Tongue Tied

I know this is my second post today, but there is something I need to get off my chest.

The fact that Joey has Ds is not obvious to most people. One of the obvious indicators of Joey's Ds, however, is his cute little tongue. He often sticks it out deliberately or allows the tip to stick out of his mouth. For some reason though, this is something that people comment on all of the time and something which I am not sure how to respond to. Do I tell them he has Ds and that is why he is sticking his tongue out? Do I simply ignore the comments? Do I just laugh and say I know he likes to stick his tongue out? I am just not sure how to respond to these comments and wish people just stop commenting on it. But I'd be curious to know how other moms deal with this. Any suggestions?

The other day, however, I was shopping for a nursing bra at a maternity store and the sales girl commented on his tongue. I am not sure why, but I told her it was because he had Ds. I guess I was somewhat hoping that by telling her that, she might think twice about making such comments in the future. Instead, albeit a few minutes later, she said something else that has been bothering me for days.

Leaning over Joey's carrier she said something to the effect of "I bet this little one is going to be a lawyer someday." If I had not just told her about him having Ds I might have shrugged the comment off a bit easier. And maybe I am being overly sensitive, but this really upset me. Although I felt like crying, I simply said "just like mommy" and left feeling really defeated.

I want, with all my heart, to believe that Joey can be anything he wants to be when he grows up. But I also feel like I have to be realistic, which makes me feel bad. Am I the one limiting my baby. Do I encourage him to aspire to being a doctor or lawyer despite his Ds?

In fact one of the hardest things for me to come to grips with, with respect to Joey's Ds diagnosis, has been accepting the fact that there are limits to what my baby is going to be able to do when he grows up. So for someone to say "I bet this little guy is going to be a lawyer when he grows up" was sort of like pouring salt in the wound. It has been really hard for me to acknowledge that Joey is probably not going to go to law school, like his mommy did, or to medical school like I would have liked to have done had I been able to pass chemistry.

Instead I know that we have to set realistic goals and to celebrate the small things that Joey accomplishes. And I am very proud of all of the things he has accomplished already. He is rolling over. He smiles and coos and babbles in response to us. And he has been so brave in dealing with the hospitalizations and the surgery. I just wish it were a little easier to swallow the fact that there are limitations sometimes and I wish I knew how to intelligently respond to these situations.

Vegas Baby!

Growing up in Southern California I have been to Las Vegas probaby around 50 times. We took Joey to Vegas this weekend for the first time. This was Joey's third flight, he has flown to San Diego with us twice already, and once again he did wonderfully. It's funny how people steer clear of you on the plane with a baby... Especially when (as he did in San Diego once) he has a mini meltdown in the terminal before we board the plane. On that particular occassion he just had to poop.

But with Joey people should be so lucky as to sit near us. So far he has not let out a peep on any of our flights. As always he is such a good boy. We are sure however to have a bottle for him as the plane is climbing to it's cruising altitude and another available for the landing. So far that has kept his ears from popping.

Here he is enjoying the ride and playing with the toy we borrowed from Joaquin. (Thanks Jen it is still a huge hit!)


We went to Vegas for one of my best friends from law school, Erica's, baby shower and to see my parents who drove up from San Diego. Here are some pics of Joey enjoying the pool at the Rio where we stayed.

Joey with Grandma.

With Daddy, Grandma and Pa Pa in the pool.

And playing with Grandma up in the room.

My how the way we spend time in Vegas has changed !! A year ago Tony and I would have been in the Casino the whole time. Now we spent most of the time playing with Joey. This was definitely a change for the better (and cheaper)!

Bye-Bye Cardiologist

Joey had his follow-up appointment with the cardiologist Thursday morning and GREAT NEWS... the small Patent Ductus Arteriosus or PDA that was noticed on Joey's first Echocardiogram at birth has closed. The doctor has given Joey's heart a clean bill of health and said he does not need to see us again. We feel so blessed and we thank God that Joey's has no issues with his heart.

Also... last night Joey slept in his crib in his room for the first time.

We had tried putting him down for naps in there before with no success. Those little eyes would pop back open the second we put him down.

But last night he did great... slept in his crib in his own room all night. We are so proud of our little guy.

Here are some pictures of Joey's room.

My very talented sister Cassie painted the picture on the wall next to the window for Joey. It's very cute. I will have to post a better picture of it later.

Almost Wordless Wednesday--Father's Day

I love how Joey looks at his Daddy...

Tony can get Joey to smile like no one else...

Joey and his Daddy before church on Sunday (Father's Day)

Father and son out by the pool...

