Actually we were having trouble keeping track of all of the twins EOB’s (explanation of benefits). We would get one from October and then in the same pile of mail one from February. Then we got a letter saying we were going to collections due to bills not being paid. Don’t even get Tadd started on that one. We went back to our EOB’s and it showed we were 100% covered and the insurance agreed with us so we didn’t understand why this outside medical group was saying they weren’t paid. It was a little sketchy. My favorite part was when they said they had sent us 3 letters asking for payments. When going over the information it turns out they were using an old address. Heres the kicker, the collection letter came to the right address…..things to make you say hmmmmm. So Tadd spoke with the head of benefits at Cottage Hospital and they sent us each EOB in chronological order in a huge stack. Included was a nice note and the lovely baseball hat.

While the day was uneventful with the babies, it was a bit overwhelming otherwise. My dad got out of the hospital, my mom got into town, Hava’s mom was in town, and we had a number of visitors. Subsequently, Hava really didn’t get to rest during the day and was super exhausted in the evening. Then she only slept about 2 hours last night. After pumping in the middle of the night, she went over to the NICU to see the babies. When she came back, she told me that I was going to be bummed that I didn’t go with her.

“Why?” I said.

“Because I got to hold the babies.”

“WHAT?!?!?!” I screamed.

“I’m just kidding” she chuckled.

I have no pity for her regarding her sleep deprivation. NONE.

The babies looked beautiful this morning. It is so quiet at this time so I just hovered over their incubators and stared. The twins have wonderful nurses this shift. All of their nurses have been good, but these two have been especially considerate. Maybe because I was an emotional mess last night. I know my hormones are all over the place but I think I was crying because I ACTUALLY GOT TO TOUCH LOEN! My hands were shaking so bad and I couldn’t stop crying but I finally got to touch my little girl. Before the doctor was saying things like “your son” or “your daughter” and it felt weird because it has been so hard to connect with the twins, but last night was like a bonding breakthrough. It was only for a couple of seconds because they didn’t want the humidity to escape from the incubator while I had the little port hole open but it was wonderful. After that I had to sit on the wheelchair and have my mom wheel me back to my room. I was emotionally drained. As I was coming out of the NICU I ran into Tadd. He had gone out to dinner with Dee and Andy and was just coming back. When I told him what happened he looked excited. I went back to my room while Tadd went to say goodnight to the babes. They were both a little more stable last night hence the reason we all got to touch them just for a moment. Photographic proof of the historic event:

Me holding Loen’s hand for the first time:

Tadd holding Loen’s hand for the first time:

Me and Derby:

Tadd and Derby:

My mom was able to touch Derby for the first time:

A rare shot of Loen’s face. She has Tadd’s eyelashes:

Updates:

• Loen:

  Her white blood cell count (WBC) came down from 122,800 to 89,000. Still high but it looks like she is fighting the infection. The hematologist decided against doing the full blood replacement, but will continue to evaluate her. She is off of her dopamine right now but has needed some supplemental oxygen. Not a lot just a little to help her along. She has lost a little of the water weight and her hands and feet look less puffy. They told us both of the twins were going to get PICC lines (peripherally inserted central catheter – an IV line that can stay for weeks at a time. It is thread through a vein and ends at the entrance to the heart. It is a good way to quickly get medications and fluids to the babies when they need them). They decided to hold off Loen’s till her WBC’s look better. Her blood pressure was a little more stable than yesterdays. Her nurse said she is dying to give her a bath because she still has little crusty bits left over from birth. I cant wait to see them do that!

• Derby:

  They tried to get the PICC line in him this afternoon but unfortunately it did not take. They were able to get it into his arm (how they were able to get it into his microscopic veins I’ll never know) but once it got to his chest it started to curl under and they couldn’t advance it anymore. So they stopped and will try again today. He still has the umbilical lines but they have a higher risk for infection and need to be replaced with the PICC line. Hopefully all goes well with that today. Both of the twins got blood transfusions yesterday because they were removing so much blood for tests they had to replace it. Chest xrays also looked fine today for both. So no news is good to us so far. The nurse said she usually changes his linens at 8pm so we might be able to help her tonight. It sounds like such a tiny thing but I’m excited at the prospect of doing anything with them.

