Car seat or new cat bed? You decide.

Ok, update on the munchkin man.....while he is sleeping :) Zach is now 8 lbs 10 oz. Big boy! He had an eye exam to day & his retinopathy has regressed to Stage 1 (it was stage 3). We will go back in a month for a recheck. His doctor was very impressed with his improvement. Zach has gone from eating every 3 1/2 to 4 hours to eating every 2 1/2 to 3 hours....yikes. He is eating less (slightly), but may be getting ready for a growth spurt. He goes down about 6:30 pm, waking only to eat & then back to sleep. Sometimes dozing as he eats. We continue to work on breastfeeding, & found out that he is not latching quite right, so I am doing some exercises to correct that. He is a very loud sleeper, lots of grunting as he dreams. I have been trying to catch sleep where I can. During the day I wear him in a Moby wrap & he loves it! He is right next to my heart & can sleep if he wants to. I have both hands free. It is also a great workout for my butt & legs! I have to do squats to pick up anything. I found a great website where I can keep track of everything (yes, I am a dorky nurse who loves to chart :) It is good to know how much he is drinking in a day & how much he is (or isn't) sleeping. If you have sent me an e-mail & I haven't responded, I am not ignoring you, I am just tired & trying to get used to having a baby at home. Laura, we'll talk soon & I'll definitely see you in December! Sally the website is www.zacharychauncey.blogspot.com & yes I am sleep deprived :) One good website to check out is One Step Ahead for great baby & kid products. I ordered some stuff to organize his closet & so far I love it. My other friends with kids use the catalog for products also. Sorry everyone else, just needed to use this time to get out some responses ;) Oh yeah Marjan.....I have the money shot if P Daddy wearing the Moby with Zach in it! How much is that worth?

Sleep!

Zach is doing fine at home. we are slowly learning what he needs to be able to sleep. He didn't get enough sleep yesterday, then went down at 5:30 pm. I woke him at 4 hour intervals to eat. He has his fussy times, but not really all that bad. We are trying the 5 S's, swaddling, side lying, shhh'ing, shaking (very, very gently) & sucking. I try wearing him during the day so that he has the contact that he needs. He has been asleep for 3 hours right now, so hopefully when he wakes up to eat he can have some play time.

I have been reading books on baby's sleep (I know I should have been reading them while he was in the NICU), they say do whatever it takes to get them to sleep until they are 2 months old. He will be 7 weeks adjusted on Tues. One of the books also called the first week home "Hell Week". Oh well, just a few more days.

He has started breastfeeding again, but not as well as he was doing in the NICU. We'll keep working at it. My frozen breast milk from July is unusable as it smells soapy. An enzyme in the milk breaks down the fat & changes the taste. It is not bad, he just won't drink it. I tried mixing it with fresh, but had to throw some out. If I freeze anymore, I will probably scald it first & that will stop the enzyme. I am making about the same as what he is taking in a day right now, so I will try to increase my production with him breastfeeding more. It is so hard knowing how hard I worked to get that milk & then have some of it be unusable. Oh, well, at least I can still breast feed him. & use the fresh milk that I make.

He still has to get bottles as we are fortifying the breast milk with extra calories to help his weight gain & also for extra minerals for his bones.

Discharge!

So they are talking the "D" word now.........Discharge!!!!!!! Zach may be coming home today or tomorrow, Yikes! I am just waiting for them to do rounds.

He has been doing very well this last week, they have slowly increased the volumes of his breast milk after surgery. He has done very well & they are now fortifying his breast milk with formula to increase the calories & he can have as much as he wants.

He has had some high blood pressure after surgery, they got a renal ultrasound yesterday, so today we'll find out if we have to do anything besides monitor it. We had some issues with his kidneys earlier, but we only found that out when he had an ultrasound for another reason.

It will be great to be home, but also very different. Zach was born 20 weeks ago. I have been at the hospital every day except for 6 days. I can't remember the last time that I had a full day at home & now I won't be leaving much except to go to the doctors.

So, now we need to talk about visiting. As some of you may have heard ;) they are anticipating the worst flu season in a very long time. Zach is too young for flu vaccines & while I am giving him my breast milk, he did miss out on the antibodies that usually get transferred from Mom to baby in the third trimester. Also, young babies are at risk of another virus (the RSV virus) that is usually a mild illness in children, but can be very serious in small babies. The doctors are saying that we are not allowed out with him anywhere that there are groups of people.

I know that a lot of people want to see Zach now that he will be home, but we will have to limit the number of visitors & there are some rules:

For those of you who plan to visit us over the next few months, and even if you are not, please take a few minutes to read this letter.

We want to start by saying thank you for the outpouring of support we have received from everyone. So many people have done so much for us, and every bit of help we have received truly is appreciated. We are experiencing the biggest challenge of our lives, and we’re lucky to be surrounded by so many family members and friends who have shown us so much love and support.
We’d also like to share an important topic that we recently discussed with our babies’ pediatrician. If you are not aware of RSV, respiratory syncytial virus, you are among the majority. Most people have not heard of RSV, even though nearly every child has had the virus by age two. For full-term babies, RSV typically is not any worse than a common cold, but for preemies, the virus can be quite different. Babies born earlier than 36 weeks are at the highest risk for serious complications like pneumonia, bronchiolitis, and other sometimes fatal complications. Zach was born premature and had a very low birth weight; these are among the highest risk factors for contracting RSV and developing serious complications.

