8:05 AM

It is 8:05 AM on Tuesday, I have been up on and off since 3AM. Feeding Henley then pumping trying to lay back down to only have Crosby start fussing and have to get up and console him. I think that I have slept 30 minutes since 6 when Henley woke up screaming for food an hour early. This is how the nights go. Up and down no chunk of time to sleep.

Normally I would have been at work already for an hour, now I am sitting in baby puke from last night and there is no organization to the bed or room. Jamin tries to get as much sleep as he gets up for work at 4:40. We are doing the best we can not living at home and having nurses come in every couple hours to check his vitals and wake him up. We are hoping to get out of here today or tomorrow. I cannot imagine living at home as a family of 4.

We have gotten a lesson in NG pumping because he will be coming home with an NG tube to eat through until his suck/swallow and stomach tolerate normal amounts of food. We have his carseat challenge today to make sure that he can spend 45 minutes in his carseat.

9:14AM Wednesday, I am sitting at home on my couch my two babies are in front of me in their rock n’ plays. We were discharged yesterday and left Children’s about 4PM. It has been a whirl wind and as excited as I am to be home I am also overwhelmed to be home with two babies and no nurses/doctors to check in on us. I will say that it is nice to allow my baby to sleep without getting vitals taken and poked.

We came home and fed both babies, Crosby has an NG tube which goes into his nose and down into his stomach. He eats wia a pump that puts breast mild down the tube at a certain rate. Our gold is to get to 47ml in 30 min, we have to work down in 15 minute increments until we reach goal. It is a pain in the butt because he has this tube that does not come out and we have to be careful not to pull it out. I really hope we get off of the pump soon. He is not strong enough to eat normally yet so we have to supplement with binky feeders and slow flow bottles until we get to some normal state.

The babies fell asleep last night and we ate dinner, my mom spent the night with us because Jamin had to go to work. Thank god she did. Crosby decided to cry from 9-1AM pretty constantly, we are not sure if it is gas pains or true pain or just super fussy baby. The nights are seriously hard and there is really no sleep to be talked about for me. I am not going to lie this is a lot harder than I thought and it is just beginning. I just think that twins and one with hurt surgery is a lot to handle and I am trying to do my best. Sometimes I just want to sleep all night though.

Enough complaining. We are home, Crosby is healthy and doing so well compared to others. We have a great home to live in that Jamin built with his own hands and we have a ton of family to help us. In the grand scheme things are great I just need to learn how to get through the nights.

Life at two weeks

I have been a mom for just over two weeks now. I cannot believe that they have already grown and changed so much.

Henley is over her birth weight and I feel so satisfied that all of our hard work with feedings has paid off and is working. She got her first bath from Grandma Sue which was adorable, I find that I miss her when she is sleeping because she is so entertaining. She is fussy about 3 AM and does not want to sleep. We are usually up for about an hour and a half at the 3 AM feeding. Jamin does not really love the 3 AM awake Henley as he is ready to go back to sleep at that point in the night. We rock her and hold her until she drifts off into dreamland again.

Crosby now has his PICC line out and only is hooked up to an NG tube for feedings as well as chest sensors. We are still working on weaning him off of morphine. Watching him go through withdrawals the other night was SO hard. I feel like we have gotten over that hump and now we are on a slow road to no drugs. He is more alert and his eyes are so amazingly gentle for all that his has been through. I feel more and more everyday that he knows who I am and senses that I am his mama. He for sure knows his dad and looks for him all the time. It is so cute that they are so bonded already. We are picking him up a lot more and everyday I feel like he is becoming my little baby boy more and more. I am not afraid to touch him and this makes me SO happy.

I am still working on healing and it is amazing how my body is responding. I am about 10 pounds away from my pre-pregnancy weight and I am astounded how well my body has handled the c-section and all that has been our life after birth. I have not had the normal time that moms do to go home and relax with the new addition. I have been moving back and forth to Children’s and have ha very little downtime. i am trying so hard to make sure that I take care of myself so I can be the best mom possible. I am feeling more and more like getting out and moving my body, being stuck inside a hospital room for hour and hours is really getting hard. I just want to breathe fresh air and feel the rain on my face at least once a day.

Grandmas are our saving grace! We are so lucky to have the best grandmas in the world. They come and bring food for me, they hold and console crying babies. They sit in the room and allow me to get out for a bit. They keep me company when Jamin is gone. I feel so blessed that my children will grow up with grandparents that are close and are so amazing. Having these babies is really a gift to our families as well; we are allowing them to become uncles and aunties, grandmas and grandpas. The transition is amazing to watch and it melts my heart that our kids know them all so well already. Without our families we COULD NOT do what we are doing. They have been so much help that it is crazy and we cannot thank them enough.

