Our due date was July 19th. He will be born a few days late, and that would make him a Leo! I’m sure he will be a Leo…
I told myself this for most of my pregnancy, but really I was just preparing myself for our baby to be “late”…. When I was pregnant with Truly, I thought for sure I would “go early” but she didn’t and came a day after her date.
So this time I was preparing myself for a late baby… I assumed he would be a Leo.
I even saw this outside our home, the night before I went into labor.
Read the first part of Niko’s birth story, and my pregnancy, here.
The Day We Met Our Baby
*Warning: Breastfeeding pics and descriptive birth language included in this post*
I fell asleep on a Friday night. The last night I’d spend sleeping pregnant in my bed…
I woke up in the middle of the night…. I was wet…
… thankfully, I had a conversation weeks before with my sister-in-law, who shared with me her experience of her water breaking at 34 1/2 weeks with her son.
I hadn’t had my “waters break” with my other children, and it’s not totally common for it to happen… it was one of the last things I had expected… even with everything going on, I was still surprised.
I knew what it was… by the time I had gotten around to looking at the clock, it was, of course, 3:33… I knew this was a divine sign that all is well and on time.
Sean was sleeping downstairs… so I quietly woke up and told him what was going on.
I learned from the last time I would be more safe than sorry with telling him ahead of time, and it could be nothing, but it could be something.
I wasn’t feeling any contractions.
After calling the hospital and talking with the young woman in her fellowship, who happened to be on call, she advised me to come in because all things considered, we would rather be safe than sorry. We wanted a full team on board for our baby and didn’t want him born in the car.
Sean’s mom came over and took care of the kids while we went to the hospital. We got all set up and it was confirmed that my waters had broken so they were admitting me.
I also had to get antibiotics for Strep B… this was such a huge shock (even with all things considered!) because I had taken a probiotic throughout my pregnancy and valued the healthy bacteria our baby would get from a vaginal birth.
Again, if you research Strep B, you don’t want to mess with it, and I was happy to take the antibiotics.
At this point, we were just waiting…. waiting for contractions to start.
“My body knows how to birth… my baby knows how to be born.”
Well…. I certainly hadn’t planned on being at the hospital WITHOUT contracting!
So, here I was…. a mama who had in her heart and mind how she had envisioned a birth and it didn’t look like me chilling at the hospital… without anything happening… except the clock ticking and talk of starting Pitocin to “move things along.”
I felt a vaginal birth would benefit my little guy because it was the best way to give his lungs a fighting chance… I also had this sense that he knew how to be born. If I let my body go into labor naturally, and let contractions go naturally, they would be just the right amount of pressure for his fragile body…. and I trusted in this process.
The last thing I wanted was to interrupt this process…. a process that I felt had a voice… one that, despite everything that was deemed out of our control, needed to be heard and given the chance to manifest.
Our baby, OI or not, was going to be born… and the way it happens has meaning…
…a divine order that we certainly and clearly cannot script.
Enter My Doula
Thank God Jennifer came….
… she advocated for me about the Pitocin, but also literally helped me progress without me even knowing it.
We started doing laps around the floor my room was on. I’m sure everyone thought we were crazy.
…. we must have done 25+ laps…
… here comes the OI baby mom…. she’s really working it…. I wish she’d just take the Pitocin already… can’t she keep the fetal monitor on? It keeps falling with all her doing heavy laps around the hall….
… who knows what they were all thinking… but it didn’t matter. Jennifer made this part very sacred and normal for me and I will be eternally grateful.
In case of an emergency
Another young woman, a doc in her fellowship, would be my MFM doctor for the birth. She mentioned Pitocin a few times, came in and out of the room to check on me, along with a young man in his residency.
She asked if Anesthesia could come in a look at my spine in case we had to do an emergency cesarean.
Sure… why not…
So he came in, a very tall, young man… and he was cheery. He looked at my spine and said it would be easy if we had to administer it quickly.
Hopefully we wouldn’t have to, everyone said… but just to be on the safe side.
Another woman came into our room, a young woman in her fellowship ( a lot of fellows around these parts!) who represented Neonatology…. she wanted to talk with us about what our preferences were in case they needed to resuscitate the baby. Were we OK with chest compressions or not… given our situation….
