Preparing for Delivery:
On April 6th, I had a routine doctors appointment to check the baby's development and also my progress. Derek felt strongly that he meet me at the hospital to attend the ultrasound, so we planned on that. When I got to the office, however, it was a TOTAL circus. I had tried so carefully to arrange my appointments (and subsequent NICU tour) in a way that would make it easy for Derek to be there, but because the office was so busy they decided to rearrange my appointments. Unfortunately for them, they tried to lessen their own blame by explaining (in front of the whole lobby) that I must have gotten the appointments backwards and that my husband was late. To which I responded (in front of the whole lobby), that I had been planning for weeks for this appointment and that I knew exactly when it was, and that their incompetency was disrupting the plans for my other appointments at the hospital. Derek arrived just in time to witness the hubbub after the commotion I had caused and they whisked us away to the ultrasound. The ultrasound tech was nice enough, but when I heard his little heart beating I just completely broke down. I felt like I had failed that little baby by giving him an imperfect body, and I felt angry that any plans with the hospital I had made to try to prepare for his birth were being frustrated. Because of my obvious emotional distress (read: because I was balling like a big fat baby) the ultrasound tech just got a few measurements and sent us on our way. She probably thought she was helping, but that made me even more angry because of all the effort I had taken to try to make sure Derek could be there. While I waited for my OB appointment, I told Derek he should just leave and go back to work... but then he said that perhaps the feeling he had meant he needed to go to the OB appointment. Honestly, I thought this was ridiculous and was going to make me feel even more awkward. I tried to get him to go several times, but he insisted that he really felt he needed to go to this appointment. Cue eyeroll.
The appointment began normally enough (aside from a few other frustrations that I won't say here), but then things got a little quiet and my perinatologist came in. He explained that because of several weeks of high blood pressures, I was diagnosed with gestational hypertension, and that I would need to deliver at 37 weeks. I remember, as soon as he said that, making eye contact with Derek (our mouths equally agape) and realizing that he was right all along! I was absolutely so glad he was there and glad that he was prompted to stay. This was a major shock to us both. I was already 36.5 weeks, so this meant that I would deliver in just FOUR days. They gave us just a few hours to discuss if we wanted to still go forward with the vaginal birth I had wanted or the c-section they were recommending. Not having enough time to go to the temple, we went at got shakes at McDonalds (ice cream is next to holiness) to discuss our options. Because of the additional complication of the hypertension and likelihood of needing an emergency c-section anyways, we decided to follow the doctor's advice and have a planned c-section. That was a thought I had despised for the longest time because I was so afraid I wouldn't be able to have as many children as I wanted afterwards, but for the first time, it felt like the "right" decision. I think this peaceful feeling surprised us both because we had been praying so long without any clear guidance one way or the other...but that is one huge thing that I've learned through all of this: As long as we are faithful, God will give us all the answers we need when the time comes.
D-Day:
Things I remember from before the c-section: Derek singing "The Morning Breaks" for (what felt like) the entire drive to the hospital, being so thirsty I thought I would die (no food or drink before the c-section!), and waiting a LONG time. As a matter of fact, my procedure was pushed back approximately 5 hours. FIVE HOURS I WAS WAITING THERE. Because we weren't able to meet with our neurosurgeon before my scheduled c-section, the nurses had said they would bring someone from neurosurgery down to explain how things were going to go. That was such a relief to us because no one had given any clear indication of when things would take place. Relief quickly turned to frustration when they were unable to find an available neurosurgeon so they brought someone from pediatrics who told us the same general timeline we had heard all along. UGH. Both Derek and I expressed our frustration and concern that, although this c-section had been very well planned, there were no plans for our baby's surgeries that we ALL knew he needed. The doctor didn't really give an explanation and just said that they could make plans once he was here, and left.
Looking back, this all seems logical, but for two very worried parents, there was no logic in that! We sat there quietly fuming for a minute before my prep nurse popped her head back in. She was such an angel...(in the craziness of the day I don't remember her name at all, but she was awesome) "I was just listening to the conversation you just had and I just wanted to explain some things that will help you. You have had to be really good planners to be able to get through this pregnancy, but once baby is here, don't have any plans-- just let things happen. We don't know what will happen once he is here or if other babies will need surgery more immediately that your baby so we just can't plan in advance. I know it's hard, but my advice to you would just be to relax and let things play out. We will take care of you." This was exactly what I needed to hear, and it was really the only thing to make me feel a bit better that day. She said it in a very loving way, as if she could legitimately understand that my heart was just breaking for the survival of my baby, and that meant the world. I think this was the best advice I got my whole pregnancy, and it is still true now. There is only so much planning can do, the rest we really do have to allow ourselves to let play out, trusting that there will be people to help us when we struggle.
