulder, and just nuzzling into his back. So sweet! The best part was that Luke slept like a log for the whole two hours that I held them. He sometimes has a harder time (breathing) during his feedings and things but he didn't de-sat once the whole time I was holding him and he was in room-air the whole time (no extra oxygen)! Max did really good too but got super hungry towards the end. He didn't seem to be as fond of sharing time... he kind of pushed Luke over into my armpit, and by the end Max was in the middle of my chest... got all the room he wanted. Poor Luke! :) Also, Max was breathing for about 45 minutes all by himself. When the nurse transferred him over to me she accidentally disconnected his O2 cord. I was so impressed at how well he was doing, didn't phase him a bit! Overall, it was just the most peaceful, special time I have had with my boys thus far. They were so precious and it was awesome to see them interact with each other.

Last night I came home in a flash (at least it felt like it) and Caleb and I went to the Healing Service at church. It was just a special time to pray for healing or someone you know that needs healing, etc. It was a great time for Caleb and I to slow down and reflect on our blessings and bring our requests before God. We went up to the front and both lit a candle for each of the boys and prayed for them together... and both cried and laughed. It was a very special time. I am so thankful for my boys and the joy they have given us. I thank God for them and for this whole situation. I know it will mold our whole family into stronger followers of Christ. I'm on my way back up today to spend the night again. Max might even get a bath again tonight... so I am excited to see how that goes!

Monday, June 28, 2010

All Pictures

My Loves... Luke and Max.

They are cuddling here for the very first time. These are the pictures the nurses took.

The moment I was able to hold them for the first time... today! They are holding hands here :)

So happy... the three of us again!

Caleb holding Max, me above holding Luke. We were able to get them out at the same time and sit next to each other to cuddle.

Grandma and Grandpa Yoder came too!

New Family Photo!

My little Max in his first ever outfit!

My necklace came! It says Luke Joas and Max David. So they are always with me.

Max's first tub bath :)

I plan to post more tomorrow after I sleep a few hours. It would be plain gibberish if I wrote it now! Lots to update though!

Helloooo from the NICU!

So since I am here I can't post pictures but I can give you an update. The boys are gaining weight! Praise God!! Max is now 3 lbs 2 oz and Luke is 2 lbs 4 oz! I was so happy to see that Luke is actually putting some weight on. They are both doing well with their feedings still. The goal is to try breast milk with Max this week. Pray that he takes it well. I just really hope he doesn't react to it again because if he does I won't be able to breastfeed him in the future.

Other exciting news... Caleb and I were able to hold the boys at the same time last night. They moved two recliners together and I held Luke and Caleb held Max. We got some new family photos that look a little more official! It was fun to just all be together. I had a hard time towards the end though, because I just really long to hold them together. For me to hold them both at the same time. I have been dreaming to see them react to each other and reunite them! Their nurse heard me crying and asked what was wrong. I just told her that I was frustrated that this whole situation is so unnatural and that I long for them to be together. Then I had to run out to pump.

I went back in to say goodnight to the boys and their nurse told me she had a surprise for me. She handed me a card and I opened it up and it had pictures of the boys together... hugging each other. Just wearing their diapers. I was elated, sad, and furious at the same time. I just started bawling and didn't say anything to them about being hurt and said I was so happy to see the pictures. I walked out of the NICU and just sobbed. I am just frustrated that I keep missing so many firsts. I missed Max's first bath and seeing the boys together for the first time. I know that the nurses were being so sweet and were doing it for me, but I had just longed since I gave birth to them to see them when they were reunited for the first time.

Anyways, I get to hold them together today, and kangaroo with them. That will be great and I am really excited! I am probably just dealing with some mom hormones!! haha :) It didn't help that I was crying right before all of that just because I was longing to hold them together and see them interact and then the next minute I walk in and find out that it JUST happened without me!

I have some amazingly sweet photos to share that I will post when I get home tonight. They are just precious. One picture Luke has his arm around Max and Max is punching Luke in the face. Then the next picture it's totally opposite! I can't wait to see them interact today. Being here is so great and I love that I can, throughout the day, go peek on them and hold them and talk to them. This morning the nurse had just put a new pair of jammies on Max and she combed his hair. His hair is so cute and long and curly enough to give him a little curl on the top of his head. Don't worry Daddy... it's a very handsome masculine curl! ;) I just Praise God eveyday for my little miracles. They bring me so much joy! I will post some pics soon!

Sunday, June 27, 2010

Big Steps

Max was a free man while they changed him from his high flow to low flow nasal cannula. Breathing all on his own!

Same here... "Look mom, I'm so happy!"

