Day 82 - Lex is off CPAP

Day 82 – Sunday, October 8, 2017

AGE: 11 weeks, 5 days old (36 weeks, 4 days gestation)

Lochlan:                Weight is 2585 grams/ 5 lb. 11 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 17.7 inches (Birth length: 13 inches)
Lex:        Weight is 2722 grams/
6 lb. 0 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 17 inches (Birth length: 13 inches)

 

Remember that flickering light at the end of the tunnel? Well, it is starting to make us squint. Lex joined the 6 lb club today and Loch is right behind him at 5 lbs 11 oz. They now weigh more than Poppy when she was born (5 lb 3 oz). She was born at 36 weeks and they are now almost 37 weeks gestation.

 

They have both had a steady week of respiratory progress on the CPAP and have had the CPAP pressure reduced. Lochlan has been a step or two ahead of Lex in the breathing department until yesterday when Lex took the lead. He had great blood gas tests and the neonatologist decided he was ready to move to the high flow nasal cannula (the final step before breathing without anything). Usually, babies start on 4 liters of oxygen, but Lex was able to start on a ½ liter and even weaned to ¼ liter later in the day. The new cannula is smaller and requires less tape so we get to see more of his beautiful face. This also means he is ready to start bottle feeding and nursing. I have been told that feeding is not usually a quick or simple process for preemies, but we are sure headed in the right direction. Lochlan has also had a great week. He is so alert when awake and loves staring at visitors, especially the pretty blond nurses. Lex likes the brunettes.

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Day 101 - We are all home

Day 101 –Friday, October 27, 2017

AGE: 14 weeks, 3 days old (39 weeks, 2 days gestation)
 

Lochlan:Weight is 7 lb 1 oz. (Birth weight: 1 lb 10.8 oz.)

Length is 18.3 inches (Birth length: 13 inches)
Lex:     Weight is 7 lb
4.6 oz. (Birth weight: 1 lb 10.8 oz.)

Length is 17.9 inches (Birth length: 13 inches)

I sit here with an overwhelming weight of emotions as we reach day 101 of our NICU stay. Until this moment, I have purely been in survival mode and unable to look in the past or to think about the future in a productive way. Knowing that both of my babies get to come home allows me exhale in a way I have not previously known. Lex will be discharged today. Both of my 24 week preemies get to come home. For the first time I can say that both my babies actually get to come home. I did not always know this to be true, but today it is true. I am humbled and feel gratitude like never before.

How can I possibly thank the team that did for my twins what I could not do for them? They carried my twins to term giving them life. I can’t even say they saved their lives; they gave them life. The statistics weren’t great, but we were never treated as such. The NICU team showed up every day and offered a plan A, plan B and a plan C. The team was compassionate, realistic and never put the twins in a box of assumptions. The NICU team was my womb, my surrogate and guardian angels for Lochlan and Lex. They were the needed mother I could not be. Several of the nurses have spent more time with my boys than I have and some feel more like family than a medical team. We are blessed to have received the right team members, at the right time on the right days which has granted us the greatest gift of our lives, our twin boys.

Like a wrecking ball, I was reminded that we are not in control, we are never in control and that is okay. Fortunately, my faith never faltered, but what I come to know as my truths have been put into practice at full force. I have prayed for acceptance more times than I could possibly count because acceptance is what has allowed me to be present and able to fight alongside my babies. I have learned that as long as I stay present, I can manage everything. From the get go, anytime my mind started thinking about the future, anxiety began to overwhelm my mind. Equally, when I began drifting into the past events I would be overcome with feelings I was not able to process. Conscious, present thinking got me to day 101, the now, and today is the first time I have truly been able to reflect on this journey in a positive way. 

I am absolutely overwhelmed and astonished at how many lives these 101-day-old babies have touched. Letters, gifts, messages and, most importantly, prayers have come from so many people even people we have never met. In a matter of minutes, our life drastically changed and all the things that didn’t matter diminished making our priorities crystal clear. We are blessed to have such strong support from our close family, but every additional prayer has been icing on our cake.