Picture time!

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Grandma Aurea!

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Grandma Sue

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Crosby is looking like my baby boy!

Picture time

Moving to “the floor”

We just moved to “the floor” this is the last stop before we get out of here. Crosby has to start tolerating feeding and work down to only oral pain meds before we can go home. I really hope that this happens soon; I want my babies home with me. I do not want to worry about spending the night at the hospital in cramped quarters. The CICU was posh compared to where we are now so this will take some getting used to.

Tomorrow the babies will be two weeks old. I cannot believe it, I look back now at pictures of my belly and wonder how they even grew in there. The body is an amazing thing. I am feeling stronger daily which helps with all of the running back and forth that I have been doing. I feel like I am a mom in some moments yet sometimes I feel like they are not mine and I am just taking care of them. It is a very odd transition to go from yourself and husband to a family of four. I really think it will help once we are home as a family and can start to live without doctors and hospital rooms.

On that note, Henley just pooped her pants and I heard it from across the room. Duty calls.

Day 10 of life and waht is it like to live at Children’s

My babies are 10 days old. I still cannot believe I have two children yet, at the same time if feels like they have been a part of us forever. I am slowly getting the hang of being a mom. I can say that feeding babies it a full-time job. I feed Henley about every 3 hours then have to pump for Crosby for 15 minutes. I am MIA about 6-7 hours a day between feeding and pumping. I am proud that my body is producing nourishment for my babies but it is a lot more work than I thought. You really can’t just “slap them on the boob” and be all good.

Henley-

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I have had the most bonding time with my little lady. It was the two of us at the hospital and I take her everywhere with me. I feel bad because she has been carted around to and from Children’s Hospital (CH) since day 3 of her life. We have not had the perfect coming home where we can just settle in and develop a system or schedule. She has done double the work getting my milk to come in as well as teaching me how to breast feed. We are a little team her and I and I am surprised at how excited I am to have a baby girl. She is a pistol and is so strong even though she is tiny. She goes from 0-100 FAST and makes the best old man faces. I call her baby bird and I love holding her little body. She is long and lean, chicken legs and arms. I can tell she is growing and changing already. Her coos melt my heart and I love watching her twitch in her sleep. We have a few clothes that fit her but she is swimming even in the up to 7 lb clothes. She is amazing.

Crosby-

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I have held my son two times since he was born. Both before his surgery. It is so hard because all I want to do is rip off all of his tubes and run away with him. I really do not know how he looks. I have seen him once without any tubes attached. After surgery he was swollen and now that tubes are coming out and swelling is going down I am starting to see such a cute little boy. I astound myself when I say out loud that I have a son and a daughter. I really want to get to the point where we can go home and I can hold and play with both of my children. He has this cry that breaks your heart and it is so hard to see him in discomfort. The past two days have been hard, he has had a lot of pain and fits accompany that. He cries and screams as best as he can, his voice is so hoarse from being intubated. He has been on a lot of morphine, we are not happy about that but he needs to be comfortable and we know that the doctors are doing the best they can. J has such a strong bond with Crosby, he has been with him since the moment of birth, for a while we each felt like we only had one child. J felt like he only had a son and I felt like I only had a daughter. Once I was discharged things got better but it is still hard when I have to go home every night with Henley. Crosby has had so much family around him thought is is amazing. He knows he is loved and soon will be in his mama’s arms.

Children’s hospital

All of my dreams of coming home from the hospital with our new baby have been shattered. We came from one hospital to another and have to juggle people going back and forth, timing, food, cars, visitors, and much more. J has been staying here at CH a lot, I cannot sleep here until we are on the next level “the floor”. I hit a wall recently where I just was over coming to CH and being in a hospital. I want Crosby to be able to take a breath of fresh air, him to feel the fall breeze on his face. For us to go on a walk as a family of 4. All of this cannot happen right now.

Henley and I come to CH in the morning and end up leaving about 7-8 at night. We have an area with a TV and a little moses basket for her to sleep in. There is a rocking chair where I feed her and a pump for me to use here. She does so well at adapting but I still hate bringing her here everyday. We have had a lot of people bring us food and it is amazing, there is a shared kitchen with microwave and fridge to keep our food. We have to eat in the kitchen but can have drinks in the room.

CH is an amazing place and to be honest without them here my son would not be alive. The nurses are AMAZING and we have our favorites for sure. They all love Crosby and we so appreciate the hard work they do. At the same time we really do not want to be here, no parent wants to spend this much time with their sick child here. I feel guilty at times because I get to a point where I break down but I know that is could always be worse. There are families that spend months here, we see small children riding their tricycles with their parent following with their IV pole. We see tiny ones that have been here for months right after birth. We are the lucky ones and I do not ever want to sound ungrateful but it takes an emotional toll on our family.