Luke getting some time out with Dad.

It's so much work being cute, just wears a boy out!


Luke with Caleb. "What do I want for lunch... hmmmm?"

Hahaha... Luke! He just got his nose suctioned out. This face makes total sense if you would see and the suctioner! For us it would be like taking an industrial vacuum to you nose!


Who's talking to me??

"Look mom... no IVs!!"
So the boys are making some big steps! Max and Luke both have all of their IVs out. That was a big step because that means the doctor is confident that their feedings are going well enough. Their IVs at this stage were left in really for back up if their feedings would be stopped. It is so nice to see their little arms free... and they must think so too. They are using their arms a lot more, flailing them all around!

Another very exciting this is that Max had his very first tub bath last night and is now wearing clothes!!! I got a call from the nurse last night telling us about it. Luke isn't quite ready for that yet. Just due to his size mostly. Please pray that Luke will start to gain weight. That little guy worries me. I just know that he really needs to start gaining in order to hit more milestones like his brother! I was very bummed that I missed Max's first bath, but they did take pictures for me so that made it a little better! She said he did well with it though and enjoyed it!

We had such a great weekend, Caleb and I. He came up on Friday afternoon and we spent the night and most of the day on Saturday with the boys too. It was so great to all be together and Caleb had so much fun because he finally was able to interact with the boys now that his poison ivy is gone! He did some diaper changes for the first time, held them both a lot... for long periods of time. And... did what he loves to do... took tons of pictures of them. Seeing him with my boys just makes my heart feel so full. I love to feel like we are together as a family. As together as we can get at this point!

Friday, June 25, 2010

Runnin' on Empty

I feel like I can't seem to keep up lately. I just always feel like I am running somewhere... and getting there one step behind. I am pretty sure that most of that feeling comes from having to pump, you are always on such a time schedule. My mind has been feeling the effects. Some of you can attest to my more frequent mental lapses. I keep forgetting what I was going to say, who I am calling, what I am doing, etc. Some say welcome to motherhood... but I thought that happened at grandmother-hood! haha!

Oh, and physically, it has had it's effects too! Like being so exhausted that when you wake up at 6:00 am to pump and walk down the stairs... well, I didn't walk. I kind of plopped! Remember sliding down the stairs on your butt as a kid? Yup, I slipped on the top step and went straight from my feet to my butt and didn't stop 'till I hit the floor. Caleb shot out of bed like a rocket because we don't have a railing on the stairs yet and he thought I fell all the way down to the basement (which would have been really bad.) He found me just sitting on the floor... crying. I wasn't hurt that bad, I jammed my finger somehow and skunned my back up... but I was crying because I was so exhausted and DONE with feeling any pain. The whole process from labor for a few weeks, birth (c-section), life threatening infection, pumping... well, I feel like I got ran over by a truck and then they backed to see what they hit! Ok... I'm done complaining! I just keep thinking of Matthew 11:28-30 (its a good one.)

Something to rejoice about is my beautiful babies. They are doing good and making progress daily. Both of them are still dealing with preemie complications, PDA, apnea, etc. But overall they are doing better. They both got their IVs out the other day which is so nice because they are free men... they can move their arms around wherever they want, and they do! They both are doing well with their feedings too. Going up everyday. Max is now 3 lbs and Luke is 2 lb 2 oz!!! They are stable enough now also for me to hold them twice a day. I have done some research on kangaroo care and it is amazing the medical benefits for the babies along with the psychological ones for mom. It is so fun to hold them and just feel them relax and melt. Some of the nurses have been working with me to learn how to take them out of their isolettes by myself too. It is not an easy task! They are hooked up to so many things and I get nervous that I will pull something out. I can't wait for the day when they are at home and I don't have to ask permission to hold them! :)

Thanks again for all of your prayers. I think He is listening to you and it's working! Sometimes I think my situation is so bad, but then lately, with all of the new entries in the NICU I feel so blessed. There are lots of critical babies in there lately, ones that are having surgery and other operations and it makes me thank God for the progression of my boys. I just hope they keep on hangin' in there!

Tuesday, June 22, 2010

Update 6-22-10

The boys and I have had a good couple of days... at least it feels like it to me! Being up there more has been great and I have really felt that it is making a difference. Just having a little more of a routine seems to help.

