Tag Archives: down syndrome

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Driven to the bottle(s)

After a series of stressful and frustrating experimentations, it appears we have finally found a bottle that works for Lina. To be clear, she still leaks milk out of her  mouth as she drinks – a LOT of milk. It’s something we’ll be talking about with the early intervention teacher at our first therapy appointment this week. (It is thoroughly depressing to see her burp cloths soaked in my hard-won breast milk. Not to mention the laundry!) But we at least have her off the disposable nipples they sent home from the NICU, and she is able to latch appropriately onto the bottle and get enough to sustain steady weight gain. She is now just over 9 lb.

So, in case it’s helpful to anyone facing similar issues, here are the bottles we tried:

  • Disposable Similac regular flow nipples from the NICU (which we washed and reused for a good 5 or 6 weeks), paired with the Medela pump milk collection bottles – These latex-type nipples worked great for the first several weeks, but as she got bigger and stronger, the flow was much too slow. Feedings were taking an hour, and she was getting frustrated and tired trying to get the milk out of the one tiny hole. These nipples are not made in any other flow level. We tried poking larger holes in them with a heated needle but could not seem to get the size right and worried a bit about continuing to use what were supposed to be disposable nipples.
  • Dr. Brown’s glass bottles with newborn flow nipples – The shape is the same as the Similac nipples, but these are silicone rather than latex. She has refused these and any other silicone nipples. The texture seems to really throw her off.
  • Avent bottles (which Corin used) – Silicone nipples again, and a less familiar shape. Soundly rejected.
  • Playtex Nurser with Drop-Ins – This system can be used with either silicone or latex nipples. We tried both the slow and fast flow latex options. She did better with them than any of the silicone nipples, but these were extremely soft and a different shape than what she was used to, and she did not seem to latch onto them effectively. She had some okay feedings but was inconsistent and would have some really terrible ones, as well. We gave up on these after a few days.
  • Gerber First Essentials bottles and latex three-hole nipples – FINALLY, the solution. They are identical in shape to the disposable Similac nipples, so she latched great and took to them right away. The flow is some faster but not too fast, and feedings are down to an average of about 30 -35 minutes. Bonus: They are cheap! Three 5 oz. bottles were about $5 or $6 at Wal-Mart, and a pack of six latex nipples was maybe $3. Also, these are a standard size, so the nipples also fit on the Medela milk collection bottles and a couple of random glass Evenflo bottles we had on hand. Only downside: They do not seem to make the latex nipples in a fast flow, so I’m not sure what we’ll do if/when she outgrows the medium flow.

It was a difficult process, but thankfully we have something that seems to be working, and she is gaining weight steadily. We give her about 4 1/2 to 5 oz. six (occasionally seven) times a day. She is sleeping 5-7 hours at night. We have a pediatrician appointment on Wednesday, so hopefully he’ll be happy with her weight gain.

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Learning to love Early Intervention

We met on Thursday with the coordinator for Tennessee’s Early Intervention program, which will provide Lina with regular evaluations, goals and any necessary therapies from now until her third birthday. Anna was lovely and so helpful in laying out realistic goals for Lina’s first year. We will meet with her once a month to review Lina’s progress and revise or add to her one-year plan (called an IFSP, which stands for something I have not yet learned) as needed. As an extra bonus, Anna turns out to be pregnant and seriously considering a home birth. We had plenty to talk about.

The first time we met with an Early Intervention contact to begin enrolling Lina, I came away feeling pretty down. I was being confronted again with the fact that our daughter is likely to struggle and fall behind, and it was hard. I felt edgy and sad the rest of the day.

This time, though, I found the appointment to be encouraging. Anna answered a lot of questions and helped us understand what would be realistic to expect for developmental milestones for a child with Down syndrome in the first year. It was exciting to think about Lina learning to sit, crawl, feed herself, maybe even say her first words. Anna was happy with Lina’s development so far, and I came away with a renewed confidence that my little girl is going to rock at a lot of things.

We’ll hear next from the teacher who will be our bi-weekly contact (probably going to weekly as Lina gets a little older) to provide the actual developmental support. I am looking forward to the appointments and feel grateful that we have access to these resources. And man, is it awesome that they come to the house. I like to think these are people Lina will really get to know as she grows, and that she, too, will look forward to these appointments.

