A Hard Year

Hello Everyone! 

I wanted to write a little update about how things are going. This year has been difficult for our family. The hardest yet, I dare say. We have been in survival mode a lot of the time, just getting by the best we could. If you saw the last update, we had a different birth experience for our new baby than we hoped. My recovery was a lot slower than my other births, but Lucas recovered pretty much as soon as we got home. So many family members helped us care for Laya, Eli and Evan during the months after. It was very touching and helpful! 

In March we received the genetic test results of Lucas and found out he has GM1 just like his brothers. That was hard. We were really hoping that he would not have to endure that! Unfortunately, it is what it is. And although we knew it was a real possibility, we still had to wrap our minds around it. We were definitely disappointed, very sad. It's been a little while since then and we have been able to process it a bit more now. We are sincerely grateful for him and we are in it, whatever the road may be. 

 

Then in April, things started to get pretty bad with Eli and his quality of life just wasn't good. This has been off and on all year since the fall. He was continuing to get thinner and thinner, just not able to handle food anymore. We stopped his tube feedings, since he wasn't getting much anyway, to allow him to pass on and stop suffering. It was the worst thing. I don't really want to attempt to describe on here what it was like as he slowly died, but I will say that we were there for him and did the best we could to create a nice, beautiful and comforting environment for him. He was an angel and a fighter to the bitter end. 

In May we had a beautiful, very small, funeral for Eli. All went well and I really don't think it could have gone any better. We were allowed to have 20 people, so pretty much family and a few respite providers. Here is a music video of the day. 

I personally feel a bit wounded by everything that happened this year, like I have been physically stabbed, not to be overly dramatic, but I really felt like I had an open wound. And slowly over the months, that wound has been healing. It will have a deep scar I think, but that's ok. I never want to forget the hard things. They make the joyous parts of life more meaningful. (I do need to add that while I do feel pained and saddened, I also feel very grateful to God for all he has done for our family and myself personally.) 

The rest of our family is doing well, just normal ups and downs of life I think. We continue to enjoy life and cry and miss Eli and take care of each other, and mess up and get angry and upset and repent and forgive and have hopes and dreams and frustrations and triumphs and its all good. 

Something I have learned this year is that, again, those suffering moments that we sometimes have in life truly open up our hearts and souls, expanding them and cracking them open to make room for more love, a greater capacity for joy and deeper expansion of peace. 

So... maybe we should all embrace the tough and allow it to bless us in the ways that it can!

This is the only family picture we have of all of our children together before Eli passed away. The shirts were a gift from Eli's home-bound school provider - Christina. 

Lucas 7 months old

Evan - 8 years old

Painting of Eli - gift from his respite providers

Laya - 13 years old.  

Placental Abruption and Infant Struggles

Baby Lucas and Mom birth story 

January 9th, 2020. Due date. Middle of the night. 

I had begun to experience some contractions, but not very strong or consistent. Even though they weren’t very strong, some were closer together, like 5 minutes, so we called to see if we should go in. Our midwife suggested we give it another half hour to see if they continue to become more consistent. 15 minutes later, I felt this strong pop or kicking sensation causing me to scream loudly in pain. It felt stronger than any kick I’d ever felt before...it did not feel right. I could actually see my stomach bulge out when it happened. Brad, who was checking on Eli in the other room, ran in. I told him what happened and said, “I hope the baby is ok!” I thought it could have been my water breaking, just really painfully, but my water wasn’t broken. (Later, I found out it was my placenta suddenly breaking off the uterine wall...a full placental abruption).  

After that, everything was different. I was instantly in great pain and could only compare it to the feeling of being in transition right before you are ready to push a baby out. But it was weird, it was like I had skipped the whole stage 1 of labor where you work your way up to 10cm and was all of a sudden there. I felt a great amount of pressure like you do when the baby is low and ready and felt I was beginning stage 2. I didn't realize what had happened at this time. I had no idea about the placental abruption, but I knew something was wrong.

Lying on the bed, I was moaning and groaning in pain and couldn’t move. I managed to tell Brad I wasn’t going anywhere and the pain was constant. There was no break, like normal contractions, just constant pain. We weren’t sure what to do at first. I told him I felt ready to push the baby out and I couldn’t even think about moving to go get in the car., so we decided to call 911. 

