Looking back - homecoming! Part IV

June 7
Now that I can see the light at the end of the tunnel, it is hard to go slow. I'm ready to take Ralphie home right away. Now that he is is doing better, a transfer back to the hospital in Wichita is possible. However, I am fairly certain that he would be discharged sooner from Children's Mercy that he would be from Via Christi. **The doctors in Wichita were always so negative about going home. I'm sure they would not have wanted to trust me with oxygen and would have never let me attempt to nurse Ralphie.** Also, I'm still a bit traumatized from the plane ride up here to Kansas City. But, the other kids are missing me alot. It is a difficult decision to make. 

**The ambulance that took me and Ralph to the airport was awful. The 90 mile per hour ambulance ride up the canal route was sickening. It was a very windy night, with collapsing thunderstorms in the area, and the rig was tipping from side to side. The flight was a nightmare. We arrived at the airport to find an overweight pilot with a beet red face. I was sure that he was going to have a heart attack while we were up in the air. Ralph was in bad shape and the nurses were busy trying to keep him alive the whole way. As the plane approached the runway of the downtown airport in KC, the back end of the place started to fishtail. The flight nurses didn't miss a beat. They could tell I was on the verge of passing out and immediately started asking me questions about my family. This brought me back around. I was extremely impressed with their level of professionalism.


By the way, who has flown with their child during a transfer like this? I have not heard of another mother or father being allowed to fly with their child. It makes me wonder...**

8:30 am - Ralphie took all his bottle feedings last night! He just took his 8am feeding, 2 1/2 ounces, in just 10 minutes. This is pretty amazing, considering how much time he spent intubated. He has already learned how to pace himself and breathe, suck and swallow in an organized way. We are trying him out on 21% oxygen, essentially room air, for a couple of hours before the doctors do their rounds. He seems to be holding up well! **I had not given up on nursing Ralphie, BUT I was wise enough to put it on the back burner. If I had insisted, this would have prolonged his hospital stay. I knew that we would be more successful learning at home anyway. Some of the nurses insisted on observing us during nursing sessions. Creepy and not conducive to our success.**

7:00pm - It is nice when the hard decisions are made for you. God willing, we are coming home this weekend! Ralphie is taking his feeding like a champ. He is weaning off of oxygen tonight. If he can sit in his car seat for a couple of hours without difficulty, then we will be on our way. The discharge planner has been making follow-up appointments for us. I get the feeling that the real work starts when we get home! 

June 8
"By faith in the name of Jesus, this man whom you see and know was made strong. It is Jesus' name and the faith that comes through him that has given this complete healing to him as you can all see." ACTS 3:24

8:00 - Sorry for the delay today. It has been a busy day for Stephanie. She has been meeting with every doctor or therapist in the hospital today. She has been going from the oxygen therapist to the DISCHARGE REP!!!!! Yes I said DISCHARGE!!! They are coming HOME tomorrow!!!! As long as he passes his last test. He has to sit in his car seat for 3 hours and not de-stat. If he can do that then I will make the 3 hour trip to get them and then WE will be home 3 hours after that to begin the next chapter in Ralphie's life. Life with LeRoy!!!

The other kids are excited they will finally get to see their baby brother home for the first time since he was born. We will be a Family again!!! Grandma Connie and Grandma Linda will be here at the house waiting on him to arrive home. Grandma Linda will get to see him for the first time tomorrow when we get home. The Lord blessed her with some time off from work to be here with us. Praise the Lord for answered prayers!!!!

It has been a long road the last 6 weeks and we still have a long way to go. He will be coming home on oxygen and a couple of medications that are will help him continue his recovery. Stephanie and I want to thank everyone for all of the Prayers and help that you have provided. We know that there are still a lot of you that want to help. We will be posting a way to help next week sometime. If you have ideas on ways to help us out please leave a message.

We will keep the web site up for a couple of more weeks **LOL! How about years?** so you can follow his progress his first few weeks at home. Please continue to leave messages for Steph and I. You have no idea how much your messages have help us get through this time in our lives. We love you all and will continue to update the website.

