3 Weeks!

Day of life 21
Weight: 1230 grams

Daniel is 3 weeks old today! He is still growing steadily and doing well. He is still using a nasal breather to help expand his lungs without as much effort on his part and seems to be doing well with the settings they have him on.

We are able to hold him twice a day and take advantage of all the time we have together at the NICU.

The doctors are not changing anything right now which is good because they are happy with where he is at. His #1 goal right now is to keep growing and getting stronger!

Day of life 18

Everything is mostly the same over here in the NICU; Daniel is stable and doing well! They are working on gradually lowering his oxygen support to help him be able to breathe fully on his own. He's already on super low levels and there aren't too many lower levels to get through, so he's doing really well, they're just taking it gradually to keep him stable.

Today he will get another bath! He had his first one on Christmas day, and now he'll have one every three days. He definitely did not like the washing, but seemed to enjoy the rinsing, and the nurse said he tolerated it really well. So we'll see how he likes it today!

Daniel's birth story

So here it is - a medium-sized version of the events leading up to Daniel's early birth.

At our first ultrasound Daniel was a few days small but within the normal range. Because Aubrey had congenital heart defects, Dr. Asay (my OB) suggested that we see the maternal-fetal specialists (MFM) at Obstetrix to check Daniel's heart, just to make sure. A few weeks later we had that appointment, and the doctor sent us to Primary Children's Hospital for a fetal echo. This was terrifying and crazy stressful, but when we went, the Dr said his heart looked perfectly fine. A miracle!

We stopped seeing the MFM specialists and went back to just regular visits for a little bit. At the next ultrasound, however, we noticed that Daniel was very small. We started having ultrasounds every two weeks and eventually ended up back at Obstetrix for them to check on his growth as well.

There they noticed fluid in his kidneys, which is fairly common in boys, but combined with his small size they had us come back to keep checking on it. He continued to grow but stayed below the first percentile for size. (After birth they checked his kidneys and they appear to be fine, and are no longer a concern. Another miracle!)

Finally, at another visit to Obstetrix, the doctor noticed that the umbilical cord was showing episodes of absent flow. Basically, the blood and oxygen was flowing in to Daniel, but instead of flowing back out with the waste, it was sitting still in the cord. This, they explained, was nearly always followed by negative flow, bringing the waste back to the baby. A negative flow situation would be very dangerous for the baby and would mean an early delivery.

At this point they sent me to the labor and delivery ward of the hospital to do a non-stress test. This monitors baby's heart rate over a period of time to determine if baby is getting enough oxygen. If the readings were satisfactory, I could go home after 4-6 hours. If not, they would keep monitoring either until they were satisfied, or it was time for delivery. Thankfully, I got to go home after about 4 1/2 hours.

This was repeated for three days in a row - sometimes accompanied by a cord Doppler reading or biophysical profile ultrasound, and always a non-stress test (NST). Thankfully, I got to go home at the end of each one, and got Friday through Sunday off to stay at home!

Monday we were back in for another NST and biophysical profile. I had a weird feeling about this visit - like it would be my last check-in to the hospital before he was born. Sure enough, several hours on the NST monitor and a biophysical profile later, both the specialist and the OB came in to talk to me. It's time, they said. If we wait, we could lose him. So I called Davis, who made it to the hospital within an hour, and an hour and a half later we walked back to the operating room.

After Aubrey's traumatic birth experience, I was pretty anxious to be going back in for a repeat Cesarean, but I had done my best to prepare myself, and Davis again proved to be a fantastic coach and comfort, helping me to get through the procedure. 

Daniel was born at 5:58pm on Monday, December 10, 2018. He weighed 2 lb 5 oz and was 14 1/2 inches long. 

(This is an early picture taken just an hour or so after he was born. He's come so far already!)

Day 12

Day of life 12
Weight: 1010g
Moving up to full feedings tonight!

Daniel is doing super today! This morning the doctor said that Daniel seems to be loving what they are doing for him, so they're keeping everything the same, which is great news!

Now we just wait for him to grow and do our very best to keep all chance of sickness or infection far away.

Daniel's Genetic Results!

We finally received results from the genetic testing, met with the NICU head doctor and discussed implications of their findings!

In short, we were told that they found a small deletion and a larger duplication of certain segments of the 18th chromosome. This is what has caused complications throughout the pregnancy and delivery.

The manifestations of this genetic mutation occur both externally and internally, which explains the different signs we have previously seen indicating a genetic abnormality.

The NICU Doctor said that this will likely result in significant developmental delays for Daniel, but we can't know exactly what will happen until it happens. We have to just wait and see how it will manifest in him.

What does this mean for us? Currently, nothing is going to change regarding Daniel's care or viability for life. At this point, with the data the hospital has available, they are saying that Daniel has a 80-90 percent chance of successfully leaving the NICU for home.

