Transfusion Complete

I can't believe how awake I feel right now. We stayed up until their transfusion was completed around 2:30 am. They tolerated it very well and their temperatures remained stable. The blood was cold, so they wrapped them in 3 blankets to help keep them warm. We got to bed around 3 am.

After only 1 hour, the nurse called to say that Ethan was awake and ready to eat. He took 32 cc in the middle of the night and I could barely keep my eyes open. Sydney was asleep, so we left her in her bed. We went down at 10 am this morning for another feeding and both of them did really well. Ethan took ALL of his feed between me and a bottle 'chaser'!! Sydney took a record-breaking 28 cc! I can't believe how pink they are--I knew Ethan was pale, but I had no idea how much of it was anemia. They look great and their energy level is through the roof compared to yesterday. Ethan is still awake sucking on his binki after getting a full feeding. We are thrilled. Here's a few photos of the transfusion last night.

They had IVs in their heads--a little creepy looking, but easier to not get pulled on.

Here is what the blood looked like. It was only red blood cells, so it was really dark and looked almost purple. This is the same pump they get their feedings in, so it wasn't scary looking at all. I have a video of it, but it is too large to upload. I tried all through the night--didn't work.

So glad it's over and so glad they look so good this morning. They are pulling their IVs out right now.

What a day

I feel like I haven't sat still today. We came to the hospital for our first of three feedings at 7 am to find two sleepy babies. After a frustrating try, I stopped attempting to wake them up and they both took in zero grams by mouth. Bummer. I got in my car and went to my little sister's bridal shower in Bountiful and came back for the 1 pm feeding. They were both awake and our nurse told us (in a tone that sounded like "they need a dose of tylenol") that Dr. G had ordered that they both have blood transfusions.

I immediately felt the 'mama bear' syndrome and got pretty upset--in Heather style. I asked a lot of questions and the nurse paged Dr. G to come talk with us. We found out that their hematocrit levels were both 24 and this was after several weeks of watching it in weekly labs. He said that he believed this is why the babies were so sleepy and not progressing on their feedings. He had told the nurse earlier that if they had the transfusion that Ethan may stop having bradys, Sydney may get off oxygen, and their oxygen saturations would improve. He said, "if we do the transfusion, I foresee them going home in a week. If not, it will be at least a couple weeks."

Doug and I had a hard choice to make. There are risks with blood transfusions, but we were informed that this transfusion would just be red blood cells (a.k.a. blood doping :). We needed to sign a consent form to allow the procedure. He said that if we chose not to do it, they would draw labs again in 3 days or so but said it would most likely not change. The thought of someone else's blood in my babies made my stomach sick and Doug was equally opposed to the idea. I asked about giving them my blood. They are both my same blood type. Unfortunately, we are unable to do that and have my blood processed in time. It would take weeks to 'clean' my blood to have just red blood cells. We fed them (Ethan 24 cc and Sydney 22 cc) before going home to consider what we would do.

We decided to pray to know what we should do and both felt strongly that we should proceed with the transfusions. After some tears and discussing our worries, we returned to the hospital, signed the consents and I gave a blood sample. They test my blood for antibodies to make sure the babies are given blood that is a good match. Ironically, the other mom of twins in the Special Care is going through the same thing today. Her babies received transfusions earlier today. We were able to discuss our worries together and see her babies receiving their transfusion. It wasn't as scary as we'd thought it would be. Their 7 pm feeding reminded us that they are anemic because they don't have much energy. Ethan took 10 cc and Sydney 2 cc.

So, here I am at 1 am (now Sunday) blogging in the hospital. Ethan and Sydney are receiving their transfusions right now. They are given about 1.5 ounces over a 2-hour period--it's about 10% of their blood volume. They are nearly 1 hour into this process and are doing really well. They take their temperature, blood pressure, and watch for rashes or signs of stroke. Our nurse, Rena, is literally staring at them in there. Doug and I are boarding at the hospital tonight so we can actually get some sleep before their 7 am feeding tomorrow.

