5 days of bliss and then...

Well the twins were born, two days later we came home, and three days later Graham went to the hospital. It has been a crazy 3 weeks but I wanted to finally get something on the blog.  Graham started coughing on Friday and by Sunday evening his breathing was concerning enough that Matt and I called 911. Matt went to the hospital with Graham and I stayed home with the twins. Graham ended up being put on a ventilator and admitted to the ICU. By Wednesday the Wake Med doctor wanted to transfer Graham to UNC. While preparing Graham for transport he went into cardiac arrest. After getting him stable again they decided it was too risky to move him unless he was on ECMO (heart/lung machine). It was then decided that Graham would be transferred to Duke because they are one of the few hospitals in the nation that have a portable ECMO. So Duke came to get him and he has been in the PCICU (Pediatric Cardiac Intensive Care Unit) since then. 

Graham had two respiratory viruses (Rhino and Adno) and apparently has a congenital lung condition called malacia which means he has floppy air ways, plus his less than perfect heart. This has made for a very sick boy. He was on ECMO for 4 days and is still on the ventilator. He made some progress and 3 days ago they tried to take him off the ventilator but he wasn't able to breathe well enough on his own. He has taken several steps backwards since then. 

The twins and I (Liz) and my mom have been staying in a hotel near the hospital. Matt has been getting rides home in the evening then going to work and getting rides to the hospital after work. 

We continue to pray that God will heal Graham quickly and completely and that He will sustain our family during this time. We have been humbled and overwhelmed by the love and support we have received from friends, family, and church family. We are so grateful for all the gifts, visits, encouragement, and prayers. 

They're Here!

The twins were born Tuesday morning, October 21 at 37 weeks and 1 day. Benjamin Caldwell weighed 6lbs 9oz and Hallie Margaret weighed 6lbs 3oz. We are so thrilled to finally meet them! The labor and delivery went swiftly and smoothly as we had prayed. I will blog details on that later. They are both healthy and came home with us 2 days after birth.

As I sat in the wheel chair holding one baby in each arm waiting to leave the hospital it all finally hit me. I sat there tearing up, trying not to bawl in front of everybody congratulating me. We are so so blessed. From the day we found out that we were having twins anxiety set in. Worries about a difficult pregnancy, about carrying them long enough, about NICU stays and health issues, about delivery and risk of c-section, about all the stuff we needed to buy, and on and on. Many many prayers have been prayed over these babies. At 31 weeks I was hospitalized for preterm labor and went on bed rest until the birth. But now they are here and all that is behind us. They made it to 37 weeks and delivery went well and they are healthy. There I was holding these two perfect babies and for the first time I felt like I could really enjoy the blessing that they are. I am so thankful to the Lord for providing and answering all our prayers! I could not be happier!!

Doctors, Doctors, and more Doctors

Between the three of us we have at least 2 doctors appointments a week, plus Graham's three therapy sessions. Can I just say that I am sooo thankful for health insurance?! Last week Graham saw the neurosurgeon for a check-up and had a modified barium swallow study. This week he saw the neurologist and the ophthalmologist.

Matt and my mom took Graham to the neurosurgeon and for the swallow study. Too much walking for me to go to Duke for the neurosurgeon and the swallow study was basically dying Graham's food and watching him eat on x-ray which I couldn't be present for since I am pregnant. Mom drove and Matt and Graham met with the doctors.

Neurosurgeon:
There weren't any concerns from the neurosurgeon. She wants another MRI in March to make sure that everything is still working properly in Graham's neck. She mentioned that she wasn't surprised that Graham was in feeding therapy because children with stenosis in the neck often need that. Well, thanks for the heads up on that, lady! Apparently most of Graham's lingering issues (physical development delays, speech delays, eating issues) all stem from the stenosis in his neck. Too bad the pediatrician didn't know that when he made me feel like a terrible mom because I haven't overcome Graham's behavioral issues and forced him to eat table foods.