June 9
11:45 - We are finally home. What a day!!! **I got into a fight with the charge nurse over Ralph's car seat! James purchased a brand new seat and brought it up to Kansas City that morning. Since Ralph didn't do his car seat test in it we were either going to have to do ANOTHER car seat test (3 more hours in the hospital? They would need a padded room for me.) or take him home in the hospital car seat. I was livid! It was so silly, looking back. We ended up leaving the hospital in the ugly hospital car seat, driving over to the Ronald McD house, moving Ralph into the new car seat, and donating the hospital car seat to the RMH.**

First night at home. At long last!

 It has been a long day and everybody is in bed. The kids drew pictures and made a welcome home Ralphie sign. They were all happy to see him and momma was home to stay. We did not get home until 9:40 tonight and it has been a long day. Now it is time for the every 3 hour feedings to begin (12, 3, 6, 9) Steph and I will be taking turns feeding. **Would you like to know how taking turns ended up?! LOL**

More later....... Enjoy the pictures!!

Looking back - the big announcement. Part III

May 31
8:30 A.M. - A couple of things from last night... Ralphie got a bath last night and believe me he needed it. He enjoyed the washing. He only got a sponge bath but boy did he like that. **Did I ever tell you about the poor nurse who gave Ralph his first bath? Some frazzled and emotionally beat mommy nearly strangled her!** I then got to hold him and I read "Morris Goes To School" to him. He just looked at me and the book as I read to him. When I finished the book he snuggled up and went to sleep. I called the nurse this morning at 5 and she said he was awake and has been awake since 11P.M., we will have to correct that before he comes home. Awake during the day asleep at night. More later.....

12:30 P.M. - Great news!  Ralphie will be extubated before his 2pm feeding today. God willing, he will not need to go back on the breathing tube. We were able to meet with the cardiologist today and the news is promising. Our plan is to slowly discontinue many of his IV medications and the nitric oxide gas over the next month or so. He said that Ralphie would probably go home on some oral medication and maybe oxygen. This is big. No one else has ever brought up the subject of going home. His pulmonary pressures are still high, but not imminently life threatening. There is a chance that they will improve over the next 4 years as he grows. There is a chance that they won't. There is no way to predict what may happen. Praise God.

4:00 P.M. - His tube is out and he is off the vent. We are not sure how long this will be he may have to go back on the vent if his stats don't stay up. His stats dropped quite abit while they were taking it out. He was mad and very upset. They did get him calmed down and his stats back up.  **This must have been the worst, most horrible, successful extubation EVER! Ralph's sats were dropping, people were yelling and screaming at each other. Chaos, disorganization, running around looking for equipment...my baby turning purple. I nearly passed out. **


He is now in a tent. They will monitor him like this for awhile then decide what to do. Pray that they will only put a cannula in his nose and keep him in the tent. The next few hours are pretty important to see how his stats do. He is resting well now and we hope he sleeps the rest of the day. He was up almost 12 hours today. I will post some more pictures tonight when Steph and I get back to the RMH and I can download the pictures off my phone. Praise God for the distance we have come and the long road ahead. 

June 1
Wow, another month has come and gone. Ralphie had a good night last night. After a difficult extubation yesterday, his blood gases continue to improve and he is breathing deep and easy. All good signs. Perhaps we will move out of the ECMO room soon.Maybe to a room with a window. James goes back to Wichita today. Thomas and Jordan have their first baseball games tonight. Thomas has been talking about it for the past 3 months! I'll be staying here in Kansas City for the duration. 11:30am - We just made the switch from the oxygen hood to a nasal cannula. It went very smooth. I wish I could get some pictures of his unobstructed face, but James left and I don't have a camera. If his blood gases stay good we can start oral feedings. The nurse asked me if I want to nurse Ralphie or bottle feed him. It is so nice to be asked instead of told. It almost feels like he belongs to me. **It is difficult for an experienced mother to have a child in the hospital. When you are used to running the show, this experience can be very humiliating.**

9:30pm - What a big day.  Ralph is wearing a sleeper tonight. I never thought that his first time wearing clothes would be a big deal, but it is. He attempted to nurse for the first time today as well. He really did great! James is driving up tomorrow with the kids and his mom. He just can't bear to be away from the baby! I make sure he gets some more pictures tomorrow.

June 2
10pm - Ralphie got to visit with his Grandma, his Daddy, Wesley, Chipper, Thomas, Jordan, Rose, and Leroy today. Five of the Terpstras stopped by while they were in town as well. The baby had a good day. Lord willing, he is done with all of his IV medications. His oxygen has been weaned down to 50%. However, he is not sleeping well and his breathing was more labored tonight. Maybe he is just worn out. Please pray for rest and healing for Ralphie.