She didn’t think it would come down to that, but she had to ask.
Maybe don’t ask the laboring mother… but I’m going to say no on the chest compressions.
Sean said definitely no on the chest compressions.
Ok, now that all that is out of the way, let’s have a baby?
Let’s play a game called: Prove to the nurse and MFM doc that I’m progressing on my own
Jennifer was such a great advocate that she really presented to our team that I was moving along and didn’t need Pitocin.
Thankfully, my doctor got called into an emergency situation and it turned out that she wouldn’t be available right away…so that bought us some time!
Thankfully, Jennifer taught me a great “trick” to move things along.
Whenever I felt pressure, she had me hold onto the railing of the hallway and squat… like a ballerina would.
I still wasn’t feeling hard contractions, and the subtle ones I was feeling were here and there.
Something I soon realized was happening.
This was a game-changer for me…
I was holding the baby in.
When you have to go to bathroom and you hold your muscles… a Kegal if you will… I hadn’t realized that I was keeping tense because I didn’t want to pee myself… I was leaking all day it felt like and I had made a habit of just keeping tight….holding in….holding on.
Jennifer noticed I wasn’t releasing and I told her I was afraid to pee myself and she said “Pee away!” She found a pad in my room and gave it to me.
You wouldn’t believe how much I progressed after I loosened up and let go.
This is such a meaningful part of the laboring process! And I was doing it without even realizing it.
We are used to holding it in and up for so much of our lives, but this very sacred time it is imperative that we relax, release and let go.
So things started to pick up a little after that, I felt like the contractions I did recognize were a little bit stronger… enough that when Jennifer and I would lap past my nurse, I’d ask her if she got it on the monitor.
No, she’d say… so I would fix my monitor and we would get ready to convince them again that I was in fact progressing and that I didn’t need Pitocin.
Even at this point, I wasn’t sure if I was really progressing or if I would even have this baby today. I was uncomfortable but I wasn’t in pain.
That’s the beauty of having a doula because they recognize the transitions that a mama just can’t see most of the time… she can tell if a mama is working harder, she can tell if a mama is progressing.
Rectal pressure came up…. a lot.
Our nurse asked me frequently, and Jennifer referenced it a few times….
… it’s a way to gauge how close we are to the grand finale!
Our nurse was so sweet…. she was really rooting for me.
“Are you having it now? Is it all the time? Should I call someone? I think I should call someone.”
It was important that everyone was present and ready for the birth. There would be a full team from Neonatology, ready to help the baby. We had to have an idea of when the baby was coming so everyone could be in place… No pressure or anything… No pun intended.
We ended up asking if they would check me and sure enough, I was close to fully effaced and 9, almost 10 centimeters dilated.
Now when I labored with Truly, my contractions were very strong and very painful. The actual birth and crowning, however, wasn’t all that bad. It was uncomfortable and borderline painful, but I truly remember her just sliding out… I didn’t have to push… my body just pushed on its own and I swear I was a bystander.
That is why I was and still am so passionate about the squat… it’s a natural, effective way for the baby to use gravity and the shape of the mother’s hips to slide out safely.
Once I got onto the bed to birth our baby, I soon realized that this wasn’t going to go the same way. I was slowly being guided away from the squatting bar I found hiding in the closet and set up so optimistically… and encouraged to lay on my back… this was not what I planned… at all… God help me, I thought.
His name was Jason and he was in his residency. He had done my internal checks and he was now positioned, at my feet, ready to guide our baby out.
The young MFM doc was at his side, wearing a mask.
Jennifer was to my right, Sean was to my left, and moving more so to above my head and to the side.
My nurse was next to Jennifer… and another nurse came in and was on my left…. I remember her being really supportive and cheering me on.
I remember everyone cheering me on.
To my far right, there were about 5 people in scrubs… waiting to take care of the baby.
Closer to the door, there was an older MFM doc and another specialist nurse who I would meet later.
Jason told me to push.
Didn’t he read my last blog post?
The one about my homebirth and how I didn’t push, but my body did the pushing?
You’ve got to be kidding me.
I can’t push on my back…. this is ridiculous.
