Weston Boy

So Carter is still in an isolette so it's a lot harder to see him and take good pictures. He's also almost constantly swaddled except when we hold him. Weston is in an open warming bed and could move around a lot more. The nurses have also tried dressing him a few times. So here are a few pictures of little Weston boy.

Just lounging...

His pajamas that barely go past his knees. He is a loooong boy. Kinda like his daddy :)

Weston decided his day was just way too hard! 

Oh Bills...

I just spent an hour and a half just trying to sort through the bills we've gotten so far. All but two of these sticky notes mean billing problems. I get to deal with all of the phone calling tomorrow, but thank goodness for insurance!!!

I thought this would be a post of random things, but they're all about having babies!

So I went on a run a few days ago. I think it was exactly three weeks since my c section. The running part wasn't too hard because I went really slow but I sure could NOT recover. I had to walk home the same distance I ran because I was totally worn out. Guess I should be patient...it has been five months since I worked out.

For those who remember one of my New Year's goals was to weigh less than I did before getting pregnant...that shouldn't be too hard. At my two week appointment I weighed two pounds more than I did before getting pregnant. Now I just can't eat my feelings!! :) Haha and I'm totally eating large amounts of cookie dough right now. Uh oh.

I am really looking forward to taking a picture of my two babies TOGETHER. They miss each other!! They are looking more and more similar every day...Carter is gaining weight and Weston is no longer swollen. Ahh! I miss them when I think about them!

Its gonna be interesting when Carter is home and Weston is still in the hospital. We can't take Carter to see Weston so...we'll see how that works out!

I still don't feel like a mom. Not in the sense that I feel old, but that it's still so weird that I have a baby...two babies! I see moms of babies in the NICU that are older and I think that I can't be a mom! I should feel different or something.

So guess how awesome Ryan is...he's working full time, seeing at least one of his babies every day, and still finishing all of his classes with everything we've had going on. And don't worry...he still has time for March Madness too :) So that equates to pretty dang awesome.

Carter. They can put him on his stomach because there's no risk of SIDS when they're on constant monitoring. 

My mom holding Carter before going to the airport. 

Weston

Weston

Baby Update

Here is another baby update for those interested!

Carter now weighs 3 lbs 6 oz. What a little chunk!! :) He gained 50 grams in one day! He's now eating 28 mL every three hours and having calories added to it to help him gain weight. He is still on some oxygen because sometimes he decides it's a little too much work to breath. That's alright though. Several days ago I started non-nutritive breastfeeding with him. This just means he practices latching on for a while once a day. Generally, preemies have a hard time coordinating their breathing, sucking and swallowing all at the same time. He's doing a good job so far and a few days ago they let him try without pumping before. Today he got a full feeding from me! My milk supply kind of overwhelms him sometimes. So far he's been pretty alert so it's been a good bonding time for me. I'm SO glad he's catching on so quickly because I know so many babies have a hard time!

Weston started eating about a ago. He started with 1 mL every hour and yesterday was up to 4 mL. The milk that he eats comes out his first hole (it's yellow and liquidy) and they reinsert it into the second hole. So far they're happy with how much he's absorbing. He gets about 1/3 of his nutrition from milk and the rest from TPN. He is now just over his birth weight so hopefully he'll start gaining weight quickly now because Carter is catching up! Weston is close to being weaned completely off his pain and sedation medications and only gets them every twelve hours. He's been more fussy recently because he's a little addicted but his little cry is pretty darn cute. Hopefully I can get a video soon but his bottom lip absolutely quivers and I have a hard time not laughing at him! In about six weeks he'll get the surgery to reconnect the two parts of his intestines.

Progress

Both our boys have been doing really well since I last posted. It's amazing how busy I've felt over the past few days just trying to visit them each once a day mixed in with all the pumping I've been doing. I have been getting WAY too much milk which is definitely a good problem to have. At the same time, it's been pretty difficult to be able to pump often enough that I don't hurt. I'm working on decreasing my supply so let's hope it works soon!

Carter's feedings started up again a few days ago. He has been tolerating them well so they've increased them from 3 mL every three hours to 8 mL. As long as his body digests what they give him, they'll increase that amount each day. He is completely off all assistance for breathing so he no longer has an oxygen tube up his nose. That's better for pictures :) Even in the first few days when both boys were at IMC, Carter would flail and stretch around a lot. He did that in my belly too!