This also, however, has potentially serious implications for the two of us as parents. The doctor explained that both of our children having abnormalities on the 18th chromosome indicates a likelihood of one of us having a mutation on our 18th chromosome which does not copy well. So once Daniel is out of the NICU we will probably be talking with a genetic counselor to get some answers on that front.

Successful extubation!

Age: 9 days
Weight: 1080g (he's now above his birth weight!)

Trial of extubation is successful so far! Meaning - the doctor took out Daniel's breathing tube and he is doing well without it! He has some sort of nasal breathing support still (I can't remember what it's called), and the nurses will watch him closely throughout the day.

He got pretty upset in the process, but between the doctor and nurses they got him calm and in a better position for breathing.

Interestingly, he still doesn't make much noise vocally. I assumed that when the tube came out he would be able to make sound when he cries, but I guess he is still a little young for that. He does make small sounds, but not a full cry. He'll get there :) We are so very excited about the incredible progress he has been making! The Lord has been with our Daniel and we are so grateful.

1 Week!

Daniel is 1 week old now! He is doing so well.
His color looks great, he has been very alert today, and we found his first little poop today! Yay! He continues to respond well to his feedings and we thank the Lord every day for his good health and progress.

He is doing well enough to be able to get off of the ventilator tomorrow, but it depends on the doctor. It was very difficult to get his breathing tube in, so they want to be very confident in the decision before trying to take it out. Here's hoping we will hear his sweet voice soon!

Daniel update

*the goal for right now is to get updates out to those who are waiting on them - we'll get Daniel's birth story  and reasons for early delivery written soon :)*

Daniel is off of the bilirubin lights today! He had had them on since Wednesday, I think. His goggles were pretty cute but it's nice to see his whole face again.

Don is the nurse taking care of Daniel again today. He has taken care of him for several days since Daniel's arrival and we really appreciate him.

Daniel was a little stressed this morning and during his kangaroo care time with Davis. It is so sad to see his little face cry - and at the same time we long for the day we will hear his voice! (His breathing tube keeps him from being able to make any vocal sounds)

Tomorrow he will be a full week old! What a blessing to have had this time with him already.

Miracles, not Coincidences

The journey up to this point with Baby 3 has not been easy. Between emotional "morning" sickness (who decided to call it that, anyway?) and unruly fears popping up at every corner, I felt I could only pray that my stress levels would not affect our little one's development in a negative way. I was so afraid of losing this one too, but at the same time, I felt suddenly afraid of the responsibility of parenthood. We might actually be doing this parenting thing...was a frequent thought. Who am I to raise a child?! I don't know how to do that!

There were many other crazy thoughts and turns, but we won't try to recap them all here. What matters to me even more right now are the most recent developments in this pregnancy.

A few weeks ago, we went in for the 'full-anatomy' ultrasound. Everything looked fine, except that Baby wasn't letting the sonographer get a good view of his heart. So they scheduled us for a second anatomy ultrasound with the area Maternal-Fetal Medicine (MFM) specialists; because of Aubrey's heart defects they wanted to make sure to get a good view of this one. At that ultrasound, we saw the same doctor who had sent us to Primary Children's Hospital in Salt Lake City with Aubrey's pregnancy. You know what he said? The same thing he said with Aubrey. Possible heart defects...very small size...schedule a fetal echo at Primary Children's within a few weeks... Wow. Talk about frayed nerves. He also recommended that we do a genetic screening to rule out Trisomy 18, 13, and 21.

That week, needless to say, I was a mess. I alternated between grit-filled days - where I kept myself determinedly busy until I fell into bed, only to fight a panic attack before finally falling asleep - and 'emotional train wreck' days, which I spent staring into space, halfheartedly doing some chores, and sobbing on the couch. How could this all be happening again? We already did this... It felt like the meanest 'Groundhog Day'-like trick nature could have played on us.

On one of these days, a good friend called just to check in on me - she'd heard about everything that was going on and just wanted to see how I was doing. Her kindness was angelic that day - and it only cost her a few minutes! She is inspiring.

Finally, just two days before our trip to Salt Lake, we got the genetic screening results back. Baby is Trisomy 13, 18, and 21 negative! As soon as those words registered in my mind, an ENORMOUS burden lifted from my whole being. This time, my nightmares had not come true! I knew there could still be a million things that could go wrong, but at least it would not be a repeat of last year. Suddenly, I felt more joy and hope than I had felt in a very long time - possibly years. The fears and anxieties not only of the last week but of the whole pregnancy dissipated in an instant. I was pretty astonished to feel the weight of the load I had been carrying as it lifted.

Fast forward two days and we met with the very same sonographer at Primary Children's Hospital (PCH) who had done our first ultrasound with Aubrey. We had prayed that morning for baby to allow the doctors to clearly see what they needed to, and this exam took half the time of Aubrey's! We then met with the same pediatric cardiologist who had seen us through Aubrey's visits.... But this time, there was no soul-wrenching news! No heart abnormalities were visible on Baby - as far as they could tell, his heart would be perfect. Again, a huge weight was lifted from our souls.