Feeding Specialist:
Graham saw the feeding specialist on Friday to get the results from the swallow study. My prayer was that there wouldn't be any physical abnormalities that would require surgery and that Graham would be agreeable for the appointment. Well those prayers were answered but we got some news I was not prepared for. Apparently when Graham tips his head back to drink from his sippy cup he just lets the milk run down his throat instead of gathering it in his mouth and then swallowing. This puts him at risk for aspiration. So we are supposed to thicken his fluids and start working to transition him to an open cup which will promote a better swallow technique. A 2 year old with an open cup... my entire house is going to smell like sour milk.

But the big doozy is that she wants him to go back to an all pureed food diet. Graham is not chewing correctly. He still tries to mash food with his tongue against the top of his mouth like a baby, even though he has all of his teeth. So he is swallowing large chunks of food which puts him at risk of choking and also doesn't allow his body to fully digest his food and get all the nutrition from his food. So at age 2, Graham is eating only pureed foods. This is both for safety reasons and so that we can start from scratch to reteach him how to chew and swallow foods. We started on Friday and it has been a battle figuring out how to puree foods and how to get Graham to eat it. Crying, lots of crying, and little eating. So far pureed mac and cheese and chocolate pudding are the only sure wins. Graham will go to feeding therapy once a week.

I may have shed a few tears when I heard that Graham had to go back to pureed foods. He is a very picky eater and most of his favorite foods are solid crunchy foods. We get him interested in food by letting him take a bit of a big piece or eat with a fork. What about trying to get him to eat what we eat. I can no longer offer him food from my plate. I'm on bed rest, and now somebody has to puree all of his meals. I guess nobody in this house gets to eat crackers or chips anymore. How can we eat them when he can't have them? Graham is not growing and I am desperate for him to eat and this is not going to be easy. Please pray that Graham will eat and that we will have wisdom and patience with him.

Neurologist:
We took Graham to the neurologist 6 weeks ago to see if she would have any answers about his nystagmus (bouncy eyes) or eating issues. She wanted to see his most recent MRI and scheduled another appointment for yesterday. Guess what... Duke still hadn't sent over his MRI. Sigh. But this time she mentioned some concerns that she didn't mention last time. She noticed something about his back and wants to do an x-ray to see his spine better because she thinks he may have scoliosis. She also pointed out that the top part of his arms is shorter than the bottom and that he could have some kind of condition that prevents him from growing, not just his lack of eating. She wants him to see Duke genetics but they are booked up through September of next year. She wants to see if he has any kind of chromosomal/genetic issue/syndrome that ties together all of his health issues. She says that if he does have something that can be identified then it would give us a heads up on other health issues he may face going forward. So we have to take Graham for a back x-ray and to have blood taken for some kind of brand band genetics testing.

Ophthalmologist:
Graham continues to see the eye doctor every 6 months. She doesn't have any answers for the nystagmus but wants to continue to monitor his eye sight and eye health since he has the nystagmus. She didn't have any concerns today! Praise the Lord.

Conclusion:
Our family obviously has a lot going on and the stress level is through the roof. I know that there are many people with children with much more serious health issues or handicaps but in a lot of cases those families know from day one that their child will never live the normal life they had dreamed of. With Graham, I am still holding on to the possibility that he will live a fairly normal life and with each doctors appointment and diagnosis I feel that slowly slipping away and that is very difficult.

We are grateful for the support and help from family and friends. We long for a day when our family is functioning normally and we can again serve others. Our 4 big prayer requests are (1) that Graham will eat and gain weight (2) that the twins will stay in the womb a few more weeks (I am 33 weeks) (3) that Matt's seizures will get under control with medicine so he can drive again (4) that we will seek the Lord and rely on Him for the grace we need during this season. Thank you for your continued prayers. We are so humbled.

Graham's Eating and Development

Eating:
Graham went to the pediatrician in July for an asthma follow-up. The doctor is satisfied with his breathing but was concerned about his weight. Graham had only gained half a pound since January. Finally, somebody besides me is concerned that he isn't gaining weight. The pediatrician wants us to offer Graham what we eat at each meal and if he doesn't eat, then he will be hungry enough to eat at the next meal. FALSE. Graham is a picky eater but he is also often not interested in eating even when we give him his favorite foods. Graham also likes to drink water all day long and the doctor said to stop letting him do that because water has no calories and he is filling up on water and then not hungry for food. So we are trying to limit his fluids and only give him milk, not water. Because mommy is drinking water all day to stay hydrated for the pregnancy Graham wants his cup too. This results in milk being dripped all over our living room. Sigh.