But pushing I did…. and I saw the faces of my doctors light up… it was working…
Jason was cheering me on… “You’re doing great! You got this! Just a few more!”
I think I was holding on to the bar on the back of the bed, for support, and I was guided to use my legs, so I didn’t tire out my back…
… I remember not agreeing with that plan and continuing to do what I wanted to do.
There were a few more big pushes… Jason was telling me I was almost there… and how great I was doing… everyone did… that part was so wonderful… I really did feel supported.
Jason was almost crumpled under the squatting bar… with his arms and hands ready to touch our baby as little as possible, as he had told me earlier.
He said he saw the head and I was so close… just a few more pushes.
Then came the hard part…. I knew the head was coming…
… it came…
…. and the pain got worse…
…. it was certainly excruciating….
…. just when I didn’t think it could hurt anymore…
…. it actually bumped up a notch….
… I yelled during this birth…. I can’t say for sure how much but I definitely did. There was no singing or dancing for this one… nothing orgasmic about it… I was set up for this the moment I heard Jason say “push.”
There aren’t many words exchanged I remember from our son’s birth… I remember Sean consoling me, and rubbing my forehead, and letting the nurses really be my cheerleaders and hand-holders..
Then came the words I do remember I said, the words I instinctually yelled as our babe was crowning… entering the world for the first time… his life in the womb ending and his earthside time beginning…
“Get him out of me!” I yelled…
As in a “you are all just going to stand there and do nothing?!” kind of command…
Bottled energy… bottled rage…
… Raw pain…
All of this… coming down to…
..all of this…
… for everyone…
… all the medical personnel in the room, everyone who told me they knew better how to birth my baby better than me…
…. it was all coming to a head …. no pun intended, I swear…
… I was in pain… and angry… angry that I was put in this position… literally and figuratively…
So now… do something useful…
…. and get this baby out of me because it hurts like hell, can’t you help me out?!
Initially when I reflected on this, I was embarrassed…
… then as I finalized this writing, I thought,
“What if I was talking to God?”
Here I thought I was talking to everyone in the room..
..and maybe I was..
..or maybe I was crying out for the last painful moment of this painful pregnancy to just be over.
After the deep pain got deeper for just another second, I felt that release and knew he was out.
I looked up and saw a purplish face that looked exactly like Truly when she was born.
…. deep breaths….
… I thought he may be Ok because he looked like Truly.
At 4:38pm on Saturday, July 15, 2017, weighing 6lbs 9oz, just to be sure I knew his astrological sign was a Cancer, our baby boy entered this world.
I cried… I think pretty loudly…. like a yelling cry? Physically overwhelmed but also mentally and emotionally overwhelmed.
They brought him over to the neonatology team… and I got a glimpse of him… he had a pretty big hernia… although I didn’t know that’s what it was at the time.
Sean and I kissed… I thanked Jennifer. And everyone.
The placenta came out easily, as they did give me Pitocin for that, which I had agreed upon earlier. There was some bleeding, but nothing that couldn’t be managed quickly by the young MFM doc.
His Apgar scores were an 8 at 1 minute and a 9 at 5 minutes…
He was alive.
He was breathing on his own.
He had an obvious arm fracture because it was off to the side and limp.
They brought him over to me… he was crying… and on a board.
They told me not to touch him, but that I could put my finger in his mouth… they must not have known me because I would never put my finger in a baby’s mouth, especially not a newborn baby… put my finger in his mouth?! Although I had all these thoughts at the time, I did anyways, although it didn’t work, of course… I think I kissed him, but I was partly terrified, partly in relief. And probably in shock.
I wanted them to just take care of him… just take him where he needs to be, don’t worry about showing him to me… I’m glad you did, but just take care of him… I can’t.
I remember wondering what it would be like if we hadn’t known about OI. If they just handed me my baby, could I have nursed him to sleep?
He left the room and everyone cleared out.
It was as if no one had been there in the first place.
My pregnancy was over.
I was alive.
We did it.
I was a single woman again.
I sat with my legs crossed, in my bed, and felt relief.
I sensed I had done my part.
All that was behind us.
We spent some time decompressing and processing what all had just happened.