They will do the 3 day brain ultrasound this morning. Were hoping for a negative result. It is going to be hard to wait for the results till this afternoon but the doctor told me last night that they did not have any big shifts in blood pressure which would usually be a sign of a brain bleed.

In other news it will be a Meemaw weekend (both of the Grandma’s want to be be called Meemaw. We are going to have to call them Meemaw L (for my mom, Lisa) and Meemaw T (for Tadd’s mom, Tamie). My mom flew out the day after the twins birth and Tadd’s mom arrives tomorrow for a 2 week stay. The twins are going to have so much love (not to mention a million pictures taken) this weekend.

I should go to bed now but I realized I have to be up in 30 minutes anyways to pump. Guess I’ll just look at pictures of my little ones…

Loen, it looks like she is tanning!

Loen and I (thanks for the pink robe Brandy!!)

Derby

Tadd and Derby

We spoke with one of the neonatologists about an hour ago. They are very straight to the point but in a kind way. No one gives you false hope, they just go over the facts. They want the babies to be as calm as possible this first week because increased blood pressure or stress can cause their brains to bleed, so both of the twins are sedated. They did an ultrasound of both of the twins brain this morning and there wasn’t any evidence of bleeding, which the doctor said was good. They will repeat the ultrasound at 3 and then 7 days. They are concerned with the 3 day ultrasound. We were told this is their honeymoon period. Things could look good for the first 24-48 hours but then they usually go down. If they were to have a brain bleed it would be around the first 3 days. Hence the “roller coater ride” they keep telling us about. Here is how they are doing for their first 24 hours:

• Loen: We still haven’t been able to touch her. Any kind of touch stresses her out and causes her blood pressure to go up and down. So they are trying to “group” her care. Doing what they can all at once and then letting her rest. They had to stop earlier because just a little movement upset her. She will be getting a spinal tap later today to rule out meningitis. Due to the infection they are probably going to replace all of her ‘old’ blood with a transfusion. The doctor said she will survive the infection and it can actually be helpful to her as it will cause her body to mature a little faster. She is on the ventilator with only room air but has severe respiratory distress syndrome (RDS). The respiratory technicians have been closely monitoring her and she has had 4 doses of surfactant to help keep her alveoli open. They said she looked a little puffy from retaining the fluid they are giving her in her IV. I couldn’t tell because she looks so tiny to me. She has perfect little hands.

• Derby had a good night according to the night nurse. They have both of the twins on dopamine to help with their blood pressure and Derby was off of his for several hours last night. He had to go back on it this morning to keep him stable. We didn’t get a chance to touch him today, we don’t want to do anything that can increase his blood pressure. His chest x-ray looked better than Loen’s. He too is a little puffy from retaining fluids but other than that he is doing ok. Which is the best that we can ask for.

I couldn’t see anything because they put a drape up and wouldn’t lower it when I asked. Unfortunately Tadd and Dee couldn’t see anything either because they made them sit behind the drape too. Loen was out first at 8:44 am and Derby came exactly a minute and half later at 8:46. Derby made a little yell when they pulled him out but that was it. They were instantly brought to the side of the room where the NICU teams were waiting. One of the nurses said we picked the perfect time to go into labor because the whole team assembled so quickly. There was Dr. Soffici and then we had not 1 but 2 neonatologists there to lead the NICU teams in stabilizing the babies. The nurse said usually only one doctor is around but there was a meeting later that morning so 2 were able to come. Three respiratory technicians were also in the room. It was like a Navy SEAL team of highly organized professionals working on the twins. Loen pinked up quickly but Derby was having some trouble. At one point one of the doctors came over and said he wasn’t responding and they would have to give up in a couple of minutes. Before that could even sink in someone shouted “He’s coming around”. Tadd and Dee looked around the drape and said he was starting to turn from blue to pink. They then wheeled him out of the OR to go to the NICU. They stopped just for a second so I could see him then they left. Loen started to have some trouble after they gave her the surfactant and they had to do some chest compressions. They didn’t stop for me to see her because they wanted to get her to the NICU to get her stabilized. I wanted Tadd to stay with them but they said no because there would be too much going on. The doctors would come talk to us once everything was situated.