We are offering Graham 2-3 foods that he has eaten before at each meal, plus offering whatever we are eating. Sometimes he eats and sometimes he doesn't. We try letting him bite from a big piece instead of cutting things up for him. We try letting him use a utensil to keep his interest. We are putting butter, cheese, and mayonnaise on everything and buying full fat everything.

We went back to the pediatrician after 6 weeks and Graham had gained 4 ounces. The pediatrician referred us to a feeding specialist to make sure that nothing is wrong with the mechanics of Graham's eating.  Last week Graham had his appointment with the feeding specialist and she identified some immature eating techniques such as mashing food with his tongue against the top of his mouth instead of chewing with his teeth. She suggested Graham start feeding therapy once a week. We started Graham on reflux medicine because we think we can hear his food coming up and watch him swallow it back down. So far it doesn't seem to be helping.

Matt took Graham for a modified barium swallow test yesterday. Basically they coated his food and milk with barium and watched him eat on x-ray. Thankfully Graham was fairly cooperative for the test. We will get the results on Friday. Graham went for a check-up with the neurosurgeon yesterday and she said that children with stenosis (narrowing) in the neck can have issues with feeding so she was glad he was going to start feeding therapy.

We are praying that there is no major physical issue and he is just behind in his feeding development and perhaps having some reflux or digestive issues. We are praying that he will start eating better and gaining weight! We won't even have to buy new clothes for this winter b/c he is the same size he was last winter.

Development:
Despite Graham being uncooperative during physical therapy lately, he is continuing to make progress. He can climb the stairs all by himself. He is getting braver and steadier with his walking, taking 8-10 steps between objects. Our prayer and hope was that Graham would be walking by his 2nd birthday (Oct. 2) and by the time the twins were born. It looks like that is a very possible goal! We are so encouraged by his progress during an otherwise difficult time for our family. Thank you, Lord!

I took this video earlier this week of Graham walking! He is so proud of himself!

Matt's Health Update

About a month ago we had put Graham to bed and Matt was in the garage cleaning a gun and I was in the living room watching tv. I heard a funny noise, like a loud groan and then a crash. I went running to the garage and found Matt on the floor convulsing. I put something soft under his head and ran back in the house for the phone to call 911. I was concerned that he might have hit his head on the concrete but I didn't see any blood. He convulsed for several minutes and then passed out. He was just starting to come to when the firemen arrived at the door. Matt was quite disoriented and I was trying to convince him not to try and get up. I had to contain the dog and let the firemen in. Then Matt threw up. Eventually they got him up and in the house. He was still quite disoriented as they took him out to the ambulance, not answering simple questions correctly.

I called Matt's Aunt Kathy to come stay with Graham at the house. My neighbor called to see what was going on and she offered to come over until Kathy could arrive. So I gathered a few things and headed to the hospital. Matt was back to himself by the time he got to the hospital and we waited for a couple hours to see a doctor at the ER. (Side note: everybody thought I was in labor when I came waddling into the ER! Ha.) Eventually they gave him some Kepra (a seizure medicine he takes regularly) to prevent another seizure and sent us home.

Matt already had a neurology appointment scheduled for the next day. The neurologist decided to start Matt on an additional medicine. By being on two different medicines at low doses, he may avoid any serious side effects from either. Matt has been on the full dosage of the new medicine for a couple weeks now but continues to have mini episodes where he loses his concentration. The neurologist told us that our goal is to end these episodes and then we can be more confident that he will not have any more grand mal seizures. Matt had another EEG and has MRI scheduled for the last week in September, 6 months from the previous one. At this time there is no known cause for the seizures, the doctors are just trying to treat them with medication.