I would encourage any and everyone to donate to Children’s Hospital anytime they can. We are now going to be life long donors, because of CH we have our little boy.

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5 things that surprised me about pregnancy

I love reading other blogs about pregnancy and what to expect week by week. I loved being pregnant and growing my babies. I also know how hard we worked for this and did not take it for granted. All of the aches and pains did not seem important at all because I was told that this was impossible for us.

Here are 5 things that surprised me even though I though I knew a lot about what to expect…

1- Bloody noses, every morning I would wake up and have bloody noses.

2- Weight gain, I was really surprised that gaining weight did not bother me as much as I thought it would. I worked really hard to be fit and I thought that gaining weight would sort of bother me. The opposite came into play, I was so happy that my body was doing everything needed to grow 2 babies.

3- Hip pain, I never knew that I could wake up in so much pain. The second trimester was the hardest for me pain wise.

4- Appetite, right after we found out my appetite sky rocketed. All I wanted was to eat and eat meat. We did not eat a ton of meat before but all I wanted was hamburgers. It was so interesting to know that my body was craving what these two needed. It was also fun to eat things that I would have never eaten before (potato chips are SO good). I also needed eggs in the morning, at least 2.

5- Baby connection, Once I could feel them at 21 weeks I started to really get to know these two. I could tell that baby A (Henley) was a mover and a shaker. I knew when her movements would be coming and when her head would bobble around. I also could feel B (Crosby) kick and punch around. They each had their own way of moving and it is amazing to see those carry over  now that they are out.

Here are some pics of the journey:

15 weeks with twins

15 weeks with twins

Bump shot from the 2nd trimester

Bump shot from the 2nd trimester

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2 weeks before their arrival.

Surgery Day

Our baby boy had surgery Wednesday 10-15-14. He was scheduled for the first case in the morning so his dad spent the night with him and myself, Henley and Grandma went home to sleep. I woke up and immediately thought about my baby and how hard today will be. We rushed around to get to Children’s and I was so nervous. I walked into the room with his daddy holding him in the rocker. I lost it. Our brand new baby was going to go into open heart surgery, where anything could happen. We spend the next 30 min holding him and crying. We really did not know how things would end that day.

I cannot go into much detail as these are the moments for our family but I will say that no family should ever have to make that walk with the surgeons to the OR and their 6 day old baby. We spent the afternoon napping and thinking about our boy and how much we love him already. Sooner than we expected we got news he was off bypass and closing up, we packed up and waited for the surgeon Dr. Chen to come talk to us. The surgery went really well and he did great, all of the questions due to his specific anatomy were addressed and we do not expect any more surgeries. We were SO relieved.

We got to see our boy and even through the tubes and chest opening and wires he looked like a new baby. Crosby has two birthdays one when he was birthed from me and one when his heart was fixed. We are so grateful to the team that worked on him, there is no way one can convey how lucky we are and how thankful we are for these people at Children’s Hospital.

Day 1 post OP-

Crosby was extubated day 1 and that is almost not heard of, he came back like a rock star from surgery and has done well keeping his levels great. That afternoon Crosby had a few hours in which he was in a lot of pain. It is gut wrenching to watch you baby cry and squeak because the tube was taken out, he looked like he was in so much pain. We tried consoling him but it was difficult when you cannot touch much and cannot pick him up. They finally got his pain under control and he was resting as we left for the night. That was the first night he was alone but he needed quiet and rest and sometimes being the best parent means stepping away. He is so strong already as a brand new baby, he amazes me everyday.

Crosby’s journal v. 1

While I have been away from C his dad and grandma have been keeping a journal of his days (this is copied exact as written):

10/9-

I was born a little a little after 10 am, my sister came first. I was a little blue so after a kiss by mom I went away to ICU. G and G Aahl and Herman came to meet me. So did my uncles and aunties. They tried many times to put an IV into my hands (8). Finally they put one in my belly button. A team from Children’s Hospital (CH) came and brought me and daddy there. My first evening they checked my blood sugar, blood pressure, and kept me on CPAP to help breathe. I didn’t like that breathing thing in my nose. My nurse Kate kept me on my tummy to sleep ad I liked that. I peed many times. I kept not wanting to breathe this made everyone nervous. They came and did an echo on my heart. Mommy and Henley missed me a whole lot and I missed them.