This website offers a great visual comparison of a preemie’s lungs compared to the lungs of a full-term baby:

http://www.preemiecare.org/LungsTrees03-4.pdf

Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Zach safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands and up to twelve hours on objects, and it spreads very easily, especially from child to child. Studies have also shown that infants pose an even higher risk of spreading RSV to others.
You may ask, “Can’t he fight it off and build up his immune system? Kids need to get sick, right?” The simple answer is NO. Since Zach was pre-term, he did not acquire the necessary immunities to fight off infection.
If he contracts RSV, he could be hospitalized and develop serious complications.
We’ll be asking our visitors to follow a few guidelines to help prevent Zach from contracting RSV or any other illness.
We ask that all visitors do the following:
1. When you arrive, please wash your hands and use hand-sanitizer as needed before touching the baby.
2. Please, if it is possible, get a flu shot.
3. Please refrain from coming over if you are currently sick and have not been symptom-free for at least 7 days, if you live with someone who is sick, or have been in close contact with someone who is sick.
4. If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting, as a preemie’s lungs are very sensitive to smoke. Most RSV sites recommend against passive smoke exposure.
5. If you are parents to a baby or toddler, please refrain from bringing them to our house during RSV season.

Unfortunately we will not be attending many events during RSV season. Our goal is to make it through this and the next RSV seasons without Zach contracting RSV or any other serious illness. His lungs are still very fragile until they are 2-years-old.
Please understand that this letter is not meant to offend anyone, just simply to provide an explanation. We hope you understand, and we appreciate your help keeping Zachary safe. We are also providing several resources with additional information about RSV below.

http://www.preemiecare.org/rsv_resourceshtm.htm
http://www.preemiecare.org/rsvfaq.htm
http://www.preemiecare.org/rsv2.htm
http://www.mostonline.org/preemieBB/viewforum.php?f=82
Love and best wishes to all!

Ok, time for an update, but it is a long one :) It has been a very long week. We got used to just coasting along in the step down nursery, so it was an adjustment to be beack in the critical care section again.

Friday I got a call saying "he's fine but don't be concerned when you come in" ha ha! I was at a cardiology conference, but left after lunch. Zach had some more low heart rate events, enough to start concerning the doctors (& nurses). He had one of his "primary" nurses that day, so at least she knew his baseline. I got there & he was hooked up to a 12-lead EKG to check his heart rhythm, they had done a bedside EEG & were doing an official EEG to rule out seizures, they did a head ultrasound to check for bleeding, & a cardiac echo to see if his PDA had reopened. They also wanted to do a lumbar puncture but didn't have a good enough reason to do it to convince me that it would be necessary.

All of his cultures have been negative for infection & all of the tests have been normal. So, on Saturday they decided to take out the breathing tube as he was doing fine breathing without much help from the ventilator. Phil & I were both there. He did somewhat ok & then had really low heart rates again (I saw the number 12 on the monitor). They had to give him atropine & a special breathing treatment after the breathing tube came out as he kept having that low heart rate. One of the Nurse Practitioners came back from a delivery saying "I heard that they were coding a baby in here" she was talking about Zach! The attending doctor said "well, if you didn't know the history of this baby you would have coded him, but he is fine now" yikes!

So fast forward to today, Zach is back to normal although he might still be seeing some pink elephants. He was on pretty high doses of morphine & versed. They stopped the morphine drip yesterday & came off of the versed today. It was probably good that he had the versed yesterday as it made him pretty mellow & not care that he wasn't getting to eat. He started pooping today, so they started him on Pedialyte today & will progress to plain breast milk tonight. He only gets 5 cc at a time (he was taking 110 cc of breast milk before surgery), I did hear he wasn't very happy last night. Bless his Primary nurse Christie!

His other primary nurses Marjan (his first girlfriend) & Michelle have already warned him not to pull these shenanigans again, hopefully he will listen! He was charming the pants off of everyone this afternoon, he was totally checking everyone out & being his nosy self. He loves to know what is going on!

I don't know if it was the surgery or the meds, but my little man started socially smiling & cooing! It is amazing to see & hear. He is right on developmentally for his 5 weeks adjusted age. They will slowly increase his feedings to make sure that all is well inside & when he is on full feeds & gaining weight he can come home!!!! Probably by next week!!!! I am so happy, so thankful & so blessed. I remember the days when I didn't know if my baby would ever come home. He is an amazing little guy & he has had amazing people getting him to where we are now.

The staff in the ISCC at UCSD have been wonderful. They have taken amazing care of Zach & of us. They have been there with a shoulder for me to cry on many times & have cried with me at times. The right people have been in the right place at the right time. I am so thrilled that they get to see how amazing Zach is doing, because without them he would not be here, they have given us our son.

P.S. His primary nurses are sooooo happy he doesn't have a poop bag falling off 3 times a shift anymore ;) I am happy he doesn't smell like Grandpa Jerry anymore!