We were going back and forth with family members… everyone was waiting to hear about the birth of our baby.
I knew these moments were coming… the moments after our baby was born, and how it would unfold… what would we say, what would we do and what would it look like.
A few things were happening:
There was a slight discrepancy about which room we were going to. We wanted to time it so we would either go to our new room first and then see the baby, or vice versa.
Sean went to the Nicu first and reported back that our son was doing well.
We stopped in our new room first and then went down to the Nicu.
Since I had so much time to process the possibility that our son wouldn’t survive, I had a sense that he did in fact come through but did not belong to me.
From a spiritual perspective, this touches on the belief that our children are given to us, not for us to make into what we want, but to guide and protect them as they have come here to do their own work.
Was it a lack of attachment? Perhaps….
I didn’t feel sad that I couldn’t hold him…. I felt relieved that he was being taken care of. And that he was alive, and doing well.
He looked chunky and his color was beautiful! I knew I would nurse him and start pumping as soon as I could.
The nurse who was taking care of him seemed nice. I did feel a little jealous that she was spending more time with my son than I was. It’s a feeling that didn’t last long because I would soon make the Nicu my new home.
Our floor nurse was initially concerned that we felt bad about being on the floor where moms are with their babies.
Sean said No, that we were happy for those moms and families, and we were happy for ourselves, too….. and, he wanted the room with a couch bed. The floor where the moms don’t have their babies don’t have the couch bed.
Sean spent the next 48 hours pushing me in a wheel chair to and from the Nicu.
After being here on earth for a few hours, I finally got to hold him.
This felt so normal, so destined… like it was all perfect.
He looked pretty chewy to me….
He looked nothing like the images I had seen online, of babies born with bone deformities.
He looked like one of us…. he looked like all of our other kids….
He looked…. perfect.
It was actually quite a dream.
He didn’t need any oxygen, he wasn’t in any obvious pain or discomfort.
He slept well, ate well and was both nursing and taking a bottle.
He took Tylenol well and so they decided to try giving him oral morphine, for any pain.
He took that well, and so we were finding our balance between normal newborn crying and crying that may be due to pain.
If this sounds like it was difficult…. it was.
But we went through the moments, and found a rhythm.
We met with neonatologists, nurses, social workers, case workers, endocrinologists and pain management/palliative care. The nurse who worked for palliative care recommended we hold him, just be gentle. There is no pulling on limbs or holding under the arms. I would begin taking over most of his care while he was in the Nicu. I wanted to do as much for him as I could. I would nurse and pump and feed him from a bottle.
We were slowly telling our family what was going on.
But nothing could take away the precious moments with our babe.
He was here… he was finally here.
And although I wasn’t comfortable in those chairs, I found peace with him in my arms.
Even though there was no sunlight to be found inside those walls….
…. light was surely within our time together.
We were ready to introduce our still unnamed baby boy, to his big brother and big sisters.
They were nervous about his leg.
We told them he was born a little differently, and that his bones were soft and fragile.
I had found online another mom posting about her baby being born with her foot in the air…. so although I guess it was a little odd, I wasn’t really surprised by his leg or concerned about it. I had a knowing it would go down.
Within 24 hours, and after holding him upright a few times, he slowly brought his leg down.
My daughter was so relieved…. she was really worried about his leg.
We are so thankful to our family who helped out so much with our kids while we were at the hospital.
We were both in a state of bliss and shock… we found a patch of grass out front of the hospital, that still had sunlight, and we rested… There was nothing to do but be in the present moment. We were taking it all in.
5 Days in the NICU
After I was discharged, we were then given the opportunity to sleep in a room by the NICU. I pumped, and went back and forth between our room and our son’s room.
We still weren’t sure on a name. On this we also went back and forth.
Finally we settled on Niko. We would name him Nicola Gian Francis.
Nicola – Victory of the people
Gian – God is gracious + after his dad, Sean
Francis – St. Francis of Assisi + after his late great-grandfather
I stayed with Niko most of the time, and also tried to get some rest.
The Nicu is a different world. There are no windows, or fresh air, and post partum had started getting to me.