As I look at pictures of my 1lb babies and remember the emotions we felt in the beginning. I have never felt sadness throughout this journey, just all-consuming helplessness. Luckily for me, Kyle has big shoulders and was able to carry all four of us at times. And even luckier, he and I walked hand-in-hand through the celebrations and setbacks which has made us a stronger unit than ever before. At one point he said to me, “I now know why the universe put us together,” and this cannot be more evident to me as well.

The challenges, detours and triumphs all come together to build our story. Walking my son to surgery was the hardest thing I have ever had to do. Holding my twins for the first time was one of the most impactful moments of my life. I don’t view any of it as necessarily good or bad, but I view each experience as a piece that creates the wholeness of our story. This journey is not one I would have chosen, but it is our story and so it is my favorite.

All of the medical equipment and the (almost) twenty doctor appointments on my calendar remind me that this fight is not over. I strive to not become complacent because there is much more work to be done, but for this moment we celebrate knowing that we made it. Our boys made it, they are home.

Simply, today I am grateful.

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Day 96 - One down, One to go

Day 96 – Sunday, October 22, 2017

AGE: 13 weeks, 5 days old (38 weeks, 4 days gestation)

Lochlan:          Weight is 6 lb 9.3 oz. (Birth weight: 1 lb 10.8 oz.)

Length is 18.3 inches (Birth length: 13 inches)
Lex:     Weight is 6 lb
15 oz. (Birth weight: 1 lb 10.8 oz.)

Length is 17.9 inches (Birth length: 13 inches)

 

Today, I have so much to say that I don’t know what to say other than life is good. Around lunchtime, we will be putting our first born son, Lochlan, in his car seat along with his oxygen and monitors and head home. I will let the Lochlan’s milestones tell the story that brings us to day 96, Lochlan’s discharge date.

 

On July 1, we met twin boys born at 24 weeks gestation (3.5 months early). They weighed 1 lb 10 oz each.

On day 2, we named them Lochlan (warrior) and Lex (guardian of man). Lochlan had his first of many blood transfusions.

On day 5, Lochlan his lowest weight of 1 lb 4 oz.

On day 6, I got to touch Lochlan for the first time.

On day 7, Kyle got to touch Lochlan for the first time.

On day 8, we found out Lochlan had a serious brain bleed (IVH) and an unclosed heart valve (PDA).

On day 9, Kyle changed Lochlan’s diaper for the first time.

On day 11, I got to hold Lochlan for the first time.

On day 12, Lochlan needed more help breathing and was moved from a conventional ventilator to an oscillator.

On day 17, we were told he had a 70% chance of needing cardiothoracic surgery (he didn’t end up needing it.)

On day 18, he had his first trophic feed with breast milk.

On day 20, Lochlan was breathing better and put back on the conventional ventilator.

On day 21, The neurosurgeon tapped his brain to relieve spinal fluid that was causing inflation in his ventricles. He also joined 2 lb club.

On day 28, Lochlan had his first surgery to put in a ventricular subgaleal shunt.

On day 33, we found out he had a urinary tract infection.

On day 25, we found out Lochlan had a second brain bleed.

On day 37, he joined the 3 lb club.

On day 39, Lochlan was extubated and put on NIV (less invasive) ventilator.

On day 41, I saw Lochlan smile for the first time.

On day 57, Loch had his second neurosurgery to put in a permanent shunt surgery. He also joined the 4 lb club.

On day 63, I got to put him in his first clothes and he moved to a big boy crib because he was able to regulate his own temp. He was also moved to the CPAP. He got to meet his brother for the first time in the twin room.

On day 73, he joined the 5 lb club and took his first bath.

On day 86, Lochlan was switched from the CPAP to the oxygen nasal cannula.

On day 87, he took his first bottle and joined the 6 lb club.

On day 89, I nursed Loch for the first time.