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7 weeks

 

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How could you not love this sweet face?

Eline at 6 weeks

  • Holding up her head – from tummy – for quite a few seconds at a time
  • Has rolled from stomach to back seven or eight times
  • Making eye contact more frequently, noticing objects, turning to look for the source of noises
  • On the verge of full smiles
  • Loves, loves, loves to be held and cuddled
  • Taking 3 1/2 to 4 oz. of pumped breast milk or part-breast milk/part-formula by bottle 7 times/day
  • Weighs a little over 8 lbs.

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Downpours of blessings

It’s a truth I have known but am experiencing in a whole new way that as big as any challenge is, God is bigger. It has dawned on me that perhaps it is through the enormous, threaten-to-swallow-you-whole challenges that we experience how BIG God truly is. What I know for sure is He has poured out blessings on us over the last few weeks that have left us in awe, even as we have struggled to find our footing in a changed landscape. As I count out those blessings, I can’t help but feel grateful.

1. The unwavering love of family – I am certain the news of Lina’s diagnosis was as great a shock to our family as it has been to us. But there has never been a moment of hesitation in the acceptance and love they have shown to our daughter. Grandparents, great-grandparents, uncles and aunts have cuddled, cooed and swooned over our newborn, exactly as we imagined they would. From the moment of her birth, Lina’s familial fan club has proclaimed her beautiful and remarkable with a genuineness that has helped heal our hearts. Our little girl will not lack for doting relatives. She is unquestionably loved.

My dad and Lina nap together on her second day at home

Jon’s dad and Lina, second day at home

Great-grandma Ginnie meets Lina, 1 month old

Great-grandpa Bill

Jon’s mom, a proud Mimi

2. An amazing network of friends – I mentioned earlier that friends have organized an entire month of meals for us. Many of them drive quite a ways to get to us, many of them have their own little ones demanding their time and attention, and all of them lead busy lives we know make the meals they bring a true act of love. It has been such a gift to us. And as these friends come bearing food or meet us at church, they, too, cuddle and admire Lina with a genuine acceptance that bolsters our hopes for her future. This past Saturday night, I attended my rescheduled baby shower (which had been planned for the weekend after Lina was born), and I again was overwhelmed by the love and support of some amazing people. Friends from all over the country have reached out to us with support and encouragement that has touched and strengthened us when we have needed it most. Neighbors have offered support and love. People we barely know have contacted us to offer encouragement through their own personal stories and experiences. God is using so many people to meet our needs.

3. The circumstances of Lina’s birth – I have had many occasions over the last several weeks to be so thankful that even with all the unexpected that came our way on September 13, I was able to have the home VBAC I hoped for. At 5 weeks post-partum, I feel pretty much normal. Even with the D&C, recovery has been easier than post-cesarean with Corin. The peaceful, spiritual atmosphere here at home as we welcomed Eline is a memory I treasure, and I am so grateful I was not facing a more extended hospitalization myself as we dealt with those first few days of Lina’s NICU stay.

4. Our remarkable donor family – Some of my first thoughts as I began to process Lina’s diagnosis were for our donor family. I put myself in their place and thought about all the ways this new development would be hard for them. I knew they were waiting on pins and needles for news of our baby’s arrival. It took me several days to work up to writing that email. I wanted to make sure they knew that a diagnosis of Down syndrome did not change the gratitude we felt to them. I wanted them to know we still believed we had been led to them and to our Lina, and that she was our miraculous gift. I wanted them to know that she would be loved and accepted, and that they would not have to worry for her. I sent the email to our donor mom a few days into our NICU stay and waited anxiously for her response. It came quickly, and when I read it, I felt again how much I loved this amazing family. Lauren* wrote first about how beautiful Lina was and about how she looked like their daughter. She offered congratulations and such genuine sympathy for what we were facing. She said their hearts were with us. She expressed an interest in learning about Down syndrome along with us. I just now went back and re-read her message, and it made me tear up again. I know it has been a lot for their family to process, and I imagine they have wrestled with their own difficult emotions. We’ve talked since about how it was certainly not what any of us imagined and how it has already changed all of us. But I also know Lauren* and her family love our little Lina, and I am so grateful that with the long list of things we will have to worry about in the coming months and years, how her biological family responds to her will not be a concern.