Max is now up to 2 lbs 13 oz and is still on Elecare... the pre-digested formula. He will most likely start breast milk again next week, which is a really good thing for more than one reason. Not only is it better for him, but I have soooo much milk in the freezer in the NICU that they give me a dirty look every time I walk in with more bottles! haha! At this point I am super thankful that pumping is going so well and I am getting so much milk, but the boys NEED to start eating more! Just to give you some perspective, on average every time I pump (every 3 hours) I get 5 to 7 oz which is the same as 150 to 210 ml. Right now only Luke is on breast milk and he is getting 16 ml every three hours... so we have a little bit of an excess to say the least... like 10 times! haha :)

Max with his new hat on from Grandma Sophie


Luke is now up to 16 ml, like I said, and on his way up to 19 soon. His milk is now getting fortified and he will be up to 24 calories soon with the fortification so I am hoping that he will be getting chunky in no time! Both boys have been doing a little better with their spells so I hope that stays that way and just keeps improving.

Luke... his IV comes out soon... whoo hoo, no more arm board!!!


Our sweet isolette decal! Thanks to Audrey's daddy.

Audrey is the boys' girlfriend. There old neighbor that is now on her way home this week! Congrats Marshall and Crystal! They have put their time in... 3 months now. Audrey is a beautiful 4 lb baby born at 12 oz. God is so good!

Sunday, June 20, 2010

Father's Day!

Caleb was able to celebrate his very first Father's Day today! We weren't planning on getting able to do that until next year... but hey, there are perks with this situation, I guess! We had a great day spending time with Caleb's family at Silverthorne. The weather was gorgeous and it was fun to just relax with everyone. Oh, and Caleb won the prize for being the newest father in church this morning!

I called to check on the boys this morning and their nurse said they were having a better day than yesterday which made me feel good. They started to run the caffeine again by IV for both of them. The concept sounds weird, but this form of caffeine that they give them actually helps with their spells. It helps to "wake" them up and keep their brain telling their body to breath. Sometimes when I talk to them and run out of things to say I just keep repeating... "breath, breath, breath..." hoping they will pick up on the rhythm! haha :) Most of the time the reason for their spells is that they just get disorganized in their breathing. Take a few short breaths, stop completely, and then one big one. Sometimes, however, they forget the one big one and that is where we run into problems!

I was there last night and I was just spending some time with Luke and Max's monitor beeped so I just peaked over to see what it was, assuming he was just slightly desaturating. Unfortunately that wasn't the case. When I looked over his saturation level had lines through it and his heart rate was around 19 bpm. I panicked and as the nurse walked over I kept saying, "he's flat-lined, not breathing at all!" She briskly picked him up and his little arms and legs were completely limp. I felt like I had a huge brick in my throat. I was so relieved that after that type decline she was able to bring him back without bagging him. But seriously, it was so scary. I just felt so helpless and panicked!

Anyways, that is another reason why I am so immensely thankful for the NICU and all of the nursing staff. They are truly amazing and always are on top of those situations. It does still make it hard to leave, just knowing that your babies have the tendency to stop breathing spontaneously is very unsettling, to say the least! Praise God for technology. I usually tend to be on the other side of that statement and can get so frustrated with all of our modern conveniences, but in our situation, I wouldn't want to imagine life without technology!

A new picture of Luke. The last one I put up didn't do him justice! :)

Thursday, June 17, 2010

Two Days with my Boys :)

I was able to spend some good quality time with my boys!! It was so great to get up there yesterday and know that I didn't have anywhere else I needed to be but with them for another 24 hours. When I got up there on Wednesday afternoon I didn't get the best welcome report... I never really seem to for some reason. I was on my way over the bridge actually when I got a call from Caleb... "Ash, the NICU just called me..." My heart sank. He informed me that they had changed some things with feedings and they would update me once I got there. At least I was braced before entering the door this time!

The doctor explained to me that they stopped Max's feedings. Which was a big surprise after he had been tolerating 21 ml very well for the last few days. His belly was too hard and bloated and they were suspicious of infection once again. They started antibiotics right away and scheduled an echo cardiogram (ultrasound of the heart). Possible diagnosis for Max's reaction could be a few things. The most threatening concern is that his PDA is affecting his overall digestive system. (That is the open valve still.) So please, if you are praying for the boys, pray that their valves close!! The other possible reasons I was told were a reaction to either protein in my breast milk or in the fortification they added. (More likely than not, a reaction to the fortifier that was just introduced in the last few days is the cause). Long story short on Max... the echo gram was done today and we will have results back tomorrow.

Today, however, was a much better day for both of the boys. They were both breathing well while I was there and both are eating small amounts now. Luke at 8 ml of breast milk and Max just getting a little special pre-digested formula to hold him over until he gets put back on breast milk. I was able to hold Luke last night and then Max this morning. So, so wonderful to be able to snuggle! I love to be able to hear them breath, smell them, feel their little chests rise and fall on top of mine. Have I ever told you how cute they are? haha :)
Max - weighing in at 2 lb 10 oz

Luke - catching up at 2 lb 0.8 oz!!!!!