On day 93, He moved to on demand feeding and he touched his brother skin to-skin-for the first time.

On day 94, Lochlan passed his hearing test and his vision tests show low risk for permanent damage.

On day 96, Lochlan gets to go home.

Lochlan on Day 1 in the NICU

Lochlan on Day 1 in the NICU

Lochlan on discharge day, Day 94

Lochlan on discharge day, Day 94

Day 90 - Family of Five

Day 90 – Monday, October 16, 2017

AGE: 12 weeks, 6 days old (37 weeks, 5 days gestation)

Lochlan:                Weight is  grams/ 6 lb. 4.5 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 18.3 inches (Birth length: 13 inches)
Lex:        Weight is  grams/
6 lb. 9.6 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 17.9 inches (Birth length: 13 inches)

 

On day 88 of life (October 14), we got our first family picture as a family of five. Poppy has had a cough for almost a month so we have had to keep her away. The cough finally diminished so she was able to come check in on her brothers. She is such a proud sister and wants to touch, kiss and talk to them. The boys are doing great and there is lots of talk about them coming home soon.

 

Lochlan joined the 6 lb club on  Friday (October 13). Lex recovered very well from his surgery. The day after surgery (October 12), he was extubated and put back on his low oxygen support. The same day, Lochlan got off his CPAP and is on the same respirator support as his brother (1/4 liter oxygen). They trialed both boys on room air on Sunday (October 15) but it didn’t go well and they were put back on oxygen in less than 2 hours. They will be able to go home on this level of oxygen support if necessary. At this point, the only thing keeping them from discharge is feeding. I have attempted to nurse both of them and they both have taken bottles, but it hasn’t been consistent yet so there is still work to be done. Lochlan is slightly ahead in the race to discharge because he is taking milk via bottle every other feed. Lex would probably take bottles as well, but he just wants to sleep all the time. I would like to guess that Lochlan will come home first, but Lex has been known to pull ahead in the last 100 yards. It is unlikely they will come home the same day, but, knowing these twins, they just might pull it off.

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Day 85 - One Last Surgery

Day 85 – Wednesday, October 11, 2017

AGE: 12 weeks, 1 day old (37 weeks gestation)

Lochlan: 5 lb. 14.2 oz. (Birth weight: 1 lb 10.8 oz.) Length is 17.7 inches (Birth length: 13 inches)

Lex: 6 lb. 2.9 oz. (Birth weight: 1 lb 10.8 oz.) Length is 17 inches (Birth length: 13 inches)

Lex is going in for a planned surgery right now and it will hopefully be our last surgery during our NICU stay. He has two (maybe 3) hernias that will be repaired laparoscopicly. This isn't a surprise surgery, but is one more thing that has to be done before he can come home. He had to be intubated and got a little morphene so he is feeling fine. Recovery should be smooth, but this is a little set back for his road to discharge. Patiently waiting for the surgeon to tell us the procedure went flawlessly. I will post an update once he is in recovery.

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Day 73 - A day at the NICU Spa

Day 73 – Friday, September 29, 2017

AGE: 10 weeks, 3 days old (35 weeks, 2 days gestation)

Lochlan:                Weight is 2278 grams/ 5 lb. 0.4 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 17 inches (Birth length: 13 inches)
Lex:        Weight is 2378 grams/
5 lb. 3.9 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 16.9 inches (Birth length: 13 inches)

 

Both chubsters joined the 5 lb club AND we got to give them their first bath. They loved the bath and were in pure euphoria. Nurses were starting to complain about stinky boy feet so it was time. Plus, I think they were due considering they haven’t had a bath in 10 weeks or, technically, ever. Even warriors enjoy spa day.