5. An awesome big brother – Corin has certainly had his adjustments to life with Baby Sister, but he has been so very sweet with Lina. His parents have no shortage of meltdowns and battles of the will to navigate, but none of his angst has thus far been directed baby-ward. He clearly loves her and is proud of her, and it reminds me of what Jon said in the NICU, when I was thinking about Corin and how he would relate to Lina. Jon said, “At this point, Corin is the one person who won’t look at her as being different. To him, she will just be Baby Sister.” He was right. This is what unconditional love looks like. I pray this is the beginning of a very special relationship.

He announced to strangers at the greenway, “I am pushing Baby Sister’s stroller all by myself.”

There are more blessings to count, but given it has already taken me two weeks to write this post, I figure it’s time to wrap this up. There is always more to say, but I have a date with my old friend, the breast pump. (That really is a post for another day.)

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*Name has been changed for privacy reasons. 

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The road before us

I have followed the blog Enjoying the Small Things for probably the past couple years, and it has been consistently among my favorite internet reads. It’s written by Kelle Hampton, mother of two beautiful girls, the youngest of whom has Down syndrome. It has a huge readership, so many of you may already be familiar with it. In fact, a lot of people have recommended it to me in the last couple weeks. Kelle also recently published a book, which I just received as a gift and can’t wait to read. I’ve always strongly identified with her perspective on finding joy in the unexpected.

In the earliest moments of coming to terms with Lina’s diagnosis, I thought a great deal about that blog. It seemed so STRANGE that after so long reading about the Hampton family, I was now on such a similar journey. There have been moments when I have almost felt as if I somehow wished this upon myself. But aside from the uncanniness of the whole thing, it was so encouraging to be able to think about the beautiful photos of Kelle’s family. It helped me begin to picture our own family’s future. It seemed as if the time I had spent reading that blog had in some small way been preparation for Lina’s arrival.

In fact, there are a lot of things that, looking back, have probably helped prepare me for the experience of being Lina’s mommy. My dad was in an accident when I was 18 months old that left him legally blind. “Different is okay” was a theme of my upbringing, not just in what my parents said to us but in the whole way our family lived. I spent many, many hours at disability awareness seminars my parents helped conduct at churches all over the region. I had a childhood friend with a chromosome disorder similar to Down syndrome.

But it’s also been a bit jolting for me to realize how different it is now that it’s MY baby. I have smiled at children with Down syndrome in the stores or at the park and thought, “He is adorable,” or “She is just precious.” But suddenly I was thinking about the closet full of gorgeous clothes for my little girl and having a very hard time picturing those clothes on a child with Down syndrome. This is me being brutally honest. I was so accepting of everyone else’s children with Downs, but coming to terms with it being my child was a whole new ball game.

Those first couple days were complicated. I was initially in shock, just trying to wrap my head around this new reality. How I felt varied from minute to minute. Jon wanted to be sure we were able to celebrate the arrival of our sweet baby. I agreed, but I was surprised by what a relief it was when I called our embryo adoption counselor to tell her about the situation and her first response was, “Oh, Jolene, I am so sorry.” At that moment, I was hungry to have my feelings of grief and loss validated. I cried and cried on the counselor’s virtual shoulder.