June 3
Ralphie got his own room today. We are in that nice room across the hall with the window that faces West. He looks different in the sunlight. A bit too pale for my taste. Incidentally, he has never seen sunlight until today. We have gone down to 32% oxygen and 13 parts per million nitric oxide. He seems to be tolerating this very well. Grandma Connie visited again today. Some of the kids were coughing last night, so they didn't go into the nursery today. I'm glad that James brought everyone up for a short visit. I know that it is hard for him to leave Ralphie and me here. Thank you all for the "love notes." I really enjoy hearing from all of you.

June 4
This morning I arrived to find Ralphie sleeping on his tummy with an oxygen mask on his behind! He has been suffering from a diaper rash for a few days now. His sweet nurse left his diaper off and was hoping that some extra oxygen would help it heal. It's too bad that daddy isn't here to get a picture! Ralphie's cardiac echo this morning was not conclusive. The doctor was not able to measure the pulmonary pressures with certainty. I believe he will have another test as soon as he is fully weaned off of the nitric oxide. This should be in the next couple of days.

June 5
I arrived to find Ralphie in a big boy crib this morning! He has a musical mobile to look at and room to stretch out. Ralphie's NO is down to 4ppm today. It will be off before tomorrow morning's cardiac echo. His oxygen is at 27%. We are getting very close! He looks great. He is starting to make those cute baby sounds and is smiling. The diaper rash is improving. The nurse practitioner has even mentioned going home sometime next week. From her lips to God's ear!!

June 6
Now that we are past the stage of a life-threatening case of meconium aspiration and pulmonary hypertension, we would like you to all know that God has seen fit to bless our family with a baby with Down Syndrome. You may wonder why we waited so long to share this. We are not in any way ashamed of our Ralphie or devastated by his chromosome disorder. We simply wanted to focus on the matter at hand, his survival. We wanted our friends and family to have the same focus. We refuse to put Ralphie under the burden of a label. God only knows what he will accomplish. We are as fortunate to have him in our family as he is to have friends and family like ours!

With that said, Ralphie looks great today! Very pink and happy, just like a new baby should look. I asked the nurse to fix the tape that holds his central line in place. It made the cadiac echo difficult the other day. I didn't want anything to interfere with today's test. It is almost 1pm and I am now waiting on the results. I am cautiously optimistic that the pressures are down. Ralphie is only on 25% oxygen now and the NO has been turned off. His sats are great, even when he is nursing, being changed or held. I'll update as soon as I get more information...

4:00pm - Great news!  Ralphie's pulmonary pressures are down. We can now think of homecoming. He will start taking a bottle tonight and he will be able to come home when he is taking about half of his feedings by mouth. Some babies have a difficult time feeding after being on a ventilator, so please pray that we will be successful. Some of you have asked about how I am truly holding up. I have virtually no responsibilities here, other than feeding the baby. I don't cook, clean, or care for any other children. You should be asking how James is holding up. He has been doing my job plus his job for over a month now. He has shielded me from the world when I needed it. He is a very special person and I am so thankful for him.

**Can you imagine how much crap I took for waiting to announce that Ralph has Down Syndrome? It was brutal. My midwife told me her suspicions immediately after he was born. We knew it was true, but it just seemed to be so insignificant compared to his other challenges. James and I NEVER focused on DS to begin with and we didn't want our friends and family to be distracted by it. If we had it to do all over again, right or wrong, I don't believe we would do it differently.**

Looking back. Part II

Looking back on Ralph's story has brought some things into focus for me. Firstly, I filtered a lot of the information that I shared back then. I suppose I was concerned about frightening our friends and family. I may add some additional comments in blue...mainly as a reminder for myself. Memories fade quickly, don't they?

Secondly, my husband is really awesome. He was awesome back then and he is awesome still today. His work takes him away from us frequently these days, so it's easy to forget. He wrote many of these updates.