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Day 70 - Dad's First Tandem Hold

Day 70 – Tuesday, September 26, 2017

AGE: 10 weeks old (34 weeks, 6 day gestation)

Lochlan:                Weight is 2106 grams/4 lb. 10.2 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 17 inches (Birth length: 13 inches)
Lex:        Weight is 2210 grams/
4 lb. 14 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 16.9 inches (Birth length: 13 inches)

 

The boys are doing well and I am pleased to share a nice, boring update for their 10 week birthday. At this age, we don’t have to be as quiet or sensitive with light which means we can hold more freely. Kyle got to hold both his boys at the same time which was very special. Both boys are becoming more alert and curious about their surroundings.

 

For respiratory, nothing has changed over the past week on their CPAP settings which means we aren’t going backwards. At this point, they just need time to get stronger so we can start chipping away at the respiratory settings. Both boys are on track to join the 5 lb club in the next few days. Lochlan had a cranial ultrasound today that showed the shunt is continuing to do its job. The pediatric neurosurgeon is happy with its placement and progress. And a happy pediatric neurosurgeon equals a happy mother.

 

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Day 63 - Upgraded to the VIP Lounge

Day 63 – Tuesday, September 19, 2017

AGE: 8 weeks old (33 weeks, 6 day gestation)

Lochlan:                Weight is 1890 grams/4 lb.3 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 16.5 inches (Birth length: 13 inches)
Lex:        Weight is 1890 grams/
4 lb.3 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 16.5 inches (Birth length: 13 inches)

 

There is only one shared room (the twin room) in the NICU and it opened up. The twins were relocated to their shared room. This is the first time they have been in the same room since being wombmates. This is exciting because they can be close to each other, hear each other and, most of all, they can be held at the same time.

 

There is still a void in my heart where I miss the

 

Today, both boys’ weight and length are exactly the same. Lochlan moved to CPAP today which is a huge milestone. Lex had his NIV rates lowered too which is one more step closer to CPAP. They are on track to move to cribs in the next couple days.

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Day 62 - First Clothes

Day 62 – Monday, September 18, 2017

AGE: 7 weeks, 6 days old (33 weeks, 5 day gestation)

Lochlan:                Weight is 1940 grams/4 lb. 4.4 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Length is 15.98 inches (Birth length: 13 inches)
Lex:        Weight is 1960 / 4 lb. 5.1 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

                Length is 15.2 Inches (Birth length: 12.8 inches)

 

The twins are 2 months old today! To celebrate, I got to dress them in clothes. Yes, real clothes. Each boy had the funniest look on their face as I dressed them. You could tell they knew it was something new, but couldn’t decide if they liked it or not. In the end, each babe settled in and loved their new attire. Clothes make for one step closer to moving into a crib which means one step closer to coming home. Progress.

 

In other news, Lex just took the lead in weight completion weighing it at a whopping 4 lbs 5 oz. Loch is just under that at 4 lbs 4 oz. Both boys are in the 4 lb club and looking chubby.

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A Quiet Day of Rest for the Twins

AGE: 2 weeks, 1 day (27 weeks, 0 days gestation)

Lochlan: Weight is 810 grams/1 lb. 12.6 oz. (Birth weight: 760 grams/1 lb 10.8 oz.) Up 10 grams from yesterday

Lex:  Weight is 860/1 lb. 14.3 oz. (Birth weight: 760 grams/1 lb 10.8 oz) Up 80 grams from yesterday.

8 PM: The twins had a relatively relaxing day. The medical team is still working on balancing and monitoring respiratory rates, gas levels, blood pressure andblood sugars.

Both boys are on their second round of ibuprofen therapy (3 doses given every 24 hours). They both had their second dose tonight. This is Lex's fifth day of consecutive ibuprofen and Lochlan's fourth.  Both boys will receive one more dose tomorrow (08/03/17) evening. Sometime on Friday (08/04) they will have another echocardiogram to see if the ibuprofen has further reduced the patent ductus arteriosus (PDA).

Lex is still dealing with low blood pressure and is currently on a 17 mics out of 20 of dopamine. We are hoping the ibuprofen will further shrink the PDA and ease the heart so that the heart is not overworked; this should raise the blood pressure to a comfortable rate. We are hopeful that the heart will begin working better so we can get off dopamine. Once Lex is off of dopamine and ibuprofen, he can start taking feeds again.