I was wheeled off to the recovery room with Dee while Tadd went to pack up our room on the high risk OB floor. We had SO MUCH stuff over there. I was lying on the gurney remarking how easy this whole birth thing went. The spinal didn’t hurt, I barely felt the c-section and when I got to recovery I had no pain. Well I would soon be in for a surprise. After about an hour and a half they were ready to transfer me to my new room on the postpartum floor. We were going to stop by NICU so I could finally see my babies. They raised the gurney so I was sitting up to see them. So much for no pain, I definitely found it then. But I able to ignore it so I could see my tiny little babes. I went to Derby’s isolate first. He looks a ruddy reddish/brown color due to his prematurity. I was able to put my hand in the isolate and his fingers curled around my pinky. Both of the babies were put on ventilators and had IV’s inserted into their umbilical cords. When I got there they told me Derby was on room air! No extra oxygen for him. I had been so upset because I didn’t get the second shot of steroids but I guess just one seemed to help out some. He looks like a boy. Derby weighed in at 1 lb and 6.5 oz. No length on the twins yet as they felt it would just stress them out more to try and do that. Next we went over to Loen’s isolate. I knew we would have to make it short because I was starting to have more pain and was feeling flushed and nauseous. We were unable to touch Loen because they are having a hard time keeping her blood pressure up. She was on 24% oxygen which isn’t bad considering that room air is 21% oxygen. She had bruising due to the fact that her bag had ruptured almost 2 weeks earlier. We just talked to her and stared at her tiny perfect little hands They had put a little blindfold on her that looked like sunglasses while she was under the special bilirubin lights. In her fake sunglasses and pink knit hat she looked a tiny 1 lb 7 oz diva. Then I had to stop the visit because I started to throw up. Which really hurts considering the morphine they had given me during surgery had wore off. So I’m puking, the incision in my abdomen hurts and my skin starts to get hot and itchy (a fun side effect of morphine). We headed to my room so I could lay down and get pain and anti-nausea medications.

We would post some pictures but unfortunately the few that we got the twins were still bloody from birth and not the most attractive .

Tadd and I still still cannot believe we are parents, it is like it hasn’t sunk in yet. We were warned it is going to be a roller coaster ride for the next few months. Derby’s nurse said I gave birth to some aggressive babies, that they were good little fighters. She also said she had been a nurse there for 20 years and doesn’t sugar coat things but they looked really good for 24 weekers. We have hope in our hearts.

We will try and keep everyone updated and post pictures soon. I’m am so exhausted right now I keep dozing off while I’m writing this.

Quick recap:

• Loen 1 pound 7 ounces. AGPAR scores of 6 and 9
• Derby 1 pound 6.5 ounces. AGPAR scores of 1, 5 and 9