Thirdly, the feeling of complete helplessness, complete heartbreak, and complete surrender is something that I can only appreciate by looking back. When you are in the middle of the storm there is only one way to go, forward. It reminds me of a sister in the Down Syndrome community whose son is fighting Stevens Johnson Syndrome and Toxic Epidermal Necrolysis (SJS and TEN) right now. Please take a moment to pray for little Kai and his family. They are in the middle of the storm at this very moment.

Back to Ralph's story...

May 27
Ralphie has had a great day today.  His ventilator settings have come down to 35% oxygen and he is taking most breaths on his own instead of letting the machine do the work. Room air is 21%, so we are not too far away!

He has an "echo" scheduled for Tuesday to check the condition of his heart and also to check his pulmonary blood pressure. I don't expect the doctors to make any more vent changes until we get the results. He is so alert and bright eyed! Much more so than I have yet seen. He looks as if he wants to coo and make those cute baby sounds, but of course he can't do these things on the ventilator.

The nurse gave Ralphie his first book today, Chicken Little. I was reading to him and showing him the pictures when the other mom in the room snapped a polaroid of Ralphie and I and gave it to me. She said we just looked too cute. Her 2nd little girl is 8 weeks premature and is sharing the ECMO room with Ralphie. **ECMO is a treatment of last resort for patients with sick heart and lungs. The availability of ECMO was the reason Ralph was airlifted to Kansas City.The hospital in Wichita had done all they could do for him.**

He was playing around with a pacifier when I left him this evening. The nurse trimmed it to fit around the vent tube and he really enjoys it! The Children's Mercy Security guards drive me back and forth from the Ronald McDonald house to the hospital. Nursing moms get free meals in the hospital cafeteria. Everyone here is so friendly and helpful. I feel very special.

May28
This morning Ralphie took off the bar that holds his breathing tube in place! He is so awake and active, I think we will have a hard time keeping him happy today. Thankfully the nurse has rigged up a mobile on his bed. Maybe he won't get so bored with something new to look at. Morphine was discontinued this morning and dopamine has been reduced.

May 29
Ralphie is officially 1 month old today. Yesterday went better than I thought it might. He was very relaxed most of the day and didn't get into any trouble. His dopamine has been discontinued as well as the morphine. Today is the day we get an echo of his heart. I am hopeful that the pulmonary pressures are getting better. But, at the same time, I'm fearful that they are not. I'm through trying to guess what will happen so I've been praying and fasting. **Nursing moms are not supposed to fast, but I needed something to "do" for Ralph. I had been pleading and crying out to God since the night he was born.**
More later...

2:48pm - Well, it is a good thing I was with Ralphie this morning. The "echo" machine showed up for the little girl next to Ralphie. I assumed it was for him, but the lady said he wasn't scheduled! I asked the nurse to check, and sure enough, the orders for the echo had mistakenly not been given. We fixed that and the echo was done. Now we just wait all day for the results. He's been alert and active for the past 3 hours. Ralphie is now getting 10cc's of milk every 3 hours! The vent settings are going down! All signs are looking good. He is having a spinal tap done right now. **I felt so guilty about authorizing this test. It was very painful and traumatic for him. The nurse practitioner said that he kicked like a mule.** If there is no sign of infection, his antibiotics will be discontinued soon. Thank you all for the encouraging messages!  I'm glad to be able to communicate with all of you in an unobtrusive way. Keep up the prayers!

6:30pm - We got a call from the doctor. The echo results are back and nothing much has changed. **My broken heart, amazingly enough, broke again at this news.** The right side of his heart is still moderately enlarged and the pressures are still high. We will be starting some different medication and will schedule a meeting with the cardiologist and neonatologist for tomorrow morning.

May 30
It was pouring rain when I got out of bed this morning. Good. I don't think I could stomach a sunny day. **Honestly, I didn't want to get up at all.** I'm going to try to get to the hospital around 8am. We can visit any time but between 7-8am and 7-8pm because of shift change. I hope we get a different nurse today. The gal we had yesterday would disappear on us. We would find her sitting and socializing with friends. I'd like to think she was just giving us some space, but it's hard to leave the nursery with Ralpie all alone in his room. **I could not bear to leave his side unless someone was there. Even then it was hard. The nurses' daily grind was my precious little baby boy. I didn't feel that they were attentive enough.**

2 P.M. - Today's plan is to work on weaning the breathing machine support. Ralphie is getting increasing milk feedings. We get to hold him during his 2pm feeding, even though he is still on the vent! We need to endure the waiting over the next few weeks. I say endurance rather than patience, now. We will just pray and wait. He has been resting most of the day so far. We are trying to keep him from pulling his breathing tube out. He likes to pull on it! He is getting stronger everyday and we need to remember that it is in God's Hands and Timing not ours!