Lochlan is accepting the ibuprofen will with no side effects. Once his third dose is complete, he will be able to begin feeds again which will really help.

We hope that this quiet day of rest for the boys will help their bodiesshrink their PDA so the heart can do what it needs to do.

"No Bad News Today"

AGE: 2 weeks (26 weeks, 6 days gestation)

Lochlan: Weight is 780 grams/1 lb. 11 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Lex:  Weight is 780/1 lb. 11 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

As we were walking into the room with the neonatologist, he said, “I don’t have any bad news to share,” which made us really excited. We had previously been told that the ibuprofen therapy had about a 30% chance of working, but that the doctors wanted to try everything possible to avoid the last option which is heart surgery.  We have been optimistic, but also realistic about the likelihood that the ibuprofen is working.  Here is my summary:

7PM update: Both of the boys had echocardiograms this morning (08/01/17) and the doctor told us that the results show the Ibuprofen therapy is working.  Lex’s last echocardiogram on 07/28/17 showed that Lex’s patent ductus arteriosus (PDA) was large and his ventricles were swollen because his heart was getting tired from overworking. Lochlan’s last echocardiogram on 07/29/17 also showed a large PDA. At the time the echocardiogram was done today, Lex had completed 3 doses of ibuprofen and Loch had completed his second. Both twins' PDAs have gone from large to moderate with no swelling of the ventricles. This is very hopeful than both will further benefit by continuing another round of therapy.

Lochlan: Prior to starting the ibuprofen, the doctors were very concerned about the chance that the medication would cause Lochlan’s intraventricular hemorrhage (IVH)  to bleed more. This is why the echocardiogram was done after the second dose of ibuprofen instead of waiting for the third. They want to stop ibuprofen if it was not working, but it is working to reduce the PDA and there is nothing that suggests the brain is continuing to bleed. This suggests the brain IVH has stopped and that a second round of ibuprofen will be very unlikely to cause further bleeding. Lochlan did have low hematocrits (24.7) today which are likely caused by the PDA. He was given a red blood cell transfusion which he took very well and is now back on track.

Loch’s game plan – Complete another 3 doses of ibuprofen over 72 hours. Do a follow up echocardiogram Monday (08/07/17) to see if the PDA has further reduced. Once off of ibuprofen, we will begin feeding him again which is key for his growth.

Lex: The echocardiogram has shown that Lex’s heart is not strained and the PDA is reduced in size to moderate instead of large. Lex, however, is dealing with low blood pressure that has been treated with dopamine since Sunday (07/31/17). The range of dopamine is 2 – 20 and he is on a 14 which is great because it is working, but we need to get him off dopamine to avoid ligation surgery.  The heart is pumping the blood to the lungs and the body which is taxing his heart; all likely caused by the PDA. His next echocardiogram will be Monday (08/07/17). Even if the PDA is small and he is still on dopamine then surgery will be necessary to get the heart to function properly. For now, we want to exercise all options before we have to do surgery which is why he will be doing another 3 doses of ibuprofen over the next 72 hours. Lex has had high bilirubin counts since 07/31/17 and has been on phototherapy to treat the jaundice. We gets checked in the mornings once a day. 

Lex’s game plan - Complete another 3 doses of ibuprofen over 72 hours in hopes that the reduced PDA will ease the heart and raise the blood pressure so he can get off dopamine.  Reduce and eliminate the need for dopamine. Do a follow up echocardiogram Monday (08/07/17) to see if the PDA has further reduced. Once off of ibuprofen and dopamine, we will begin feeding him again which is key for his growth.

 

 

Lochlan resting post care time.

 

 

 

 

 

 

Lex in his tanning bed working out his bilirubin counts.

 

Happy Two-Week-Old Birthday Boys!

