When I left you in the first part of this story, Eli had just been brought back to the NICU. After this, Rob and I went back to recovery for me, and waited anxiously for my half hour to be up so we could go see him again. We talked about what he looked like, trying to piece it together since we saw him for such a short time. We talked about his strong cry, and the fact that we thought that was a good sign. We talked about how big he would have been if he had gone full term. Then we comically discussed how all modesty goes out the window with child birth and the new level our marriage had just gone to. We laughed, and disguised the dread. When the half hour was up, we were wheeled through the NICU on our way to my room. When we got there, Eli was hooked up to a number of tubes and wires. He was distraught. He had rapid and shallow breaths. He was purple. Somehow in my new found motherhood I saw all of this, but it did not register. I wanted to take pictures. Rob on the other hand, was terrified. He actually wondered for a second if this was even our son. We spent a few minutes looking at him before the nurses gave each other a nod that I remember now, but don't remember seeing then. On we went to my room. Once we were there and got settled, my parents arrived. I told them about Eli, and showed the them picture I had taken and about how I was feeling, and asked my nurse when I could bring them back to see him. Eli's doctor came in to explain Eli's condition and ask our permission to do a procedure to help his lungs. I could see my Mom sitting across from me with a strange look on her face. Eli's doctor had a thick accent. For better or worse, I couldn't actually understand much of what he was saying. My mom however, she could- which I now know, was why she had that look on her face. I happily agreed to whatever it was he wanted to do. A little while later despite being incredibly nauseous, we took my dad to see Eli. My mom opted to stay in the room because she thought she might be getting sick. I practically jumped out of the bed into the wheelchair. On the way to the NICU (only a hallway away) we stopped twice because I got sick. When we got to the NICU, I stood at my son's incubator. Pain, nausea, and wobbly legs didn't matter. Later that night, my in-laws arrived and Rob took them to meet Eli. Family was there, our baby was there, and my meds were starting to work. I was on cloud 9. Somehow the NICU wasn't as terrible as the lingering dread and angst in my chest led me to believe...Or so I temporarily thought...
Throughout the night, Rob and I woke up and wondered how he was. Rob at one point said to me, "Do you think he'll make it, are we going to lose him?". I started crying but managed to swallow it long enough to say "I don't know, but he HAS to." That realization that he was struggling with that thought hit me hard. It wasn't an option in my mind, but the reality was, it WAS an option. At 6am, I called and spoke to Eli's nurse for an update. Then around 11am, we went back to the NICU. I started to feel empty. I started to feel like a terrible mother. I had slept and ate breakfast and carried on as if I hadn't had a baby. I HAD a baby, but I didn't HAVE a baby. Such a strange feeling. Such a strange situation. You don't prepare for that. Its not part of birthing or baby classes. I was mad at myself for not staying up in the NICU with him. I was mad at myself for being in pain and having that hinder my ability to go see him. I was mad at God that the glorious moment at the end of child birth- HOLDING YOUR BABY, didn't happen for me. I DIDN'T feel like a mom.
The next part of this post was written in "real time". I took the facebook and prayer request updates that I wrote each day and put them here. It explains things better than I could looking back at the experience. You'll notice that I never posted that original picture I took of Eli when he was struggling/fighting for his life. It's a picture that I saved away in a folder I don't look at. This is a picture that only immediate family has seen. Its a reminder of how far God brought him, but still too hard to look at.
1/25/14
Eli Update: His issues are standard for a baby born at 35 weeks but are issues none the less. He has some fluid on his lungs and as of last night was considered to be in respiratory distress. He also had a very low blood pressure. We just checked on him (around 6am) and he was given a special treatment because he was still breathing rapidly in the 120s but is now down to 80-90, so it's comfortable, but still not where it needs to be which is around 60. Blood pressure is stable on his meds. They haven't been able to decrease those but haven't had to increase either which is also good. They were able to lower his chamber temperature because he has a very warm core like his daddy!
Overall things are looking ok. Please pray that God would strengthen his lungs and whole body!
1/26/14
Eli Update- Eli is a fighter. His nurses jokingly complain that he is constantly trying to take off his wires and tubes. Just when they have a method of keeping him from reaching things he finds a new way of taking them off. Using his foot is one of the ways he has figured out how to take his nasal tubes out. He sure is good for a laugh! His levels are all still maintained with the help of medications but the biggest excitement right now is that his blood pressure meds have been lowered significantly and he is maintaining the level well. He got some of mommy's milk today through a syringe and thoroughly enjoyed it which was encouraging for me. I feel far away from him and kind of helpless bc I cant hold him but this and helping soothe him with a pacifier in the incubator while the nurse changed him really helped me feel close to him and like I'm helping him. Tomorrow he gets a routine brain ultrasound to check for any abnormalities or bleeds that may have been caused over the past few days of respiratory issues. Please pray with us that he passes this with flying colors. He will be in the NICU at least until Friday when his weeklong course of antibiotics will be over. Thank you all for your concern and love for our baby boy.
1/27/14
Eli Update- Our funny little boy continues to make us laugh with his determination to get his tubes off. He is very sneaky about it but we are starting to catch on. One of the most wonderful things we have experienced so far is that when we come in to the room near his incubator and start talking he immediately starts reaching out for us. He flails until one of us holds his hand.
Medically he is doing very well. His head scan came back NORMAL! He is off his blood pressure meds completely. His chest X-ray shows some effects of his RDS (respiratory distress syndrome) but no fluid. The nurse tells us it is normal to still see those effects at this point so it's nothing to worry about. His glucose levels are normal now as well. Today, they will take off his cpap machine and replace it with a mask that just blows some air up his nose. If he does well with this we may be able to hold him as soon as tomorrow!