Perfect

To me Joey is perfect. This weekend I was laying on the bed with Joey talking to him and he was making sounds back at me and it dawned on me... This baby is perfect. To me his features are perfect. It is perfect how he tries to make sounds when you talk to him and how he smiles when you do something that he likes. He is perfect in the way he asks to be fed, smacking his lips (no crying here unless you ignore his cues). He is a perfect angel all night long in that he sleeps most of the night. He plays by himself perfectly, sometimes for over an hour while I fold laundry, do dishes or try and cook dinner.

I saw the Memorykeeper's Daughter on tv this weekend. It kind of bothered me the way they portrayed the baby with Ds, like she was some freak of nature, compared to the baby without Ds. I did not think it was a fair portrayal of babies with Ds. Especially when I look at my baby Joey, or my punkin as we call him, because he is perfect. He looked perfect to us when he was born. And to us he will always be the perfect baby.

Joey playing with the tissue paper from his Daddy's father's day present.

Begging to Bring Joey Home

This is also a flashback Friday but I did not want to use that phrase again in the title. Here is the last entry on Joey's initial (yes... there was a subsequent one) hospital stay. I don't mean to dwell on this but I think it is important for others to know what the process of getting your baby sprung from the NICU can be like, and the importance of being your baby's advocate to hasten the process.

After the tubes came out of Joey's stomach and he began feeding from a bottle, we were moved to Room E of the NICU. Most of the babies in that room were there for problems with feeding and to gain weight before going home. While Joey had lost some weight from the intestinal blockage and surgery, and was down to about 6.5 pounds from his birthweight of 7.5 pounds, he was still one of the larger babies in the NICU. I believed that feeding, if that was indeed the only reason he was still in the hospital, was something that I could work on with him at home. After all, it was not like he was not eating at all, he was just slow at it and would get sleepy. Because of this the NICU nurses kept threatening to place another NG tube in him to finish his feedings that way. Most of the babies in Room E had one. But I was horrified at the thought of them putting another tube in my baby. I saw it as regressing and told them that I would not authorize it. If he needed to learn how to eat I did not see how feeding him through a tube was going to accomplish anything. One nurse even went as far as getting an order from the doctor to do it. The doctor later told me that she reluctantly signed the order but she did not think it was necessary just yet. But I refused to allow it unless it was absolutely medically necessary. And it never became medically necessary so we were able to avoid it.

As a result, my husband Tony and I tried to be the ones to feed him whenever possible. Granted it did take a lot of time and energy and I know the nurses did not have the time to dedicate to just feeding Joey....but I was determined not to let them put another tube in my baby. So my husband and I fed him. I would hold the bottle while my husband tickled and rubbed his feet, held a cold washcloth to his cheeks or arms, all while we both talked to him. Looking back it was probably quite the sight. But it worked. And he slowly began to eat more and more.

Now I wanted to take him home. But no one would tell me when we could do that. When he got back up, past his birthweight, I began telling the neonatologist and the nurses that if the only reason we were there was for feedings, I wanted to take him home by the end of the week even if it meant signing him out against medical advice. At first my demands were met with statements like "it's nice to have goals." So I became more persistent... I told everyone who asked "how we were doing" that I wanted to take him home and if feeding was the only reason we were still in the hospital... I could feed him at home. On February 24, 2009 I asked them to please do whatever they needed to do to clear him to go home.

Finally, on February 25, 2009, I was sitting there holding him when the Neonatologist came in. With tears in my eyes I said "I'm begging you...please let me take my baby home..." I was absolutely exhausted from running back and forth between home and the hospital, and pumping every four hours throughout the night, and ready to let the tears start flowing. And she said "ok... just please don't cry." She had been home the last few days with her own sick child and said that she could not take anymore crying. She then removed his PICC line and said we could take him home so long as I agreed to take him to the pediatrician for follow-up in two days.

I was absolutely thrilled. Here are some pics.

Joey looking more and more alert on February 23 and ( in my mind) ready to go home.


Stopping by to feed Joey before heading to his baby shower (remember he was born five weeks early). We were bummed that he could not join us.



Joey was obviously happy about the PICC line being removed...he's almost smiling.


Ready to go home!!!


Joey looking so tiny in his carseat.

And last but not least my favorite...yeah that's right baby... hold on for dear life... we are going home!!

Your mom and dad my not have a clue what they are doing..it is going to be an adventure for all... but one thing is for sure... YOU ARE LOVED!

Wordless Wednesday (Joey's first time in the sand with his friend Conan)

Joey's Four Month Check-up

Joey had his four month check up yesterday. He now weighs 14 lbs 10 oz and is 25 inches long. He is in the 65th percentile for height and the 75th percentile for weight on the Ds growth charts. (whatever that means) I cannot believe he has almost doubled in weight and has grown six inches since he was born! No more concern about this baby thriving!!! The doctor also said that he was right on target developmentally. In fact she called him a "show-off" when he demonstrated how well he holds up his head while on his tummy. We are however following up with a cardiologist next week to make sure that the small PDA (noticed on the ultrasound of his heart in the NICU) has closed.