It's Go Time:
After that whole encounter, things actually started progressing pretty fast. The nurse came back to give me my various meds before the c-section and explained how things would go. One of the anti-reflux medications they gave me was reglan, and that was a freakin' monster. It sent me into a full blown anxiety attack. My heart beat had gone so high (180+) that I was setting off all sorts of alarms and I was certain I was going to die. Right when my death seemed imminent, they had me say goodbye to Derek so they could wheel me down to the OR (he would meet us later). That was the worst part of the whole procedure. At the time, I regretted not writing Derek some sort of letter should I have died in there...it was bad! I was told not everyone has a panic attack as strong as me, but I was seriously thinking it would be better to take my chances with aspirating than have that again!
I had read online prior to my c-section that the one person to make super good friends with in the OR is the anesthesiologist. This article had said to narrate to them what you are feeling and anxieties you have (because they have something to help *hint hint*). My anesthesiologist was really nice and seemed very sympathetic to my reglan induced panic. She shot something into my IV bag and I felt much better after that. When I had a bout of nausea a few moments later, she shot another thing into the IV and I was as happy as a clam. Now while all this is going on, I've got tubes coming out of like every opening, I feel a strange pushing sensation in my legs (that's what I wasn't prepared for. It was just the nerves they were messing with in my stomach making my legs feel weird, but it felt like someone was pushing really hard on my knees), and I can see the awkward reflection of my lower half in the reflective lights above. Ugh. Poor doctors.
Our Baby Boy:
Once they brought Derek in, it was just surreal. It seemed too easy to get a baby this way (all things considered). After a few minutes of what felt like people shoving bowling balls into my stomach, out came our beautiful Peter Arie Askham! I had loved the name Peter for several years. Both Derek's and my family have some connections to the name Peter, and it was a classic name that is still less common but easy to spell. Before we even conceived, I felt as though this little spirit joining our family would be "Peter," and even referred to him as such before we even knew if Baby Askham was a boy or girl. When we found out he had spina bifida, I took great comfort in referring to the stories of the Apostle Peter, and how he had the faith to walk on water, and when he couldn't walk any more, Christ reached down and saved him immediately. When I was so heartbroken about Peter's condition, I just pictured Christ reaching to save my Peter just like he did for Peter of old. It's a strong name with a lot of positive pop culture references and it suits him perfectly! The name Arie, (pronounced eye-ree) is after Derek's great grandfather, who was dutch. It was also a name I had loved from the moment I heard it around Derek's family's dinner table, and the more stories of Great Grandpa DeHart I had heard, the more I loved the name. It came as a surprise to Derek when I had put it on our name list, but I thought it was a lovely name to honor our Scandinavian heritage while also keeping Derek's family's tradition of incorporating family names into the naming of a new child. I never knew Derek's great grandpa, but there was something in the spirit of the name that just felt right. We kept the name a secret from everyone (including the nurses) until D-Day. It was so fun to announce his entrance!
When I saw his cute little pink body, I just thought how perfectly his name seemed to fit him. His cry was immediate and he had no need to be suctioned. He was nice and pink, and just beautiful. The nurse gently swaddled him and brought him to my face so I could see him. Big blue eyes and a cute little nose stared up at me! They said I could kiss him, so I gave him a quick kiss on his perfect red little lips, and they whisked him and dad away to the NICU.
When I pictured myself living this moment, I thought I would be inconsolable. I had bad dreams where I was just screaming for my baby and asking to hold him for just a minute. I was sure that I would die when they had to take him away.... but what I felt? I was amazed and in shock. I remember thinking over and over that I was really a mom now, and that my baby is somewhere in the world. I wasn't sad...as a matter of fact, I was so happy! I did it! I didn't think I could survive this moment but I did! I know that the peace I felt then was a direct answer to the prayers that had been said on my behalf. I felt confident that angels were protecting and aiding my baby and I took the nurse's advice and just let it all go. It was wonderful, miraculous, and peaceful.
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| Seeing my baby for the first time |
Timeline:
The days and weeks that followed felt like an eternity at the time, but are now really a blur. I kept detailed facebook updates so I am not going to go into details here (I am going to make a summary of all the updates by month in a different post...someday), but just to keep the main events in one place, here is the timeline that I so desperately wanted to know in advance... but God had other plans ;) Maybe it will help calm someone else someday.