So Matt still isn't driving and plans to contact the neurologist this week to discuss the next treatment steps. Having the second grand mal seizure made us realize that this wasn't a fluke and that there is really something serious going on. This has been difficult to accept, especially since there are so many unknowns. With me on bed rest and Matt not driving we are basically shut-ins at age 29 (ha!). But we are so thankful for family and friends who are helping us and supporting us. Please pray that we will get Matt's seizures under control with medicine. Also pray for humility and grace as we have to rely on others so heavily for daily life right now.

After Matt's neurology appointment we went by Krispy Kreme for a treat. Graham was not a fan of the hat nor the doughnuts. Crazy kid.

Pregnancy Update - 32 Weeks

I have made it until 32 weeks! I started having pretty serious contractions last week and went to see my OB who sent me on to the hospital. They gave me a couple doses of Nifedepine in the hospital and gave me the first of 2 shots of a steroid (betamethatsone) to boost the babies' lungs in case they are born early. Matt was in Alabama for work and thankfully my mom was here to help with Graham while I was in the hospital. I was only in the hospital for a few hours and then went back to the OB the next day for a check and the second steroid shot. I was 2cm dilated at the OB on Friday morning.

They gave me a prescription for Nifedepine and told me to rest. It took all day long, many phone calls, and a trip to Clayton to get the prescription filled. Very frustrating.

Matthew came home Saturday evening and then Saturday night my contractions worsened to 5 minutes apart and we went to the hospital. They put me on a magnesium drip for 12 hours and I stayed in the hospital until Tuesday. Thankfully the magnesium wasn't as bad as I was warned it could be. I didn't get nauseous so I was allowed to eat. It just made me feel hot and weak. (So I had to get a catheter.) The magnesium was to help slow contractions and to benefit the babies' brains in case they are born early. I had to miss a baby shower planned by friends on Sunday afternoon which was a huge bummer.

I am home now on bed rest and taking the Nifedepine. I am still having contractions that range from sporadic to every 10 minutes. My mom and Matt's mom and a few friends are helping out with caring for Graham and everything else around here. We are so humbled and thankful for our church friends that are praying, offering to help, and bringing us meals. We are praying that I carry the babies to 36 weeks but every week that they stay in the womb is beneficial.

I hope to post updates on Matt's health and Graham's health soon.

And now a few pics:

The belly at 28 weeks. I need to take a new picture I guess.

A sneak peak at the twins nursery. (the crib bumpers)

Breastfeeding and Weaning

In honor of national breastfeeding month I am finally getting around to writing about weaning Graham. But perhaps I will start from the beginning. Graham always loved to nurse. He nursed exclusively and often for months. He never took a bottle despite three hospital stays where the doctors wanted him to take a bottle before nursing after surgery. I pumped almost exclusively for a week while he was recovering from heart surgery when he was 5 months old. I cannot count the number of medical professionals who have seen my boobs, either pumping in a hospital room or attempting to nurse a baby attached to multiple monitors and IVs. Of course Graham refused to take the pumped milk in a bottle so I was able to give most of it to a friend who needed it for her son.

When Graham turned a year old (October) and still wouldn't take a bottle or sippy cup I considered weaning him cold turkey. But then we scheduled neck surgery a month later and I wanted to nurse him through surgery as it was such a great way to comfort him. After surgery came the holidays and I was too busy to deal with weaning. Then over Christmas break, a miracle, Graham started drinking from a sippy cup! Then in January he dropped the morning nap which eliminated a nursing. So I was down to only nursing at afternoon nap and bed time.

In February I found out I was pregnant! I decided at that point that I would just wait it out because I figured my milk would start drying up and Graham would lose interest. And that's exactly what happened. Graham started being iffy about nursing at nap time and then one night before bed he didn't want to nurse. And that was it. I never offered it to him again. Easy. Graham was weaned at 18 months (in April, when I was 12 weeks pregnant). I am so glad that I waited it out and didn't do anything drastic. It turned out to be such an easy transition.