3:50 P.M. - Momma just got to hold and snuggle with him for an hour or so. He looked at her with those bright eyes and then drifted off to sleep. She just put him down a little while ago and now he is sleeping. He does not like that tube in his throat. Look for more updates later. Thank you to all for the continue Prayer and Support. The other kids are great they are spending time with the Robert family and Grandma has them in the evening.

Looking back...

I didn't know what a blog WAS when Ralph was born. That strikes me a funny now, but it's true!

After the chaotic aftermath of Ralph's birth, we found that we needed an efficient way to keep people informed. My poor husband spent hours and hours and hours on the phone during the first few weeks while I was too emotionally fragile to talk to anyone at all.

I started writing things down on a temporary website after Ralph was transferred to Kansas City. Later I moved all that info over to http://babyhomepages.net/ralphie/music.php?t=index.php. I started Ralphcrew about a year later when it became apparent that I would continue to share. I never did move any of the original information over here. Today I will begin to move that information over and share our first days with you.

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Ralphie was born at home on April 29, 2007 after an uneventful pregnancy and a gentle labor. It was immediately apparent that he would require medical attention.  He had breathed in meconium sometime before birth and was in respiratory distress as soon as he was born. 

The paramedics were called and Ralphie and mom were taken to the hospital by ambulance.  We didn't even have time to weigh him!  He was born at 9:15pm and was at the hospital before 10:00pm.

The first few weeks are a blur at this point in time. I wish that I had the presence of mind to record the events and my thoughts at the time. Let's fast forward...

We are presently at The Children's Mercy Hospital. We are dealing with Ralphie's pulmonary hypertension as a result of his meconium aspiration. This high blood pressure of the lungs is adversely affecting his heart. On top of everything else, he has contracted pnuemonia! He is stable and doing much better as of today, May 27, 2007.

I want to take a moment to thank all of our family and friends. We are truly blessed to have such incredible people on our lives! You know who you are...you kept our fridge packed with food for the family, you made lunches for our school children, you cared for our young children so that we could be at the hospital for important tests and meetings with doctors. But most importantly, you held us up in prayer and continue to do so.

What more could we ask?

Shocker!!

Theo. Theo. Theo. *sigh*

Goodness gracious. I just got a call from Theo's endo, the lovely lady from Romania who cared for him when he first came home. She never fails to thank me for saving him from life in an Eastern European mental institution. She knows. Anyway...

When Theo first got home and was hospitalized with refeeding syndrome, he didn't gain ANY weight, even after recovering. Finally, he was tested for growth hormone deficiency and the results came back as a mild deficiency, a max level of 8.2. Any result under 10 is considered deficient.

His results are in from the growth hormone stim test last week. The doctor was SHOCKED! His max level was 2.

TWO?

Arrgh. This is a severe deficiency and will require another two years of nightly injections. Poor babe. I feel so awful for him. It really sucks that love can't fix everything, doesn't it?

SMASH!

Theo's birthday party was a SMASH! Umm...literally! 

 The nice white shirt HAD to come off. I knew what was coming!

Wonder who grabbed the cake before the candles were even lit?

Lesson learned: a 9 inch layer is TOO BIG for a smash cake.

He started out quite daintily...

...but got the hang of it rather quickly!

Since we were already completely messy, why not take the opportunity to practice with a spoon?

In other "Theo" news, he had his growth hormone stim test yesterday. It was a LONG day for us, up at 3:30am to drive to the big, big city. 

His first appointment was to follow up with the GI doc on his diagnosis of H. pylori. That was quick and easy. So quick that we had time to catch a little breakfast before his 9am blood tests. Theo was due for his prilosec, so I bought him a yogurt on which to sprinkle his capsule. Either I misfiled the information in my head or no one ever told me, but I found out upon check-in that Theo was supposed to be fasting for this particular test. We would have to reschedule.

My heart sank. The voices in my head started screaming about the $100+ in gas money that this trip requires. I was so relieved when they agreed to test him a little later in the day. Seriously, these people at this hospital have been so accommodating on many occasions.