I felt anxious a lot and remedied it a little bit by going outside, in the warm air, and listening to Old Church Choir… and crying… it felt great to release everything I had bottled up. During my big cry that felt so good, Niko’s nurse called me on my cell and said he was hungry…. I wiped my face and quickly headed back inside.
Xray Bone Survey Complete
The following is the written report of Niko’s bone survey at birth… done a few hours after he was born.
CLINICAL HISTORY: Newborn with Osteogenesis Imperfecta and multiple fractures.
TECHNIQUE: A total of 11 radiographs of the axial and appendicular skeleton for skeletal survey were submitted for interpretation including: AP, left lateral radiographs of the skull; AP and lateral radiographs of the spine, upper extremities, lower extremities; AP radiograph of the chest.
Bone mineralization is abnormal with significant diffuse osteopenia.
Skull: The calvarium is markedly demineralized with extensive sutural diastasis. On the lateral view there are few linear lucencies in the parietal bone, worrisome for fracture.
Chest and ribs: Multiple bilateral rib fractures are seen, both acute and healing involving the right first, second, fifth, sixth, seventh well as the left third, sixth and seventh acute rib fractures and healing rib fractures of the left eighth and ninth and 10th rib.
There is probable fracture involving the left 11th rib as well. The ribs appear very gracile. There are fractures involving bilateral scapula.
The lungs are clear. Inflation is symmetric and appropriate.
There is no pneumothorax. Cardiac size is normal.
Spine: Normal alignment is noted. Vertebral body heights and intervertebral disc spaces are preserved. No compression fracture or suspicious osseous lesion. Upper and lower extremities including the hands and feet:
Healing fracture of the right femur, right tibia and fibula are noted as well as of the left femur. The left tibia and fibula appear gracile without definite acute fracture or callus formation. Healing fractures of the right radius is seen as well as a healing nonunited fracture of the left humeral diaphysis, left radius and ulna. There is a probable subtle oblique nondisplaced fracture of the right humeral diaphysis as well. The hands and feet are not evaluated.
Significant herniation of bowel loops are noted.
1. Suspected parietal bone fractures. Marked suture diastasis and areas of decreased calvarial ossification. 2. Multiple bilateral acute and healing fractures involving the ribs as detailed above. These could be better evaluated with dedicated oblique rib radiographs. 3. Healing fractures involving the right femur, tibia and fibula, left femur, right radius, probable right humeral diaphysis, left humerus, left radius and ulna. 4. Bones of the hands and feet and not been evaluated. 5. No convincing vertebral body compression fracture. 6. Significant bowel herniation. 7. Significant diffuse osteopenia in keeping with known osteogenesis imperfecta.
I include this information because it may be helpful to others who have received a similar diagnosis.
What does this mean?
We are here now… Niko is now 6 months old and has three rounds of Pamidronate infusions, which make his bones, including his ribs, stronger.
Many babies who are born with OI and have multiple fractures are given Pamidronate in the Nicu. Niko wasn’t… The recommendation we received from the endocrinology department was to start treatment at 1 month.
Niko was doing so well clinically, and I think we were in shock and just taking it one moment at a time… and so we agreed to follow up then.
No one knew what the next month who hold for us.
Niko was given an oral Morphine for pain and also for the rib fractures specifically. Although he was breathing normally, there were still risks involved with his rib development. If you break a rib, it’s harder to breathe. If you have multiple rib fractures, it seems surprising that he was able to breathe on his own but if they were in stages of healing, his resiliency and healing ability is remarkable.
There was so much unknown at this time and it’s easy to look back and feel a certain way. I think at the time it was a mixture of surrender, gratitude, anxiousness and terror.
They weren’t treating his fractures. Babies heal so quickly, there is benefit to leaving it alone and risk involved in splinting it which can decrease bone density and muscle even more.
There were many moments where I felt very anxious in the Nicu…. but there were also many moments of purpose. Caring for our son felt very natural and not once did I question this process. We did everything very carefully and I appreciated working with the nurses…. who were amazing. They show up everyday and bring so much patience and compassion, the experience is humbling and inspiring.
I was a miracle baby
I was born 4 weeks early and was about to be discharged after 5 days when I was rushed to a different hospital for an emergency bowel obstruction surgery.
I spent 45 days in the Nicu.