10/10-

Daddy spent the night withe me. We slept a few hours. everyone thought I looked good in the morning. I get my oxygen  from nasal prongs today. I have a small collapse in my lung so thy are keeping me on oxygen. The cardiologist says I can have surgery Wednesday. The did another cardio echo today and got really good pictures. G and G Herman visited so did uncle Adam. I pooped really good! Carlotta my nurse worked hard to keep me warm and have good numbers. Joan came and placed a PICC line in me. I had many visitors from my family that loves me a lot. They took our my umbilical IV, oh that feels good.

10/11-

We slept good, from midnight till 2 AM I was wide awake so daddy got to feed me for the first time. I ate 1/2 ml in half an hour. Then I got fussy until 4:30. My numbers were good through the night. My grandpa’s watched me so daddy could go run Elwood. G Herman got to feed me. I got to watch the huskies game and got fed again by my auntie. After that I stayed awake to talk with my daddy for 1/2 hour.

After that evening Crosby’s numbers dropped, they thought the hole in my heart was closing which is normal for babies but that is bad for TGA. It was really rough and doctors had to give his prostaglandin again, this makes him stop breathing. His numbers were still unsteady, teams came in swiftly and many things needed to happen, x-ray, high flow system to make him breathe at 40 breaths per minute, fluid sucked out from his stomach incase they needed to intubate him. A blood transfusion happened as well. His numbers got better slowly and his heart never stopped the whole time, but he did have times where he stopped breathing. The team had to hand pump is breathing twice until he could continue on his own. It was a scary 2 1/2 hours that no one saw coming.

10/12-

There was only one spell in the night when I stopped breathing and my numbers stayed good. All my medications will stay the same and the doctors tell me to rest sleep a lot. It was really hard on my body to go through the bad spell. I really hope that my mom and sister will be discharged today so I can see my mom. I miss her. Dr lewis said that I am looking stable they are lowering my oxygen and prostaglandin to a minimum. I hate that stuff and it makes me cranky. I have to get all my food from TPN now, and cannot eat at all. My numbers stayed good all day and the seahawks lost, boo. Mommy and sister came for a visit, that was really wonderful. Mom cried a lot. My nurse Jean game me a suppository so I could poop a lot, it felt really good. Today has been a good day of rest.

10/13-

Daddy stays with me a lot and I love him, he calms me when i get fussy. Every hour they lower the nitrous oxide a little bit more, they are trying to bring this to 0 today.  Sister gets to go to the doctors today but I have to stay here with my doctors. Mom sister and G Aurea  got to visit me. My mommy got to hold me for the very first time, that was SO nice. I wished my grandma a happy birthday, she cried. No other changes in my medications. My grandpas’ came to visit at night too. My daddy decided to spend the night with sister and mom, my G Sue is sleeping with me tonight.

10/14-

My mom and dad came early with my sister for rounds to hear what the doctors are saying about me. My surgery will be here tomorrow, I am resting and puffy a lot because I have not peed. My mom got to hold me and my sister today, I have missed her. We slept in mom’s arms and I was so peaceful. My grandmas were here, G Sue got to hold my sister and G Aurea talked with me a lot and loved touching my head. Mom and dad left for a while to go get food. Finally I peed a ton and felt a lot better. Mom and dad had to meet with the surgeon  and go over my surgery. I got to lay in bed with my sister, I missed being close to her. She moves a lot more than me but I knew she was there. I had a  lot of visitors uncle and untie, all of my grandparents, and Erin. Everyone loves me and wants me to get through surgery. Daddy is sleeping with me again, I love him.

Birthday

I have been a mother for 52 hours. Henley and Crosby were welcomed to this world at 10:15 and 10:16 AM. I can honestly say that it is amazing and really hard work all at the same time.

Thursday

We got to the hospital after packing the cars and dropping off the dog. I was emotional and hoping that everything would be okay. At the same time I was excited and ready to find out what we were having. We got checked in and started IV, changed into the gown and got the belly and below shaved. Then we got pushed back, waiting was not too bad. We met with our parents and brothers before getting checked on by the team of amazing nurses, doctors, and support people that would be there.

Finally it was time, I had to be along while J waited for me to get anesthesia and prepped for surgery. I was scared about the spinal block but really and truly did not feel a thing. All of the sudden my heals got warm and my butt cheeks were falling asleep. It was a breeze, they positioned me while I still had some movement in my legs. It is quite an odd feeling to know your legs are there but not to feel them. I was tilted down on the table to make sure all of me was numb. You are really exposed as you are naked laying on a table with a bout 10-15 people around bustling and getting things done. I am happy that I am confident in my body. Right before they are ready to cut the called in J.