Jon seemed to have an easier time coming to terms with Lina’s diagnosis than I did in those first few days. He was immediately on the internet, reading wikipedia entries and finding blogs by parents of children with Down syndrome. He found it encouraging to read stories of people with Downs leading successful lives. I wasn’t there yet. I did think and talk about the positives, but I was also grieving. During our NICU stay, I picked up a book about Down syndrome that had been given to us by our contact at Vandy’s Downs clinic. I started reading through the list of common health and developmental problems, and suddenly I felt very angry. It wasn’t so much for myself, but I was angry that my precious baby was going to have to face so many extra challenges. I resented that so many children would breeze through their milestones while my Lina had to work so much harder for every achievement. I felt envy for parents with “normal” babies. I thought about all the children in our circle of friends who will be so close to Lina’s age, and I grieved for the type of friendships I had imagined for my daughter. I thought about the family of the future I had imagined so many times: big, loud holiday gatherings with lots of grandchildren to fill our golden years. I thought, “Corin better marry someone who wants a lot of kids,” and then I thought, “Goodness, I hope I don’t actually put that kind of pressure on him.” Jon and I talked about how he had fallen in love with the name Eline because he pictured how elegant it would look on a wedding invitation. I felt keenly the loss of that future I had imagined for my daughter.

And yet, even as I grieved, God was working on my heart. Truthfully, I wasn’t doing a whole lot of praying. I just didn’t have the words, or the heart, to try to piece together what I needed to say to Him. Our first night in the NICU, I stood in the middle of the room after a midnight feeding, tears pouring down my face, and told God, “I don’t know what to say, but you know what’s in my heart. I need you more than ever before.” My faith was weak, and I was facing that question without an answer: “Why?” Why, after all the lengths we went to to give us the best odds of a healthy baby, after all the prayers we prayed, specifically asking God to bless our child with intelligence and to guide her development in the womb, why this outcome? Why, when it came to building our family, could nothing just be simple? I knew there was no answer, but asking the questions was a part of trying to process an outcome that was so very different from the expectations we held so closely for all those months.

Slowly, over those days in the NICU and in the following days since we’ve been home, my perspective has begun to shift. The second night in the NICU was much better than the first, and I found myself beginning to really bond with Lina. Over those late-night feedings, I looked into her face and began to recognize my daughter. The wheels of those deep instincts of motherhood began to turn, and I realized that already, I would go to the ends of the earth to give this child the best odds of happiness and success.

I began to see more clearly that my child’s extra chromosome will not prevent her from finding that happiness and success. Jon and I talked about how many “normal” people lead lives of dysfunction and unhappiness. It somehow brought me comfort to remember that having a child without development challenges does not guarantee freedom from parental disappointment or heartache. I began to remember the truths of those disability seminars: We all have our own difficulties. Some may be more visible than others, but they are there. Lina will have more challenges than some, but it was sinking in that she will find her own path to achievement and fulfillment. It is our job to help her. She will have her own interests and passions, her own talents and skills. They might not look like those we had imagined, but they will bring her happiness. I began to value the innocence she will likely carry with her through life.

As I have gotten to know this tiny new person over the past three weeks, I have fallen more and more in love. She is my precious daughter. I have stood over her cradle, watching her sleep, and breathed the prayer of every God-fearing parent: “You have entrusted her to me. Teach me. Help me be the mother she deserves.” I have looked down at her tiny form in the stroller as we walked at the greenway and felt joy that she is mine. I am more certain every day that her diagnosis does not change the fact that God chose this child for our family. I believed all along that He led us to embryo adoption, to our donor family, and to this baby. Yes, there is disappointment, confusion and pain, but I know Lina is a priceless gift, and I believe deep down in my soul that she will be a blessing in ways we can’t yet imagine.

Our day-to-day reality right now is really just your normal newborn stuff: round-the-clock feedings, sleep deprivation, lots and lots of tiny diapers, soaking burp cloths, the struggle to balance the needs of a toddler and a newborn while maintaining a semblance of normal routine. But truthfully, most of the time I’m finding it to be easier than I feared. I reserve the right to change my mind at any time, but for now, I am able to enjoy the tiny newborn stage with much less stress than I experienced with Corin. Lina’s feedings are complicated (nursing, pumping and supplementing by bottle), but she’s actually a better eater than Corin was at this age. Lina is a snuggler, and as much as I want her to sleep in her cradle peacefully all night, I kind of enjoy that she likes to be held close. I remember feeling in those first weeks with Corin as if someone had dropped me off on an alien planet; I recognized nothing of my life. This time, I have been pleasantly surprised by how much of our family life feels normal, even as so much has changed.

