Tag: motherhood

Through Grandma’s eyes

I have so far resisted the impulse to write and to let Emily handle all the blogging. But after reading her most recent post about the beginning of this journey, I feel like adding some of my own thoughts.

It is difficult for a mother of seven to see her daughters struggle with infertility. I always have a prayer in my heart for them to be able to experience the joy that I feel as a mother and grandmother.

When Emily and Brian came to us with the story of the little baby born in Michigan that might not have a long life, I had such mixed feelings. I wanted them to have this little guy in their lives, but didn’t want them to have to suffer any more sorrow. There were so many unknowns. I can’t tell you why I fell so instantly in love with that little 2 x 2 inch digital image, but I did, and hoped that things would work out.

I don’t want to jump ahead too much from Emily’s story…but the best part of November last year for me was that I got to go to Michigan and meet Patrick myself. Brian had to come back to Utah and complete a project at work. Thankfully, we have access to Delta Buddy passes and I was able to fly out and stay with Emily for the week he was gone.

She picked me up at the airport and I don’t remember if we went to the hotel first, but we were at the hospital in no time. We had to check in at a secure desk and then off to wash. This was an event in and of itself. Roll up your sleeves, take off your jewelry, look at the clock and then begin to scrub and not just for a few seconds, it took several minutes.

Then through a maze of sorts (took me a couple of days to figure it all out) and we were in Patrick’s room. The lights were dim and there he was…big brown eyes and lots and lots of dark hair. He was so tiny. Just over 5 lbs. His tiny head fit easily into just the palm of my hand. Holding him was no effort at all, except that he had leads and tubes that connected him to life-saving and monitoring equipment.

The next few days were spent mostly at the hospital. We spent very little time in the hotel, just enough to heat up some food (can’t cook everything in the microwave believe it or not) and send home the many, many pictures that we were taking to keep Brian up-to-date. We had time to attend a Sacrament Meeting and catch some people at the Detroit Temple and ask them to place him name on the roll there. But we made sure that we were there for rounds morning and night as much as possible. Every day there were new things to learn about Patrick’s condition.

Emily was swamped with the details of the adoption, the insurance, medical decisions, travel plans and keeping family back home in the loop. Because she had phone calls to make, I got to hold Patrick for many, many hours. He isn’t able to have much by mouth and the instinct to comfort a crying baby with a bottle or breast just wasn’t an option. We quickly learned the value of a “paci”.

The nurses there are amazing. They are caring and skilled. They seemed to have an instinct for being available but not in the way. I felt comfortable enough to sing him and tell him stories and I know Emily did, too. And I know that when we weren’t there, they were holding him and loving him just like we did.

I will forever treasure that special week getting to know this grandson. I am grateful for the self-less decision that Brian and Emily made to bring him into our family. They are amazing, completely prepared by the Lord for their role as Patrick’s parents.

Happy Birthday Patrick!

A year ago, I was a basketcase. Against all reason, I’d convinced myself that I should have gotten a call from my adoption caseworker about a child.. even though we’d only been approved to adopt for a little under 2 months.

Little did I know that two time zones away, a beautiful little boy had just been born. At birth, the doctors doubted he’d survive. Labor had been induced three weeks early because when his birthmom went in for an ultrasound, the doctors discovered that Patrick was in trouble (beyond the already known problems gastroschesis and suddenly missing intestines).

After he was born, Patrick was swept immediately away to surgery where they discovered that his Short Gut was substantial. His birthparents were told maybe had 24 hours to live.

Now here we are, a year later. Patrick is thriving, in spite of all he’s been through and the many, many times that doctors have questioned how long he’d live.

Patrick’s life in every way is a miracle. What a blessing it is to have him in our lives.

Happy birthday, Patrick!

For all your party-goers, the party’s still on at our house this afternoon.

Update: Two weeks (and a day) after surgery

Well, it’s been another week. Most people are surprised to learn that we are still at the hospital. Well, we did think that the recovery would be no more than two weeks.

But here we are.

It turns out that Patrick’s large intestine is needing much more time to adapt than was anticipated. The problem is that, never having been used, first it had to wake up, and then it has to stretch back to a normal size.