A few photos from today. My aunt Joanie gave Ethan and Sydney these adorable shirts today. They are premie size and I thought I'd let them 'wear' them for a moment. The nurses tell us not to bring any clothes for them because they could get lost in the laundry even before they could wear them. Thought these looked adorable. Thanks aunt Joanie.

I decorated Ethan's new cast today. I might add a little here and there as the week rolls on.

Three feedings

The moment of truth arrived today at 1pm when we met with Annie, the occupational therapist. We were anxious to see how the babies 'performed' to see if we would move to the next level of feeding. Both babies were awake and ready to go. Ethan took in 18 cc (not his best, but showed Annie how he gets many burps when he eats) and was still looking hungry afterward. Annie recommended that we do a bottle 'chaser' and give him as much of his remaining feed that he would take from a bottle.

Doug was a natural--Annie said so herself and she's an expert at this stuff. She actually asked that we email her his photo so she could use him as an example. I am not surprised. Doug really enjoyed it I think, because he had a big smile on his face the whole time. Ethan took 26 cc from the bottle. This left only 10 cc of his feed to be given through his feeding tube! Annie said we could do that every time. We were so excited to have this as a possibility so we can go home a little faster.

Sydney did well herself--22 cc. Annie didn't want us to do a bottle chaser with Sydney today, but said we could in a few days. We've been using a shield that we're trying to break her of and didn't want to confuse her with a bottle.

Annie said she will recommend THREE feedings per day! Scheduling of this is a little difficult--we'll be moving to 7 am, 1 pm, and 7 pm. Not sure how I'll make it into work with those hours, but we'll see what happens. I may do work from home next week. Annie made an appt with us for next Friday and said, "we'll probably be making some big changes then." Next Friday seems far away, but we are excited to be to the next step.

We paged the doctor on call today and discussed Ethan's 26 calorie fortified milk. He's been getting lots of belly aches and we've talked to the doctor everyday for the last 3 days to see if they'll move him down to 24 calorie. Today's doctor agreed right away. That's a big victory.

I also asked the doctor about Ethan's bradycardia (bradys). She clarified that they only keep them in the hospital if he had a signifiant brady. This means that he requires stimulation or oxygen to recover. If he recovers on his own, he can still come home. That was great news. By this definition, he has only had a few significant bradys. His last one was Feb 24th. Sydney's last one was the 15th. We are in better shape for him coming home than we thought.

Both of them gained weight. Ethan of course gained a large amount because he was weighed with a new cast. Sydney now weighs 5 lb 12 oz or 2596 grams. Ethan is low 6 lb 3 oz with his cast or 2814 grams.

I went into the 7 pm with higher expectations because of their success earlier. We left disappointed with both babies asleep and gaining zero. Bummer. This is a rollercoaster ride...wishing I wasn't in the front seat getting nauseated.

Our house in the country

Today brought a lot of changes for our babies--or at least the first changes in a while. Ethan got a new cast today. The nurses weighed his previous cast and it was 47 grams (1.5 oz) and we realized why they hadn't weighed him before and after casting. His cast is wet and weighs a lot more! The nurse estimated that his new one weighs 94 grams, but it was still wet. So, we still really don't know.

It took the nurses 1.5 hours to soak it off last night. They held him in a small basin of sugar water in a heated bed last night. I understand they had to mop the floor this morning because some of the water had splashed out. I'll admit that I was glad we didn't have to do that! I'd rather change their poopy diapers...even the 26 calorie ones that are SO smelly. The nurses call our babies 'the stinky twins' and we don't blame them! They are really gassy and their diapers are something you'd have to smell to believe for such a tiny baby.

The Neonatologist on staff today talked with us about putting Ethan on oxygen. We're pretty torn. Ethan is still having bradys (one again while we were there at noon) and have oxygen desaturations. They aren't sure if he is really getting sick or if he is just having a hard time breathing when he is sleeping really hard. Our main reasons are having another tube on him and it makes his feeding more difficult. Sydney has a harder time because of her nasal canula in her nose. We're going to consult with the Occupational Therapist, Annie, tomorrow to see what she thinks.

