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!