Perhaps the best news though is that he is no longer wheezing. We have been using a nebulizer on Joey for the last three weeks which Joey really does not like. Poor baby... he has been such a trooper. Now that he is no longer wheezing we only have to continue with the breathing treatments for another week and then we are done for now.


Joey before church on Sunday playing on his floor gym... his favorite toy!


Joey last week trying out the Jumperoo. He likes it but he only tolerates it for about five minutes right now. We are sure it will soon become one of his favorites when he gets better at holding his head up in a sitting postion.

Joey really is the best baby. He rarely ever cries. When he does it is only for a second and then he stops, usually on his own. He is also sleeping through most the night on most nights. Yay Joey! Did I mention how much we love this baby!

Flashback Friday: Praying for Poop

After he got out of surgery, Joey's surgeon told us that we would not know whether the surgery to correct the blockage in his duodenum was a success until he pooped. As a result, we told all our friends and family, who were eager to help us in some way, that what we really needed them to do was to pray for poop.... And they did... and it worked! A few days later Joey pooped! We were so proud of our amazing little baby! Who knew that poop would be something we would be so excited to see. (we would have to remind ourselves of our excitement a few weeks later when we were cleaning it off the wall and furniture after Joey, and his newly connected bowels, tested his novice parents' ability to keep things covered while changing diapers!)

I was amazed by this baby's resilience and strength and how quickly he recovered after that. I knew then that no matter what the milestone or feat, this baby would continue to amaze us.


2/14/09. When he opened his eyes and looked into my eyes I felt as though he was looking straight into my soul. During the days after his surgery I lived for the moments when he would open his eyes and look at me! I usually would not leave his side if his eyes were open. God I loved and still love those eyes!






We took turns holding him in the NICU (2/14/09). Here is Joey and his Grandma (my mother Beth) who we are very grateful for. She came up to Sacramento from San Diego on the night of Joey's surgery and stayed with us until we were sure that things were going to be ok. During that time she managed to clean our entire house, including things I don't think I had ever cleaned, such as the top of the refridgerator!






Mommy's turn.




Daddy's turn.



Once Joey pooped the the IV's and other equipment slowly started to disappear. Here Joey is on 2/16/09 down to only the IV (called a PICC line that went up his arm and into his heart) in his left arm.





Look ma no more NG tube!

Later I would battle with the NICU nurses who wanted to reinsert a tube for feedings. I was determined not to let this happen and as a result spent most of the next 9 days in the NICU as much as possible, giving Joey his feedings myself so we could avoid another tube.





On 2/18/09 they removed the NG tube that was collecting drainage from his stomach and it was time to finally allow him to try eating. Joey really seemed glad to have that tube out and is seen here much more alert (although Jaundice). In between visits he spent a great deal of time unde the bilirubin lights.





At last, 2/18/09 we were able to feed Joey some Pedialyte from a bottle...he did not like it




The next week would be spent trying to get Joey to eat.

More to come on the rest of Joey's recovery later!

Wordless Wednesday (Joey's 3 month portraits)

Joey's Diagnosis & Surgery

Joey and his daddy on the day after Joey was born.

The morning after he was born (day 1), the on call pediatrician told me that she thought Joey had Down syndrome and ordered a preliminary karotype test. I was devastated by this announcement. For the next two days I asked anyone who saw him whether they thought he looked like he had Down syndrome. I also went back and forth in my head, analyzing his features, seeing it and not seeing it. I ultimately decided she had to be wrong... plain and simple… she was wrong. The morning after (day 2), the Pediatrician also decided that she had been wrong. After examining Joey again she came in and told me that she did not know why she had thought Joey had Down syndrome, as she was no longer "seeing it" when she looked at him. She apologized for being paranoid. I remember being so relieved. The relief was short lived, however, because Joey was still not eating and the nurses began to talk about sending him down to the NICU for evaluation.On day 2, February 10, 2009, Joey would latch onto my breast and fall asleep (again a preemie thing we were told). So the nurses brought me a pump and we decided they would try and feed him some expressed colostrom through a bottle. He took in a little but would spit up what appeared to be almost all of it. The nurses became concerned and told the doctor they wanted to transfer him to the NICU. The Pediatrician did not think that was necessary just yet so we spent a little more time trying to get him to eat both formula and expressed colostrum. At one point one of the nurses who was good at dealing with special needs babies because, I was told, she had a child with Down syndrome, was able to get Joey to take in an entire feeding. I remember becoming quickly annoyed with the suggestion that he had any special needs and informed the nurses that the pediatrician no longer thought he had DS. Her previous thought, that he might have DS, should not be a factor in his care.