The firetruck and ambulance arrived shortly after and rushed me over to TMC. I was a mess the whole way there (crying, pushing) and didn't open my eyes once. They wheeled me on the stretcher into the hospital around 4:15am and lifted me onto a bed in the delivery room. After monitoring the baby, they discovered that his heart rate was very low, in the 50’s and 60’s, so in distress. Everyone went into emergency mode and I pushed Lucas out within 10 minutes at around 4:30am. The doctors told me that we were able to get him out faster than an emergency C-section would have been. 

Lucas wasn’t breathing when he was born, (because of blood in his lungs from my bleeding placental abruption) so they instantly started reviving him with chest compressions. I could see them over on the side table from where I was. I kept asking the doctor “Is the baby ok?” They just told me that they are helping him. His Apgar score was 0 at 1 minute, then 2 at 5 minutes, intubated him, then he was a 4 at 10 minutes. They took him to the NICU and his score was 8 after an hour. He was stable.  

In the meantime, I was losing a lot of blood. My blood clotting factors were pretty much gone because of my body’s reaction to the placental abruption, so I just kept bleeding and wouldn’t stop. I lost over 3 liters of blood. They gave me lots of shots to stop the bleeding and decided I needed to get a procedure done. They put me under and placed a balloon inside my uterus which put pressure on the walls of the uterus to stop the bleeding. And they also began a blood transfusion. 

I won’t go into too much detail for the rest of the events, you can read Brad’s text series below if you are interested. But, in summary, I slowly got better over the next four days and my blood work numbers began to go back to normal. At least enough to be discharged from the hospital. Lucas spent 3 days doing a cooling treatment in the NICU, where they keep babies at a lower temperature to prevent brain damage. After they warmed him he spent a few more days there and made quick improvements... enough to go home after 7 days in the NICU. 

We received a lot of prayers, love and support during this time and are grateful to everyone! We thank God that he preserved us. We know it would have been a very different outcome for both myself and Lucas if we hadn’t made it to the hospital in time. We are both doing well and happy to be at home and continue to rest and enjoy our family. 

Thank you all for your love and concern. 

Marilee

Brad’s Text Series to our families: 

1/9/2020

 Brad 5:15am: Baby was born at 4:36am. It wasn’t breathing so it is off in the NICU. Marilee is not clotting so she might need a transfusion. We need a lot of prayers. Pray for us. 

Mom 6:30am - How coherent is Marilee? Brad - Not very, she has lost a lot of blood. 

Update: Baby is stable but intubated. Was responding neurologically earlier. Marilee is doing better but has really thin blood which was why she wasn’t clotting. She is getting a transfusion. 

7am - Still haven’t seen baby. Marilee is primary concern. Her blood is still too thin. They are giving her vitamin K and new blood. They are going to transfer her to the ICU to monitor her. 

8:30am - Marilee is getting a bit better. She is talking a bit and has good blood pressure and heart rate Hopefully she will continue to improve. Still haven’t seen baby yet. 

9:40am - Marilee is doing better. Not out of the woods yet but her blood seems to be behaving better. They are going to continue to give her stuff for her blood. Fingers crossed. 

10:30am - First time seeing the baby. He is cute but has some fighting to do. He is receiving cooling because of the lack of oxygen during the issues this morning. The working theory is the placenta detached when Marilee felt a big pop this morning. That means from 3-4:30am it wasn’t providing for the baby properly. Weight at birth 7lbs 9oz

Poor little guy has a lot of swelling due to all the IV fluids he was given

11:40am - Marilee’s labs came back and her numbers are improving but she still is not where they want her to be. They are also going to ultrasound her stomach to make sure nothing else is bleeding. Carrie - Did the placenta tear away from the uterine wall? This has happened to 2 of my friends and they have removed the uterus because of it due to bleeding issues. Brad - The theory is exactly that. It may come to that if hte bleeding doesn’t stop. 

Brad - They just did the ultrasound and it didn’t show anything concerning. So if her numbers continue to improve she might be able to leave the ICU tonight. 