Weston is doing so well, especially considering he had such major surgery five days ago and only weighs four pounds! The only blood products he's received in several days is a dose of platelets after he got his PICC line. So that means no blood and no plasma. They have been able to wean him off the ventilator enough that with another baby they could take him off. Because Weston is so sedated for the pain he is in, they worry if he were to be taken off, he wouldn't breath on his own. They're working to lower his sedatives so they can take him off the ventilator and just give him a flow of oxygen. His cultures came back negative several days ago for the infection. His head ultrasound remained about the same with the hemorrhage in his brain so we hope that's better when they check again in about a week. They've also taken him off the bilirubin lights for jaundice. Because they are lowering the sedatives, he has been more responsive the last few times we've seen him. He tries really hard to open his eyes but it's extra hard because his eyes are still swollen from the surgery.

The two of them definitely look alike. It was harder to see the first few days but I was holding Carter last night and his face was squished some. It made him look like he had chubbier cheeks and look much more like Weston. Both boys have very long fingers, toes, and arms and Carter's hands look especially huge compared to his skinny arms. My dad joked with Ryan last night that they already had him palming a basketball.

Witnessing Miracles

At thirteen weeks into my pregnancy, they told us I was bleeding so heavily that if it continued bleeding, it wasn't safe to continue the pregnancy. At fifteen weeks, my babies were diagnosed with twin to twin transfusion syndrome. If nothing were to be done, there was a 90-95% chance my boys wouldn't survive. At nineteen weeks, Weston's already weak amniotic sack was punctured in order to perform the surgery that could save their lives. My water didn't break that day and both babies still had heartbeats 24 hours after surgery. At thirty weeks my water broke and I delivered four days later. At four days old, Weston had intestinal surgery for necrotizing enterocolitis and was 27 cm away from being pulled off life support. This was his second life-saving surgery in the seven months of his life. 


What is it about these tiny babies that their lives have been preserved by the Lord so many times? I feel blessed to be their mother and to get to be a part of their lives each day. 

Carter

Carter

Weston after surgery. You can see the two holes on either side of his abdomen. 

Weston on his ride up to Primary Children's

Carter

Weston

Weston

Weston

Yesterday morning on Saturday the NICU called us in our room upstairs and told us that Weston's x rays were looking about the same but they were concerned because he had a large loop of air in his intestines that wasn't passing through. His stools were also hard. They decided to get him up to Primary Children's which has a level 4 NICU instead of a level 3 at IMC. The transportation team came down from Primary's and they decided to take him by ambulance rather than by helicopter because of the snow. He was transported up to Primary's and I was quickly discharged from the hospital so we could follow soon after. 

We got up there and they basically said he was sick enough that they needed to go in and find out why. They didn't know what they would find and the surgery could have lasted anywhere from an hour to over three. 

Here is an e-mail Ryan wrote to our family on Saturday (2/26/11).