Overall, I loved nursing. I am so thankful that I never had any complications with supply or latching or pain. It was restricting to always be available and very stressful for both of us when I couldn't be. But breast feeding was so easy and quick, compared to preparing bottles. It was an easy way to soothe Graham when nothing else would. I did get some slack from people who didn't understand why I couldn't be out at bedtime or leave Graham with a babysitter. I think the pressure from others who thought I should be able to leave him behind was more stressful then not leaving him behind! I look forward to nursing the twins and am hopeful I will have enough milk. But these babies will be taking a bottle from the beginning! It will be necessary for my survival!

Our Newest Challenge - Matt's Health

A few months ago Matt started experiencing "episodes" where he would lose concentration for a few seconds. He didn't pass out but would just lose his focus or train-of-thought. His doctor referred him to a neurologist. Matt had an MRI and an EEG and they were inconclusive. The neurologist thought he might be having simple partial seizures and wanted Matt to take a low dose seizure medication for 30 days to see if it helped. Matt took the medicine for 30 days and didn't really notice any difference. He ran out of the medicine and hadn't scheduled a follow-up appointment yet.

Well that brings us to a week and a half ago (June 18) when Matt was in Alabama for work. He was working out in the gym at his hotel when he apparently had a seizure and passed out. He came to as he was being loaded into an ambulance. There was a lady in the gym who called 911 and got the hotel manager. Thank goodness Matt didn't injure himself falling and that he wasn't by himself when it happened! The ER doctors put him back on the seizure medication. It was definitely scary and I hated that he was in AL away from his family. He did have another coworker there who picked him up from the hospital and who traveled back with him to Raleigh 2 days later.

Matt saw his neurologist in Raleigh this past Wednesday. Since the seizure in AL and going back on the seizure medication, Matt hasn't been having any of the minor episodes that he was experiencing previously. The neurologist suggested that perhaps the generic medicine he got in AL is slightly different than the generic he had in Raleigh and perhaps putting him on the name brand version would ensure that he continues to do well on it. Apparently even within the same pharmacy they may get different generics and the dosage can vary by 10-20%. We are waiting to see if insurance will approve the name brand medicine. Matt will also have another EEG and wear a heart monitor for 30 days to rule out any heart issues.

Matt is doing well for now but there are still a lot of unknowns with neurological problems. So for now, he isn't driving. He has a co-worker who lives in our neighborhood that is driving him to and from work. We are praying that the doctors will have wisdom and answers, that Matt will not have any more seizures, and logistics while Matt is not driving.

A Tribute to Hallie

My Grandma Hallie, my mom's mom, passed away Memorial Day weekend following a stroke. She was greatly loved and is greatly missed. The family wanted somebody close to Grandma to say a few words at the funeral but none of us could seem to get our thoughts or our words together and knew we certainly couldn't hold it together to speak at the funeral. Well, my dad ended up typing out a "Tribute to Hallie" and Matt read it at the funeral. It brought my mom flying down the stairs in tears to hug my dad when she read it! I think it meant a lot to mom that her mom meant a lot to my dad. 

Here is the tribute that he wrote:

I wanted to share a few thoughts about Miss Hallie from a son-in-Iaw’s perspective.  I love my mother-in-law.  You probably don’t hear these words very often.  But it’s true.  I don’t know if I ever told Miss Hallie, but it’s true and I should have told her.

I first met Miss Hallie over 50 years ago.  Bob and Pam and I would go fishing and come back and clean the fish and then turn them over to Miss Hallie.  Miss Hallie took care of all the details in the kitchen.  She always made me feel welcome and loved.

Miss Hallie was kind, sweet, gentle, compassionate, generous to a fault, funny and amusing.  But she was no pushover.  Bob knew that and her kids knew that.  When Bob would push his opinion a little bit too far Miss Hallie would tell him to kiss a part of her anatomy that wasn’t her lips.  Her kids would get the “kiss it” comment occasionally as well.  I interpreted the “kiss it” comment to mean “I love you, but I don’t care what you think I’m going to do it my way.”  In the hospital the other day Julia was sitting with her face close to the bed and teasing Miss Hallie about something.  You should have seen Miss Hallie try to swat Julia with her right arm that she just couldn’t get to move.