Day 14 of Life

7 AM - Two weeks old today, two weeks stronger. Our warriors will get their Patent ductus arteriosus (PDA)  fixed this week one way or another. We have exhausted the Tylenol treatment (step 1) and are now onto ibuprofen (step 2).  If the ibuprofen does not work, ligation heart surgery (3rd and final option) is on the table to fix their PDA. It's a big week and will be a turning point so we can get their hearts fixed which will let the boys focus on growth. We will have echocardiogram results in the next couple days. Praying for smaller PDAs. 🙏🙏🍀🍀💙

am

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Lochlan Opens his Eyes

9 am Update: We got to see sweet Lochlan's eyes open for the first time this morning. He is the sweetest. I melt. 💙💙 It's a calm day so far for our warriors. 🙏 We got to see sweet Lochlan's eyes open for the first time this morning. He is the sweetest. I melt. 💙💙 It's a calm day so far for our warriors. 🙏

Day 12 - 07-30-17 - One Breath at a Time

AGE: 1 week (26 weeks, 5 days gestation)

 

Lochlan:

Weight is 770 grams/1 lb. 11.12 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

Lex:

Weight is 840/1 lb.13.6 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)

 

I will start this update saying that we are ending the evening with a net positive in regards to breathing, but we had a 10 steps forward, 9 steps back kind of day.

 

Both boys were on and have been on ventilators, but were at the highest ratings this morning. The doctor wanted to try switching them to an oscillator which is another type of breathing machine that is easier on their bodies. Lochlan responded well and is still on the oscillator. Lex did not respond well. He was started on morphine to calm him, dopamine to treat a low blood pressure and was put back on his ventilator. He has since calmed down and his readings are better this evening than they were this morning which is great. He is still on morphine and dopamine, but is relaxed and resting. He will continue to be watched closely.

 

Lex started his first or three doses of ibuprofen at 3am today in order to get his PDA (unclosed heart valve) to close. This is our second type of therapy, first being Tylenol. There is about a 30% chance that the ibuprofen will work. Ibuprofen is a stronger drug, but has more side effects. So far, Lex has not shown any negative response to the ibuprofen. The boys will receive most of their nutrition/fluids through their PICC line while on Ibuprofen because they cannot take feeds will on this medication. They will retain fluids while on it and likely gain water weight and not real weight until they are off. A follow up echocardiogram will happen Thursday to see if we have made progress.

 

Lochlan received his results from his echocardiogram today which also showed his PDA is larger which means the Tylenol is not working. He will also begin the 72 hour ibuprofen therapy. Lochlan’s digestion issues haven’t flared up and he (and brother) gained weight. Both boys are above birth weight right now.

 

I anticipate turning a major corner this week for the boys PDA and am focusing all my energy on that idea. We have one other option to close the PDA if the ibuprofen does not work, but we will cross that bridge if we get to that. Prayers appreciated for smaller PDAs so the lungs and heart can be less strained.

 

“Let the warriors sleep for when they awake, they will move mountains.”

 

A Morning of Fun with Big Sister

We were able to spend the morning focusing on our spunky Poppy. Some of our bestie's, Kent and Ethan, treated us to a movie and lunch at Point Ruston. This was the kids' first movie in the theatre so it was very exciting. We watched the new Despicable Me movie which turned out to be about twin brothers which was a fun surprise. we are grateful for a beautiful morning spent with the best of friends. We are very thankful for our tribe. 🤴🤴💙💙🍀

Day 11 - 07/29/17 Update - Snuggle Fest 2017

Both boys are getting stable enough to do kangaroo care. Benefits of the skin time include: heart rate stabilization, breathing regulation, improved O2 levels, more/better sleep, rapid weight gain and more. I have gotten to hold Lex once for 1 hour and Loch once for 1.25 hours. I'm still healing from surgery so I can't do the full 3 hours yet, but will soon enough. Kyle is doing his first skin time with Lex now and has almost hit the 2 hour mark. They are both in heaven, especially kyle.