When I say nothing is by accident, these are the gems I’m speaking to… in the moment, life can feel so meaningless…. or dark… or permanent… the feeling of hopelessness can feel permanent.
A healing took place for my soul… caring for my Nicu baby the way I had experienced… we had come full circle and my inner strength carried me through… Survival is in his blood, I would tell myself… it’s in his DNA to overcome… I’m living proof…. and now these moments have wrapped around to where we continue to help each other heal… and walk each other home.
The Big Question
When can we go home?
He’s eating well and sleeping well…. when can we go home?
Every morning I would see the head of neonatology briskly walk past our curtain, heading to the morning meeting of rounds.
I would look at him with big puppy dog eyes, wanting a sign or any sort of feedback about our son… How was he doing? Is he alright? Is he doing terribly? He is eating and peeing and pooping but is that enough…? Tell me about my baby… please…
Every day he would tell me, “He’s doing well!”
Was he lying? Was he just trying to make me feel better? I’ve never done this before… I don’t know how it works… If there is something wrong I know he would tell me… I would know… wouldn’t I?
The worry is on an endless loop… as a parent to any child, there is always something overwhelming to worry about it. The worry is where we need to set a new stage. It’s engulfing.
But if I wanted to get through this and do what needed to be done… I had to stay focused on the present moment.
Ready To Fly
The last night in the Nicu, we were able to stay in our own room with Niko, who was in hooked from the monitors. It was joyful. And terrifying.
The paperwork was endless and I kept worrying that at any last minute they would tell us they made a mistake or he wasn’t doing well and we would have to stay. Each moment we weren’t out the door, kept me paralyzed. I would have to learn to move through this experience because the feeling wouldn’t go away just because we left the hospital.
Niko was born on a Saturday and was discharged on a Thursday.
We got to bring our boy home… and drive super carefully.
We had to buy a car bed from the hospital gift shop.
A wonderful nurse left this binkie for Niko before she left for her home that night. Another nurse gave me a hug goodbye.
We had a list of follow up appointments and left the hospital for the first time, with our fourth child… our son… our baby.
This would be his new bed…. and for any other baby, you may follow the suffocation hazard rules of not placing anything in the bassinet. Not for our boy… he would get a cushion we got from the hospital, and a ton of blankets. He needed to be comfortable. And he wasn’t going anywhere.
Welcome home, sweet one.
You have a lot of people who care about you and love you!
Our first days home consisted of learning a balance between baby crying and pain crying… we really couldn’t tell a difference.
He would get fussy between 11pm and 3pm, so we would end up giving him medicine at that point to get some sleep.
We did a follow up with our pediatrician, and we felt grateful to even be there… and also knew that there wasn’t anything she could help us with. Our office had never cared for an infant with OI before.
The next week we went to Children’s Hospital for a few things… one of which was a sweat test to test for Cystic Fibrosis. Yeah…. the PKU blood test they send out when a baby is born checks for all kinds of genetic conditions. Although one of the neonatologists in the Nicu told it was probably negative, the initial test came back inconclusive and would require us to get further testing.
This is where the sweet, young neonatologist softly told me, “It’s better to know sooner than later.” They reassured us it was probably negative and the government makes it harder to get a negative result to they can double confirm with a follow up test.
So we had this to worry about all weekend. I worried, Sean didn’t…Sean told the doctors, (and if you know my husband you know how he said it) that we were good on all the other genetic conditions and that OI was going to be our challenge and opportunity.
The Monday morning 9am sweat test and waiting for the results was more worrisome than most of the moments in this story. Once in the lab, the tech told us we would have to hold our baby’s arms down and hold a heater to it and then wait 20 minutes to get sweat back.
We asked if he knew our son had OI and he didn’t…
….well good thing we mentioned it.
Um, no, we cannot hold his arm down and you most definitely will not be holding his arm down.
We did our best and I personally had enough sweat for all the babies in the world for the rest of all time.
We waited for 20 minutes, got the sample we needed and headed to our Ortho appointment.
We were late…
…. we only had about 10 or so minutes with our doctor, who we had mixed feelings about.
We learned just how clinical a pediatric orthopedic surgeon can be.