In the earlier years that I was part of the family I remember all the time that Hallie spent taking care of her mother, Mary and then later on her father Esse.  I’m convinced the Lord added extra years to Miss Hallie’s life to make up for all the years she spent taking care of her parents.

Miss Hallie loved her grand children.  She loved to watch them play ball.  I’m sure she holds the unofficial record for the most ball games attended by a grandmother at Lawrence Academy.  At holiday family dinners she made sure she prepared everyone’s favorite food.  Her kitchen counter looked like the K & W cafeteria.  In later years when Pam, Julia and Jackie had to do much of the preparation they tried to get Miss Hallie to pare down the menu but they usually didn’t have much success.

And her grand children loved her.   Julia showed me a comment that Will wrote when he was a little kid.  If he could have one wish come true he wanted to move to Midway to live with grandma Hallie so he could play with his cousins.   We found a short story written by Elizabeth when she was in the second grade called “Casey’s Flower”.  On the title page it was dedicated to Grandma Hallie.   I’ve never known a grown man who loved to visit his grandma as much as Wade loved to visit Miss Hallie.   You could tell he didn’t make the visit because it was an obligation but because he loved her and she was so much fun to be around.

You can tell a lot about a mother by how her children turned out – Pam, Julia and Wood – loving parents, dedicated teachers, a postmaster, fire chief and farmer, all active in their communities and churches.  Great people to know and be around.  And look at the way they took care of Miss Hallie in recent years as her health failed.  Julia leaving her family in Wilmington to come help as much as possible.   Miss Hallie always had a to-do list for Wood.  And Pam stopped by almost daily on her way to and from Lawrence Academy.  Pam will probably never plant another tomato or okra plant again but she sure planted a lot for Miss Hallie.

We are all better off for having Miss Hallie in our lives.  We will miss her but we won’t forget her because of the legacy she leaves us.  I see parts of Miss Hallie in her children and in her grand children.  She may have even rubbed off on me.

Twin Genders!

Two weeks ago we had our 18 week level 2 ultrasound. The ultrasound revealed that both babies are healthy, including their hearts! Praise the Lord. And we also found out that we are having a BOY and a GIRL! We were excited to find out the genders but so very thankful to find out we have two healthy babies. Everybody tends to say that, but believe me, when you have had a child with as many health issues as Graham, you mean it! We are still working on picking names.

Pics of Graham's ankle braces

I finally got some pictures of Graham's braces. He is now walking eagerly while holding our fingers! (Thanks, Casey, for the extra wide shoes to fit the braces!)

Graham's Development

Graham started physical therapy in January (at 15 months old) and has made great progress since then. The physical therapist comes to our home once a week for an hour and we really like her. Graham is usually cooperative until the therapist touches him, at which point we things get dramatic. By 16 months Graham started scooting on his bottom. See the post on scooting here. He can now scoot quite quickly and will easily go from room to room. Most babies wear out the knees of their pants and Graham wears out the bottoms! By 17 months Graham started pulling up. By 18 months he started cruising around the coffee table. Now (at 20 months) he cruises easily and quickly around objects and can go between objects and is becoming more interested in walking while holding on to our fingers. He still refuses to spend any time on his stomach except while sleeping. 

Graham got braces for his ankles (Sure Step SMOs) at 19 months because his feet like to roll in too much. He is still adjusting to wearing the braces. He no longer fusses when we put them on but because the braces have to be worn with big bulky shoes it is more difficult to get his feet under himself and his feet are heavier to move. Supposedly the braces will help strengthen the right muscles and give him better balance to move towards walking.

We have been very pleased to see Graham progress physically in the last few months. I mean he didn't even start sitting up until 1 year old! We are hoping he will be walking soon so he can start keeping up with all his friends!

A couple pictures from when Graham first started standing. (Taken Jan 15)

Graham on his exercise ball used for many physical therapy exercises. (Taken Feb 2)

 We owe a big thanks to these stacking cups for encouraging Graham to do physical therapy exercises.

Graham's beloved play table loaned to us from Aunt Julia.

  

Graham standing at the playground.

Standing outside at the fence.

I haven't gotten a picture of Graham's braces yet but they look like these.