(his mouth looks a little funny because his feeding tube is too stiff and pushing on his lips, and yes he has his tongue out again!)

I can't seem to brace myself still, even though I know it is coming and will come, but the ups and downs of this roller coaster are dumb founding! I really never know what tomorrow will bring. It amazes me how much it affects me. But I guess why wouldn't it... we are talking about the lively hood of my flesh and blood. Two little babies that I love more than life itself. I just pray that when I leave, God picks them up and cradles and soothes them until I get back. I miss them terribly already!

Tuesday, June 15, 2010

A Day at Home

Caleb talked me into going up to see the boys every other day, well at least for today. :) I can't help but feel like I need to be there when I am home. We are going to have to figure something else out because I know in my heart that every other day is not enough. Even if after the day where I am at home, I go up to Duluth late in the evening to spend the night and then the whole following day. Then head for home to spend the night and the following day home and repeat... sounds like a plan! haha

I just know that these little boys need to know their mama is there, hear my voice, smell me when I hold them... give them some sense of comfort in their upside down world! Yesterday was so hard because when I went to leave Max was being really fussy. I put my hands on him and just talked to him and he would be fine, he would relax and almost fall asleep. Then I would pull my hands away slowly and he would start to cry. It just tore my heart to pieces. I only get so many opportunities like that to be their mom right now I feel. And he knows its me... I'm sure of! And it kills me to leave them when I can actually do something to help.

They are doing pretty good. Both still on CPAP. Unfortunately Luke is still not getting any feedings. He just isn't moving things through his tummy well enough so hopefully soon they can get him going again. The poor little man has to be starving! They do up their IV fluids (calories and vitamins) but I know that he still has to feel hungry with nothing in his belly!

I am hoping to get up there tomorrow and spend the WHOLE DAY with them. I haven't held them for almost a week and a half because of being on CPAP and them having so many spells so hopefully tomorrow both of them will be stable enough so we can cuddle!

Sunday, June 13, 2010

And just like that...

I was so excited the whole way up to visit the boys. Couldn't wait! I was telling Caleb how fun they were yesterday and that I couldn't wait to spend more time with them and hold them, and on and on. We walked in the doors and were greeted by the doctor, saying that the boys were back on CPAP and had lots of spells last night and today. He was going to start the process of checking for infections again... all I heard was blah, blah, WHAT... this can't be for real! That just shows you how fast the pendulum swings.

Pastor Mark this morning was talking about being on the mountain and in the valley, and when you are on the mountain soon comes the valley... all I heard was blah, blah, I'm on the mountain, whooo hooo! (for those of you who were there, the whooo hoo will make more sense!) I honestly was thinking about last Sunday, being in the valley, and how I was grateful to be on the mountain for a change today. His sermon talked directly to our life right now, and how we need to see the good in what we are going through even though it can be so rough some days. I did tell Caleb on our way home that one tangible positive I have found out of this whole situation is that I have been able to spend more time with him than normal. I am so thankful for that. This time of year I rarely see my husband it seems and I am grateful that we can spend quality time together, even if it's in the car talking.

Really, I wasn't that shocked to hear what the doctor said. I had a feeling something would be up. The boys looked good though and had good coloring, and really no spells while Caleb and I were there. They did stop Luke's feeds because he hasn't had a poop for a while. I really pray that he can start to digest things better because he needs to start eating more and gaining weight. His brother, on the other hand, is still eating and pooping quite well. When we got their Terry, their nurse, told us she almost died laughing when she changed Max's diaper. He had a poop the size of his head!!

Max sleeping with his tiny pacifier!

Max, you can see his pacifier by his hand... so small!

Luke, he sleeps with his tongue out, haha :)

Little Luke, I love him!

All I have to say is tomorrow is another day, a new story, but still a reason to believe in miracles!!! :)

A Good Day

Yesterday was a good day. I love being able to say that! I showed up yesterday to find both of my boys off of CPAP and in nose cannulas and in room air... breathing on their own. Praise God! It seemed almost surreal after the week we had. I know this might not last, but I have learned that when the good times come I need to celebrate in them because I never know how long they will last. It is amazing when they were doing well how it impacts my mood. I can't help but BEAM inside knowing they are progressing.