They did a contrast enema today. That means they squirted contrast in Patrick’s bottom and then watched on X-ray as it moved up through his large intestine, and then his small intestine.

The good news is that it moved through without problems. There are no obstructions or strictures. The bad news is that, well, it still resembles a long noodle more than a colon. And it’s fitted to a small intestine that is quite stretched out.

So the stretched out, and therefore weaker, small intestine is trying to push things through a super tight large intestine (imagine a balloon that hasn’t yet been inflated). And it’s just not working very well.

I’ll talk to Patrick’s surgeon tomorrow about the study and see if there is anything more that can be done. So far, though, the answer I’m given most often is that we just need to wait. Hopefully time and use will balance things out.

In the meantime, we just keep waiting here. I don’t know quite what to do with myself. Without feeding, ostomy, IV’s (I’m not allowed to touch them), or even diapers really, there isn’t much in the way of my normal nursing duties to do. So I’m trying to spend my time just being a mom… playing with Patrick and helping with the basic things like sleep, comfort, and cuddles.

The good news is that Patrick actually feels quite well, as long as we don’t let too much build up in his stomach. And this lends itself to fun new adventures like baths in a bathtub and learning to sit.

It’s not the easiest thing being cooped up in this tiny crowded room together with nurses going in and out all the time. We get a bit bored of each other sometimes. But we’re doing the best we can and just praying that Patrick’s body is up for the challenge it’s been given.

Transplant Pre-evaluation: Day 2


Monday morning I woke up at around 6 a.m. to try to get everything packed and ready for a day at the hospital. Our first appointment of the morning was at 9 a.m. and we needed to arrive early enough to check in and find our way around.Our transplant nurse, Sandy Mitchell, met us in the “Whale” (outpatient) wing of Seattle Children’s Hospital. We had to stop and get badges at a security desk at the entrance identifying us as Patrick’s parents. Then we went to a registration desk in the middle of the main floor and they got us checked in. They gave us a “purple pass” to use to check in for the rest of our clinic visits that day so we wouldn’t have to wait in line again to check in, and then gave us a pager and sent us off to the cardiology waiting area.


Patrick’s first appointment was for an EKG. They stuck probes all over his chest… so many that you could barely find a patch of visible skin and then in just a few minutes had a printout of the electrical readings of his heart. The funniest thing about all this is that we did it all with him still in his stroller. Hooray for whoever at Carter’s thought up the snap front bodysuit. Best hospital clothes every dreamed up for a baby!

Next Patrick had an echocardiogram. This is an ultrasound of his heart and it took about an hour to do. We undressed him this time and I laid on the table with him and kept him calm and entertained. Between Baby Einsteins on the TV and the cool black and white images on the monitor, though, he didn’t need my attention much. Funny the opportunities that life presents you, though. I finally got the chance to see my baby’s heartbeat on ultrasound!

After lunch, we headed upstairs and met with the nutritionist for the intestinal transplant program. She looked over Patrick’s most recent lab results, his output history, and his current diet and then she made suggestions, which I’ll be blogging about in a future post. It was great to hear he say that she was happy with how Patrick’s care is being managed and that she fully trusts our dieticians here.

Our next appointment was probably the most brutal of the day. We spent 2 hours with the transplant coordinator and she went over all aspects of the transplant. She explained what they’re looking for in a transplant patient and how the approval process works. (Basically, after the workup the transplant team meets together and decides if Patrick is a good candidate for transplant and if they’re willing to list him, or if there might be other things they can do to care for him w/o a transplant). Then she explained that Patrick, if accepted, would be followed closely by the team in Seattle and would probably make regular visits back to Seattle pre-transplant so they can monitor his care.

She explained a bit about what to expect when an organ became available. We learned that he will have 6-8 hours max to get to Seattle once we get a call saying that there is a donor organ. He’ll need to be healthy at the time, of course. The surgery will be a very long one, followed by a hospital stay of at least a month.