As we mark three weeks of Eline’s life, I am finding joy in picturing her as she grows. I think she’s going to be beautiful. And those clothes hanging in her closet? They are perfect for her. I know it won’t all be smooth sailing from here. There are still times when my heart hurts, and there will be many more of those as we walk the road in front of us. But this is our road, and as different as it is from where we thought we would be, it is beautiful in its own right. Here’s to the journey ahead.

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A metric ton of the unexpected: Eline Katherine’s birth story, Part II

Continued from Part I

Not long after Eline’s birth, Kathy began to have some concern over getting the placenta delivered. In fact, she asked Jon to pray as she worked. I did eventually deliver the placenta, but she and Gaylea both said they had never seen one in such poor shape.

Probably as a result of a badly degraded placenta, I ended up developing bleeding issues and severe cramping. Kathy administered several medications but felt that a hospital transfer was needed. The next couple hours were incredibly chaotic, and I was in excruciating pain. Jon called the ambulance, which arrived within minutes, and I was taken to the hospital where Corin had been born. Jon put Lina in her car seat and followed in the Jeep. Once I arrived at the hospital, they asked a lot of questions and got me admitted and prepped for a D&C. At that point, I just wanted them to knock me out and get things taken care of. I could concentrate on very little besides the immediate pain.

I got to see Jon and Lina for just a moment before they wheeled me into the OR for the D&C. Then… blessed relief, and waking in recovery feeling much, much better. After a half-hour or so, I was wheeled back to my hospital room. At some point, a nurse must have told me Jon had taken Lina to our pediatrician for evaluation. The information sank slowly into my still-foggy brain. As I lay quietly in the bed in the hospital room, exhausted and alone, things that had been lying dormant slowly began to register. Why had Jon taken our baby, who passed her post-natal evaluation with flying colors, to the pediatrician? I pictured her tiny face, and suddenly I was terrified. There in that hospital room, I was facing the realization that Lina had features that looked very much like Down syndrome.

I hadn’t been alone very long before our midwife Kathy arrived. She asked how I was feeling, and then I asked about the baby. Was she okay? Kathy said yes, she was fine, that Jon had taken her to our pediatrician for evaluation rather than having her admitted there at the hospital. I asked again: “But she’s okay?” Unspoken fears hung in the air. Kathy came around close to the side of my bed and gently asked, “You and Jon did not have time to talk about a potential chromosome issue, did you?” I said, “No…but I wondered.” Those fears no longer hung suspended in the air; now their full weight settled on me. I think I choked out, “Oh, Kathy,” and broke into sobs. Kathy hugged me close and said, “I know. I know.”

Things are a bit hazy after that. I remember telling Kathy that it didn’t seem fair, after all we’d been through just to get pregnant. I wondered if Jon had said anything to either set of parents. What was the doctor saying? In the chaos of the transfer to the hospital, I had not thought to bring my cell phone (or shoes, or anything except the gown they cut off me when I arrived). Thankfully, Jon had Kathy’s phone number, so he was able to call her and talk to me. He was still at the pediatrician’s office, and he was clearly overwhelmed. The pediatrician was fairly certain of a Down syndrome diagnosis and wanted Eline admitted to the hospital for better evaluation and observation. Jon was worried about her being separated from me for so long. I knew the hospital where I would be staying overnight was probably not the right place for the expertise we needed, though, so we ended up agreeing that we wanted her to go to Vanderbilt Children’s.

To make an incredibly long story a tad bit shorter, Jon spent six hours at the pediatrician’s office while they tried to sort out how to get our baby transferred from there to Vanderbilt. Usually, a transfer of this sort would happen from one hospital to another, and it apparently required quite a bit of extra processing for the Vandy NICU –on-wheels to make the trip to a pediatrician’s office. Frankly, Jon threw that doctor’s office into chaos when he showed up with our hours-old infant. No one really knew what to make of us and our confluence of unusual circumstances. We owe a huge debt of gratitude to our doula, Gaylea, who went to be with Jon at the doctor’s office and stayed with him through that entire ordeal, all after having attended back-to-back births and with groceries spoiling in her car.

Vanderbilt’s Angel One NICU transport finally arrived late that evening, and Jon took the ride with Lina and arrived at the hospital around 10:30 p.m. Lina was admitted to the NICU, and Jon spent the night there with her.