My dad came in to pick up my mom. They had a long road ahead so I wasn’t able to visit with my dad for very long. I’m sad they had to leave but my mom said she would be back in a week. I’ve gotten very good at entertaining myself: latch hook rug, drink a liter of water, read the paper, drink a liter of water, write thank you notes, drink a liter of water. Oh yeah throw getting up to pee in there every 45 minutes and thats my day. I am now peeing clear urine I have drank so much water! I guess water intoxication is not a concern when you’re pregnant with twins. As I was talking to my parents the nurse came in with the syringe full of steroids. I was trying to say my good-byes and she just stood in the corner waiting. I hate when I KNOW it is coming for awhile. I like when they just lay it on you what they are going to do and then do it. It is not in the back of your mind that a inch and a half long needle has a date with your derrière. So I finally went through all my hugs and kisses and goodbyes and then the shot. Even the nurses description made the anticipation worse “Sorry but this going to be a deep muscle shot and it will sting”. Yea! Kudos to the nurse for excellent IM injection technique, though the medication did hurt. My butt felt like I had accidentally gotten hit by a baseball. Guess what??? I get another one tomorrow! I would do it everyday if it meant a better chance for the twins. I’ll stop with the ‘woe is my butt story”. The blood sugars have been ok. Higher than normal but not over 200, my highest was 176. Tadd ratted me out when he told Dr. Soffici that I had a roll with dinner (it is better to not eat carbs with the steroids if you can help it). I swear he is quick to sell me down the river. So I got a little lecture on how I should know better but then again he thought the blood sugars were ok.

I still had more contractions today than yesterday but they are chalking it up to the babies getting bigger and my not getting out of bed fast enough to empty my bladder. Don’t drink enough water: contractions, don’t empty your bladder fast enough: contractions. It is a damned if you do, damned if you don’t situation.

Dee and the older boys came into visit. They always lighten my day. That and the story that Dee told me of how angelic the boys looked lighting candles for the twins at church. She said she started to tear up and then noticed the middle one was playing with the flaming stick used to light the candle. Yup, those are my chicken heads!

So today went well. We made it through another day, even though Tadd looks exhausted. Tadd said he wishes he could trade places with me but for those of you who know Tadd know that wouldn’t be a good idea! Good thing I love him so much.

Another thing we found out was that we had miscalculated how many days till 28 weeks. In reality we only have 28 days left till 28 weeks!!!!! I feel like the tortoise, slow and steady…..

Souther had to go home yesterday. No more loud games of Scattergories and Catch Phrase. Tadd was afraid that all the laughing would cause problems or stress out the babies. He spoke with the nurse about it, who quickly dismissed the danger. She seemed more worried about what would happen if I was getting upset and crying versus laughing. She said laughing could be helpful, to which Tadd replied “You haven’t played games with Hava’s family”. I think Tadd was upset he was getting his butt kicked! So we are trying to keep things light (as best we can).

My mom has to leave tomorrow so today has been craft day. Some school friends of mine that work at the hospital had stopped by on Friday and brought me craft kits, origami stuff and word puzzles. Then my father in law Jim brought me a latch hook rug. I haven’t done one of those since I was a kid and if I remember correctly I got frustrated and threw it away. Now that thing is like crack. It has become my mission to get it done. I have had my mom and Tadd working on it too. Lord knows what were going to do with it once it is done. It might be the gift that will keep on giving. Someone may get a toilet seat cozy or the worlds smallest bath mat for Christmas…..

Tadd went to work while my mom and I watched Fried Green Tomatoes. Me working on the rug, while she was on origami duty. She decided to decorate the room a bit. We now have a crane mobile over the window.

The cranes that my Mom and Tadd picked out Saturday night for the twins

The neonatologist (preemie doctor) came in and spoke with us this afternoon. After the conversation we all were feeling more optimistic. Don’t get me wrong I trust Dr. Soffici, I just felt more informed after speaking with someone who deals with micro preemies on a regular basis. While she didn’t paint a rosy picture it helped us to understand things more. Dr. Soffici came in around 8pm tonight and we told him we wanted the steroid shots starting tomorrow. They take 48 hours to take effect and I felt better getting them on board sooner rather than later. The neonatologist said that 24 weeks is a gray week, 25 weeks you can breathe a little sigh of relief and 28 is the golden week when you feel like you’re over the hump. We’re still just taking it day by day. Thankful for everyday the babies stay put. We have had a few bad days and more good ones. Everyones well wishes and prayers definitely have helped and make us feel like we are not alone in this.

On a lighter note. The belly button has popped! I wouldnt be surprised if Derby kicked it out. That boy is hyper!

29 more days till we hit 28 weeks…….