At that moment I started to get scared and nervous, J came in by my head and all I could do was look into his eyes. He said he was ready and took a few pics. Then we held hand during the last few moments of life just us two. The docs start to cut and you do not feel anything but hear the suction. I could talk to the doctors and they said everything was great. Our doc said to get the cameras ready and then we handed it to our anesthesiologist to take pics of the birth moment. J stood up to watch our children be brought into this world. Baby A was born at 10:15AM and Jamin got to tell me she was a girl, Henley. Henley is a little spitfire at only 5lb 1 oz. She was brought to my face right away and I got to kiss and love her. Baby B was born at 10:16AM, Crosby. Crosby has his own journey as we have known since 20 weeks that he has a heart defect. We were not sure how things would be once he was out. I got to see him and he did not look good, grey and not breathing much so the NICU team took him away and J went with our son. Henley was brought to me and we breastfed while I was being closed up. Once your baby is out all you want is to hold them and touch them but closing up takes the longest. I was so lucky to have a wonderful doctor that allows skin to skin while being closed, I will never forget that moment. It feels odd to have your insides manipulated as you feel pressure and sensations but no pain at all.

Once closed we were wheeled back to our recovery room where family was waiting. J had to go with Crosby in the NICU so it was so nice to have family there waiting and supporting our new addition to this world.

It was a long day, our babies were born, and one was taken to Children’s hospital where he will stay until surgery and recovery. Baby sis and I are at a different hospital missing J and brother with all of our hearts. It is hard as we have had to split forces so I can recover myself and learn how to be a mom while J is learning how to be a dad for a high risk baby somewhere else. We could not have gotten through the past 2 days without our families. They have down everything for us and we are so appreciative.

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Crosby

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Henley

Last belly shot

Before the babies

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Team Aahl before Crosby was transported  to Children’s Hopsital

TGA

As I sit down to write this I am 37 weeks and 5 days, we are so close to meeting our children. This will be a long one to catch everyone up to speed.

Bump shot from the 2nd trimester

Bump shot from the 2nd trimester

During the second trimester you have your 20 week ultrasound, this checks growth and looks at every little bit of the babies. It was weird knowing that the sonographer knew the sexes, we always wanted to be surprised so it was very important to us that we not find out. Baby A checked out great and then baby B she found an issue and my heart sunk. She said there was something she saw with baby B’s heart and that she had to go check with the doctor. Sitting and waiting was so hard for those few minutes. The doc came in and gave us the news that baby B has transposition of the great arteries (TGA). All I remember thinking was if the baby could live outside the utero, and it can.

TGA is when the aorta and the pulmonary artery are switched, so oxygenated blood gets recirculated to the lungs and the non-oxygenated blood gets pumped out to the aorta, this is the opposite of how the heart is supposed to work. Basically at 5 weeks gestation your heart is a small tube, this tube twists and folds up to become the four chambers of the heart. Baby b’s twisted the wrong way. This does not cause any issues in utero because the

heart has all chambers open and circulating, once the baby takes its first breath the chambers close off and then you have the oxygen issue. Yeah this was a lot to absorb and I just remember thinking that our lives are going to change a lot now that we have a baby with a heart defect. Not to mention that the treatment for this is open heart surgery within days of birth.

We were set up with a wonderful cardiologist at Children’s hospital and had to switch to a high risk doctor at UW, we now would have to deliver at UW because they have a level 3 NICU and they work with Children’s to transport the baby. Our low intervention dreams of the natural process all washed down the drain. We learned at our Children’s appts that this is treatable and that baby B will have to have open heart surgery within 3-5 days of birth. We will be living at Children’s for about a month total time from birth to discharge to allow for healing and making sure that baby is stable. During that time I will be over there with A trying to learn how to be a mom to both babies when I cannot even pick B up to hold.

It has taken a lot of time to be able to talk about this without tears streaming down my face, it is still hard to think about this happening so soon and not knowing how things will work out. During this pregnancy we have had to learn to let go of so many things that we wanted and hoped for. It is not easy or fun and I really wish this was not happening to my baby and family but we have no choice. We are choosing to move on into this unknown with light and love and support from so many family and friends that it makes it just a tiny bit easier. We know that our family of 4 will be home and together just not right away and we cannot change that. This has become our reality and as much as it sucks we are trying our hardest to go in with a positive attitude and make the best of this situation. I have no idea what it will feel like to have my baby taken away right after birth, or to not have my husband next to me (he will be going to Children’s with baby B). I do know that we will get through this and that we will learn and grow and soon enough be home with both of our babies.

This post was not fun to write but this blog will now become a place for people to be updated about baby B and how we are doing. We really appreciate all of the light and love that is being sent our way.

 

Be well.