As we approach World Prematurity Day on November 17, our newest MBC Board of Directors member Jimena Gonzalez Guild shares her story of her experience giving birth to Micro Preemies.
For more information on premature birth with multiple birth babies please visit our resources page or request to join the MBC Preemies Peer Support Network on Facebook.
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My story begins early on in my pregnancy. At 14 weeks gestation, I was diagnosed with a partial placenta previa. For those who don’t know, it’s when a portion of your cervix is covered by the placenta, basically baby A had implanted on my cervix and so whenever his umbilical cord would pull on my cervix, I would bleed. Sometimes small bleeds, other times, full on hemorrhages where I almost passed out from loss of blood.
The doctors kept telling me how previas normally fix themselves. As the placenta grows, it pulls away from the cervix and your issues are resolved. Of course that wasn’t the case for me, as I had two babies and baby B was lying across my stomach. He took up any room (and chance) that baby A would have to move up at all, so my partial eventually turned into a complete previa. There was no chance it would ever improve and C-section was unavoidable. I hemorrhaged seven times in 14 weeks – four of those times it was enough for me to almost black out. In the end, I had three blood transfusions. At 26 weeks gestation, the doctors gave me the preventative steroid shots and prepared us for the big possibility of these babies coming early.The last hemorrhage happened while I was on strict bed rest in the hospital so the doctors decided for my safety; it was time to take the babies out. I had just hit 28 weeks gestation.
Their statistics were really scary, nothing they were telling us was positive. Things like the babies may not make it, the very likely possibility of brain damage, brain bleeds, infections, cerebral palsy, etc. I remember tuning them out halfway because the sound of my heart beating was so loud and my inner voice kept saying “why me? Why me? Wasn’t my extremely difficult pregnancy enough? Now to deal with having my babies come early?” As soon as they left, I broke down. This is definitely, not how one envisions their pregnancy journey to be; filled with fear, frustration, worry and sadness.
I think it had finally hit me, all the emotions I had bottled up from the entire journey so far. I had been strong through the whole thing but after being stuck in bed for almost 14 weeks, constant hospital emergency visits, six hemorrhages and an early birth scare, there is only so much a person can carry on their shoulders and I think I had finally reached my max.
People talk about postpartum depression; I think I had pre-partum depression. I had hit an ultimate low. I couldn’t even hear about other uneventful pregnancies let alone watch a happy pregnant lady walk down the street without feeling total jealousy and anger. I had so far been robbed of everything I had always envisioned. Barely anyone saw me pregnant since I was stuck in bed for most of it. I didn’t get to flaunt my pregnancy like I always dreamed, I never got to shop for pregnancy clothes, and never had pregnancy photos done like I wanted. What about my baby shower? It was devastating.
On August 14, 2011, via C-section, Kai was born weighing 971 grams. One minute later, Matteo came into the world weighing 2.1 lbs, both measuring at 12.5” in length. They struggled to breathe on their own and needed the help of a ventilator. Sadly, as is the case for most, if not all micro preemie births, I was not able to see them right away, as they had to be rushed into an incubator. My husband was able to go see them while I stayed behind to rest. I had mixed emotions knowing that two little babies had come out of me and neither had been able to take advantage of the kangaroo care I had always envisioned (holding the naked or partially dressed child against the bare skin of a parent). It wasn’t until 24 hours later that I was able to visit them in the newborn intensive care unit (NICU).
After all the research I had done online about premature birth, I thought I would be prepared for it all. I wasn’t. Nothing can prepare a parent for the NICU roller coaster. I couldn’t help but burst into tears at the sight of them. I had started lactating so you can imagine the combination of those emotions with the first glimpse of your babies and seeing them through a glass enclosure, not being able to hold them against your chest, and only being able to reach in one hand and rest it on their back, no rubbing or caressing, they said it was too much stimuli for a preemie with their skin being so thin and sensitive to touch it would do more damage than good. There were so many machines attached to them, IVs and peripherally inserted central catheter (PICC) lines going everywhere (a thin, soft, long catheter (tube) that is inserted into a vein in your child's arm, leg or neck. The tip of the catheter is positioned in a large vein that carries blood into the heart. The PICC line is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for blood draws) it was heartbreaking to see them this way.
While I was still in the hospital recovering, I would get nightly visits from the NICU residents asking for permission to do tests on our babies. From inserting a PICC line, to having to do multiple brain scans to even a couple of spinal taps when there was a scare of meningitis looming over them. I entered motherhood drenched in fear and sadness. I didn’t even want anyone besides our immediate family visiting me in the hospital during those first three days. I just couldn’t stand to have friends visit me and congratulate me with flowers. Congratulate me for bringing my fragile babies into the world so early? It definitely was not a time to rejoice in our eyes. I’m glad I had a private room because having to share a room with a joyous couple holding their newborn baby would just break me.
There aren’t enough words to describe how gut wrenching it is to give birth and then be discharged from the hospital empty handed. For the first time in 28 weeks, I was going to be many kilometers away from them. I wouldn’t be able to get out of bed and wander into the NICU at any hour of the day. It would require a lot more planning for that from now on. We were to discover our four month NICU journey was only beginning.