He looked over our son’s x-rays and told us how grim this was….
He gave him a physical exam and confirmed that he wouldn’t treat the fractures and there wasn’t anything he could do for us.
He shared with us a little bit about how OI works (typical textbook definition about how the bones is so weak that it breaks with pressure and then grows deformed….he also had never treated an infant with OI… he didn’t come right out and say this, but we knew….).
He told us that if our son, “made it” we could come back and see him in 10 months and talk about surgery…. which we wouldn’t go to him for anyhow because there are rodding surgeons at other hospitals who specialize in rodding kids with OI.
He said if our son fractured then we could come back and he could decide if we would treat the fracture. We would however, follow up in a few weeks with him as routine and also get the hip ultrasound that we didn’t have time to get… this would show us if Niko’s hip was dislocated.
I broke down in tears in the waiting room… it didn’t feel very good at all… it felt, as the doctor put it… “grim”…. it was awful. As soon as I felt we were out of the water, we were thrown right back in again… with sharks… and ice cubes.
The beautiful news of the day, was we got a call back from the lab and Niko tested negative for CF.
Holy Lord…. I can still feel the relief… Ok… so let’s do this OI… good Lord, let’s all do this.
Niko’s First Month: A New Pediatrition and a Hip Ultrasound
Our palliative care/hospice/pain management nurse called me and recommended a new pediatric clinic at Children’s Hospital. She said they were new and taking patients with complex care.
Our first appointment, we met with a young doctor, who was very friendly and kind. She listened and let me know that they were there to help with anything and to coordinate all of Niko’s care. Although they had no experience with an infant with OI, they were willing to listen and learn.
It was a great appointment…until she referred to Niko as having Type 2 OI…. textbook says this is a lethal form of OI…. I quickly told her… tears streaming down my face… that I did not think it was Type 2 because he didn’t have any trouble breathing at birth, and where did she get that information… She said a nurse or someone, she couldn’t tell from “the notes”…. (oh the infamous notes) who wrote it.
I was so upset and it really threw me for a spinning ride on the terrifying machine of fear… would I ever leave this ride behind for good?
…not anytime soon….
She was very nice and spoke to me with care. This office would soon turn out to be a blessing, even if the first few months proved to be a little bit unsteady.
I kept telling myself…. “just get to 10 days old… just get to 10 days old…”
Then 10 days would come and go and I’d tell myself to get to 2 weeks…. and waited patiently for our boy’s belly button to fall off…. Lord it took a full 2 1/2 weeks but he hit that milestone!
I told myself to get to 3 weeks… if I could just get to the 3 week mark.
At 3 weeks, we had a follow up with ortho and did the hip ultrasound. The great news is it showed Niko’s hip was NOT dislocated… so we would just leave it alone for now.
We still left the orthopedic surgeon’s office feeling like he had no faith. I don’t think he meant to come off as pessimistic but he implied that 10 years ago our babies didn’t survive past a year, and also said again, if the Pamidronate “took” then he could see us again in 10 months.
Were there any optimistic points he made? Niko didn’t appear to have any new breaks, as he was using all of his limbs.
We said we would go to a specialty clinic, and he did mention Omaha as being the epi-center of OI.
He wasn’t rude or short with us, he was actually a little softer this time around…. it was less of a consult about our child in particular and more about what he really couldn’t do for us.
We also visited Endocrinology and spoke with a PA… who didn’t really answer our specific questions either….
…. I guess it’s hard to if you don’t have first-hand experience with an infant like Niko… It was disappointing that it felt like she was presenting herself as answering my questions but she was giving me a generic answer, much like how the ortho was.
If you don’t have experience, or don’t know… I think it’s ok to say that.
I learned quickly that if your child has a very rare genetic condition, becoming an expert is automatic…. and it becomes apparent that I may know more about it than the doctor I’m speaking to does.
The PA said that after further research, they would like to wait until 3 months, as the baby will be bigger and it’s “safer.”
Not knowing any better at the time, we agreed.
At this point, I joined a Facebook group for parents who have children with OI.
This is where I would get all my information and have my life changed…. for the better…. forever.
Follow Niko’s journey as I continue to write about his life and how we grow right along with him.