Sweet friends came to my hospital room to offer support and to bring dinner and a few necessities from home. Jon had avoided telling our parents about Lina’s likely diagnosis until he had been able to talk to me, but by evening, he had made the calls and my parents headed to the hospital to offer their support. Jon’s parents live about three hours away and made plans to leave as soon as possible the following day.

I spent a lonely night in the hospital with IVs running antibiotics and two units of blood. I was released in the morning around 10:30, and my mom was there to pick me up and drive me straight to the Vanderbilt NICU.

Vanderbilt’s NICU team was able to begin answering some of our big questions very quickly. The diagnosis of Down syndrome was certain. A chromosome karyotype run a few days later would confirm that Lina had the most common form of trisomy 21 – three copies of the 21st chromosome in every cell of her body. The medical team ran diagnostic tests and immediately ruled out several very serious health conditions that are common with Down syndrome. We are incredibly grateful that Lina’s heart and all other major organs are perfectly healthy.

The one remaining issue, which would keep us in the NICU for eight days, was making sure Lina was able to feed well enough to get the nutrition she needed. Because of smaller mouths and lower muscle tone, feeding challenges are common for newborns with Down syndrome. Lina ended up with a feeding tube for a few days to help her get the volume she needed to build her strength. I stayed with her to nurse and pump on a three-hour schedule around the clock. Jon was able to make periodic trips home to be with Corin, who was enjoying time with Jon’s parents – Mimi and Grandpa – but was also clearly struggling with the very uncertain state of affairs.

My mother-in-law – Mimi – cuddles Lina in the NICU.

I will say this: I have a new respect for any parents who have endured a NICU stay. It is not an easy experience, and I honestly have no idea how parents of preemies survive those months-long stays before they are able to bring their little ones home. I struggled with feeling terribly isolated in that NICU room, even with frequent visits from family and friends. The steady cafeteria and restaurant fare did a number on my digestive system, sleep was almost non-existent, and worst of all, I desperately missed my sweet boy. Jon’s parents brought Corin out to the hospital several times so I could see him, and saying good-bye left me in tears every time. Children under four were not allowed in the NICU, so Corin wasn’t able to meet Baby Sister until we brought her home.

Oddly enough, the feeding issues we have faced with Lina are ridiculously familiar. In fact, Lina has been a better eater than Corin was in his first few weeks of life. We were grateful the NICU staff worked with us to make sure she was getting enough to eat, but by the end of our stay, we were beginning to feel like getting her home was going to require a jail break. I started joking about having checked into Hotel California.

Eline was released from the NICU late in the day on Friday, September 21. The discharge process was painstaking, but we finally walked up our own stairs just in time for dinner, and Corin finally laid eyes on the phantom Baby Sister we’d been talking about for so long. (He promptly attempted to poke her in the face. Things have improved from there, although there was also the “accidentally beaning in the head with a toy truck” incident. Overall, he has been curious and very gentle.)

Look ma, no wires! Headed home…

Finally meeting Baby Sister

I cannot tell you what a relief it has been to be home. Jon’s parents were able to stay with us through the weekend, and then we were on our own: our family of four. We are terribly sleep-deprived, but so thankful to be settling into a more normal routine. It is so sweet to change diapers and snuggle our newborn without tangling wires and setting off sensor alarms. Corin is definitely still adjusting to the major changes in our lives, but he has settled down a lot over the past few days. Our fantastic circle of friends and family has organized a meal rotation to provide us with dinners for a MONTH. How amazing is that?! I am finding satisfaction in resuming the mundane tasks of laundry and housekeeping, although I admittedly cannot even begin to keep up with all the things I’d like to get done.

Of course, I know the bigger question on everyone’s mind is: How are we feeling about all this? How are we coping? The answer deserves its own post. Bear with me as I try to snatch a few more free moments in the coming days to share our continuing journey. {Follow-up post here.} For now, I will say that God is good. Even when I cannot find the words, or perhaps even the faith, to ask for what I need, He is here. I am certain today, as I was 16 days ago, that our family is safe in His care.

Two weeks old