The nurses are slowly weaning Sydney down on her oxygen and she is doing well. She is down to 24% today. Room air is 21%, so she is getting close. She has been as high as 30% in the last week.

Here is a short video of Dr. Faux examining Ethan's foot before re-casting. If you listen closely, you can hear what he says about his progress.

Our nurse today noticed that Ethan is having bradys after he gets hot. They are in a heated bed and when Ethan's temperature is higher, he starts breathing faster and then has a brady. She asked the doctor if she could move them into an open crib (while we were there today). The doctor agreed that they had outgrown the bed. He said they'd kept them in it to drown out the noise in the Special Care. Those full-term babies can really scream when they're hungry! So, we were upgraded to an open crib and they moved us to the other side of the nursery where it is quieter. The babies that have been next to us are there short-term and so there is a lot more commotion. We call it our new 'house in the country'.

I thought I would show what it looks like when they weigh the babies--this is before Ethan's casting (a little out of order here at the bottom). They get pretty startled. This is also the only shot we have of Ethan without his cast this morning.

A little clarification on the feeding. We are allowed to feed them for 30 minutes each once per shift (twice per day--shifts are 7-7 am and pm). This is why we feel some amount of stress when they don't do well because we only get two tries everyday. It's hard to gauge when they will be alert and awake to eat and we're finding they need 9 hours (2 feedings) between our tries. The babies are fed 3 hours apart on the same schedule--1, 4, 7, 10. We are thinking we'll move to 1 pm and 10 pm for now and see if we find them awake. It's a little exhausting.

1 pm feeding: Ethan 32 grams, Sydney 22 grams.

10 pm feeding: Ethan 0 grams (slept so hard), Sydney 10 grams.

Ethan technically lost 14 grams today, but that is without his cast. The nurses estimate that he gained 33 grams--5 lb 15 oz. He'll 'gain' a lot tonight with a new cast. Sydney gained 28 grams, 5 lb 10 oz.

Day 33

I am starting to wonder if I give too many details on this blog and bore everyone. I literally write all the news that I can think of every night. I have enjoyed keeping this up-to-date so I have a record of these events with photos and video and my family and friends (and even strangers) can keep up with these amazing babies.

Now for the updates. Ethan gained 68 grams to 2708 last night and Sydney is up 100 grams to 2520 grams. This puts Ethan at 5 lb 15.5 oz (yes, just shy of 6 lbs with his cast!) and Sydney is 5 lb 9 oz. Ethan's foot will be re-cast tomorrow, so we'll try to remember to ask them to weigh him before and after the cast so we have an idea what it weighs. Their feedings were increased by 1 cc each. This brings Ethan's feed to 54 cc and Sydney to 50 cc.

Today's 1 pm feeding went fairly well. Ethan took in 28 cc again--we're hopeful he'll jump up to his 40 cc record again soon. He is brady-free since yesterday at noon. Sydney took in only 8 cc. It's difficult to just be patient while she learns to eat. We get discouraged and then remember that once they get this (so we're told) they will take off and be home shortly. That is, as long as Ethan stops his bradys. We meet with Annie, the occupational therapist, again on Friday afternoon and we're hoping they are 'getting it' by then.

We decided to go back for the 10 pm feeding tonight (instead of going at 7 pm to find them sleeping--that's been the trend the last few nights). We are thinking of doing this every day from now on, but are a little anxious about staying up late and getting up early for work and school. We'll see how we hold up. When we arrived, we were told that 7 pm was a little rough time for Ethan. His oxygen saturation dropped and wasn't coming up on his own. They gave him a little oxygen and called the Neonatologist to examine him. They decided to take some labs to see if he was getting sick (RSV, etc.). His white blood cell count came back normal as well as a test checking the ratio of red to white blood cells. They said they will watch him carefully tonight.