Hi again everyone. They prepped Weston for surgery this afternoon and he went in right about 3 pm here. Surgery took about an hour and forty minutes and then Dr. Black, who performed the surgery, came and talked to us. The news was in between really bad and good. They had to remove about 75% of his small intestine as it was completely dead tissue. The fortunate part is if he had no small intestine left they couldn't have saved him at all. The doctor said he wished it had been the large intestine instead of small. The small is what absorbs all the nutrients, so not having it is very detrimental.
So now he basically has about 27 cm of small intestine, separated into 2 parts(most babies are born with 140 cm). As he grows the intestine will hopefully grow and keep up and eventually (most likely 2-3 months) they'll be able to fuse the small intestine back together. This doesn't mean he'll be able to eat normally after that.
For now they will feed him through an IV. In a few days they'll be able to put a "pick line" in him which will feed into his chest right near his heart. This tube will allow them to feed him more dense nutrients and give him medications and other things. They will feed him TPN, which is just liquid food that has everything he needs. His intestine will still have problems for a few years, maybe 3-5 years. We can't know for sure right now. It will take that much time for his intestine to grow enough to be able to digest the amount of food he's eating. This means he will be fed TPN for the first few years of his life.
So right now he has two holes in his stomach, each one is the end of the two small intestine endings inside. Over time they'll be able to remove spit and other things from the top hole that comes out. Eventually they might be able to feed him, it will come out the first hole and they'll transfer it down to the second hole so it can pass through the colon and large intestine. How awesome is that? This will be done just to keep his intestines healthy with things passing through them.
He still has an infection right now. We learned that he has e-coli in his blood. That's probably what started the whole chain of events. This will most likely get out of him in the next few days with antibiotics.
Long term Dr. Black said there's no reason to believe he won't be able to go to school when the time comes and run around and play like normal. He should be totally fine after a few years. So there is light at the end of the tunnel already, but we have a million obstacles to hurdle before that!
He also has a little bit of blood in the ventricles of his head. He's at a stage 2 (of 4) in that. They'll watch this closely, but as long as he stays stable post-surgery the risk of it progressing should go down. Stage 4 is bad, right now its ok and can completely correct itself. No blood in the brain yet.
Oh, by the way, this whole intestine problem is called "short gut syndrome". I did not make that up, that's actually what they call it :)
Ok, this email is long and a little scatter-brained. Just trying to remember all I know. That's it for now. We still trust that the Lord will continue to bless us. He already has with this. We know this is the Lord's will for us. I joked with Sarah that we're making up for our relatively easy lives up to this point! We've been so blessed and this will be a great challenge, but a great opportunity to learn and be humbled. We love you all and are thankful for the continued prayers.

-Ryan and Sarah

P.S. Carter is still fine. We went and saw him and he's as well as can be. They will still monitor him closely for any infection, but all is well.

Today we picked up my mom from the airport (thank goodness she is here) and went and saw Weston. He is doing as well as can be expected. His clotting factors may be getting a little better and they were able to wean him off the ventilator some throughout the night. 

We were also able to go to a sacrament meeting at the hospital. We weren't able to go to church last week and it was amazing how good it felt to be back. We feel so blessed and thankful that even though our little boy will have a very rough first few years of life, he can be healthy in the long run. Thank you for all the prayers. 

Day Three! (Email to my family)

Here is an email I sent to my family earlier today. 


Hello everyone. Thanks for all the emails and calls and sorry I haven't been able to respond to all of them. I love hearing from you though!!

I'm downstairs in the maternal fetal office where I have all of my normal appointments. I saw my own doctor today which was nice. We had an ultrasound to measure their size and their fluid levels and both are doing surprisingly well. They're both about 5 cm. The smaller baby weighs 2 lb 10 oz in the 17.6th percentile and the bigger one weighs almost 4 pounds at 3 lb 14 oz in the 61.7th percentile. They are at 29 weeks and 31 weeks 1 day respectively. Got all that? Such great progress! That's 6 lb 8 oz of baby in my belly!

Whether I'll need a c section or not is still kind of up in the air. Some doctors I talk to say yes, you will have a c section no matter what. Others say you'll have one if the smaller one is breech and another has said if we can keep them in a little longer we can still pull the smaller one out vaginally. A lot of it depends on what my doctor is comfortable with. We sure wouldn't want to try and deliver them vaginally and then have to cut my cervix because the little one's head is too big compared to his body. Eek!!

The doctor I talked to after my ultrasound said it is less likely that I'll go into spontaneous labor than another woman whose water broke this early simply because the surgery made it so much more likely that my water will break. They know my water didn't break because of some other kind of complication that will also make me go into labor. Make sense?

Ryan will be gone most of the day today. He works and then refs his last game for the season and will come back for a little while and then go to his little brother's LAST regular season game. I'm sorry I have to miss it but the state tournament has a live feed online and the later tournament games will be on TV so hopefully they make it far in the tournament!

I'm now done with my non stress test. I'll be going down there every day whenever they can fit me in. The little ones behaved really well  and so the test was nice and short...only about 25 minutes which is rare with twins.

The food hasn't been too bad. They let you choose what you want each day. My nurses have all been great. I'm back in my own clothes which is much more comfortable. They have me wearing leg wraps that squeeze my calves so I don't get blood clots. It took me a little while to get used to them but then I was able to sleep just fine. Kind of like a mini massage. Speaking of massages, they have a massage therapist come in on Tuesdays and Thursdays. I need to make sure I'm on the list!!