The Procardia worked and by noon the contractions had all but stopped. My Mom and Souther were there with us. Dr. Soffici came back in to see how things were going and to talk options. Even though the contractions had stopped we needed to be prepared for the worst. He then went over odds and we were told we needed to make a decision if the babies were to arrive within the next day or two. He used words like “bleak” and said “less than 50% survive and if they do all children born at 24 weeks have one or more disabilities. Blind, deaf, cerebral palsy, severe mental retardation.” Did we want heroic measures or let them go peacefully, how do you make a decision like that? As he was talking the babies were moving, it was horrible. We haven’t gotten the steroid shots yet. He said if we decided not to do heroic measures to save them the steroid shots would prolong the dying process, essentially they would suffer more. 10 years ago the twins wouldn’t have survived. It feels like playing God. Use medical advancements to try and sustain their life or let nature take it’s course. We are trying to think in the twins best interest and not just our own selfish wants.

We have such a hard road in front of us. We hear all these bad odds but then you read a story online of amazing survival. I wonder if our babies would be in the less than 1% group that would be ok, and what are those odds with twins? I don’t want to dwell on it or make any decisions. I feel like now that the contractions have stopped I can put it out of my head, though I know we need to be prepared for what may happen. We are meeting with the Neonatologist later today to talk about options.

Our hospital has a sacred space down by the ICU. I had seen it before when I oriented to the hospital, I have even sent family members of my patients there as a place to gather their thoughts. Yesterday Tadd went down there to pray for the twins. They have a basket of origami cranes made by school children. People can write messages on the wings and leave them in a special place there. Tadd came back with two cranes, a pink and a green one and placed them by my bed. He said he also wrote a prayer for the twins on another and left it in the sacred space. I don’t allow myself to cry often, I figure what is the point. I started to cry when he told me that, just as I am doing now. A couple of more weeks is what we need, I keep praying that we will get them.

Yesterday was pretty uneventful. I blew another IV but the doctor said I already had gotten a weeks work of IV antibiotics (I was getting an IV dose every 6 hours) and I didn’t need anymore. So I’m IV free at the moment. This gives me a new found respect for my patients when they were complaining about their IV’s. I would look at it and if flushed well, wasn’t red or warm I would tell them to try and bear with it so they wouldn’t have to be stuck again. I know what they were talking about now. While I am not a ‘hard stick’ (someone you cannot get an IV into because of bad or small veins) I have very sensitive veins. Yup thats me, the one with the pansy veins. As Souther said I’m “as delicate as a potato chip being mailed across country without bubble wrap”.

We did not get the steroids yesterday as we thought we were. Sr. Soffici is on call this weekend and he wanted to start them when he was here so he personally could watch my blood sugars. The nurse said he didn’t want someone else doing it. That made sense after Tadd told me he read that Dr. Soffici presented at a maternal-fetal conference in Vegas earlier this year. Of the 4 subjects he spoke on 2 were “Monitoring the Diabetic Patient” and “Preterm Labor”. I guess we are in some pretty good hands. I did not want this to happen but since it did I’m glad that we have a nationally renowned perinatolgist and one of the best NICU’s between San Francisco and Los Angeles.

• We now have 31 days till we hit 28 weeks.

• Babies are moving all around. Even poor Loen, she is managing to kick and move around even though she hasn’t much fluid around her. My girl is a tough cookie.

• I’m starting to go a little stir crazy. I’m used to getting stuff done and now people have to do things for me. Tadd scolded me for throwing away a drink container on my way to the bathroom. According to him the 2 extra steps to the trash can were unnecessary. This is when it would be a good time to know how to knit something. But I have tried my hand at knitting before and it wasn’t pretty. We both agreed that the aggravation it caused me last time wasn’t worth it.

Thats about it here in our little room. We didn’t post anything last night because Tadd got some very sad news. His childhood friend Ehren Peyerk, passed away after a long battle with cancer yesterday. Our thoughts go out to his wife and family during this difficult time.