Both boys are up to full feeds for their size. Max is at 21 ml and Luke is taking 15 ml. Both are getting their breast milk fortified with extra calories and calcium at this time. Soon they will be bigger and stronger I hope. Max is up to 2 lb 11 oz and Luke is 1 lb 14 oz! They look so cute too! So cute! I wish I had some good new pictures to post but I have to wait until Dad comes up with me, he's the ultimate baby photographer! I got some pics but they aren't so good...

Max, using that pillow like a body pillow.
He was supposed to be on top of it but wiggled himself off.

Yesterday was also so fun because the nurse that was on let me do a lot with the boys. I was able to help and handle them lots. I think a big part of that was because they were doing well. There is nothing better than feeling like I can help or comfort my babies. It can be so frustrating when you haven't seen them for a day or two and you get there and talk to them or touch them in their isolettes and then they have a spell, and you feel like you caused it! Yesterday was totally different. I was able to comfort both of them at different times and make them come out of spells and even fall asleep when I was touching them! Max was all bent out of shape because the nurse put him on his other side to sleep, to shape his head. He apparently doesn't like that side AT ALL and was having a minor spell and just being super fidgety. She told me to put my hands on him and just talk to him and he calmed way down and fell asleep! It felt great to do that!

Today is Sunday and we are off to church this morning. It is amazing how different things are from last Sunday. The boys were not doing well last Sunday and we went to church for the first time since I was admitted to the hospital three weeks prior. I am so thankful we did though. You hear how it is important to praise Him in all things, at all times, in every season and I think last Sunday was a very tangible lesson in that. We did praise Him, but with much pleading for help. We also were uplifted by all the support around us... but today I am looking forward to shouting praise!!!!
Ephesians 3:19
And to know this love that surpasses knowledge
that you may be filled to the measure
of all the fullness of God.

Friday, June 11, 2010

Little Hands...

Last night Grandma Candy and Grandpa Joe made the trip up to see the boys. It was so fun to see them... it is every time! They are doing a little better. Baby steps, haha! Luke is off of the CPAP and is breathing well and Max is just on CPAP now with no aid really, just breathing on his own with the constant flow and is doing better. He is still having spells but they haven't been as frequent or severe so I pray he keeps getting better!!! Also, Max is off of antibiotics too. PRAISE GOD no infections!

Both are gaining weight, Max a little faster than Luke. Max is a little puffy too, just from some of the IV fluids so he looks extra chunky because of that. Both are eating really well and climbing slowly.

Max did get some x-rays done of his heart and chest to see if anything was wrong there to cause his spells. The doctor said that he has PDA... you can look it up... just means that he has a valve of his heart that is not closed (and wouldn't be at his age yet). The doctor is not worried about it at this point and is just going to watch it and see if it will close. Otherwise there is medication or surgery to close it... both with side effects. So we will see!
Max and I comparing hand size... I win!


Max's chubby feet :)

Max, being lazy... like forgetting to breath!

Daddy giving Luke a back rub :)

Dad and Luke holding hands

Luke saying "talk to the hand, leave me alone!"

Tuesday, June 8, 2010


Caleb and I went to see the boys tonight and heard some good news from the doctor. Both boys' blood cultures came back negative. PRAISE GOD! They stopped antibiotics with Luke but they are doing some more tests for Max to see if he might have some other type of infection because his spells are still pretty frequent and severe. I really pray he can out grow that. It could be caused by some type of infection but most likely it is just because he has an immature central nervous system. Pray that his little brain starts to tell him to breath! It's not fun to watch them "bag" him. They use that bag to fill his lungs back up to remind him to breath. I can't watch them do it.

Otherwise they are doing pretty well. Max is now 2 lbs 6 oz and Luke was really on the climb but then they stopped his feedings for a day because he had a little throw up come back. He is 1 lb 11 oz now but I am sure he is going to chunk up like his brother. They both look so cute and I hope that they will be able to move past the CPAP soon so that they don't have to have those big contraptions on their heads. It makes it so hard for me to see what they look like!

Massive Max :)

Little (but mighty) Luke :)

We heard the song "He's my Son" on the way home. As you can imagine I was pretty emotional. As I was hearing the words I couldn't help but think of the boys far away from me in their incubators, wanting to take their place, take their pain, wishing it would all be over soon so I could hold them how I wanted, when I wanted, at home. When I looked this video up though it gave me a whole new perspective. Our situation at times seems like it can't get worse to me, and then I watched the video and felt totally humbled. Can you imagine having to watch your child be tortured like that?! And beat... unaware of the outcome! How amazing that it was all done for us... so that we may have everlasting life. Thank you, thank you, thank you Lord.... I know that my sons are in the hands of God, which there is no better place for them to be! If you have a minute please watch this video.