1/27/14
Eli Update- I was discharged from the hospital this morning at around 1030. This was bitter sweet because having been in the hospital since Wednesday I was going a little stir crazy but it was very hard to leave Eli behind. We made plans to come back later in the day to see how he was doing. When we left him this morning (as I said in my previous update) the plan was to see how he did without his cpap machine/mask and replace it with another that just blows air up his nose. When we returned to visit this afternoon the nurse told us she had a surprise for us... She lifted the covers on his incubator and to our surprise we found a MASKLESS FACE! Not only did he do well without the cpap, but he had no need for the other machine either. They also took out his umbilical IV which meant we were free to FINALLY hold our little boy. I was able to feed him (he ate like a champ for 25 minutes) and we were both able to hold and snuggle him! We are over the moon about how much God has healed our little fighter in the past few days. Thank you for your prayers, love and support! God is good, and boy is He working fast!
1/28/14
Eli Update- Eli is continuing to do well and there is not much to report, which in my opinion, is a good thing! His bilirubin was borderline high today. They will recheck that tonight and decide whether he needs a biliblanket tomorrow. The obvious hope is that he will not need it at all but if he does need it, please pray he is still able to come out for feedings so we are still able to hold him at least for short amounts of time. We're getting kind of attached to the little guy ;-). Thank you for your continued prayers! Here is a picture of him totally zonked out after lunch. Gosh, our kid is cute!
1/29/14
Eli Update- I spent the majority of the day at the hospital with Eli. While this was WONDERFUL its also a little overwhelming because it makes me want to bring him home even more. His bilirubin levels were slightly higher today however his doctor still was not terribly concerned and decided to retest again tomorrow before deciding whether he needs the "biliblanket" or not. His IV rate was decreased today and his glucose levels were still normal after a few hours of this so they tell me this is great news as well. Eli's nurse today was one who was there the night he was born. She expressed to me how amazing it has been to watch him fight to do so well. Given her experience in general as well as with Eli, I gathered enough courage to ask how long she thinks he might be in the hospital. She explained that given how much he has been through he has gone through a lot of his "energy stores". Little things exhaust him. They want him to be able to do those little things without getting exhausted before he can come home. She told us to prepare ourselves for him to be there another 2 weeks but to remember anything is possible and everything is day to day. Please pray with us that he is there as long as he needs to be but that he continues to fight and can come home as soon as possible.
1/30/14
Eli Update- As you may have seen in the picture earlier, Eli did end up needing the biliblanket to bring his bilirubin levels down. The doctor expects it to take 2-3 days to come down. He also is out of his spaceship (incubator) and now in the open air and maintaining a normal temperature. The other big news is that he is no longer on IV fluids as of about 3pm today and his Glucose level was still normal this evening!
He is eating very well which is a good thing but now that he is off the fluids it is even MORE important that he continue to eat well because there is nothing else going in. Please pray he continues to maintain his body temperature, eat well and that his bilirubin levels come down! Thank you all again for following along and praying for our little man!
1/31/14
A week ago today our whole world changed. A week ago a little man came crying in to our lives and stole our hearts with his first little cry before we even saw his handsome face, adorable ginormous hands and sweet chubby little feet. In a matter of 30 seconds our minds went from thinking - "you will get to go home from the hospital today" to "you're having a baby today". I started frantically tidying up the hospital room and Rob went home to get a few things and tidy up the house bc those were the only things we could do to show any amount of control over what was happening. Our son's name means "uplifted because The Lord is gracious". Over the course of the last week, we have seen the beauty of our LACK of control and the complete joy over God's total control over our little boy and we have never felt stronger about the meaning of our little boys name. Eli John, mommy and daddy have uplifted you to The Lord because HE IS GRACIOUS and he gave us you. We love you little man, happy 1 week old day!
1/31/14
Eli Update- Pray Pray Pray! Eli is astounding his doctors and nurses with how fast he has been improving since they told us to prepare ourselves for another 2 weeks. If you've been following along when I would post about ultrasounds you know our boy is stubborn and my parenting method of choice will have to be reverse psychology based on his personality. WELL- today he needs to pass a 90minute carseat test and a second bilirubin blood test at 2pm and THEY WILL LET HIM COME HOME TODAY!!!!!!!
1/31/14
"I'm comin' home!!!!" Thank you Jesus!
As I look back at these updates, I'm struck by God's gift of strength to me. I didn't know at the time that that's how it looked outwardly when inside I thought I was anything but strong. I was so stuck on my own weaknesses, angers, emptiness and disheartened state. I can see how my joy returned after holding Eli the first time. I see what an unexpected gift that God gave me in not understanding the doctor through his accent, so the fact that Eli was literally fighting to survive was not something I actually understood until a few days later. When I was physically weak and my mental state fragile, was not the time to find out my son was fighting for his life. The idea of thinking that before I was even able to hold him and tell him I loved him, brings tears to my eyes even as I type it. Another unexpected gift was being able to go home and recover from my C-section, and sleep uninterrupted for a few extra days before my 2 months of sleep deprivation started. What a gift to look back and see how active God was, both in and through this situation. We had wonderful nurses. We had wonderful and skillful doctors- that I was able to understand after the first night! We live close to the hospital and going back and forth was easy. We had meals provided to us by our church family. We had family with us for the entire first month of Eli's life. We had people all over the U.S. praying for us and our sweet boy through the powers of facebook and prayer chains. Even in the midst of weakness, anger, hurt, chaos and uncertainty- God is good. It's in the calm after the storm when God sends His rainbow so you can look back and see the beauty that the storm brought forth.