Theo got his IV placed (he was an EASY stick!!) and we got started with the THREE HOUR test. Uggh! The thing that saved my sanity was that the first medication that they gave him was clonidine, and it knocked him out for a good two hours! I even got a little nap while holding him in the recliner. Thanks to the IV fluid his diaper filled up and leaked on me, but I wasn't about to wake him. (Thankfully I brought extra clothes, which I never do. Weird that I would have planned ahead so appropriately!) The nurse had a little timer that beeped every 30 minutes, then she would take another blood sample from the IV line.

I hope to have results sometime today or tomorrow and I promise to share.

Muscle Man

My little muscle man, watching a little Pocoyo!

Have you seen a boy watch TV on his tippy toes before?

When I brought Theo home from Ukraine, he spent 10 days in the hospital thanks to refeeding syndrome. After he started to recover, and his blood chemistry stabilized, and he started getting regular feeds once again...he didn't gain ANY weight. Nothing.

After several frustrating days and many painful blood draws and endless testing, Theo was found to be growth hormone deficient. Due to his deprivation and abuse for four years, he was diagnosed with psycho-social dwarfism. Like a goldfish in a bowl too small, he had stopped growing. He was miles below the growth chart for a child his age...13 pounds at 4 years of age.

I call him a little muscle man because he's had well defined muscles and very little body fat since he started growth hormone injections over 18 months ago. Good muscle tone is not exactly a characteristic of a child with Down Syndrome!

About a month ago, Theo stopped getting injections. He has gained an average of one pound per month up until now, but there are some serious risks to GH therapy, especially for a child with Down Syndrome. Like leukemia. (shudder!!)

Since we stopped the injections, he has lost a lot of muscle tone. He is softer, squishier, and looser. Not sure I like it! He is looking thinner in the face, too. More like when I met him. Boo!

Tomorrow Theo has a growth hormone stim test. We'll be getting up at 3:30am to drive to the big city children's hospital for this lengthy procedure. He will receive injections of substances that generally stimulate the secretion of growth hormone. He will have periodic blood draws to see if his body is working better than it did two years ago. He will go back on GH therapy if he has not improved.

I'm not sure what sort of results I'd like to see. Selfishly, I'd like to see him continue to receive injections. I'd also love to see him grow and develop normally without it...but I'm not that optimistic.

I am firmly convinced that there are many other post-institutional children who are growth hormone deficient due to psycho-social dwarfism. It may be very easy to miss this, especially in children with Down Syndrome, who are expected to be somewhat smaller than average. If your child is not making regular gains, is painfully small for their age, it is worth seeing an endocrinologist to explore this condition.

Also, psycho-social dwarfism cannot be detected by typical blood draws. A stim test, much more involved, is required. Don't get brushed off if you have real concerns.  

The mouse becomes the shark!

We called him mouse, almost from the very first day he joined our family. Such a tiny little guy, only 13 pounds at the age of four! He was instantly accepted and loved by our family and friends.

Nearly two years later, he's less of a mouse! More of a shark at 34 pounds and 37 inches tall. He would need to grow five inches and gain three pounds to scrape the bottom of the growth chart.

Theo is dealing with the consequences of the neglect and abuse he suffered during his first four years. We are all dealing. Even thought he is happy and healthy, this dealing overshadows his gains. Obsessions with water and food dominate his waking hours.

We must not leave any plates unattended. The refrigerator water dispenser must always be locked. The bathroom door is always closed. Cups must not be placed close to the edge of the counter top. You see there is a shark in the house and he wanders around looking for opportunities to feed his obsessions. Hyper-alert. Constantly circling.

Even so, I could not imagine being more emotionally attached to Theodore. He's no more mine than if I had given birth to him myself. I love the way he grabs handfuls of grass and tosses it up in the air. I love the way he hugs me tight. I giggle when he does pull-ups on the edge of the counter. I love the way he trusts me and tolerates long periods of unbroken, loving, eye contact. He's FUN!

I grieve for what has been stolen from him. But I have hope for his future and I'm so pleased that I get to guide him there as his mom. Tomorrow is his 6th birthday. I'll be thinking of his biological mother tomorrow as I work on his smash cake. Yeah, Theo gets a smash cake. Thinking of it just makes me smile!