April 11th
- Peter is Born at 1:12 pm
- I don't get to hold him, but I get to see him for about two seconds
- Derek goes with him to the NICU
- By the time I get to go up to see him it's getting dark outside... maybe 7pm? But the time really did pass so quickly because I was out of it
- This day was totally doable
- Peter has his back repaired at 12:30 pm
- Before surgery, we each got to hold him across our laps. MAGICAL!
- We had to wait about two hours from dropping him off to seeing him again in the NICU for recovery. During this time I was actually in a lot of pain and went to rest in my room. Our wonderful neurosurgeon came to my hospital room to tell us how the surgery went instead of just telling Derek. I thought that was really sweet.
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| My first time holding Peter before surgery. |
April 13th-14th
- Peter stays in NICU while I am still recovering from my c-section. I get to visit him whenever I want.
- Visiting is fun, but I was not allowed to hold him (or really adjust him that much) until the 14th (which was the best day ever!)
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| Holding him without a mattress for the first time |
April 15th
- I am released from the hospital and the NICU team allows Peter to be released to the "NICU Village" where Derek and I could stay with him while he still gets basic care.
- Peter has a desaturation of oxygen levels, turns blue and needs oxygen and stimulation. This was later believed to be a symptom of Peter's increasing hydrocephalus
- The neurosurgen (Dr. Gross) comes back to the Village after the weekend and decides that Peter's head measurements indicate he needs a shunt. We go back to the NICU and I cry a lot.
- Even with the sad news, I got to hold Peter again on the 18th and they allowed me to breastfeed him for the first time. It went really well!
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| One week old!!! |
- Peter has his VP Shunt placed. Again this surgery takes about an hour and a half, but it goes smoothly and we are all much happier without seeing the oxygen desats.
April 20th
- The word "discharge" is thrown around for the first time! Peter is almost ready to go home, but because of his prior oxygen levels, we have to watch him for five more days.
- The doctors decide that Peter is doing so well, they plan to release him with an apnea monitor (to check sat. levels) the next day. I told very few people that we were possibly leaving the next day because I didn't want to get anyone's hopes up.
- What do ya know.... THEY MEANT IT. This was an extremely busy day with appointments from 6am up until 1pm when we were discharged. There is no way I can prepare any other moms for this day. It's like you wait and wait and wait for it to finally get here, and then when you realize that they are sending you home with this baby that has all of these needs (except you don't get to keep the monitors, medical supplies, etc.) and it becomes completely terrifying!
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| We're going home! |
After we left the NICU, Peter still had restrictions. He had to be catheterized once a day (which we still do at 10 weeks old). He also had to sleep on his tummy, couldn't be bathed, and was only allowed to be on his back or side for 30 mins at a time. Thirty days after his back repair, those posture-based restrictions were lifted, making our lives much easier and more normal.
In the days since, Peter has had the following treatments:
- Frequent weight check ups for slow weight gain
- Leg casts to correct Bilateral Vertical Talus (3 weeks of casts, currently in AFOs at night only, likely needs more casting and possibly surgery in a few months when he is bigger)
- Brace for hip dysplasia (3 weeks and counting)
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| Casts at one month! |
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| Dysplasia brace at two months! |
And in the next couple months will have further testing on the kidneys and brain to determine how effective his current interventions are. We are hoping that the shunt will be functioning properly (seems like it is so far!) and that he will demonstrate neurologic control over his kidney and bladder so we don't need to cath any more. So we will have to keep you posted!
Being Peter's mom is so much fun. I often forget there is anything abnormal about his body or challenges which is both a blessing and a curse. I just see past all of those things most of the time, but then something someone says or a doctor's comments will all of a sudden pull me out of the reality that everything is fine (it feels sort of like that part in Sixth Sense where [spoiler alert] Bruce Willis realizes he was dead all along and he can't open the door or hold his wife or talk to those he loves and it's like *MINDBLOWN*) and that is what hurts the most, it's almost like getting the diagnosis all over again! Some days that sadness lasts minutes, and other times it lasts days. The more that I feed into it (worrying about the future and what Peter's function will be) often the longer it sticks around... but it also feels wrong to ignore those feelings and act like everything is fine. So I guess I am learning to trust God's plan (learning...and failing!) while also trying to allow myself a little room to grieve once in a while. Still working on pulling myself together over here, but in truth, Peter is worth all of it! <3
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| Family of THREE! |
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