 

Lex is officially over his birth weight weigh in 1 lb 11.9 oz. birth weight was 1 lb 11.6 oz. this is very exciting. We learned Lex has very limited bleeding in his brain that will likely resolve itself in its own. His PDA (unclosed heart valve) is still large and the doctors want to switch him from the Tylenol to the Ibprofen therapy because it's a little stronger but has more risks. He underwent two rounds of Tylenol. He won't be able to take feeds while on the ibprofen so he will need to get a PICC line in which is how he will revive his nutrients and fluids while in ibprofen. The good news is he is eating a lot so he will be all stocked up on food before being taken off of the feeds. Lex started to open his eyes which is incredible to see. In the womb, babies eyes are fused until 24 weeks or so. I look forward to more universe gazing in his eyes.

 

Lochlan is doing well. When we speak, he also tries to open his eyes and his forehead gets all crinkled, but no eyes yet as they still appear to be fused. Maybe we will she his little eyes this week. He has had digestion issues, but the doctors are now feeding him slow and steady which seems to have helped ease his little stomach. Lochlan likes to be left alone and gets feisty when doctors move him for care. He was very docile in the womb too, I guess, like his mother, he enjoys some alone time to ponder life. Plus, we like to see a little fight in the boys! Lochlan's IVH (brain bleed) seems to have stopped and even possibly lessened which was shown in a cranial ultrasound a couple days ago. This feels like progress so we pray that his body will continue to work the blood out on its own. He began his second round of Tylenol to reduce his unfolded heart valve (PDA). We are hopeful this works so that he doesn't require the ibprofen therapy. We softly sing to Loch because most of his bleed is in his right brain. I feel like it may stimulate the right brain (the creative/artistic brain) and help push the blood out. This is my own non medical treatment, but worth a shot.

 

I am progressing and am gaining stamina. We even went to the hospital three times yesterday. I walked the entire day, I have previously been in a wheel chair 90% of the time. I may have overdone it, but feel so great that I can be more present and available for the boys.

 

Kyle continues to carry all 4 of us. He is amazing and there is no one else I would want to walk this journey with. Feeling particularly blessed to have the family I have on this beautiful day.

Day 9 - 07-27-17 - My Heart on My heart

It was a great day, especially for Lex.

 

Lex had his cranial ultrasound today because it is his 10 day of life. We found that Lex had a grade 1 bleed on the right side of his brain and none on his left. The bleeding that is there is very likely to resolve itself on its own. After day 10, risks for further brain bleeding drastically drops. This is all great news.

 

Lex got his UVC line (umbilical line) out; because of this and because he is stable he was ready for skin time. I got to hold him on my chest for the first time. He absolutely melted and did not move the whole time. I loved being able to have him close to my heart. It gave me the same feeling I had when he was in my belly. It made me feel calm and that he was exactly where he was supposed to be. My heart is full.

 

He required more phototherapy because of his bilirubin counts. He has been on and off it since birth so this is not a surprise. Feeds are great, blood is good, o2 is good. He lost a little weight and weighs 730 grams.

 

Lochlan

He had his second echocardiogram which showed his PDA is still large. He began his second round of Tylenol to help close it. He vomited again and was pulled off a feed then put back on again. His digestive system is having a tough time although he did gain weight and weighs exactly what Lex does today, 730 grams.

 

Me

I had a CT scan showing my surgery went well. I had a small procedure which was causing 90% of my discomfort, but I now feel like a free woman and am very ready to really start healing. Tonight I get to sleep comfortably and with my husband. This was a major milestone for me, I see a smooth road to recovery from here on out.

 

We still need to get Loch's digestive system to mature so he can become more stable like his brother. The journey so far has been a competition for the boys. One will progress while the other hits a speed bump and visa versus. Just last week, we were told that Alex was much more sick than Lochlan, but now it's the opposite. I'm fine with the ping ponging as long as we stay a net positive. So far so good. Looking forward to more skin time tomorrow. Today was a good day.