Most of the talk was about what to expect after transplant, though. First of all, to prevent rejection of the new intestine, his immune system will be surpressed. Because of the risk of rejection and other complications, we’ll need to live close to the hospital so that he can have regular follow-up visits, including biopsies to check for rejection. He’ll be on immunosuppressants for the rest of his life, but in that first year, at least, his immune system will be incredibly weak. We’ll have to avoid public places as much as possible and avoid exposure to any kind of illness, bacteria, or other source of bugs that can cause him problems.. His diet will be limited, and at first he’ll probably still be on TPN as he learns to eat and eventually to get enough nutrition that way, but they’ll work to slowly wean him off of that. He’ll be at risk for a lot of big scary health problems, including rejection, infection, and a certain type of cancer that can develop when the immune system is supressed. Here’s more information about the risks and ramifications of life after transplant.

Our last scheduled appointment was with pre-anesthesiology, which was really a simple one, considering that Patrick’s had surgeries before. They we headed upstairs because they’d ordered a bunch of lab test. We pushed to have labs drawn through his broviac, but they still wanted us to ask at the lab for it to be drawn by just sticking a vein. They told us to ask for their best tech, which we did. He took one look at the list of tests and then at Patrick and said that he didn’t feel comfortable drawing that much blood from a kid this size, especially through a needle, when he has a broviac line. So, he took a little blood for some blood typing, gave us a bag to collect a urine sample and sent us on our way.

We were pretty overwhelmed that day and avoided giving updates because it was so much information to process ourselves. Instead, we went out to dinner and Patrick made our evening for us.

While we were eating, I looked over and noticed that Patrick was imitating my expressions while I ate. He was making chewing faces and licking his lips when I did. Then he started to blow bubbles and, well, I decided to blow bubbles back at him. The next thing we knew, he’d learned to blow raspberries and would happily spit back at us whenever we spit at him. It was a fun game to play for the rest of the evening and week, and definitely helped to lighten the load of a HUGE day.

The last legal hurdle

Our adoption process is a bit like a triathlon. The first leg is the home study and finding process. Most of you have heard about that. You answer a bunch of questions, clean every nook and cranny of your house (even the ones a caseworker would never look at), and then wait and publicize and wait some more.

The second leg for us has had a lot of hurdles. Some of the milestones have been a pre-placement agreement, enrolling Patrick in our insurance, a court date to establish custody, pre-authorizing a medical transport, and today we crossed the last hurdle… the Interstate Compact, or ICPC.

An ICPC is a formal agreement between two states about how an interstate adoption will be handled. It has to be finished before the child can leave the state. And we’ve been sitting here anxiously all weekend waiting for it to come through. And finally today at 4:15 EST we got the authorization we were waiting for to take Patrick back to Utah!

So now the only thing left for us to be able to go home is arranging the air ambulance for him. We expect that to be worked out tomorrow morning. If we’re lucky, we’ll make it home before Thanksgiving. (Knock on wood). Then the last leg is 6 months’ supervision and then the adoption will be final.

We are so excited to be able to bring Patrick home and let him meet the family and friends who have been praying so earnestly for him.

In the meantime, I’ve thrown a couple of other pictures of him in just because that’s what a bragging mom should do.

Patrick’s doing really well this week. His surgery on Monday seems to have been a success. A couple of days ago his jejunostomy started to work. They started feeding him again yesterday and today advanced him to formula. (Patrick doesn’t get much nutrition from food, but eating stimulates his other organs to work and may help preserve his liver and increase his chances of making it to a successful transplant.)

He’s also making great strides in winning us over. He’s pretty good at convincing me that I should hold him for hours for no reason beyond just that he wants it. I’m a sucker for the little smile he gives me when he recognizes my voice or my face. Howie’s not faring much better in resisting his charms.

We’re parents!

We have some exciting news! We have been chosen to adopt a special needs child in Michigan. He’s a beautiful little boy. 5.5 lbs. He has a condition called “short gut” and needs a bowel transplant in order to survive. Until he can get to that transplant (between ages 1 &2)… and even after… his chances of survival are only 50/50.

We’re a very proud mom and dad. We’re also a bit overwhelmed by the sheer weight of the burden of his medical needs and a very complicated adoption process here. We appreciate all of you who’ve been offering prayers on our behalf.