Brad - Baby update: Just spoke to the NICU doctor. His newborn score is improving He started out at a 0 then went to a 2 then a 4 now he is an 8. Really good improvement. They are checking his heart and brain. They might take the ventilator out tonight or tomorrow. 

3:00pm - Marilee’s numbers have improved. They are working on getting her out of the ICU. 

1/10/2020

Brad 9:00am - Marilee spent last evening and night outside the ICU. Her numbers are almost back to normal. A bit of pain but much better. The baby’s heart rate is good. He is still on a ventilator but is breathing on his own as well. He is slowly improving. 

Brad 7:00pm - No big changes. Marilee got one more unit of blood today and her numbers look good. Hopefully the last. She walked a bit. Baby had an iv line stop working so they almost had to stop the cooling treatment but they were able to replace it so now it will continue till Sunday morning. Other factors are stable. 

1/11/2020

Brad 9:00am - Marilee walked a bit last night so they removed the catheter. They are checking her blood one more time to make sure it still looks good. She will probably get to see the baby today. Baby has to continue the cooling till tomorrow morning then we will begin to learn more about him. 

Brad 12pm - Just saw the baby. He is now on room air with no extra oxygen needed. (Still getting helping expanding his lungs). They are going to keep the ventilator in through the cooling process and MRI. After that they will evaluate when to remove it. 

Brad 5:45pm - Marilee: feeling much better. Was able to see the baby for the first time today. If blood numbers look good tomorrow they may want to discharge her. Baby: same, will begin to bring him out of cooling tomorrow morning. Probably an MRI at some point then we will see about next steps. 

1/12/2020

Brad 7am - They started the warming and said it would be done by about 1:30pm 

Brad 12pm - Marilee’s numbers are improved and she is safe to go home. We can stay the rest of the day but then she is going home. They said it will probably take two weeks for her full energy to return. (I was anemic still at this point). 

Thanks for all your prayers. 

Mom - That’s wonderful, but so hard to leave Lucas.

Brad - We will figure it out. Once he is off cooling we will be spending our time in the NICU a lot more. 

Brad 2pm - Baby is warm and they took the ventilator out early because he was breathing well. (He still has breathing aid but through his nose at this point.) They may start small milk feedings this evening. He is now grabbing at stuff since he is more alert, but they said that is expected behavior. So far so good. 

Brad - They are currently removing wires since the cooling is off. They are going to feed him tonight then the MRI is tomorrow. Can’t hold him until the naval line is out. Maybe a day, maybe more. We will see. We were able to help hold his hands while they removed a lot of wires. Marilee changed his diaper and I took his temp. The less wires the better. 

Brad 8pm - Marilee made it out of the hospital. 

1/13/2020

Brad 12pm - Mommy got to hold him. He is going to have the MRI this afternoon. Otherwise doing well today. 

1/14/2020

Brad 10:30am - Lucas was doing well in the morning. Then he had his MRI. After that he took a step back due to the sedation. Last night he did better again. They upped his feeding from 10mls to 30mls every three hours. They also were able to reduce his air flow rate from 4% to 2%. He is still progressing. 

Brad 3pm - They said the MRI was fine. Yay! Needs to work on breathing and feeding. 

Marilee 6:30pm - Lucas is doing better and better. He is on 2% air flow and tomorrow they will try taking it off and see how he does. He has had milk via the tube now doing 30ml every 3 hours. And has been able to eat a tiny bit by the bottle, but not quite getting that yet. We are just having so much fun helping take care of him during the day. The MRI didn’t show anything significant, so that was good news. And after a few setbacks from being sedated he is much better today. I am feeling a little better each day. Not sure when he can come home. If he can get off of air support, I think it should be soon!

1/15/2020

Brad 11am - Notice anything different? (When we arrived that day, his air support was gone, IV line out and feeding tube gone!) He even ate from the bottle last night. If he does well tonight he comes home tomorrow. We are over the moon right now. 

1/16/2020

Brad 10am - Just waiting on a hearing test and then we can go home today! (He passed his hearing test on both sides, and did a great job nursing the day before as well). 

Brad 12pm - Happy to be home.