The nurses ultimately prevailed and Joey was sent to the Special Care Nursery on day 3. Because he was still not eating during most attempts to feed him, the nurses put in a NG tube so that he could be gavage fed. But before the nurse fed him she used a syringe to see if anything he had been fed previously was still in his stomach. To our surprise, and dismay, it all appeared to be there. Everything we had managed to get him to eat for two days was still in his stomach. Apparently he was not digesting any of his feedings. The nurses informed me that this was not uncommon with babies with Down syndrome. As I had done with the nurses upstairs, I told the NICU nurses that he did not have DS. I informed them that the pediatrician had changed her mind and asked why they kept talking about him like he had DS. The nurse simply put her arm around me, her head against mine and said “oh honey…”

There was apparently no question in her mind that Joey had DS. Rather than question the diagnosis, they questioned why I had been so misled by our pediatrician. This was one of many times (but certainly not the last) that I would break down and sob uncontrollably over the course of the next few weeks. And for some reason, this information was always delivered to me when I was alone (either first thing in the morning before Tony could get to the hospital or late at night after he had gone home to sleep…he was coming down with a cold and I had insisted that he go home).

Despite having just had a c-section, the only time I spent in my room was to eat (which I had to do to produce milk), pump (again needed to do this to get my milk to come in) and get medication (another necessity so that I could make it downstairs to see Joey). I slept very little. Instead I spent most of the time that (Joey was in the NICU and I still had a room in the hospital) in a rocking chair next to Joey’s bed in the NICU rocking my baby.

On the night of, day 3, we now knew that Joey had not been digesting his feedings. I went back up to my room to pump while an x-ray was taken of Joey’s stomach. The neonatologist called me at about midnight to tell me that the x-ray had been inconclusive, but that an upper GI study would be done in the morning to confirm a blockage. They had also gotten the results from the preliminary karotype. I remember hoping desperately that she was going to tell me they had been wrong and that Joey was fine. That was not the way the conversation went. Joey did have Down syndrome. Alone again, I sobbed. There was no one to talk to about it at this time of night. Instead I dreaded the phone calls I was going to have to make the next morning, to my husband Tony, to my parents and my sisters…all of whom had been through the “we think he has it,” and “we no longer think that” rollercoaster ride with me over the course of the past few days.

By the next morning, I had collected myself. I told myself that the beautiful little baby I had been cuddling with over the last three days needed me and I was no good to him lying in the fetal position sobbing in my hospital bed. With that resolve, I cleaned myself up and went back downstairs to the NICU to fact the next set of challenges.

The upper GI revealed that Joey had an intestinal blockage. Joey had apparently tried to tell us there was a problem well before he was born. At my 32 week prenatal appointment the doctor became concerned that I was measuring large and sent me in for an ultrasound to measure the amount of amniotic fluid. The results came back normal, but on the outer limits, and anyone who saw me around this time thought I was huge. In fact I recall a complete stranger coming up to me while I was waiting for an oil change on my car the second week of January. I had just sneezed and rather than the obligatory "bless you" she exclaimed "don't do that again... I am afraid that baby is going to come flying out!" I was huge..... In retrospect, the extra amniotic fluid was likely due to the fact that Joey was not digesting it, as most babies do in the womb thereby decreasing the amount of fluid. At my 34 week appointment the doctor discussed the increased fluid levels and had ordered closer monitoring of the baby. Had I not gone into labor I was to start more intense fetal monitoring that Monday. Joey would have no part of that. His little nails were so sharp when he was born I almost wonder if he had been scratching at the membrane, trying to get out, so that we could get him the help that he needed.

At four days old Joey got the help that he needed. He had surgery to bypass and correct a blockage in his duodenum. When the surgeon was in there he also discovered that Joey had malrotated intestines which was corrected. The surgeon also removed Joey’s appendix and a small pouch in his intestines called a meckeles diverticulum. The surgery took about five hours. It was the longest five hours of my life.

Joey the day after surgery after he was extubated. I did not want any pictures of him with the machine breathing for him.

It would be a few days before I could do anything other than hold his hand and kiss his head. I remember thinking that I would not wish this on my worst enemy. There was nothing worse than not being able to hold your newborn baby.

More to come on Joey’s recovery and the two week stay in the NICU…

Flashback Friday

Stolen from Lisa (who stole this idea from Sheree)





Joey, at four weeks old showing off his one talent....eating!!! Take that NICU nurses (I will explain later how we had to beg them to release Joey from the NICU)!