Both needed to be on a ventilator for the first few hours to stabilize them. Kai (baby A) was the smaller of the two and suffered more of the punches during those four months. They were both born with a patent ductus arteriosus (PDA) – a congenital heart defect common in premature babies in which the vessel connecting the pulmonary artery to the descending aorta fails to close. When this happens, it allows some of the baby’s blood to bypass the lungs. If left untreated, a PDA can lead to pulmonary hypertension, cardiac arrhythmia (irregular heartbeat), and congestive heart failure. Matteo’s PDA closed with the help of medication but Kai required closed heart surgery when he was a month old to correct it.
Both kids were also born with Respiratory distress syndrome (RDS) and needed medication to help tackle it. As well, Matteo had severe problems with apnea. Many times while we were visiting them in the NICU, he would just stop breathing and the machines would start going off and the nurses would come over and rub him and coach him to start breathing again. This happened a lot, he would go a good 20 seconds or more without responding and each time you would think it would get easier for me to witness but it never did. They both had intraventricular hemorrhage (IVH) which is bleeding in the brain. Matteo had a level one bleed and Kai had a level 2 so they required many brain scans to keep an eye on them make sure it wouldn’t get worse. Which thankfully, it never did.
It was a vicious circle. On top of it, they both had to have their eyes checked regularly for retinopathy of prematurity (ROP) – an abnormal growth of blood vessels in the eyes which can lead to vision loss – common again for preemies before 32 weeks. The tests were terrifying to watch, the babies’ screamed so much I just couldn’t be in the same room it was terrible. Luckily both kids had it mild with just a grade 1-2 and all that was needed was to be followed closely for the first year of life with a specialist. Kai had bad anemia and needed two blood transfusions as well.
Kai also developed an awful double inguinal hernia in his groin. Matteo ended up contracting pneumonia while in the NICU and was intubated for a week. The twins struggled with feeds a lot. We tried multiple times with Matteo to get him off his nasal gastric (NG) tube and finally, close to discharge, he started taking feeds orally. Sadly, because Kai was on continuous positive airway pressure (CPAP) for many weeks, we couldn’t try oral feeds with him until he was stable. Even when he was stable, he struggled with the feeds and would refuse them orally. At one point after Matteo was discharged and Kai reached the “corrected age” of a newborn, the NICU allowed us to take Kai home with his NG tube after properly being trained on how to administer feeds and change his NG tube monthly. Bringing them home close to Christmas was amazing.
Matteo spent three and a half months in the NICU while Kai spent four. Visiting them felt surreal. We didn’t feel like they were ours. I didn’t feel like a mom. It wasn’t until the twins came home that we finally were able to feel like parents. We knew the road for us was still not over, they were still preemies and we’d have to keep them quarantined for a little while longer especially in the middle of flu and RSV season.
My husband had accepted a new job shortly before I gave birth and so was unable to take time off to help me at home so I struggled basically on my own (my in laws lived over 12 hours away and my parents were still working full time) not only having to manage learning the ropes with two preemies but one being on a strict four hour feeding schedule via his NG feeding machine. I won’t lie, there were many days I would break down as soon as my husband would get home. I was mentally drained on a daily basis. Luckily, after a month of being at home, the hospital provided in-home nursing services for 12 months, two times a week to assist with Kai’s feeds. Kai did not improve with his oral feeds and we were referred to an occupational therapist (OT) who specialized in feeding issues with preemies. He would not take to the bottle or my breast. He was diagnosed as having severe oral aversion. Everything had to be through his NG tube. We had OT services once a week for 12 months.
Once I went back to work, we lost the nursing and OT services and relied on our learned skills and our daycare provider to assist us. Slowly Kai began to improve and one day while while at daycare, Matteo accidentally pulled Kai’s NG tube out and we decided to not put it back in as an attempt to see how well he did. With the help of his dietitian (who also came weekly to weigh him and assess his diet), we slowly began to see improvements.
After two years on an NG tube, Kai finally kicked it for good! We were so happy! Changing the NG tube was awful; I always had to hold him down while my husband would fish the tube from his nose into his stomach. He hated the experience and I couldn’t blame him for it. Kai is a completely different child now. Luckily he has no recollection of his NG experience and is an amazing eater – better than his brother!
We have happily been discharged from: cardiology, speech therapy (delayed speech brought on by their prematurity), nephrology (Kai’s constant calcium build up in his kidneys, also brought on by prematurity), NICU follow up appointments, OT services, Physiotherapy, blood pressure medication, NG tubes, reflux medication, pediasure to increase weight, nursing services, and finally, the dietitian. The only ongoing issue we are dealing with is Kai has gastro problems. He isn’t fully potty trained as he has dulled sensation (urge) to go to the washroom, so we visit monthly a gastroenterologist and have him on daily stool softeners with monthly enemas. Luckily this is something that will eventually resolve itself; we just don’t know when that will be.
We’ve come a long way and looking back, I couldn’t imagine making it this far today. The future looked so grim and we felt so alone. This is why I want to let other parents know that you’re definitely NOT alone and we are here to listen and let you know that we’ve been there!
Even though they may not be considered preemies by the standard medical book anymore, they will always be preemie warriors to us.