Afterwards, we found a little park downtown and had a picnic lunch. I sat watching the families playing in the park, and Davis lying on the blanket next to me. The weather was perfect. Peace and gratitude filled my soul. Does life get this good? I found myself wondering. I felt I didn't even know what to do with so much goodness and peace. "Enjoy it!" Davis said.

In the days that have followed, I've thought a lot about miracles. Was this a miracle? Would our baby have been okay anyway, or had something changed? I decided eventually that my view on it was what mattered most, and attributing all goodness to God would never backfire on me. He had brought about this peace and healing in our lives, and that was what mattered. I do believe that miracles have been brought into our life; we no longer have to see the MFM specialists regularly, Baby's heart looks just fine, and there are no other concerns to speak of! He is still quite petite, but growing at a good rate. We will have a few extra ultrasound visits to monitor his growth, but we do not feel overly concerned at this point, nor do the doctors.

I know that miracles come when we follow the Lord, obey His prophets, and trust in His will. I know that this is far from the end of our story, but I feel that I can't deny the hope and peace that have been brought to my heart by these miracles of the Lord. Small tender mercies have peppered our days since then, reminding me that there is a loving God in heaven, and He does still work miracles on Earth.

Packsaddle Lake

For most of the almost 3 years we have lived in Idaho, we have been wanting to visit the great Packsaddle Lake. We did try once to make it there on our own, but our little car is not built for the mountains of Idaho and couldn't make it. :( Our first (and only) solo attempt turned into just a long drive both ways, because there was an ENORMOUS puddle in a sharp valley in the road. After we saw the truck in front of us go through it, we realized that there was no way our little car would make it and we had to turn around. There were no other roads to the lake on the instructions we were following or on Google Maps - but we hear that has since been updated!

And so - this weekend a work colleague of Davis' and his lovely wife invited us to go with them to hike and fish around Packsaddle Lake! The weather was PERFECT for hiking, our friends' vehicle, sturdy as it looks, is even sturdier than it looks, and Davis caught his first Idaho trout before his fishing license was even a day old! What a champ.

Isn't the lake beautiful? We are sure loving getting to know the beautiful land of Idaho better. 

New Job!

The time has come and we are officially, temporarily, graduating from student life! We never imagined that we would be living in Idaho long-term, but here we are! Melaleuca - The Wellness Company, has their global headquarters in Idaho Falls, and they offered us a position.

                                                  

(this is their fancy headquarters building)

We definitely weren't expecting it, because we had already tried twice to apply for an internship there and it didn't work out either time. Then, out of the blue last semester, they called Davis wanting to interview him for a full-time position. Next thing you know we are looking for housing closer to Idaho Falls/Shelley!

This is not the road we thought we would be taking, but we feel good about it, so we're off to the next great adventure!

In the meantime, yesterday marks 6 months since Aubrey's passing. I am really missing her today.

We've started seeing a grief and trauma counselor in Idaho Falls to help us prepare ourselves for the anxieties of trying for another pregnancy; while I'm sure we will learn many great things from him, the thing that stuck out to me in our first meeting was the difference between his expectation of where we would be emotionally, and the reality of where we are. He started going through the stages of grieving, asking us questions about each stage to determine where we were at. As he progressed through the stages, we realized the we had actually gone through each step as we should have, and really didn't have any complaints about the grieving process.

I have realized once again that the Lord has been holding our hands and guiding us through this grieving process even more than I had thought. We knew He had been guiding us, and healing us, and helping us to face and work through all of the difficult emotions of the situation, but until that meeting with the counselor, I had not realized just how far He had carried us. My eyes were opened to His hand in the past few months and so many things stood out to me in my memory that I had not noticed before.

We will never stop missing Aubrey, and there will never be a day that we do not think of her. But we can keep moving. We can keep hoping, keep dreaming. We can, to quote a new favorite movie, "Keep moving forward!" (if you haven't seen "Meet the Robinsons" in a while, I think it's still on Netflix!)

Also, we made homemade peanut butter today!

(P.S. - Caspian is still being her mischievous, cuddly self :) 

Caspian

Well, it's a little late but we have a new addition to our family! On December 29th 2017 we adopted Caspian from the animal shelter. They told us we were adopting a male kitten; when we took 'him' in for the required neuter appointment, however, the vet called us right back to inform us that Caspian is a girl! Since we had already had her for about 2 weeks, and all 3 of us were used to her name, we just kept it. The vet says we can call her Princess Caspian :)

She has certainly brought a lot of laughter into the home with her goofball antics and high energy.

Some of her favorite things include:

• drinking water out of the running faucet
• pacing the tub wall while we shower
• chasing anything that moves
• snuggling with us in bed
• getting lots of petting and attention
• being Davis' 'homework buddy' :)

We are so glad that we found her!