As a result of the 7 pm rustling (being examined and blood drawn), Ethan was really sleepy for our 10 pm feeding. We were frustrated, but know his breathing is more important that eating. Here are a few videos of us trying to wake him up. I talk about "oral motor" on the second one. This is one thing the occupational therapist taught us to do in the very beginning. It helps teach them to open and bring their tongue down. Premies sometimes keep their tongues on the roof of their mouth and that doesn't work for sucking properly.

Tonight, Ethan ended up getting zero in his feeding. Sydney got 10 cc. Not our best day for feeding. It is so frustrating when we know that this is something they have to 'get' before we can take them home.

Ups and Downs

I think another mom in the Special Care says it best, "we're on the front seat of the rollercoaster." That feels pretty much like our day today. Today the babies officially are 1 month old.

The 1:00 pm feeding went well with both babies taking in 22 cc. Ethan was brady-free until noon today. His last brady had been at noon on Sunday. That was 48-hours with no bradys...so that's progress. Just a bummer that he had another one. My mom came to help me and it was a good thing. Both babies were awake at the same time and it's a circus act feeding them together. After the feeding, I got to show my brother my cute babies. My friend Kayla and her mom also came. It was so fun to show them off.

Ethan gained 30 grams (1 oz) and Sydney gained 80 grams (2.6 oz). They are bulking up fast on the scales. We went back for the 7 pm feeding and fed Sydney. She got a whopping 8 grams...a little disappointed. Ethan was really sleepy, so we hung around until 10 pm and hoped he would wake up. There was a new baby born tonight that was admitted that is right next to their bed. It made for a hectic feeding time at 7 pm, and Ethan wasn't awake enough at 10 pm. He had a big goose-egg of a feeding (a.k.a. zero grams). It's tough to be up so late without success.

Here is a fun shot from the 10 pm feeding tonight.

We brought some cards to decorate the babies' bed tonight. Doug's nieces, Amanda and Maren, sent some cards that we thought would look great on their beds. Thanks for sending them Amanda and Maren!

Here's a view of Sydney after her weight tonight. It's the best shot we have of her umbilical hernia.

A record-breaking day

Happy Monday and welcome home to my brother, Matt, who returned from his mission in Mexico City today. His flight landed right in between our hospital visits-way to go Matt! It was great to see him. It was worth the 20 minutes of us standing waiting with excitement.

Ethan and Sydney are still growing like weeds. (That is an odd analogy-kids and weeds.) Ethan gained another 80 grams in one night and is up to 2610 grams or 5 lbs 12 oz (with cast). Sydney gained 30 grams to 2340 or 5 lbs and nearly 3 oz. That was great news. We also found out their length. Sydney is now 17 3/4 inches and Ethan is 18 inches long. Everyone hears a 3 lb 10 oz baby and thinks they can fit in our palm or something--they are nearly the length of a full-term baby, just really skinny.

Some good news about Sydney today. The premie-sized onsie the nurse tried to put on her did not fit her! She is wearing a newborn size onsie today. I am sure she'll fit into other premie size clothes, but it was still fun to hear that. They are also wearing newborn diapers-even if they are massive on them.

I remembered to take a photo of my addition to Ethan's cast I made yesterday. Maybe it's working (or maybe it's all the prayers) but Ethan had NO Bradys today!

Today's 1 pm feed was stellar. Ethan set a new record-taking in 40 cc of his now 52 cc feeding. Yes, yes...that is over 75% of his feeding. Sydney did well for her at 10 cc of her 47 cc feeding. Her max is still at 12 cc from Saturday. We drove down for the 7 pm feeding and left once we saw how sleepy they were. I tried to wake up Ethan. I tried everything I could think of, but to no avail. We went to my parent's house to visit with my family and returned for the 10 pm feeding again. We have the luxury that few have--no kids at home. We are able to go multiple times and even late at night in order to catch them awake.

Here is how we found them at 7 pm...apparently not on the mood to snuggle next to each other.

At 10 pm, Ethan took in 20 cc and Sydney a record-breaking 25 cc! Doug and I drove home tonight just before midnight talking on our cell phones (we needed to get both cars home) and both felt so grateful for a good day.