I'm having some minor contractions but they don't hurt too much. Several times this morning my back has started hurting really bad very suddenly...to the point that I can barely breath. Thankfully it hasn't lasted! I'm also gonna take a shower in the next little while...one of the highlights of my day!! :)

Well that's a lot of info so don't get too bored when I send you emails. I might just post this as a blog so don't be disappointed when it's the same stuff :) Love you all!!

Sarah

Yeah, I'm in the hospital.

On Saturday night, we came home late from my in laws house and were getting ready for bed when my water broke at about 11:15. It wasn't a ton of fluid but I noticed right away. At our last appointment they told me the larger baby's amniotic fluid wasn't clear. On the ultrasound this made his intestines look shiny, basically from digesting blood. I could tell right away that must be what was coming out!  We got ready right away (using the list I made weeks ago. Good thing I had so much time to prepare :) and left after talking to the doctor on call. The doctor here used three different tests and found that it had broken and said I'll be here until I deliver.

It could be up to four weeks until I have them. After your water breaks, there is a high risk that the babies will get infected because there is no protective barrier around them. They've found that up until 34 weeks it is worth the risk of infection to keep them inside but after that it's just better to deliver. They've developed enough that it's safer to avoid that risk. For me, thirty four weeks would be March 18th. I can do this, right?!

I'm on antibiotics almost constantly. I'll have two days of IV antibiotics and then five days by mouth. They gave the second round of steroids for their lung development (butt shot!) and if we can keep them in for 48 hours they will be fully effective. If I go into labor, they won't try to stop it because labor is usually one of the first signs of infection. Also, if I were to deliver now, I would have a c-section because the babies are so small. We'll have to wait until Tuesday because of the holiday to find out how big they are but I'm guessing they're about 2.5 and 3.5 pounds. 


The first day I was here they had me downstairs on the labor and delivery floor. I wasn't allowed to eat or drink and the babies and my contractions were being monitored constantly which got to be a nuisance. I had to stay in the same position as much as possible and when I went to the bathroom it felt like a huge fiasco. But now I'm up on the postpartum floor. Up here I just record whenever I have contractions and the heartbeats are checked once per shift. Yay! My second nurse was a lady I had back in October when I was 13 weeks along. She even remembered I was here for Halloween!


As a side note, they switched baby A to B and B to A, so that makes it confusing for us! As of now, the bigger one is in the A position with his head down. The smaller one keeps flipping so there's no way to know where he'll be. 


I've gotten about 6 hours of sleep in the last two nights so hopefully I can go back to bed soon. They came in at 2 am to give me the steroids and another round of antibiotics. The first antibiotic was making my arm hurt about 6 or 7 inches up my arm so my nurse gave me a warm blanket to help with the pain but I had to call her back in after a little while because my arm was super swollen. The IV was still in my arm but had slipped from the vein so it was filling up my arm with the medicine. My nurse said she should have listened to me when I said it hurt...well yeah! haha but things are all settled now after another vein was stubborn and they had to give me a smaller IV needle. So here's to an undetermined length of time in the hospital! Wish me luck!! 

Freedom!

I'm very happy to inform you that I am no longer on bed rest. How great is that? We had our appointment on Wednesday and I made sure to ask about the reasons I'm still on bed rest. The big concern after my surgery was that the blood clot in my uterus would become unattached and make my water break. The blood clot has been slowly absorbed back into my body. They believe they can see a remnant of the clot still, but nothing that is a concern.

I've loved being able to do more the past couple days. The day of my appointment I had so much energy because I was just so excited :) I've been doing chores around the house and went to a few stores too. It's a lot more fun than I ever remembered! It has been a great birthday present to me!!

The only lame thing about being off bed rest so far is that I don't have a car. My car sat for about a month and a half without being driven and the battery died. Died, as in dead completely. Forever. We kept meaning to drive it randomly or just start it when it was really cold out side, but we didn't, and now we're paying for it. Literally.

At our appointment we got a 3D picture of one of the babies. It's a picture of baby A who is now head up (the little stinker!) But everything else is going very well with these little ones!

That's his hand up by his face. Tell me who you think he looks like!